Yolanda G. Harris - 11/29/00 12:21:42
My Email:yglacey@opm.gov
Where are you from?: Richmond, VA
How did you find us?: site was sent to me
We hope that our story has helped you!
joy chafetz - 12/13/00 19:11:15
My Email:joyful120@hotmail.com
Where are you from?: Boston
How did you find us?: search of infantile spasms
Comments:
Yolanda G. Harris - 11/29/00 12:21:42
My Email:yglacey@opm.gov
Where are you from?: Richmond, VA
How did you find us?: site was sent to me
Comments:
This site was sent to me by Bill and Jennifer's grandmother. This is a wonderful site. Bill and Jennifer, like my son (who is 3 years old), have gone through a lot. We are blessed to have very strong children.
Scott DeFreese - 11/27/00 21:42:09
My Email:defreesassoc@hotmail.com
Where are you from?: Pell City, AL
How did you find us?: Search Engine
Comments:
We had a very rare case with both of our twin boys developing IS, both at 8 months. After much testing, there was a funded Vigabatrin study at our local Childrens Hospital. After about 2 weeks, Hunter stopped having spasms. After about 3 weeks, Tanner st
pped. They continued taking Vigabtrin for about 6 months, decreasing the dosage as we went. They are now 3 years 7 months and have been spasm free since they first stopped. It was definitely the most life changing experience we have ever encountered. With
many prayers answered, we feel very blessed. Thank you for having such a place where other parents who encounter this can find hope and encouragement from others who have already experienced this in their lives. God Bless, Scott DeFreese
Helen Westwood - 10/25/00 14:57:28
My Email:mmmr7haw@stud.man.ac.uk
Where are you from?: Manchester, England
How did you find us?: Search on pyridoxine
Comments:
Very interesting article. I am a medical student and am researching information on pyridoxine dependency in relation to an 18 month old patient with cerebral palsy and recurrent seizures up to 50 times per day who has responded to pyridoxine therapy and
s now seizure free.
Annette koshti-Richman - 10/24/00 21:37:31
Where are you from?: England
How did you find us?: Searching the web
Comments:
Annette Koshti-Richman - 10/24/00 21:35:47
Comments:
Robyn Owens - 09/27/00 11:10:56
My Email:NJgirl1001@aol.com
Where are you from?: New Jersey (Originally)
How did you find us?: Luck
Comments:
I would like more info please---I am desperate and this may be my son's answer
- 09/13/00 19:23:12
Comments:
Jill - 09/12/00 20:36:09
My Email:duncjunc@att.net
Where are you from?: New York
How did you find us?: our daughter
Comments:
Thanks for the great explanation of pyroxidine deficiency. My brother Jack's daughter has been diagnosed with it in Michigan, so it was good to have such a clear explanation.
Alice Khatchigian - 09/09/00 11:32:15
My Email:alicekhat@optusnet.com.au
Where are you from?: Sydney
How did you find us?: by chance
Comments:
Your story is highly recommended reading.Please keep us up-to-date on new developments
Phyllis Reed - 08/31/00 01:48:58
My URL:http://www.linkedforlife.com
My Email:phyl_reed@hotmail.com
Where are you from?: Pickering, Ontario Canada
How did you find us?: Dr. Gospe's page from a friend
Comments:
Bill and Jennifer's story really hits home.
I have a son that is in a very similar boat.
You said it all so well. I am in the process of trying to get the doctor to do a B6 test. One feels so alone when going through all of this.
You are a very strong parent and should be proud of your accomplishments. Well done!
mamamadonna - 08/19/00 13:43:55
My URL:http://c.s.com
My Email:mamamadonna
Where are you from?: nashville,tenn,
How did you find us?: in is section
Comments:
Deanna Ames - 08/09/00 14:23:31
My Email:madaeline@yahoo.com
Where are you from?: Charlotte,NC
How did you find us?: Egroups-search of infant spasms
Comments:
Our daughter has had "repetative startle "sesions since June 24th, 00, two days after her 6 month visit-DTP shot, pneumoccal vaccine and 1 week after I weaned her completely from breast milk-I am still producing though so I may try to give her a feeding o
two and see if they go away. We just had her MRI yesterday. She was born with a Congenital Heart Defect-but doing WONDERFUL since her OH surgery in Jan.
Her sessions are "predictable"-though. SHe will have a minimum of 3 per day-her first is between 5am and 8 am, the next is between 5pm and 8pm and she may or may not have one at 11pm or so. They last 2-5 minutes and are 1 second each with 1-30 second in
ervals. I have noticed the pattern changing abit. She is only fussy when she is hungry and has developed normally for her age-infact she sat up for the first time yesterday pm after her MRI! SHe is alert and sometimes pissed during her "sessions" but li
es it when I comfort her and when they are over she is "giddy" laughs a bunch or acts as if they did not happen.
I am so glad I read this web page. I dont know what we will find, but I am crossing my fingers that my baby girl doesnt have anything more serious than a B6 deficiency/dependancy-I could not bear it if there were brain damage too!
Thanks again for the info. Please feel free to email me
Deanna Ames
Madeleine's mommy
Daina Blumhagen - 08/07/00 15:27:30
My Email:Daina.Blumhagen@lmco.com
Where are you from?: Orlando
How did you find us?: Yahoo search
Comments:
I am the guardian of a 2 1/2 year-old spastic quadriplegia. He is my great nephew and I have
had him in my home for about a month. He appears to have seizures upon falling asleep, but because
he is not verbal or ambulatory, I think his condition has been overlooked. After 4 sleepless nights this weekend, I took him to the ER; they ordered a CT scan and an EEG. I am a little worried that both will come back with no results, so I am particular
y interested in your article as one to ask questions about. When I got him initially, I had begun to give him a pedriatric liquid vitamin, polyvisol, because I was unsure of just how much nutritional value he was getting. If my instincts are correct, th
added vitamins couldn't hurt until someone makes a correct diagnosis. I am printing off your article in the hopes that even if it doesn't help Treveious, it may help another child somewhere.
jackie - 08/06/00 21:30:15
My Email:www.judgejacki@aol.com
Where are you from?: chattanooga
Comments:
Christine, I never ceased to be amazed at Bill and Jennifer's story. You are to be so commended for hanging in there. It's hard to believe their story, and I was there as a witness. God bless Bill and my goddaughter. Jackie
James P Pesek - 07/24/00 19:46:23
My URL:http://jampesek@alltel.net
Where are you from?: Cleveland Ohio
How did you find us?: Pyridoxine
Comments:
tonii king - 07/09/00 21:57:07
My Email:tonii22@aol.com
Where are you from?: ga.
How did you find us?: looked under pyridoxine.
Comments:
I have tried everywhere to find some kind of information on this. My son is 6mo., 3mo. ago my son had a seizure and they said he has b-6 dependency. He has been free of seizures for 3 mo. Last week he had two seizures two days apart. Now they say if he ha
one more they are putting him on phenobarb. They only have him on 50mg.per day. How can you tell when they need more. My doctor want give any answers. They say they don't know enough aboutit.
Christi Kerr - 07/02/00 20:11:51
Where are you from?: Tulsa, OK
Comments:
My daughter was diagnoses with infantile spasms at 3 1/2 months old. She has been a little miracle. She responded immediately to treatment. We started giving her ACTH shots 2 days after the diagnoisis. At that same time our neurologist recommended we
tart her on B6. She only took the ACTH for 4 weeks (that includes the 2 weeks of weaning). She has never showed any delays. She is 10months now & still taking 100mg a day of B6. Our doctor is in no hurry to wean her off of it because he feels this may
be helping. The plans are to wean her off at 15months. If the seizures return we'll have our answer. Thanks for your info. - it's so helpful!
sandra r tolkkinen - 06/05/00 21:10:30
My Email:estolkkinen@yahoo.com
Where are you from?: plymouth,minnesota
How did you find us?: daughter did
Comments:
What an informative article! My daughter and her husband are now experiencing the same symptoms as you described with their 5-mo. old dtr. Luckily, they are working with a pediatric neurologist along with 2 other ped. neurologist consults who have diagn
sed her as having this at 3-4 mos. old. My dtr and her spouse have read your story and appreciate your input. I cannot tell you how thankful I am to you for all your intense efforts in finding the diagnosis and treatment - and for documenting same for ot
er's benefit!! With prayers that all continues to be well for your children --my granddaughter is now on intense b6 therapy (dosage being upped as all labs/mri/eeg/etc results were completed and consults, dx confirmed. Thank you again for your input for
our benefit!
DONNA MCCRACKEN - 06/03/00 16:56:10
My URL:http://C/S.COM
My Email:MAMAMADONNA
Where are you from?: NASHVILLE,TN
How did you find us?: INFANTILE SPASMS
Comments:
I AM GONNA PRINT THIS AND GIVE IT TO MY SON MAYBE IT WILL HELP WITH MY GRANDSON WHO HAS INFANTILE SPASMS. I DONT LIKE ALL THOSE PILLS THEY ARE GIVIN HIM. I WORRY ABOUT DEPENDENTCY& LIVER PROBLEMS HE IS 11 MO. OLD DONNA
Joni Ramberg - 06/01/00 22:32:09
My Email:jramberg2000@yahoo.com
Where are you from?: MI
How did you find us?: searched Infantile Spasms on internet
Comments:
Our Mariah was diagnosed w/infantile spasms at 4 months, she was put on Klonopin and Vit. B6, the spasms disappeared for two weeks and then the came back at a mild rate, but gradually got worse. My husband and I had read your story and one of the first q
estions we asked the neurologist was "could this be a vit. b6 deficiency?" and he said he didn't know of any way to determine it, but knew that there had been some recent studies done so he said he'd look into it. After the initial blood/urine tests came
back normal, the amino acid test showed borderline normal and he prescribed a slightly different blood test, which apparently showed him that she does have the very rare case of Vitamin B6 deficiency. We just found this out yesterday, with a call from th
neurologist. So she is currently on 400mg of Vit. B6 and 1.5mg of Klonopin per day. It is our prayer that the Vitamin B6 increase (from 200mg/day) will be effective -- he said he will go as high as 1000mg/day if needed. Mariah is 5 months old and we a
e praying for control of these spasms as well as for normal development. She is such an angel! Thanks for your story, I believe it proved to be helpful in our case!
- 05/31/00 15:48:46
Comments:
Stella Devenney - 05/24/00 21:25:17
My Email:sdevenney@reginahealth.sk.ca
Where are you from?: Regina, Sask. Canada
How did you find us?: brittanica
Comments:
My grand-daughter was diagnosed pyridoxine dependant at two weeks of age. She is developmentally delayed.At two years of age her vocabulary is seven words. Wanted more info. from families living with this and practical help. She is presently receiving 70
gs pyridoxine b.i.d. What is the usual dose?
ada - 05/21/00 12:28:01
My URL:http://members.visi.net/~p2sc005/index.html
Where are you from?: USA
How did you find us?: Jake's Page
Comments:
My daughter is twenty-five, living with Lennox-Gastaut Syndrome since five months. To learn more about LGS, please visit Hannah's Pages.
Best wishes,
~ada~
Dalia Rodriguez - 05/18/00 18:00:24
My Email:cuqui66@aol.com
Where are you from?: Cuba (now in USA)
How did you find us?: Internet
Comments:
I have a 6 months old grandchild who has been suffering seizures since May 3. Now he is under treatment and is responding. He lives in Cuba and it has been very difficult to obtain the Vigabatrin. They were able to obtin some through the Church (from d
nations) but I'm not sure they will get more.
Thanks for your Storyy. I gives me some hope.
Carlos Sánchez - 04/24/00 20:07:32
My Email:sancarlin@starmedia.com
Where are you from?: Chile
Comments:
Helloˇˇˇ
My name is Carlos and I Chilean.I speak and writte very bad english.
Un SALUDO GRANDE A TODOS, RECUERDEN QUE LA GRANDEZA DE LAS COSAS ESTA EN COMO LLEVAMOS NUESTRA VIDA CON TODAS SUS DIFICULTADES Y PESARES
QUE DIOS LOS BENDIGA.
good bye.
Diane Shell - 04/04/00 03:41:53
My Email:ericndiane@myavista.com
Where are you from?: Wyoming
How did you find us?: through my patient's parents
Comments:
I am a speech therapist trying to find out all I can about this. Thank you for sharing your story with me... She is the first child I've ever worked with who had this diagnosis. She is wonderful. Thank you again.
Joey Miller - 03/24/00 04:24:17
My Email:Joeymiller@prodigy.net
Where are you from?: Texas
How did you find us?: searching infantile spasms
Comments:
Thank you so much for your story. My daughter was diagnosed with infantile spasms in Aug 99. We tried B6 in Jan. but could not get it down her effectivly. We crushed it and put it in her bottle but not much made it into her system. After reading your arti
le I tried again, this time crushing it and then adding a little juice in a dropper then forcing it down her. Within 7 days her seizures stopped! It has been almost 3 weeks now with no seizures. She just turned 19 months old but is at about 1 yr. for lang
age and 1 ur. to 16 months for fine motor skills and cognitive skills. That was a week ago. Since being seizure free she has learned to throw and roll a ball, Put her music blocks back in their slots and so many more things. We are so pleased. She goes ba
k to her neurologist in early April. She is still on Depakote for now. Her attention span is so much better. I pray that B6 is her cure, and that she continues to get better. She has a new baby brother. The day he was born was the first day she was seizur
free. Thank you so much!
Linda Hargrave - 03/24/00 03:38:02
My Email:harve@northnet.org
Where are you from?: Madrid, New York
How did you find us?: childhood epilepsy support group, someone had posted your website
Comments:
I also am constantly wondering if there is something else we can do for our daughter. She has partial focal seizures with secondary generalized and typically has 20 minute seizures. She has gone status twice. I also think she may have had a seizure in
tero, during labor. She started with seizures around 2, and I stopped breastfeeding then as she is allergic to milk. She is on 3 meds as the last time we tried to wean off mysoline, she went status. I have been checking out cranial sacral therapy also.
She had meconium aspiration and didn't breath on her own for 15 minutes although her heart and color remained good throughout. They had trouble tubing her. Took 3 doctors. We feel lucky after reading posts from others on the childhood epilepsy site.
icaela has weeks and months without seizures. But I still would like to get her off all the meds if possible. And a vitamin! We see her doctor in April. I definitely will bring it up. Thank you for the info and sharing your story with all of us who a
e looking for answers. Linda Hargrave, mom to Micaela, 4 yrs.
Sharon Roth - 03/22/00 15:40:35
My Email:sroth@enter.net
Where are you from?: Allentown, PA
How did you find us?: Search of Alta Vista
Comments:
Your article was very informative. Thank you. Our 4-week old granddaughter (Alyssa) just started being treated with Vitamin B-6. The doctors are not sure if this is it or not. She started having seizures about 8 hours after birth. They treated her wit
Phenabarbitol, but she still continues to have seizures. She's been in two hospitals four times in her short life. She's in at the present time, now being treated with B-6 (100 mg. 2x a day) and also Phenabarbitol.
Silvia - 03/18/00 04:33:26
My Email:bonelli@cvtci.com.ar
Where are you from?: Argentina
Comments:
Thanks a lot. If only I knew it before...
Sorry, my english is very bad and I can't said anymore.
Mary Ruth Sanborn - 02/28/00 22:52:22
My Email:Wsurfobx@aol.com
Where are you from?: NJ
How did you find us?: IS site
Comments:
I am so happy for your family. What an incredible story! Thank you so much for sharing it with us.
Tammy Thackrah - 02/27/00 19:28:12
My Email:tammyt@citlink.net
Where are you from?: Johnstown, NY
How did you find us?: Looking up info on seizures
Comments:
Your story was very interesting. I have a son who has a rare genetic disorder. SCAD is the short term for it. Basically, the more fat he consumes, the more he looses weight. The only thing in your story that relates to my son is the bright light probl
m. He is very light sensitive. He had seizures when he was about a year old. Had normal EEG's. He has been off of pheno for almost 10 months and seizure free, but still, no one can tell why he had them. Can you give me any other information concernin
the light sensitivity issue. It would be greatly appreciated. Thank you and God Bless.
Jennine - 02/09/00 21:28:34
My Email:jjsaunders5@home.com
Where are you from?: Langley, B.C. Canada
How did you find us?: search on B6
Comments:
I appreciated you sharing your experience. Do you know of any studies done with seizures brought on by brain injury later in life?
Tina Kadisak - 01/11/00 05:50:42
Where are you from?: Woodridge, Il
How did you find us?: search engine
Comments:
My 6wk. old daughter had seizures since the day we brought her home from the hospital. All of the tests show she is a healthy baby. For now she is on B6 and phenobarb, and has been seizure free. Though we have no exact diagnosis, her neurologists thinks i
could be B6 dependency. This baby has had every test in the world more than once! We hope thats what it is.
Carmen Villela - 01/09/00 19:03:08
My Email:carmenvillela@allways.com.br
Where are you from?: Brasil
How did you find us?: In the internet
Comments:
I liked this page. Thank you
Ole Navntoft - 01/06/00 10:56:03
My Email:olnape@hotmail.com
Where are you from?: Denmark, Europe
How did you find us?: Search the net
Comments:
I've read your story with tears in my eyes. And with hope for my 15 month old boy Julius.
Tomorrow he starts with pyridoxine at a Hospital for Epilepsy-treatment in Denmark. Until now we no diagnosis and no medicine so far have done any good. We all hope our best...
ole
Cheryl - 01/05/00 18:26:07
My Email:cherylabarrett@hotmail.com
Where are you from?: Saskatchewan
How did you find us?: searching internet
Comments:
FINALLY!!!!! I found a site with information about Pyridoxine Dependent Seizures. My 3 1/2 year old daughter was diagnosed with PDS at 12 months of age. I've searched and searched and now have found something. Thank you very much for sharing your story
br>
Arcenia Haltiwanger - 12/27/99 22:34:54
My Email:LANDO57@WEBTV.NET
Where are you from?: BATESBURG,SC
How did you find us?: SURFING
Comments:
Have an 8 month old girl haveing spasms. Thanks
checchinato - 12/19/99 11:25:30
My Email:deziderio@excite.com
Where are you from?: brazil
How did you find us?: i am a fisician
Comments:
thank you ,I have learned with you .I am a ophathalmologist.
Toni Morse - 12/02/99 02:04:17
My Email:rmorse@gtn.net
Where are you from?: London, Ont. ,Canada
How did you find us?: Web pages
Comments:
I am a mother of three boys. My youngest son,
Joey, 9 years old, has been diagnosed with Pyridoxine Dependency. He had been on a low dosage for several years. His speech has always
been delayed. In the last two years he has been prescribed 125 mg. He is 59 pounds. His speech
has improved and his grades have too. Since reading your story, I have started him on 150 mg and give it to him twice a day, 100 mg in the
morning and 50 at supper. I have been unable to find the time release B6. There is only the complex vitamin B's in the time release. We may take a trip to the States (Port Huron)and check it out there. For a long,long time, I thought Joey's condition
as very rare. I know it still is but through the Internet and reading everyones story, I don't feel as anxious about wondering what the future will bring. You must be having your Wednesday chat.
Talk to you later.....Toni
Toni Morse - 12/02/99 01:57:49
My Email:rmorse@gtn.net
Where are you from?: London, Ont. ,Canada
How did you find us?: Web pages
Comments:
I am a mother of three boys. My youngest son,
Joey, 9 years old, has been diagnosed with Pyridoxine Dependency. He had been on a low dosage for several years. His speech has always
been delayed. In the last two years he has been prescribed 125 mg. He is 59 pounds. His speech
has improved and his grades have too. Since reading your story, I have started him on 150 mg and give it to him twice a day, 100 mg in the
morning and 50 at supper. I have been unable to find the time release B6. There is only the complex vitamin B's in the time release. We may take a trip to the States (Port Huron)and check it out there. For a long,long time, I thought Joey's condition
as very rare. I know it still is but through the Internet and reading everyones story, I don't feel as anxious about wondering what the future will bring. You must be having your Wednesday chat.
Talk to you later.....Toni
Kevin - 11/23/99 03:23:00
My URL:http://geocities.datacellar.net/getfreebies/
My Email:dx_golf@email.com
Where are you from?: NV
How did you find us?: From an Adoption site
Comments:
I am in the process of getting approved to adopt 2 wonderful boys. They have problem, but that is fine, I am looking forward to helping them learn to deal with them and help them learn that they are loved, no matter what, and also that bedwetting is not
crime, and that it will not upset their new daddy!
chris jary - 11/07/99 19:37:46
My Email:chris@jary.karoo.co.uk
Where are you from?: Hull England
How did you find us?: surfing
Comments:
I found your experience very interesting. I am a General Practitioner in England and your advice to keep questionning is very well made as a primary care physician we often have to be the patients advocate when referred to secondary care.
Stacy McGill - 10/31/99 04:10:34
My Email:StacyM@web.com
Where are you from?: Los Angeles
How did you find us?: Yahoo,Medical,Pediatrics,Infantile Spasms
Comments:
Subj: Infantile Spasms
Date: 10/30/99 8:26:56 PM Pacific Daylight Time
From: Tdub2u
To: woodstitch@foxinternet.net
Hello: My name is Stacy. My son's name is Seth. He was diagnosed with IS also. Where do I begin? Seth was diagnosed in late August 99. I was on vacation and I noticed head dropping and a startle activity as if you had walked up behind him and scared hi
. He would shake and quiver for about 10 seconds. I was petrified. I immediately too him to the nearest hosp. The DR on duty saw the spasm and said it looked like Focal Motor Seizures. SEIZURES I said. Oh no What did I do, was this my fault. "No" they
told me. They did tell me that Seth was in no immediate danger, and that the seizures would only affect his extremities. So we continued on our vacation. If I new then what I know now | would have come home immediately. We came home from vacation and
took Seth to his DR. I told DR what the DR in AZ. told me and he immediately said lets do an EEG. I went on the Internet in the mean time and stared researching IS. I thought he had the disorder called Tuberous Sclerosis. Thank God that was not it. I
is some times caused by the underlying disorder called TS. TS is were tubers (calcium tumors) form on the brain W/ an ash leaf. Seth had a CT scan and there are no tuber nor did we find the ash leaf. Thank GOD! But I still have the Q Why does he have
spasms? what caused this disorder? The DR's could only say 1) his brain did not form properly, 2) lack of oxygen at birth or, 3) there is just no reason why people have seizures. Well, I had a very hard labor 36 hours, dry, lot of drugs. I don't doubt
t wasn't #2. Well, now that Seth was diagnosed I was referred to a Neurologist. She had another EEG ran and confirmed IS. DR said that we should treat Seth with ACTH. It was not an easy drug to get through my medical insurance pharmacy. It was on nati
nal back order. I had to apply through NORD (National Organization of Rare Disorders) Seth's EEG Hypserythmia was a severe case. I received the MEDS in one week. That how long it took to apply. The DR wanted me to give the shots twice a day. ME I sai
, no way I am petrified of needles. His Pediatrician made arrangements for me to go to the PEDs dept at the hosp. The first two weeks were hell! AM + PM shots. The spasms slowed down but did not stop. He was receiving .4 ML at first. DR up'd the dos
and said to continue for 4 weeks. All of a sudden that 3rd week the spasms stopped. After the 2nd week of shots DR ran another EEG. The Hypserythmia had improved. ACTH was working. At the 4th week Seth was out of Hypserythmia. I cried so hard the DR
was crying with me. Seth is now 8mo old. We have him on Phenobarbital to control any Epilepsy that he might have. I have not seen a sign of the IS since. I would really like to keep in touch with families that know what I have been through. Pleas writ
or keep in touch. Seth O'Neill Peterson, 1656 W. 257th Street #4, Harbor City, CA 90710, Email me At StacyM@WEB.COM
cathy - 09/19/99 11:22:36
Where are you from?: atlanta
Comments:
Thank you so much for sharing your story. My daughter has been having seizures, she is 8 months, and we have not yet been given any diagnosis. In fact, they just wanted me to sit around and observe her for a while. how long is a while?? I think it wa
because they question whether or not I know what I am talking about. I am so sick of them asking me " are you sure she is having seizures?" I am a RN and think I know what a seizure looks like, and irregardless i know what I am seeing is not normal. S
, I know what it feels like to question your thoughts and feel like you are just a paranoid mother. So, what a blesssing to read your story and certainly it is inspiring me to even be more assertive in the pursuit of her diagnosis. Thank you so much fo
telling your story. and God Bless you and your children.
Paul Clark - 09/09/99 06:04:50
My Email:paulclark.porky@virginnet.co.uk
Where are you from?: U.K.
How did you find us?: Web Ring
Comments:
Thank you for a great insight into the problem.
My son is 4 months old and has had spasms now for about 3 weeks , they haven't ceased completely yet , he is on prednisilone at present but is going to be tried on Pyrodoxin in the next couple of days if we don't get any better results.I'll let you know
ow he gets on.
CELIA BOSCH DE BUENDIA - 09/09/99 04:23:23
My Email:bbuendia@prodigy.net.mx
Where are you from?: TABASCO, MEXICO
How did you find us?: SEARCHING IN ALTAVISTA SOME SYNDOMES
Comments:
I«m Mariana«s mother she is 21 years old and she doesn«t has a diagnosis yet, I coodinate 6 schools of special education and we have a little boy with West Syndrome, another with Dandy Walker Syndrome, and I was seeking more information about this syndrom
s. I did not know about the Vit. B6 for the improve of the seizure in this kind of syndromes.You have two lovely children and I congratulate you about the enormous effort you have done for your kids.I keep forward to hearing from you.
Celia
Angela Kidd - 07/30/99 20:32:52
My URL:http://www.2endure.com
My Email:waltmitty@hotmail.com
Where are you from?: KY
How did you find us?: "Asia's story" guestbook
Comments:
I enjoyed your comments about the things you've learned along the way. I especially enjoyed the quote that it is not rare if sitting in your chair. I am an RN, but the physicians failed to listen to my concerns. It warms my heart to see a physician commen
ing the mother for knowing something. Our child was eventually diagnosed with a Urea Cycle Disorder, one of those "rare so it couldn't be" disorders. My husband and I were the ones to figure it out, so your comment that we should never quit questioning is
also on target. Had we accepted what we were told, our son would have died. I commend you for spreading the word about another "zebra" disease, in a world where we only see the horses.
Denise Cripe - 07/29/99 14:21:33
My Email:DCripe1959@aol.com
Where are you from?: Seattle
How did you find us?: fellow chat friend
Comments:
My daughter has seizures, for 10 years now, no ever mentioned this before. Will talk to her neurologists about it today. Thankyou, gives us a new door to try
Sharon M - 07/25/99 00:04:09
My Email:HAMRDGN91@aol.com
Where are you from?: Pittsburgh, PA USA
How did you find us?: search in web IS
Comments:
step grand son on acth 2 wk bp very high
2 seizures last night, takes phenobarb tegretol prednisone too also has oral facial digit syndrome, no one ever said anything about vit b6
on 2nd neurologist. poor insurance reimbursement
we are desparate and they close to bankrupt @ 6 mo any suggestions for support groups appreciated. any resources, his bp 138/90 wt up just started lasix too. thanx
sorry if i rambled
- 06/21/99 00:09:47
Comments:
Darci Hoehne - 06/19/99 20:49:43
My Email:AMmom247@aol.com
Where are you from?: Los Angeles, California
How did you find us?: IS email list
Comments:
Thank you for sending me you link. I am going to have a very long talk with our Neuro that we are going back to. I'll let you know what comes of it on the e-mail list. Andrew is four and is currently taking 1125 mg depakote, 600mg of tegretol, and 8 mg
f gabitril and day. We have been seizure free for almost six months but time periods between breakthrus seento decrease each time so we are on alert.
Thanks again
Darci
luce cyr - 06/06/99 22:06:26
My Email:bill_donahue@hotmail.com
Where are you from?: waltham mass
How did you find us?: friend
Comments:
my son is 2months old and was diagnosed with pyridoxine dependenc at 3 days old. i want to talk to other parence of children w/ this problem. not knowing what to expect is the biggest fear.
luce cyr - 06/06/99 22:05:54
Where are you from?: waltham mass
How did you find us?: friend
Comments:
my son is 2months old and was diagnosed with pyridoxine dependenc at 3 days old. i want to talk to other parence of children w/ this problem. not knowing what to expect is the biggest fear.
luce cyr - 06/06/99 22:05:44
Where are you from?: waltham mass
How did you find us?: friend
Comments:
my son is 2months old and was diagnosed with pyridoxine dependenc at 3 days old. i want to talk to other parence of children w/ this problem. not knowing what to expect is the biggest fear.
luce cyr - 06/06/99 21:55:36
Comments:
Isabel - 05/20/99 14:31:51
My Email:iapgui99@hotmail.com
Where are you from?: Vitoria - SPAIN
How did you find us?: IS Mailing List
Comments:
I have read Bill & Jennifer´s story and I would like to convey my admiration for you, for having struggled and searched for the right answers.
I have a fourteenth months old daughter, Irene, who was diagnosed with IS when she was six moths old (in October). She was put on Vigabatrin and the seizures stopped in three days. Since then there have been no other seizures and she is making progress al
the time. However I feel she´s a little bit behind toddlers her age. I am wondering if she should be taking B6 too. Yours is not the first story I read of IS children taking B6 besides the anticonvulsants meds.
Well, anyway I would like to thank you for sharing your story and your findings along the way.
I hope Bill and Jennifer are doing wonderfully.
Best regards
Isabel
Marcelo Brito - 05/19/99 22:16:47
My Email:mbrito@netpora.com.br
Where are you from?: Brazil
How did you find us?: Through my friend
Comments:
These informations are very important for me and my son Gabriel - six years old -who was diagnosed as a carrier of West Syndrome. Today, Gabriel's biggest problems are the succession left by the disease.
Karen L. Wilson - 05/05/99 00:50:22
Where are you from?: Chattanooga
How did you find us?: Spoke on the phone with you today
Comments:
Your web page is very informative, and should inspire other parents to perservere whenever their children are in need.
Pat McFarland - 05/01/99 05:17:49
My Email:patricmc1@juno.com
Where are you from?: Everett, WA
How did you find us?: web
Comments:
I have a 1-year old granddaughter who is pyridoxine dependent. Had her first seizure hours after her 1-week checkup, where she was given a clean bill of health. Thankfully we are an hour from Children's Hospital in Seattle, where she eventually ended up,
in Infant ICU for 11 days. The nurses nicknamed her "stumpy" because she stumped all the doctors. Finally, the EEG tech noticed something she had seen once before, and told the neurologist about B6. Thankfully, he listened. They put her on B6, and she
has been seizure free from that moment. PTL. She is currently on 200mg 2x daily. When her dosage was doubled at about 1 year, from 100 mg 2x daily, the improvement in development was dramatic. She continues to develop, although is delayed somewhat. Th
nks for your story.
Jennifer Sullivan - 04/27/99 15:13:24
My Email:evanvic@shore.intercom.net
Where are you from?: Maryland
How did you find us?: www.ask.com
Comments:
My son that is now 7 1/2 is consider PDD. We had an EEG and a complete blood work done with a small organic acid screening (doctor decide this) done by a neurologist when he was 3 yrs 9 months. This testing said Pyridoxine Derovative but he did not tell
s this. We just happen to get a copy of the report. Also his coporhyrins were high.
Thanks for your sight. It is something to look into.
Jennifer
Lisa Ruigrok - 04/20/99 18:17:05
My Email:ruigrok@exchange1.cmh.on.ca
Where are you from?: Ontario, Canada
How did you find us?: egroup
Comments:
Thank you for sharing your story, it is very insightful. Also, thank you for responding to my question on the e-group, which lead me here in the first place. Its wonderful to hear that Bill and Jennifer are doing well.
Blaise Riou - 03/24/99 15:20:07
Comments:
Bonjour. I votre homepage est intéressant. Combien de temps avez-vous été sur l'Internet? Quoi qu'il en soit, je dois aller vague déferlante plus de pages de Web. Bon
e Chance!
Amy - 03/19/99 04:48:19
My Email:LoveBird5@aol.com
Where are you from?: Mich
How did you find us?: aol net find
Comments:
My 6 month old son Brendan was diagnosed with infantile spasms a couple weeks ago. The neuro started him on clonapin, and a couple days later he added the B-6 (50 mg 1x per day) We saw an improvement right away, but I didn't know for sure which med was
eally helping. Because I had read your very informative story, I was led to ask the doctor if Brendan could have a pyridoxine deficentcy. He said the only way to find out was to increase his dose and see how he does.(50 mg 3x per day) He also switched
is anticovulsant a couple days before. This was 3 days ago, and he has improved tramendiously!! He is like his old self again...even better. He is alert, the seizures have stopped, he's very active, and he's smiling again. Today he even started rollin
from his back to his stomach. He wasn't even trying to do that 3 weeks ago before the spasms had started. I really hope this is the answer. I can't thank you enough for sharing your childrens story. You may have made a huge difference in my sons lif
, and I'm sure many other too. Thank you so very much. Amy
Barbara Thornton - 02/28/99 16:39:41
My Email:cttbst8@aol.com
Where are you from?: Atlanta, GA
Comments:
Thank you so much for sharing your expriences. I will never stop questioning. I only wish I could find something to control my daughters seizures 100%. Again thanks
Ione Farrar - 02/25/99 02:50:04
My Email:ifarrar@chattanooga.net
Where are you from?: Chattanooga
How did you find us?: Bill is my godson
Comments:
Mike & Tiffany Bast - 02/15/99 00:38:49
My Email:mtmbast@gateway.net
Where are you from?: Costa Mesa, CA
How did you find us?: www.geocities.com
Comments:
My daughter was just diagnosed with Infantile Spasms on Thursday and I have also since learned about B6 and its effect on seizures. Thank you for your enlightening story about your children. This gave me and my husband hope about our daughter. Thanks a
ain.
Yuval Shafrir, M.D - 02/14/99 04:17:44
My Email:shafriry@erols.com
Where are you from?: Georgetown University
How did you find us?: AltaVista search for "pyridoxine and epilepsy"
Comments:
Amazing !!!. But I missed half of it because I cannot read the print over the dark blue background. I tried to copy your entire story, but Netscape would not allow me to do that. I am a child neurologist, and I beleive that your story should be a "must" i
education of child neurologist, as well as for parents with children with undiagnosed severe neurological diseases. Maybe you can e-mail me your story???
Thank you very much. It is enlightening (and humbling) reading.
RICHARD A. BOWMAN - 02/08/99 20:38:43
My Email:bowmanr@hotmail.com
Where are you from?: Texas
How did you find us?: through hot mail
Comments:
MY DAUGHTER WAS DIAGNOSED WITH INFINTILE SPASMS AT 14 MONTHS OLD WE HAVE HAD HER ON ATCH, VALPROIX ACID, AND THE KETOGENEIC DIET THE ONLY ONE THAT WAS REMOTELY SUCCESSFUL WAS THE KETOGENEIC DIET. WHEN WE FIRST STARTED HER ON THE DIET WE HAD HER ON A LIQUI
E MULTI VITAMINE WITH B-6, WE ALSO HAD HER ALSO HAD HER ON A SMALL DOSE OF B-6. THE DIET WAS GOOD FOR ABOUT THREE MONTHS AND ALL OF A SUDDEN THE SEIZURES CAME BACK. AT THE TIME WE DIDN'T THINK WE MADE ANY CHANGES. BUT AFTER READING YOUR STORY I REALIZED T
AT WE HAD MADE A CHANGE WE TOOK ARE DAUGHTER OFF FROM THE B-6 ABOUT TWO TO THREE WEEKS BEFOR HER SEAZURES STARTED UP AGAIN, THE DIETISION HAD SUGGESTED TO US NOT TO GIVE HER ANYTHING OTHER THAN HER POLY VISOL BECAUSE IT COULD EFFECT HER KETO DIET SO WE DR
PPED THE B-6, AND LIQUIDE MINERALS. MY DAUGHTER IS NOW 4 YEARS OLD AND SHE IS STILL HAVING INFANTILE SPASMS. SENSE READING YOUR ARTICAL I HAVE CALLED MY WIFE TO TELL HER TO LET THE NERULOGIST NOW THAT WE WOULD LIKE TO TRY HER ON THE B-6 AND SEE WHAT HAP
ENS. PLEASE RESPOND BACK TO MY COMMENTS AT MY EMAIL ADRESS.
RICHARD A. BOWMAN - 02/08/99 20:34:29
My Email:bowmanr@hotmail.com
Where are you from?: Texas
How did you find us?: through hot mail
Comments:
MY DAUGHTER WAS DIAGNOSED WITH INFINTILE SPASMS AT 14 MONTHS OLD WE HAVE HAD HER ON ATCH, VALPROIX ACID, AND THE KETOGENEIC DIET THE ONLY ONE THAT WAS REMOTELY SUCCESSFUL WAS THE KETOGENEIC DIET. WHEN WE FIRST STARTED HER ON THE DIET WE HAD HER ON A LIQUI
E MULTI VITAMINE WITH B-6, WE ALSO HAD HER ALSO HAD HER ON A SMALL DOSE OF B-6. THE DIET WAS GOOD FOR ABOUT THREE MONTHS AND ALL OF A SUDDEN THE SEAZURES CAME BACK. AT THE TIME WE DIDN'T THINK WE MADE ANY CHANGES. BUT AFTER READING YOUR STORY I REALIZED T
AT WE HAD MADE A CHANGE WE TOOK ARE DAUGHTER OFF FROM THE B-6 ABOUT TWO TO THREE WEEKS BEFOR HER SEAZURES STARTED UP AGAIN, THE DIETISION HAD SUGGESTED TO US NOT TO GIVE HER ANYTHING OTHER THAN HER POLY VISOL BECAUSE IT COULD EFFECT HER KETO DIET SO WE DR
PPED THE B-6, AND LIQUIDE MINERALS. MY DAUGHTER IS NOW 4 YEARS OLD AND SHE IS STILL HAVING SPASMS. SENSE READING YOUR ARTICAL I HAVE CALLED MY WIFE TO TELL HER TO LET THE NERULOGIST NOW THAT WE WOULD LIKE TO TRY HER ON THE B-6 AND SEE WHAT HAPPENS. PLEA
E RESPOND BACK TO MY COMMENTS AT MY EMAIL ADRESS.
Troy J. Bishop - 02/08/99 03:25:55
My Email:metallurg@triton.net
Where are you from?: East Jordan, Michigan
How did you find us?: Excite search...
Comments:
I have a 5 month old son who is in the diagnosis process for infantile seizures... due to the side effects of treatment, and the long term effects of seizures, I am researching infantile spasms, and any potentially related problems. I hope that the solut
on to his problem can be found. He is very normal in development to this point, and I would hate to see him have developmental problems due to extended spasms which later develop into seizures. I don't know what I will find, or if your description of b6
dependency will relate to our sittuation, but I am glad you had the heart to put it where others could find it.
Thanks again.
Troy
Shelly - 01/24/99 21:01:21
My Email:Kirk.schwasnick.worldnet.att.net
Where are you from?: Little Falls, New York
How did you find us?: Web seaching
Comments:
I also questioned the onset of Infantile Spasms to stopping of breast feeding and was told it was not linked. I also have a family history, a sister who is mildly retarded and my father has cushing syndrom (his putitary gland was producing to much acth)
Tim and Sharon Dobbins - 01/23/99 18:22:20
My Email:Woozie1956@aol.com
Where are you from?: Henderson, Nevada
How did you find us?: Internet
Comments:
My wife and I have been searching the Internet for answers to our daughter's medical problems. It is too coincidental that my father died of ALS, and our daughter fits your children's symptoms, almost to the tee. I will email you with her case history.
Thank you for your efforts....Tim Dobbins
Lily Lu - 01/20/99 13:34:51
My Email:nglily@pl.jaring.my
Where are you from?: Malaysia
How did you find us?: B6children
Comments:
Thanking you for your valuable information.
I do hope my son Adrian will have good response to
B6. Thanks!!!!
Lily Lu - 01/20/99 13:34:25
My Email:nglily@pl.jaring.my
Where are you from?: Malaysia
How did you find us?: B6children
Comments:
Thanking you for your valuable information.
I do hope my son Adrian will have good response to
B6. Thanks!!!!
Ellen Sherman Todd - 01/07/99 02:09:15
My URL:http://www.bigfoot.com/~chunkymonkey
My Email:chunkymonkey@bigfoot.com
Where are you from?: Florida
Comments:
Hi Christine... I just wanted to come back to Bill and Jennifer's page, since I hadn't been here in a while. I believe this is the most helpful site on IS out there, in the way of information and hope. Unlike all the rest of the sites, almost all of yo
r visitors are so greatful to have this information at their disposal. Thanks for sharing your story; it seems to have touched so many! Happy New Year and God Bless...
-Ellen
Larry Ward - 01/04/99 04:42:30
My Email:bigboylarry@msn.com
Where are you from?: british columbia, canada
How did you find us?: searches
Comments:
Thank you for taking the time to build a beautiful website. You and your children's stories are heartwarming and inspirational. We are currently trying to get a diagnosis for our beautiful 1 year old daughter Kayla. She started having seizures at 5 months
of age. She also developed full blown cataracts in a months time. She was misdiagnosed as having Aicardi Syndrome. She is on 3 anti-convulsants including vigibatrine. Your story gives us more hope at a time when prayer doesn't seem enough. I will e-mail y
u our full story if you like. I am just packing to fly out to Toronto in the morning and will be back in a weeks time. Bless you.
Sr. Mary Walker - 12/31/98 02:03:09
Where are you from?: South Dakota
How did you find us?: web search
Comments:
I hope you experience can help an Italian child - the doctors there appearantly HAVE diagnosed the disorder, but aren't sure how to treat it!
God Bless!
Karen - 12/26/98 00:51:20
My URL:http://www.angelfire.com/la/slpspunk/diagnosis.html
My Email:karenhig@bellsouth.net
Where are you from?: Louisiana
Comments:
My ten year old daughter, Alison, had infantile spasms at 7 weeks of age. Thanks for sharing your story.
wsp - 12/23/98 12:54:09
My Email:wsp
Where are you from?: home
How did you find us?: testing
Comments:
this is a test
Lori - 12/03/98 21:48:35
My Email:bohrer@idir.net
Where are you from?: Kansas
How did you find us?: search engine
Comments:
I have a friend who's infant daughter has just been diagnosed with infantile seizures and the prognosis is severe mental retardation. My friend is devestated!! Now I can tell her to ask her doctor about B6 and she can have some hope. Thank's for your
article.
vickey burley - 12/01/98 15:30:40
My Email:burleykm.bellsouth.net.com
Where are you from?: stone mountain
How did you find us?: yahoo
Comments:
Please feel free to email me at the above address or call me (404) 299-5951, I would love to talk to some one. this is all new to me and I don't know what I can do to help my child fight this horrible affliction. Despite what the doctors say I do belie
e Kristen will beat this. I just have to find a way to help her. She is already in early intervention programs. Thank you for a wonderful story. I read it often as a reminder that I must not give up, but continue to fight until someone help me help
y child.
vickey burley - 12/01/98 15:13:27
My Email:burleykm.bellsouth.net.com
Where are you from?: stone mountain
How did you find us?: yahoo
Comments:
Brian and Karen - 11/28/98 20:06:58
My Email:none
Where are you from?: Regina, Canada
How did you find us?: Browsing
Comments:
Our daughter Allison developed seizures when she was approx. 8 months old. There may have been symptoms before but we did not detect anything abnormal. Allison also had vision problems associated with her conditions which also complicated diagnosis. Since
being placed on 100mg of vitamin b6 22 months ago her seizures have stopped and her development has steadily incresed. Thank you for your time in putting your story on the web. My wife and I found it very comforting to know that Allison now has a chance t
develop normally. Thanks again, Brian and Karen
Rebecca - 11/17/98 19:28:37
My Email:hedmastr@proaxis.com
Where are you from?: Corvallis, Or
How did you find us?: metacrawler search for pyrodoxine dependency
Comments:
Excellent Site! Thank You!
De Genaro Horacio - 11/13/98 18:17:53
My Email:degenaro@criba.edu.ar
Where are you from?: Argentina
How did you find us?: infantilespasm@egroups.com
Comments:
Thank's for your information!
I have an 16 years old boy, he was IS at early 6 month, now he is free of IS since 1 year old.
sorry for my bad English.
Do you speak Spanish ?
Belinda Doran - 11/13/98 11:16:20
Comments:
Karen Varner - 11/02/98 22:00:58
My Email:dovarner@mindspring.com
Where are you from?: Knoxville, TN
How did you find us?: Friend
Comments:
I have an 8month old daughter with ideopathic seizures. All her test were normal including the EEG, except when having a seizure. Our neurologist is sending us to a specialist in Houston. I mentioned your article to my local doctor who said he would be
willing to try it with her if the specialist is not able to determine a cause for her seizures. Thank you for your article.
Theresa Banks - 10/28/98 14:00:45
My Email:jtbanks@alo.com
Where are you from?: Atlanta/ga
How did you find us?: searching
Comments:
I have a beautiful 7 month old Goddaughter that is having a hard time and giving the doctors a run for it, trying to get her seizures(grand mal & myoclonic) under control. I hope and pray that this could be an answer or even a lead for her. Thank you f
r sharing and God bless you and yours.
Pat Detwiler - 10/21/98 23:39:04
My Email:PatDetwiler@worldnet.att.net
Where are you from?: Cedar Rapids IA
How did you find us?: Web search on Pyridoxine
Comments:
Nicely written article on the web. My interest is motivated by my 2 year old daughter (Samantha) - she has "Febrile Seizures". She's on Klonipin and Valporic Acid which helped. Now she's on vitamin B6 and it has greatly reduced seizure severity, but has n
t eliminated the problem.
My wife and I are happy to hear of your success. Well done!!!!!
Samantha Knapp (and baby Asia) - 10/18/98 04:56:51
My Email:veggietwins2@on.aibn.com
Where are you from?: Ontario, Canada
How did you find us?: surfing
Comments:
My daughter, Asia, has been diagnosed with Pyridoxine Dependency. Your web site, as well as your personal e-mails have saved her life! Thank you from the bottom of my heart. She is 20 months old now and is on 400 mg daily. (given in 4, 100 mg doses)
E-mail privately if there are any parents who need parent-to-parent support.
Rebecca Lang - 10/15/98 23:05:16
Where are you from?: Vancouver, WA
How did you find us?: searching
Comments:
Thank you so much. After 10 months of going through all of the same stuff, my son is now okay because of the Pyridoxine. My son's last episode was about six hours long. The doctors were trying everything to get him to stop. They were pumping him full
f Versed, Phentobarb, Dilantin, and Valum. Nothing was stopping him. They were about ready to call an anesthiologist to completely knock him out when they dicided that they would try to give this to him. She said it had never worked for her before but
he said she would try it anyway. Before they could get it all out of the sryinge he stopped moving. By the time the syringe was empty, the EEG they had running was quiet. It was like a miracle. They said that this is a very rare thing. The thing I ha
e to say is "Rare doesn't mean it never happens." Thank you for your story. It has helped me to unterstand more about this.
david - 10/13/98 19:47:01
My Email:dxwelch@netfeed.com
Where are you from?: modesto, ca
How did you find us?: webcrawler
Comments:
my granddaughter has come down with IS, perhaps it might be a b6 problem. since the dr has her on b6 and sabril, she is fairing well hopefully she will remain so. your web page is off to right by about 3/4". tried two browsers, netscape and microsoft, sti
l off. thanks, your info should help. dw
Darci Herrin - 10/09/98 22:20:17
My Email:d_herrin@hotmail.com
Where are you from?: FL
How did you find us?: accident
Comments:
It's good to know there are happy endings!
Regina Layton - 10/03/98 19:48:55
My Email:rlayton@iname.com
Where are you from?: San Jose, CA
How did you find us?: Mednets browser
Comments:
Our daughter, Isabel is two months old. She started having seizures at 4 days old. Fortunately, there was little delay in getting her on the B6. We are very hopeful, and would like to stay in contact with parents of older children so we have a good pictu
e of what can be ahead for Isabel.
Peter Sutherland - 09/30/98 12:27:58
My Email:suthers@ozemail.com.au
Where are you from?: Australia
How did you find us?: Searching for information on hypsarrhythmia .
Comments:
Your page is excellent - the most informative I've seen. I am a G.P. who has somehow "inherited" a large number of Down's Syndrome patients, most of whom are epileptic. I've had better success with treating them than my predecessor (is that how it is sp
lt?), simply because better drugs have come on the market, such as Vigabatrin. However, the various side effects are nasty, and I'm always looking for alternatives. I don't think any will have a B6 related problem, but it's worth considering - I had nev
r heard of the condition before. Thanks.
Ron & Joan Denlinger - 09/24/98 13:04:51
My Email:Robbinsfamily@erols.com
Where are you from?: 409 Main Street Red Hill, PA 18076
How did you find us?: thru Nancy Akers via KetoClub Newsletter
Comments:
We have a daughter who is 11 years old. We've been doing some reading about B-6 dependency. What we are reading looks hauntingly like our daughter's condition. She has never been tested for this during an EEG, etc. We are sure wondering why she hasn't
been. She had a younger sibling with similar symptoms. He died four years ago. We have no idea if this condition is what our children have and are experiencing or not. We're just beginning the search in this direction. Thanks for your willingness to
hare your story. We pray that if it doesn't help us that it may be of help to someone. 215 679-5366
Catherine - 09/13/98 21:04:24
My Email:ctbaughman@aol.com
Where are you from?: Austin, TX
How did you find us?: Web search
Comments:
Your name keeps coming up in various ways on the internet as the B6 woman...thanks for the good job you are doing of educating those of us with IS children. My 9 mo. old daughter was diagnosed with IS last May. She imm. started Vigabatrin thru a study s
te in Dallas. Her last two EEGs showed no hypsarrhythmia and her last EEG 4 weeks ago was normal. The problem for us is that the baby continues to have eye-rolling and head dropping episodes that last between 1-30 min. They look like diluted IS, but th
EEG shows nothing. The Dr.s said the episodes are non-epileptic, but we are still very concerned and can't believe they are "nothing". We asked to try B6 but the protocol for the drug study evidently restricts usage of other treatments, so the neurolog
st won't write a B6 elixir prescription. Do you have any suggestion? Does our case sound like one that might be a B6 deficiency candidate? I would appreciate your opinion and any suggestions. Thanks so much. Catherine
anthony lim - 09/05/98 12:58:55
My Email:mylim@tm.net.my.
Where are you from?: sabah , malasia
How did you find us?: IS homepage
Comments:
our daugther cynthia now 22 months old ,she had IS
at 4 months old. she was now on 500mg sabril and
75mg lamictal per day. she still have seizure twice a week. we now give her 20mg b6 per day. thanks to your information about B6. we want to know more about B6,how many mg per day . how do we
know she is prydoxine depedancy. thank you.
lshawna waters davis - 09/03/98 15:43:03
My Email:hm (206)789-4194
Where are you from?: seattle wa
Comments:
please call me
Angela Smith - 08/28/98 15:01:15
My Email:Gsmith3693@AOL.COM
Where are you from?: Cordova, TN
How did you find us?: browsing for info on IS treatments to help my son
Comments:
Thanks so much for all of the information. It has given me more hope than I have had in the past few months. I do not know if this treatment will work but my family will never give up and never stop asking questions.
Again, Thanks!!
Angela
Cindy - 08/24/98 21:34:59
My Email:JPlumme@bellsouth.net
Where are you from?: Georgia
How did you find us?: chat room person Harvard neuro site
Comments:
This is very interesting; will look into it further. Our grandson has Tuberous Sclerosis; diagnosed at 3 months; now 9 months on ACTH for 5 weeks now for infantile spasms....changing ped. neuro after many questionable errors from the first one. Dr. J. i
a wonderful, concerned, informed doctor. EEG will be done Thurs. Aug. 27
to be sure seizures have stopped. Will get back in touch. Thank you for sharing this wil the world. Cindy Plummer
Kate Miles - 08/11/98 15:12:13
My Email:thomasmiles@erols.com
Where are you from?: Lusby, Maryland
How did you find us?: searching for help with LGS
Comments:
Our son is 14, and has had LGS since age 2 1/2. We are currently running out of treatments and medications. I am wondering if perhaps there is a chance that pyridoxine could help our Robbie. We will be going to the doctor (National Institutes of Health
on Friday 8/14/98, I will discuss it with them then. Thank you for sharing this information! Kate Miles, Rob's mom
Bonnie Cooper - 08/09/98 06:16:55
My Email:mcooper@clinic.net
Where are you from?: Harpswell, Maine
How did you find us?: infantile spasms e-mail
Comments:
Our only son, Michael, will be 7 years old next month and was diagnosed with infantile spasms at 13 months of age. He had been in distress for three days before he was born, according to the pathologist's report on the placenta (part of which was overlook
d and remained within me until 4 weeks after the birth). A nurse, watching the monitor, told me during a particularly painful cramp that it was not a labor pang. She said that the baby must be stretching out a limb. There was some meconium in the amnio
ic fluid at delivery, but things seemed to be going well enough that the pediatrician did see any need for his presence when the hospital called to inform him of the situation. The umbilical cord was short, but our son seemed okay. After several hours a
nurse brought my baby for me to nurse and expressed concern that she couldn't seem to get him as warm as he should be in the incubator. She took him back to warm him some more when he finished nursing. I noticed that he did not make eye contact as his o
der sister had done at the first nursing. His gaze seemed far away, but I stroked his head very gently and he seemed pleasantly aware of that. I noticed in those first days that he often stiffened out his right leg and surmised that this must have been
hat he was doing during those painful, "non-labor" cramps during his birth. (Since then, I have read somewhere that the stiffening of a limb can indicate a seizure in a newborn.) As the months progressed, he would often stare and then seem to give a lit
le start, at which his facial expression changed dramatically. Sometimes he looked horrified. At others, he began laughing with a strange look in his eyes, and sometimes his face suddenly went "blank." He couldn't seem to get the hang of rolling over a
d his crawl was a little lopsided, but he learned to walk at eleven months. However, shortly after that I began to notice small bobs of the head that didn't seem normal and increased over the next week or two. We went on a family trip to my brother's we
ding in Pennsylvania and, although the bride was a physician, I didn't want to bother her at her wedding, especially since Mikie would have his one year check-up when we got home. The bobs had worsened to jack-knife spasms by then and, during the trip ho
e, we noticed the arms were going up. When I tried describing these spasms to the pediatrician at the one-year check-up, he said he didn't think it was anything to worry about. I felt embarrassed to return to the pediatrician but did so anyway a few days
later, with my husband, because I knew something was definitely wrong. At that time, the doctor suspected infantile spasms. An EEG the next morning showed hypsarrythmia and we were sent to Maine Medical Center for a few days where an MRI showed a normal
looking brain. Our neurologist there did try the pyridoxine IV during an EEG and saw no significant improvement with that. I can't remember exactly how we came to try giving Michael some B-6 each day, but we thought that it helped him somewhat, although
he was still having a lot of seizures. When we began the ketogenic diet, we cut out the B-6 because it complicated the calculations for the diet. The diet seemed to help a little at first, but Mikie became lethargic and his play and verbalization began
o regress dramatically. By the time we ended the diet, he was actually having far more seizures than when he began it. He has improved in the two years since we stopped the keto diet, but has never regained the clarity of speech he had (although his spe
ch at that time was mostly "parroting"). Your story makes me think it might be worth trying B-6 again. Mikie is now on Depakote, Topamax, and Carnitine and usually has seizures only at night and within the first hour or so after waking in the morning.
Some days, I don't actually see any. It had never occurred to me before reading your story that Mikie's regression on the keto diet might have been a result of stopping the B-6, and his later improvement a result of getting more B-6 when he resumed a nor
al diet.
What do you think?
Jennifer Franco - 07/27/98 22:45:08
Comments:
Maria Faris - 07/27/98 04:44:16
My Email:faria@clipper.net
Where are you from?: Elmira Oregon
How did you find us?: geocities
Comments:
Hi, Im so greatful for your success stories and hoping my son, Kyle will find out the reason for his IS because he was diagnosed with Idiopathic Infantile Spasm. We are still in the process of ruling our the cause but I'm thankful for the many blessings w
have received from being able to read different stories of kids and parents that have been strong in their faith like us. God bless you all.
Tom Garst - 07/26/98 02:48:55
My Email:teg@score.com
Where are you from?: San Diego
How did you find us?: word of mouth
Comments:
Christine, GREAT PAGE! We too have correlate periods of worsening seizure activity with interruptions in breastfeeding. We have also seen improvements in abilities’ when we supplement the vitamin B6 with multivitamins. It seems like part of the variabil
ty seen in pyridoxine-dependency could be diet dependent. I hope that many pediatric neurologists get to read your page.
Cristina F. Vidal - 07/23/98 03:05:44
My Email:fernandezvidal@cotelcam.com.ar
Where are you from?: Argentina
How did you find us?: ketogenic list
Comments:
I'm a doctor too. I toohave been sent to the psichiatrist.
My little girl has a mioclonic epilepsy. They've nearly killed her with drugs. She is now drug and diet free(she had a great acidosis with the ketogenic diet) and her head drops are very mild. But I feel there is something in her diet that is affecting. I
ll try B6 for a while. If it works I'll let you know. She has a translocation in cr 19.
Nancy Akers - 07/17/98 02:33:02
My Email:KAkers6475@aol.com
Where are you from?: Virginia
How did you find us?: Bill and Jennifer's mom
Comments:
Our son, Zach, was born February 7, 1990, full term, weight 8 lbs. 6 oz., Apgars 9 and 10. He appeared to be a healthy baby except for "shivering" and jaundice. When we brought him home I noticed he slept more than his brother had, he had trouble breast
eeding and continued to "shiver". When I questioned these things I was told it was probably due to the trauma of birth or something I was eating. At four days old developed a shrill cry and he had a cyanotic episode. We rushed him to the ER, he was di
gnosed with seizures.
Numerous blood tests, lumbar punctures, metabolic tests, genetic tests and CT scans were done, everything came back normal. An MRI did show he had a large cyst on his cerebellum and that his ventricles were enlarged. At six days old he was in a phenobar
coma because they couldn’t get the seizures under control. At 2 ˝ weeks old he was diagnosed with infantile spasms and started on ACTH injections. Around this same time he was given and IV of 12.5 mg of pyridoxine during an EEG and the EEG improved.
e was put on a daily supplement of 12.5 mg of vitamin B6 daily. At 38 days old he came home from the hospital on Dilantin, phenobarb, ACTH injections and the 12.5 mg B6/daily.
He would go the next thirteen months with occasional breakthroughs, a few times requiring an ER visit for IV drugs to stop the seizures, and always the anticonvulsants would be increased. April 24, 1991, he woke me with the all to familiar rhythmic grunt
ng, he was in status. He was taken to our local hospital and after about thirty-six hours of almost constant seizing he was Medivac’d to Children’s Hospital in Washington, DC. When we got there, his liver enzymes were the highest they had ever seen, he
was showing signs of renal failure and he was still in status. They tried to control the seizures with every anticonvulsant available, nothing worked. He was put in two separate drug induced comas, only to come out of them seizing. Then after nineteen
days in the PICU he was given an IV of 100 mg of pyridoxine and he made a miraculous turn around! The seizures stopped, he recognized us and smiled and he began drinking from his bottle, all within hours of receiving the pyridoxine. Also, during this v
sit, his ventricles enlarged to the point he needed to have a V-P shunt placed and the cyst on his cerebellum was also shunted. He came home on Dilantin, phenobarb, Klonopin (4 wks.) and 25 mg B6/daily.
Zach would continue to have periods of control, interrupted by breakthroughs, most times going into status. At four years old the chicken pox put him in the PICU for three days, seizing almost non-stop. The B6 supplement was increased to 50 mg/daily.
Zach’s breakthroughs were becoming more frequent about the time the Dateline segment on the ketogenic diet aired. We decided to give it a try. On July 10, 1995, we went into the hospital to start the diet. Zach has tolerated the diet really well. Jul
4, 1996, Zach was drug free for the first time since he was four days old! In the year that followed, Zach had only four breakthrough seizures. Because he was doing so well on the diet and after a blood test that showed his B6 level at 208, normal is
-18, it was decided to wean him from the daily supplement of 50 mg of B6. What a nightmare!!
Zach got up one morning crawling instead of walking, which progressed to not even being able to sit on his own, vomiting, delirious, hypersensitive to touch and sound and seizing. Within minutes of receiving an IV of 100 mg of pyridoxine he made a phenom
nal turn around! After being totally disoriented, he reached out and took his Elmo’s hand and said,
"Elmo, home." He now has the diagnosis of pyridoxine-dependent epilepsy.
He was still having an occasional breakthrough on the ketogenic diet and 50 mg of B6/daily. We saw a new metabologist in September 1997, he increased Zach’s B6 to 50 mg 3x/daily. We saw improvement almost immediately in his general awareness and attenti
n span. And because of this improvement, in December 1997, the neurologist increased the B6 to 100 mg 3x/daily. We have seen a significant improvement in cognitive functioning, irritability and sleeping. And NO seizures since 8/30/97, just prior to the
B6 increase.
Another point we would like to make is our son endured countless, horrible seizures in spite of the fact that he was on a daily supplement of B6 since infancy. No one knew that the dosage would need to be so much greater than normal to control his seizu
es.
One other detail I would like to mention is during my pregnancy Zach had very abnormal movements. He would kick so violently that I had a sonogram done to rule out twins.
Zach is now healthier than he has ever been. He is still on the ketogenic diet and 300 mg of B6/daily. We hope to start weaning him from the diet in June. He is fully included in regular first grade with the assistance of an instructional aide, resourc
s from a special education teacher, OT, PT and speech. Zach has global developmental delays. He has dyspraxia which makes expressive speech extremely difficult. He has three to four word utterances with beginning and ending sound substitutions and omis
ions. He is just now starting to imitate pre-writing strokes, has trouble cutting with scissors and does not cover an entire area when coloring. He is counting to 12 and can recognize numbers to 20. He recognizes and identifies all of the alphabet exce
t q, l, n, u, and v. He is beginning to recognize and identify beginning sounds to some words. He loves to be read to and is attentive as long as it is short. He follows the classroom rules and is well liked by his classmates. He does have problems wi
h transitioning from one activity to the next. He enjoys school and is very eager to go. Zach still has some balance issues, is stronger on his left side than right, has mild hypotonia and strabismus. As mentioned earlier he has a V-P shunt for hydroce
halus. And in June 1995 an MRI showed an Arnold-Chiari malformation for the first time.
In his free time Zach likes to ride his bike (two wheeler w/ training wheels), go swimming, shoot basketballs, play with the neighborhood children, play with our beagle, dress up like daddy, listen to country music and "play" his guitar, watch videos and
restle with his big brother. He is also on a little league challenger baseball team.
Zach is an absolute joy! He has a wonderful sense of humor and a very compassionate heart.
Thank you Christine for taking the time to share Bill and Jennifer's stories and for being so supportive!!
Prayers and love to all,
Nancy
.
Wendy Garrison - 07/11/98 18:37:32
My Email:3_Jacks@msn.com
Where are you from?: West Virginia
How did you find us?: MISC link
Comments:
Your story has changed the life of our little boy!! When my son was diagnosed with IS my mother-in-law(BLESS HER) asked if there was a possibtlity that Christopher had a B6 defficiency. The neurologist that was covering for ours at the time was very rude
to her and told her basically that he had malformations (very slight) and that is what caused the seizures, Peroid! This was in late April 1998. Three months later when medications seemed to work for a while and then fail I finally convinced our neurolo
ist to put him on B6 just for basic neurological health. Four days later I finally made it to your web site on my trek through the MICS links. PRAISE TO GOD that my prayers led me to you. Christopher was on a 50mg dose of B6 set by our neurologist. He
seemed to be great for a longer time during the day( after his morning dose) but would start having spasms again in late afternoon. The friday I read your site was also the day he had recieved his first vaccinations since he was two months old. He was r
nning a slight fever, which scared me to bits considering his conditon. After reading bout your daughter, and her dose of 100mg a day I decided to give a second dose that evening a try. This morning when we woke up I could hear his bad shaking I rushed i
fearing the worst. HE WAS PLAYING! I felt elated, like someone had left a beautiful present inhis bed. What a BLESSING, an answer to my prayers. It is now 2:30 the same day, and still not a single spasm. Not when his brother let out a war whoop, whi
h startled him awake guaranteeing spasms. None of the regular triggers have set him off. I must add that he also was just put back on ACHT, and his Vigabatrin and depacene were increased. I truely feel that it had to be the B6. He is a different baby
ince I upped the dosage last night. I was going to try it for two days and let his Dr. know. I thought it couldn't hurt and might save him. I will let you know how things go. Please, Please if you have the time e-mail me. Thank you again and may God ri
hly bless you and your family.
michelle - 07/11/98 05:50:25
My Email:ourRaven@aol.com
Where are you from?: You!
How did you find us?: You!
Comments:
Thanks for the info and great story! I really believe all of idiopathic IS has a solution such as yours! This site will definitely be linked to Raven's!
Ian - 07/10/98 01:42:06
My Email:Ian_Houser@hotmail.com
Where are you from?: here
How did you find us?: dad
Comments:
Hi there
Beth Houser - 07/10/98 01:33:55
Comments:
Great web page! I haven't forgotten about the
articles on metabolic disorders I promised you.
They are sitting on my desk at work. I'll copy
them and get them to you soon. Beth
Jan Silbermann - 07/07/98 12:33:57
My URL:http://geocities.datacellar.net/Heartland/Flats/2904
Where are you from?: New Orleans
How did you find us?: MISC
Comments:
Hi, I am the manager of the IS list. Your web page is fantastic. Thanks for sharing your story in such depth, you are going to help a lot of people.
Jan
David & Linda Riley - 07/05/98 22:33:25
My URL:http://geocities.datacellar.net/Hollywood/1071
My Email:djriley@hotmail.com
Where are you from?: Manchester, England
How did you find us?: Via Rosie Wagner
Comments:
Our son Adam is also Pyrdoxine Dependent, thanks for the information.
Christie - 07/05/98 02:09:38
My Email:criehl@apu.edu
Where are you from?: Los Angeles
How did you find us?: MISC
Comments:
I have a 9-month old daughter with IS. Although she is not pyridoxine-dependent she has appeared to respond to B6 as a therapy for IS. (She failed Vigabatrin and ACTH treatment but her spasms stopped after moving up her B6 dosage from 100mg to 200mg per d
y.) Thanks so much for sharing your story, I admire your strength, courage and enduring love.
Marie Cummings - 07/05/98 02:05:18
My URL:http://geocities.datacellar.net/HotSprings/Villa/3429
My Email:woodstitch@foxinternet.net
Where are you from?: Washington
How did you find us?: Jason's web page
Comments:
What an informational and inspirational story! You win the prize for persistence: FINALLY knowing what to do for your kids (they are darling by the way!) Thanks for sending me the B6 information a while back!
Will add your link to Jason's page soon!
the godmother Jackie - 06/29/98 01:23:03
My Email:Schulten@mail.cha.bellsouth.net
Where are you from?: Chattanooga, Tn.
How did you find us?: Christine Parker
Comments:
Jennifer is my Goddaughter and I love her with all my heart. I saw how painful it was for her parents to think there was some difficulty with
their new baby. It broke my heart. I knew without hesitation that Jennifer would prevail because her parents would not give up. The Parkers especially Christine are an inspiration to all of us who work and try so hard for our children. Christine never
gave up.
Love, Jackie.
Pat - 06/27/98 16:32:58
My Email:Patglyn@AOL.com
Where are you from?: Tennessee, USA
Comments:
I like your web page. After living through the last ten years watching you both grow up, I believe in miracles and guardian angels.
I hope this page will help other families who have gone through the same thing.
Love, Nanna.
Barby and Forrest Parrott - 06/25/98 02:05:52
My Email:forrestparrott@sprintmail.com
Where are you from?: San Antonio, TX
How did you find us?: initially through Epilepsy in Young Children web site
Comments:
I am so glad I got up the nerve to email you, Christine! Thanks for everything.
More later . . .
Karen Strong - 06/24/98 05:19:28
My Email:kye@roxby.net.au
Where are you from?: Roxby Downs South Australia.
How did you find us?: IS List
Comments:
Hi, I like your page. I would like to thank you for the help you have given my daughter Holly and granddaughter Jordan. I can't wait to see the change the B6 has made.
Karen.
Sallyanne Cameron - 06/24/98 05:03:57
My Email:cameron@solarwinds.com
Where are you from?: Fort St John, BC Canada
How did you find us?: IS group email
Comments:
My Grandson is Dorian, Jay Terry's son.
I am inspired by your story. Hope that Jay will give Dory some B6.....
You have great determination and courage.
God Bless.
Ellen - 06/22/98 16:24:43
My URL:http://www.bigfoot.com/~wwwebcafe
My Email:chunkymonkey@bigfoot.com
Where are you from?: Florida
Comments:
Hi Bill and Jennifer! I can't wait to read your "story" and put it out there to help others! Many people have heard about you both through the "IS Grapevine"! I hope you like your web site.
-Ellen
,