Steven Kim - 12/27/00 23:09:38
My Email:stevenk@chem.ucla.edu
Where are you from?: Los Angeles
Comments:
Hi Emma,
I really appreciate the time and effort you put it into Alex's Web page. You probably know how comforting it is to hear about families that have similar situations.
My wife Soo and I had a daughter this past July, 2000, who was born with severe complications. Our daughter, Joanne, was able to pull through those complications, but she started having infantile spasms. She was also diagnosed with hypsarrhythmia based on her past EEGs and we have started her on ACTH. She hasn't had any spasms since then. But there are other things that have occurred, and I was wondering if you could answer a few questions about your experience with Alex when he was on ACTH.
Was he very irritated?
Did he get sick(colds)?
Did he eat well?
What kind of spasms was he having exactly, such as arm and leg movements?
We have noticed recently that Joanne's legs tighten and lift. Have you ever noticed this?
Lastly, how did you folks manage to get through all of this?
Once again, my wife and I really appreciate the time you put into your site. I hope Alex continues to improve in everything.
Sincerely,
Steven Kim
Alissa Henderson - 12/26/00 02:23:42
My Email:Lliss2729@cs.com
Where are you from?: florida
Comments:
I was just interested in your story and i hope you know god was looking over him before he was even concieved god works in mysterious ways and every thing has a purpose god bless and merry christmas your in my prayers
alissa
mercy - 12/21/00 07:06:39
My Email:maigbem.aol.com
Where are you from?: online
Comments:
Dear Alex mom,
Thanks for your information.My niece is 15 months and has IS. I have been devastated. Your information is very encouraging and I feel a lot
better. God Bless you and Alex.
Sue - 12/13/00 14:01:27
My Email:sbatson@goes.com
Where are you from?: New Jersey
Comments:
My son began experiencing seizures when he was 5 months old. After taking him to a number of doctors and trying various medications all with no luck we finally brought him to Columbia Presbyterian Medical Center in NYC. The miracle doctor put him on ACT
and I also had to give him his shots. In my case this worked and he was able to start progressing again. They didn't know if he would have any brain damage. Although my story is slightly different, I thought you would like to know he is 35 years old and
a college graduate.
gayla burnett - 12/04/00 23:13:55
My Email:kaela19@yahoo.com
Where are you from?: Illinois
Comments:
I am a junior in Physical Therapy Assisting and am required to complete a case study on any disorder of the CNS or PNS and happened to come across this site. I wanted to do a paper on something that I knew nothing about. I had know idea that there was s
ch a disorder as this, however my experience with my brother who has Down Syndrom should have told me better, seeing what seizures have done to him. I am glad to see such a site on a disorder that is so rare.
lori - 12/04/00 09:47:04
My Email:KngTher@aol.com
Where are you from?: B.C. Canada
Comments:
Thank you so much for sharing alex's story. I'm 28 and began having seizures 6 months ago, I'm having my mri on friday and looking at the possibility of surgery with my neurologist. My husbund and I are scared but reading success stories like yours makes
s feel a little better.
Again our thanks :-))
Lori & Chris
sandy dixon - 11/30/00 03:46:28
My Email:jdixon1@rtelco.net
Where are you from?: north carolina
Comments:
I am the grandparent of a recently diagosed IS
child. Zach will be having an mri tomorrow morning. We lost Zach's older brother last year
after only four days of life. He had open-heart
surgery for a birth defect. It very difficult to
face the possibility of surgery now for Zach who
is just 5 months old. Please pray for Zach and his
parents.
I am very appreciative of your son's story. I pray
for his continued progress.
Brian Ernst - 11/29/00 19:56:22
My Email:fans95@hotmail
Where are you from?: Kitchener, Ontario, Canada
Comments:
We just learned two days ago our grand son Talon (3-1/2 months old) was diagnosed with Infantile Spasms and are scared to death of whats to come. However, reading Alex's story does give us some light at the end of the tunnel. We pray to God for Alex , Tal
n and your family everything works out.
Regards
Brian & Deddie Ernst
Kerri Gene Daniels - 11/26/00 13:54:54
My Email:kdaniels@tc3net.com
Where are you from?: Adrian, Michigan
Comments:
Hi, My son Elijah, was diagnosed with Infantile spasms on Wednesday, November 22, 2000. We just got out of the hospital yesterday, so this is very new to us. I have quite a long story. Elijah was born 2 1/2 months early on April 13, 2000. He weighed 2
ounds and 10 oz. He did not need to be on any breathing ventilator or respirator. He was doing great. We were in the Neonatal Care Unit for 6 weeks, and then finally got to bring him home for the first time. We were home about 1 1/2 months then I had
oticed that his head felt like a water balloon. Come to find out, my little boy had 3 brain abscesses. One, the size of an orange. At first they told us they were tumors because of the size, and how perfectly round they were. They ended up draining on
of the abscesses and put him back in the hospital for 6 more weeks. They had him on IV antibiotics and phenibarbitol, due to if he would have any seizures, this medication would help him. At the end of our 6 weeks, they did a CAT scan, and showed that
he abscesses were disappearing, but there was brain damage in the back of the head. (Where the big abscess were) Anyway, at this point he was doing good now. On September 4, we got to go home again. Having him home now for about 2 months, I noticed tha
Elijah would, when he would wake up from his naps, throw his head forward, and then pick it back up. He didn't cry or anything, matter of fact, he would smile. Well it was becoming more frequent, so I thought to myself, "something is not right here."
ell we have early on also coming to the house, because the doctors said that with these brain abscesses, he could be delayed, with also the fact of being premature, we had to justify alot of things. One night we were looking at Elijah, and then he starte
having these spasms, alot more, about 10 in a row, within, oh I'd say about 10 minutes. I told my husband that we should take him in. So we took him to the Toledo Childrens Hospital in Toledo, OH, and that is when they diagnosed him with Infantile Spas
s. Right now were on Depokene, but our Dr. has ordered the ACTH just in case this Depokene does not work. Can you e-mail me? I feel like I'm so lost, and helpless! This is so new to us, and I feel like we're the only ones that has gone through so much
in our lives. We are very strong Christians, and we feel God will give us strength to get through this. We know that we need to do as much studying as possible on this medical issue. Thank you in advance for hearing my story. Hope to hear from you soo
. Sincerely, Kerri Daniels
Robin L Murray - 11/25/00 00:14:43
My Email:rmurray9@bellsouthnet.com
Where are you from?: New Orleans LA
Comments:
Well I have a lil brother that has Infantile Spasms.And he Has had them since he was 10-months. And know he is five years old. please if you can call please my mom need some advice. Call-504-891-5374
Kristle - 11/23/00 09:24:54
My Email:Egyptianteam_ks@hotmail.com
Where are you from?: England
Comments:
hi again.
Thanks for the email emma sent to me a couple of months ago. ( i passed it on to my sister)
My nephew,James is going in for more tests later
and hopefully they will be able to oporate or do something for him.
I will e-mail you when i have more information on him.
Thank you
Kristle.
Cindy Carr - 11/18/00 03:13:03
My Email:dougiefresh62@cs.com
Where are you from?: Lewisville, Texas
Comments:
This was a great story and made me decide not to give up until all testing was done and confirmed that there was nothing more that needed to be done.
Gregory Finn - 11/05/00 16:35:14
My Email:mcfinn19@a0l.com
Where are you from?: Michigan
Comments:
Read your story Our son Philip[ had Rasmussen's Encephalitis-Dr. Harry Chugani (wonderful DR. ) had Pet Scan done at Children's as you know results were quick , able to make decision after knowing what was going on in our son's brain, had right hemisphere
Removed was not able to save the motor cortex like yours but still have a very active son surgery was done in Sept.-Oct. 1996 same surgeon DR. Canady . Good Luck
Kris McCracken - 11/04/00 02:57:45
My Email:crackensrus@aol.com
Where are you from?: Pennsylvania
Comments:
I am a home health care RN. I am taking care of a little boy who was just diagnosed with IS, and I am inspired by your story. Alex is just beautiful. Thanks for the hope and inspiration!!!!!!!
kirstie huggett - 11/03/00 19:48:55
My Email:brunchbus@bigfoot.com
Where are you from?: u.k.
Comments:
moving story,delighted for you
Jennifer - 10/31/00 22:05:34
My Email:Lovie1234@aol.com
Where are you from?: Pennsylvania
Comments:
I am so glad to see you guys were so strong. I am a 21 year old mother of 2 boys and i am going threw the same thing with my 17month old we have just reached the point with ACTH shots and i am hoping everything is okay good luck to you and i would appreci
te it if you have any adise for me at all Thanks again God Bless You Jennifer
TINISHA WATSON - 10/30/00 16:41:53
Where are you from?: WASHINGTON D.C.
Comments:
HELLO, THANK YOU FOR SHARING YOUR STORY .
I HAVE A DAUGHTER HER NAME IS KAYLA, SHE IS NOW 4
YEARS OLD. I DON'T HAVE AN EMAIL ADDRESS. MY HOME ADDRESS IS 715 IRVING STREET N.E. # 1
WASHINGTON, D.C.,20017
- 10/22/00 01:55:16
Comments:
Paul - 10/18/00 06:42:15
Where are you from?: Tall.,Fla. (FSU)
Comments:
I just wanted to say that I will pray for Alex to be at 110%. I am 23 and I have epilipsy, but what makes me make it day by day is real life stories of people like Alex and my loving family to support me specilly my sis. Thanks for helping me out sis. (I
LSO READ SOME OF OTHER PEOPLES COMMENTS AND MY WISHES GO OUT TO ALL OFF YA'LL AND YOUR FAMILIES TOO.)
Angie Sorrells - 10/16/00 04:46:58
My Email:jbsmama@yahoo.com
Where are you from?: Franklinton, Louisiana
Comments:
Thank you for sharing Alex's story. I have a 3 year old who has had infantile spasms since he was about 8 months old. He's been on ACTH, and about 7 different seizure medications. None has helped him and he's about 2 years behind in speech and communicati
n. Physically he's ok. His neurologist in New Orleans is in the process of getting us in to see Dr. Chugani. We're really at the end of our road now and we're just praying he can help us. I would like to get any information you could give me regarding thi
surgery. Expenses, recovery times, etc.)Please pray for my son, Joel, and we will pray for Alex. God Bless You for helping others!
Tanja - 10/05/00 00:48:54
My Email:tys324@hotmail.com
Where are you from?: Il
Comments:
I was hoping that someone out there can help me. I have a 6 month old son. His name is Tyler. When he was about three months old he started having these shaking spasms and he would just shake all over. Generally he does these when he is falling asleep and
they can last well over a minute. Sometimes it's really hard to wake him up and when you do he is very lethargic. Somedays he'll be fine and others he'll have three of these spasms or more. He's had three EEG's and on the last one he finally had a spell.
he doctor is telling me that there is nothing to worry about and that he will grow out of this, that it's not affecting his brain. On top of this he has severe reflux and has been in the hospital twice because of it. He also has very bad ear infections,
in 6 months. How much more do the doctors reallyt hink he can take. I worry because he is so young and has all of this going on. If anyone can help please Email me at tys324@hotmail.com I would appreciate it!
LAUREN DESTINY - 10/04/00 01:48:10
My Email:warriorchick03@aol.com
Where are you from?: DALLAS, TEXAS
Comments:
I JUST WANT TO SAY THAT YOU ARE VERY LUCKY TO HAVE SUCH A HEALTHY LITTLE BOY NOW. I HOPE THAT EVERYTHING ELSE IN HIS LIFE GOES WELL. GOOD BLESS
- 09/30/00 20:02:21
Comments:
Lynda Vallier - 09/23/00 05:22:21
My Email:LVenVal@aol.com
Where are you from?: So Calif.
Comments:
Your story is a wonderful story of how miracles do happen.
God Bless
becky stroup - 09/23/00 02:38:40
My Email:dstroup887@aol.com
Where are you from?: tuscaloosa,alabama
Comments:
My son also has infantile spasms.his name is jaxon he started them aug 15, 1999, thats when we noticed them.he was 8 months old.we have tried phenobarb,acth,ketogenic diet,klonopin,lamictal and topamax.nothing has worked.topamax might be working,but now h
is having a new seizure. they say it might be coming from meds, not sure! he is 21months, he is 1 year or so behind. he is not walking,talking or sitting up like he should.I would like to hear from you and learn more about what you have went through.
thanks alot,
becky
Guillermo Incera - 09/20/00 16:41:34
My Email:wincera@mitre.org
Where are you from?: Windham,NH
Comments:
Hi Emma:
Soy el hermano de Christina Hoskins. Muchas gracias por el cuento y la informacion.
Guillermo
GINA CRACCHIOLO - 09/14/00 14:35:12
My Email:MRTONYC23@AOL.COM
Where are you from?: CHICAGO IL.
Comments:
I AM VERY HAPPY FOR YOU ALL.I JUST CAME BACK FROM DETROIT FROM SEEING DR.CHUGANI I THINK HE IS A GREAT DOCTOR.UNFORTUNATELY MY DAUGHTER IS NOT A CANIDATE FOR SURGERY.SHE IS 9YEARS OLD AND HAS HAD SEIZURES SINCE SHE WAS 2 SHE HAS THE MIND OF A 4 YEAR OLD.H
R SEIZURES SPARK FROM ALL PARTS OF THE BRAIN AND NOW SHE HAS TERRIBLE TREMORS CONSTANTLY DR CHUGANI TOLD US SHE NEEDS A TEST THAT CONSISTS OF TAKING A PART OF HER MUSCLE OUT OF HER ARM AND SENDING IT FOR BIOPSY BECAUSE IT MAY BE A METABOLIC DISEASE. I WIL
KEEP YOUR SON IN MY PRAYERS ALWAYS.
MICHELLE MIRABAL - 09/09/00 05:00:14
My Email:MISHIEGARDENGIRLAT AOL
Where are you from?: LONG BEACH, CALIF
Comments:
THANKS 4 SHARING YOUR STORY. I HAVE A 6 YEAR OLD SON WITH INFANTILE SPASMS.WE HAVE HAD NO LUCK WITH ANY MEDICATIONS.SURGERY HAS BEEN RULED OUT. OUR NEUROLOGIST IS DR.SHIELDS AT UCLA.OUR NEXT STOP WILL BE JOHN HOPKINS WITH DR.FREEMEN.
Dustin Marzinzik - 09/01/00 13:01:25
Where are you from?: Hampton N.H.
Comments:
Just wanted to tell you what wonderful people you are , and may your lives be filled with joy!you have a special little boy , who will grow into a great man.God Bless! Are hearts will always be with you and Alex.We have a little boy named Cole 13 mnths.Al
x will be in his daily prayers!Thumbs up Alex!
Hanne Christiansen - 08/16/00 13:12:08
My Email:hc@oj-h.dk
Where are you from?: Horsens, Denmark
Comments:
Hi Emma and Ron
Way to go. God bless you!
Travis and Lisa - 08/05/00 23:32:38
My Email:themacarenamom@yahoo.com
Where are you from?: Eureka CA.
Comments:
Hi shelia, Trevors mom sent me your site. I met shelia thru the ketogenic list. My Son Travis has uncontroled complex seizures. He has been on 10 different meds and the ketogenic diet. Travis is 12 and scheduled for surgery, august 23 at U.C.S.F San Franc
sco.. thank-you for sharing Alexs story, it has helped my son understand that he may be seizure free some day.. god bless you Lisa Scott-Kemph
K ristle Smith - 08/03/00 17:43:18
My Email:Egyptianteam_ks@hotmail.com
Where are you from?: England
Comments:
This page is great!, my nephew has the same conditions and he is now coming up three years of age.
He has been to Great Ormond Street Hospital in London, where they took some tests.
I hope that he does end up like Alex, this is an truly amazing story, i just hope that James's story can be a miracle one too!!!
Please email me on how Alex is doing because my sister wants to know, i've also printed out the story because she wants to read it.
Thanks alot.
Kristle Smith (15) England.
SONIA MTZ - 08/02/00 20:56:19
Where are you from?: LAS VEGAS N.M
Comments:
THANK YOU FOR GIVING ME HOPE.
Lisette & Alex Romero - 07/31/00 03:19:47
My URL:home.sprintmail.com/`coolspot
My Email:gigglesLR@aol.com
Where are you from?: Bronx, NY
Comments:
Alex has not yet been diagnosed with infantile spasms but he has seizures (epilepsy). But his neurologist tells us it can still lead to infantile spasms. Alex's web page is just a regular page w/ pictures of him. He is 4 1\2 months now.
Pamela K. Preston - 07/30/00 23:43:10
My Email:Scatbert@ gateway.net
Where are you from?: Carterville, Illinois
Comments:
My great nephew was just diagnoised. I am trying to learn as much as I can. Alex's story has given me lots to think about. I will add your family to my prayers.
kamlesh & Monica - 07/30/00 10:06:01
My Email:kamgarg@hotmail.com
Where are you from?: India
Comments:
I will pray to God for his full recovery .He will be normal child.We have to keep hope
I am father of 20 months old son who has detected with West syndrome( Infantile Spasams).Iam trying my level best but still my son is having problem. He is on Vegabatim ( Sabril) since three months.We have tried with ACTH, Sodium Volparite before Vegabati
.Let's see
Best regards
kamlesh & Monica
DIANA - 07/29/00 18:28:55
My Email:DDELSALTO@AOL.COM
Where are you from?: NEW JERSEY
Comments:
I ALSO HAVE A BABY WITH A SEIZURE DISORDER
SINCE HIS 1ST WEEK OF LIFE, MY SON IS GOING TO BE ONE YEARS OLD 8/3 ..
MY SON CAN NOT SIT UP, OR HOLD HIS HEAD UP TO WELL YET.
IF YOU LIKE TO TALKE SOME MORE I WILL LOVE TO
KEEPING YOU AND YOUR SON IN MY HEART.... DIANA....
LISA MATTHEWS - 07/28/00 16:06:45
Where are you from?: ESSEX ENGLAND
Comments:
I HAVE A 7MONTH BABY NAMED CALLUM WHO HAS JUST BEEN DIAGNOSED WITH INFANTILE SPASMS I THANKYOU FOR YOUR STORY IT HELPS ME AND MY FAMILY THROUGH A ROUGH TIME
CRAIG MUSTO - 07/23/00 21:42:08
Where are you from?: SWINDON ENGLAND.
Comments:
OUR SON JAMES HAS INFANTILE SPASMS AND IS GOING
TO GREAT ORMOND ST HOSPITAL LONDON TOMOROW
FOR HIS SPECS SCANS.
WE ARE NOT ON THE WEB AT THE MOMENT BUT WILL
CONTACT YOU WHEN WE ARE IT IS VERY ENCOURAGING
TO READ ALEXS STORY AND GOOD LUCK TO ALEX FOR
THE FUTURE.
HOPE TO SPEAK TO YOU BY CHRISTMAS.
lori harvey - 07/22/00 22:49:30
My Email:labolia@aol.com
Where are you from?: port st lucie fl
Comments:
My 3 year old son Elijah is on the ketogenic diet for a year.He was on topomax but he had an extreme allergic reaction.Almost died! The diet controlled his seizures for a while but they came back but not as much.The doctor also put him on clonapin with
he diet. We still need more control.He cannot sit up by himself ,hold objects ,track, (Delayed Visual Maturity)I have to feed him his bottles & food like a 3 month old. PLEASE E-MAIL ME ANYTHING THAT COULD HELP MY SON & I . I AM SO HAPPY THAT ALEX HAS DON
SO WELL! IT IS SO HARD TO GET INFO ON I.S. AS YOU KNOW. THANK YOU SO MUCH LORI HARVEY
kris - 07/22/00 21:51:52
My Email:krisandkarl@aol.com
Where are you from?: mn
Comments:
I stumbled upon your web page looking for info on epilepsy. My son was also diagnosed with infantile spams and treated with ACTH. Although his spasms were cured, the site generated my curiosity and actually taught me a few things. Hopefully, it will do t
e same for others.
Donna Cottrell RN, CNOR - 07/22/00 17:20:42
My Email:kmcdwc@earthlink.net
Where are you from?: Little Rock, Arkansas
Comments:
Great story about Alex. I was a neuro surgical nurse at Arkansas Children's Hospital. So happy for you at the progress we make everyday in medicine.
I am writing a school paper on Dr. Alexa Canady. If you would like to send me your personal view on this fine surgeon, I would like to include your comments in my paper. Thanks and God Bless. Donna
James Getty - 07/17/00 18:48:32
My Email:gettyj@weight-watchers.com
Where are you from?: Long Island, NY
Comments:
Hi,
Glad to hear Alex is doing well. Our daughter also had IS caused by a stroke in-utero. She is a real treasure to be around. If anyone has any questions. Please feel free to write. The only people that can relate to what you are going through are those w
o have been there. Alexa is now 8 years old. Thanks for sharing your story.
James Getty
Sherry Woodrich - 07/12/00 22:34:10
My Email:STWOODRICH@CS.COM
Where are you from?: Tucson, AZ
Comments:
My daughter was 2 months old when we first became aware of her seizures. However we knew at 5 months gestation that she has an abnormality in her brain. Because of my age and her father's age my midwife suggested we consider an amniocentises after careful
consideration I agreed to the procedure. On the ultrasound the saw a malformation which was labled a porencyphlic cyst and monitored very closely through ultrasound for the remainder of my pregnancy. We met with numerous doctors and specialists and all s
id the same thing wait and see. When Katie was born they did a CAT scan and AN MRI they discovered 3 porencaphalic cysts 2 other cysts and an epidermoid tumor. The tumor was what had actually shown up on the ultrasound. we too went through the ACTH treatm
nt with amazing results her seizures completely stopped. Katie is now 5 months old and at her 4 month developmental check up was rated at slightly above 6 months! However the past month has been very frustrating our insurance company did not want to cove
the name brand drug Depakene (I had paid full price for her perscription while wewaited for insurance approval)the next refill was the generic valproic acid (ins.co. said no to the name brand)She began having seizures again and as yet have not been able
o control them we are back to the name brand and switched pharmacies (the first dispensed the Depakene incorrectly. Depakene must be dispensed in glass bottles to prevent the medication from adhering to the plastic.)At this time there are no plans to oper
te on the tumor, it has not changed since it was first detected. The location also makes surgery very risky. At this point I have found the seizures not,the medication drain her of her personality. We see her neurologist in afew days and her neuro surgeon
next month. Katie was in her exersauser the other day playing and I heard her hit on of the toys and smiled to myself at how much she enjoyed that silly looking thing. I heard her hit it a second time, the third time I realized she was having a seizure. I
hit me at that moment that I won't always be there to protect and hold her. She'll be walking before long how will this affect her not only developmentally but emotionally/ I don't have the answers we take life one day at a time and, some days one moment
at a time! I am more grateful than I know how to express to have her in our lives she has a way of touching people even strangers. (I know every one loves babies and every body has the most beautiful baby but mine really is!)
Lisa Markham - 07/11/00 18:22:55
Where are you from?: Port St. Lucie , FL
Comments:
I have a 2 1/2 year old son who was diagnosed with Infantile Spasm West Syndrome when he was 5 months old. He was put on ACTH and phenobarbitol and has been seizure free for over 1 1/2 yrs. He will be totally off the phenobarbitol in 4 weeks if everything
keeps going well. He is still about a year behind others his age but is getting OT, PT and SP therapy 3X a week. I am very hopeful that he will be a normal little boy. I hope everything keeps going well for you and your family.
Andrea Fuentes - 07/04/00 20:32:52
My Email:velasq@attglobal.net
Where are you from?: Miami Florida
Comments:
HI, thanks for sharing such a great story. It's wonderful to hear about a chlid doing so well. My baby Michael just started ACTH about 3 weeks ago and the seizures have stopped. His IS came from a prenatal stroke. Anyway, thanks again.
Dawn - 07/02/00 00:10:16
My Email:DrJ1157@aol.com
Where are you from?: Largo, Florida
Comments:
I'm looking for information on infantile myoclonic
spasms.My great niece has been diagnosted with it.
Her spasms have just returned after being treated
with the steroid you mentioned. The doctors don't
offer much hope. Her doctor has just suggested
Vigabatrin. I would like more information concerning the drug and it's side effects.Your story I found full of hope.
CARYN & BRITTNEY HAYES - 06/25/00 23:29:30
My Email:LUXURY DESIGN @ AOL.COM
Where are you from?: SOUTHFIELD, MI
Comments:
THANKS FOR TELLING YOUR STORY..CONTINUED SUCCESS AND PROGRESS FOR ALEX..GOD BLESS YOUR FAMILY!!
Colleen Mattia - 06/14/00 00:18:08
My URL:http://www.aol.com
My Email:crm1774@aol.com
Where are you from?: Detroit
Comments:
My 4 1/2 year old daughter Ashley is scheduled for the same surgery that your son had. Her dates are August 25 and 30 of this year. We are also at Children's Hospital and first saw Dr. Chugani last May to begin our own long process. I must say, he has no
been very communicative with us and we are a little dissappointed. Over the Ashley has had a PET scan, FMZ scan, MRI, EEG, Video monitoring, psycological evaluation, etc to prepare us for this surgery. We are very apprehensive about the process. She b
gan having seizures(petit mal, absonance and grand mal) when she was 4 months old. We have tried many different treatments (Ketogenic diet, 5 different medications, Vitamin B6, Vigabatrin, etc. It has been a very frustrating process. Her seizures orgin
te in her speech center, left temporal lobe, and she doesn't talk. She is in special education and receives speech, occupational and physical therapy. She is a very vivacious, social, happy, loving little girl. I am so happy that your son is doing so w
ll, it really puts me at ease that I will one day hear Ashley say,"I love you, Mommy!!!". Good luck and please contact me via e-mail, I would like to hear more about Alex's progress and I would also like to get in touch with the other family, Hummitches.
Thanks for the encouragement.
jeanne monaco - 05/31/00 20:54:12
My Email:missjeanne19@aol.com
Where are you from?: boston area
Comments:
I have a nine year old daugher who had infantile spasms with hypserythmia. She is a mircle. Please feel free to contact me.
Trenicia Dowsing - 04/26/00 22:53:06
My Email:Queen fo real @ aol.com
Where are you from?: Memphis, TN
Comments:
I read your story, and could not believe there is someone out there in the world with the same things going on in life as I have. My story is so familiar I have a daughter who had grandmal seizures at 2 months old. She is now 5 years old and responds on 1
month level. Developmentally she can not walk or talk. I am so happy for your miracle you received from GOD and the outcome of Alex's surgery. Please send me info on what organizations I could go to for help. My baby takes almost the same meds as your li
tle one. The only thing is that she takes it Every 4 hours. Thanks for your story and inspiration on my decision to allow our neurologist to refer her for the surgery. GOD Bless and keep your whole family. Also give big brother and extra hug I know he is
lot of help and patient. Again Thank You so much!
Todd & Julie Coates - 04/18/00 12:59:06
My Email:tcoates@financialengines.com
Where are you from?: Cincinnati
Comments:
Emma and Ron,
What a moving story...I am so sorry that we could not have provided you with love and support during this very trying time....it's amazing how quickly time passes and how easy it is to lose touch. Our thoughts and prayers are with you and we are confiden
that the "Catanzaro Spirit" will provide Alex with a long and prosperous life. We will look forward to calling you soon.
Take care and good luck!
Todd, Julie and Payton (and Hannah..coming in August!)
BILLIE berndt - 04/15/00 16:40:24
My Email:jkmetz@lsol.net
Where are you from?: Manitowoc, WI
Comments:
My daugther has Cortical Dysplasia She has had it from birth she is now 1 year old. She has had all kinds of test and tried several medications. They would like to do surgery but I would like as much information on it as possible or any other help you co
ld give me.
thank you
Annette Aguirre - 04/11/00 07:12:46
My Email:n4aguirre@aol.com
Where are you from?: Las Vegas Nevada
Comments:
My niece was just diagnosed with idiopathic spasms, she is currently on phenobarbatil. I'm very fearful of what can happen and trying to learn all I can about it. Your story has enlightened me..thank you.
kKim - 04/05/00 15:16:47
My Email:JoKiBo@aol.com
Where are you from?: Virginia
Comments:
Your story is so inspiring. Our Taylor started with seizures, actually status epilepticus the day he received his 3rd DPT immunization. It has been an ecruciating nightmare ever since. Taylor is 8 years old now, has seizures daily and is cognitively about
18-24 months old. He has maybe 5-10 words. We have tried every drug in this country and beyond, the Ketogenic Diet and most recently the Vagal Nerve Stimulator.Nothing seems to work. Taylor has all types of seizures but mostly Tonic-Clonic. These really i
creased when we implementd Lamictal about 4 years ago. We have pursued the option of surgery a couple of times. Apparently there is no particular focal site. even so we are going to pursue it again because of renewed energy inspired by your story.We pray
Alex continues to improve every day. Thanks for sharing your miracle.
Christina Harrington - 04/05/00 01:46:06
My Email:jharri7145@aol.com
Where are you from?: Irving, Texas
Comments:
I have read your story and it sounds very fimilar, except the surgery part. I am glad Alex is doing well. I have a 4 1/2 yr.old son who had infantile spasm since the age of 3 weeks old. Now he has more tonic seizures than infantile spams. I hope only happ
ness for u and your family. Good Luck.
Christopher's mom,
Christina
WANDA - 03/28/00 02:37:42
My URL:http://@AOL.COM
My Email:WANDAINAR
Where are you from?: ARKANSAS
Comments:
I ENJOYED READING ABOUT YOUR SON AND WISH YOU THE BEST OF EVERYTHING.
Lion Keith Gorham - 03/23/00 15:42:36
My Email:Keith@sgorham.freeserve.co.uk
Where are you from?: Grimsby in the UK
Comments:
I have just copied your web site and was grateful to share your story as my Lions Club is probably going to help a 15 moth boy also called Alex with the same problem as your son Alex.
I send you my best wishes for the future and hope you Alex is making good progress.
Don & Denise Bulger - 03/22/00 16:37:59
My Email:dpbulger@home.com
Where are you from?: Winnipeg, Manitoba, Canada
Comments:
Emma,
Thanks for the information over the phone this morning. Our Alex is facing the same developmental challenges and we can't wait to see some progress!! Take care. Don
Kyle Close - 03/20/00 15:11:22
My Email:kchunt22@aol.com
Where are you from?: california
Comments:
Hope your doing well.
Tarnesia - 03/19/00 17:10:07
My Email:Davante@aol.com
Where are you from?: Florida
Comments:
I have an 8month old daugther, who at 4months was diagnosed with cortical dysplasia. Until now she has been perfectly fine. Now the seizures are more frequent and we see development delays. The doctors are now looking at surgery, but I don't know if this
s best. The therapy is really working, but I can not stand to watch my child have seizures. all I do is pray that God will show me the right way and that my little girl will be alright.
Wendy - 03/11/00 00:22:10
My Email:WMott56789@aol.com
Where are you from?: NY
Comments:
Very inspiring story....best wishes!
Dee - 03/09/00 22:55:50
My Email:LouATay@aol.com
Where are you from?: Connecticut
Comments:
Please keep me posted on Alex and anything new you find in reference to cures on Infantile Spasm. I have a neice name Tyler who is presently suffering through this severe disease. Please keep us in your prayers as we pray for Alex and the many other child
en afflicted with "Infantile Spasm" Thank You and God Bless.
Dee
Stephanie - 03/04/00 22:03:47
My Email:sheetss@roberts.edu
Where are you from?: Rochester, NY
Comments:
Hi. I came across your web page while doing a search on infantile spasms. My son, 3 months old, is being treated for infantile spasms. He is on the ACTH shots once a day and valproic acid twice a day. It's encouraging to hear your son's story. I hope
ur son does as well as it sounds your son is doing. You never think it will he your child on the other end of some sort of medical problem. Have a good weekend.
Terri Womack - 03/03/00 14:03:31
My Email:womacks@ipa.com
Where are you from?: Rogers, Arkansas
Comments:
Wonderful story. My child had suspect infantile spasms but was not diagnosed. He has now been diagnosed with partial/complex seizures. He has possibly two focal points, all on the left hemisphere. We are very interested in surgical options but have no
found anyone willing to even test to see if he would be a candidate for surgery. He also had a PET Scan that showed unusual activity on the left temporal lobe. His learning has been greatly affected, but he is able to do and understand most things.
nichole levison - 03/02/00 02:41:17
My Email:nll82@aol.com
Where are you from?: New York
Comments:
You're story about Alex inspired me. My neice Emma, who is 6 months old has had infantile spasms since she was born, and now that I have read your page, there has been many more medicines that we can hopefully try in the future. Thank you so much!
od Bless you all. My name is Nichole, and I am 17 years old, and my e-mail address is nll82 @aol.com Please e-mail me on further uptates on Alex. I would love to see how he is progressing!
Tonya - 03/02/00 01:50:35
My Email:forgive7x7@aol.com
Where are you from?: Upstate NY
Comments:
I am so encouraged by reading all of the stroies here. My Emma has had Infantile Spasms for 6 months now, and nothing has worked. Sometimes it feels like I am the only one in the world that has gone through this, but I'm not. I am so glad I found all o
these stories.
torben - 03/01/00 00:28:48
My Email:dkbaker2000@yahoo
Where are you from?: you know
Comments:
great page Emma!!!!!!!!!!!!!!
liz - 02/28/00 05:53:30
Where are you from?: IL
Comments:
that was a great story! i was just doing research for school but it made me cry! i wish the best for your son!
Barb Swoyer - 02/26/00 16:44:08
My Email:Johnswoyer@email.msn.com
Where are you from?: Boston
Comments:
Finally checked out your web page, Alex is adorable and inspiring. We will miss your input on the list. Am wondering if I'll be in your shoes one of these days. Still have not followed up with Chugani re: Jake's PET. It's been a tough year for him so
that may be in the cards. Best of luck to you all. Barb Swoyer, Jake's mom
Angela Bell - 02/19/00 15:50:18
My Email:redhat@gibralter.net
Where are you from?: Jacksonville,NC
Comments:
Thanks for sharing your well-written story, I myself have been, and am currently experiencing epilepsy but I have only tried medicinal treatments rather than suregeries. Good luck for a long and happy life with your son.....God Bless
Gail Biancucci - 02/18/00 04:10:42
My Email:none yet
Where are you from?: Beverly, MA
Comments:
Thank you so much for sharing your story with everyone. I spoke with you tonight regarding my son, Brendan and contacting Dr Cugnani. You have already helped and informed me and I thank you. I'm sure I'll be in touch. Wishing your WHOLE family only th
best. God Bless!
Vincent Gonsalves - 02/17/00 20:07:40
My Email:vinnyg@canada.com
Where are you from?: Canada, Vancouver
Comments:
It is awesome to read the little guys story, I'm 21 now and had the surgery myself on the 18th of feb 99' and been siexure free since, PRAISE GOD.
So to hear about the little guy is great.
All I can say is that my Jesus is one that cares for ALL his kids, even the little ones.
Hope all continues well for you and the family.
Vincent
Michelle McCall - 02/16/00 01:15:31
Comments:
Elizabeth Sullivan - 02/15/00 13:44:13
My Email:ellizabeth_sullivan@banet.net
Where are you from?: Framingham, MA
Comments:
Wow, what a powerful story and so well written. I too, had brain surgery for my seizures at age 21 in Montreal Canada. I have been seizure free since then(am now 45). Your story is such a wonderful way to bring the message of hope to individuals and fam
lies affected by epilepsy. I am traveling to Dallas sponsored by the Foundation this week Feb. 20-28 to become a HOPE trainor, Helping Other People with Epilepsy. I would love to have you help me create an Elizabeth Web page on my saga with epilepsy. Le
's talk so we can continue together to bring hope and support to those affecting by epilepsy's clutches.
I can be reached via email or 508-872-2094.
karen - 02/12/00 02:29:47
My Email:Cardinalkg@aol.com
Where are you from?: NC
Comments:
My husband has seziures and will be going this weekend for his MRI> Even though he does not have them often, they take a tremendous toll on his body. I am glad for Alex, may God bless him and his family.
Mike,Yovanna,Brad,Barb Mullens - 02/11/00 04:23:00
My Email:MullensMike@hotmail.com
Where are you from?: Great Falls, Mt 59404
Comments:
Our grandson, Tanner Mullens, age 9 months, was diagnosed with infantile spasms at age 4 months.
After numerous meds., he still has the seizures and has regressed to a newborn level. Thanks to you and your web page, we have had contact with Dr. Harry Chugani and are in the process of making arrangements to take Tanner to Detroit and be evaluated. H
pefully, Dr. Chugani and his team of doctors can help our Tanner.
We are so please to hear about Alex's progress and hope he continues to improve.
Thanks again for sharing your lives with us.
aloevera9 - 02/02/00 13:00:04
Comments:
Im glad to hear all is well for Alex. My friends son was just diagnosed and I hope for possitive results. Thanks for sharing your story.
Grandpa&Grandma Cat - 01/29/00 18:12:11
My Email:B.Catanz316@aol.com
Where are you from?: Johnston,R.I.
Comments:
Excellent job on this website
Diana - 01/25/00 21:17:36
My Email:diana_bradbury@hotmail.com
Where are you from?: Vancouver, Canada
Comments:
I am inspired about your story about Alex. I truly hope everything is well for Alex and your family. My son is almost 2 1/2, and has had odd spasms since having his 6 month shot (we have only had one EEG when he was just over 1, but found nothing). I am i
the process of trying to find out more about it, as I am worried about him.
God Bless, Diana
Tonya Gray - 01/22/00 17:15:51
My Email:GLOBBeGLUU @AOL.com
Where are you from?: Orignal Mich./now Fla.
Comments:
Hello! My name is Tonya . I have a Beautiful 2 1/2 yr. old daughter named Karley. At 3 months old she started having seizures. First partials then complex partials then generlized finally spasms. She has been on all the same meds. as Alex and a couple
more. She also had ACTH injections that took her spasms away. She was seizure and med. free for 9 months. Then in Nov. 98' she had a breakthrough seizure and the doctors said to do nothing just watch her. Again in Dec. 98' she had another we then put her
n Phenobarbitol and everthing was okay until March 99'. She started having these "spells" after sleeping (about 10 times a month) and continues to have them. I have video taped these and showed the tape to her neurology doctors, they are not sure if they
are seizures or not. She has had 3 EEG's sence this started, nothing was captured and her EEG remains normal. We are scheduleing a 12 hour sleep EEG in hopes to catch one. This is very frustrating because I feel if these spells are seizures (The doc's hav
said it could be a type of sleep disorder) they could be holding her back on catching up. She is also been in PT, OT and Speech classes 3-5 times a week. She is at about a 17 month level depending on task. She
'toddles" not a full walk yet, but soon! She says alot of vowels not complete words but uses some sign. She has come a long way but also has a long road ahead of her. I had one neuroloigest tell us she would be a vegetable in a chair with possibly CP and
other things, luckily that just made us more determined to prove him wrong. She continues to do well, everyday a little something new. Please update me on any new progress of Alex, I wish you all my best.
Sincerly,
Tonya Gray
hazel - 01/17/00 14:14:26
Where are you from?: canterbury uk
Comments:
heart warming story, my grand-daughter has been diagnosed with infantile spasms at 6 months, very similiar to alex. early stages of treatment show no signs of abating seizures. comforting to know there is hope. thank
Donna Blackiston - 01/12/00 12:56:06
My Email:claudeb@dmv.com
Where are you from?: Millington mD
Comments:
I loved your story! It's always great to see what God can accomplish through doctors. God Bless!
linda - 01/12/00 07:26:50
My Email:w4lsage@aol.com
Where are you from?: california
Comments:
it was very touching to read alex's story. i'm doing research on a paper about brain removal and the effects of it. your site was informative. thanks.
Tina - 01/11/00 08:35:44
My Email:LNTLJHT@Y-City.Net
Where are you from?: Zanesville, Ohio
Comments:
Thank you for letting me read your story. I have a four year old son that has had 3 types of seizures so far and maybe a forth, they may have changed again. I never give up hope. He's our angel. We'd be lost without him. He's had it rough ever since birth
But we had him on that vigabritine and it helped them, but it took all of his muscle tone away and he slept all the time but since coming off of it he has came a long way. He starting to do weight bareing on his legs and he gets better on the time with e
ery thing else. He is even holding his head up pretty good and can move his hands and starting to hold things, esp. his feet. He actually looks and listens to us. I don't know how much he understands, but he doesn't turn away anymore and I love that. He's
been thru alot and it breaks my heart every time he has a seizure. But he's been an angel thru it all. I've seen alot of people just give up on their child and just use them for the attention from everyone and it makes me sick. I'd do anything to see him
ave a normal life. But I could never walk away. God give him to us to love and I always will. Some people I've met says why did God do this to us. He didn't do this to them. Like a poem I was givin said, some of his children aren't perfect in everyone's e
es, but he gave my son to me cuz he felt I could handle it and take care of him and love him, no matter what. I never thought I'd be strong enough, but I found out really fast that I'm stronger than I thought I was. Sure it can be hard sometimes, but any
hild is worth it.
Thank you for listening to me.
Tina
Karen Johnson - 01/08/00 16:15:49
My Email:zappa19@gateway.net
Where are you from?: Massachusetts
Comments:
Your son's story sounds so much like my son's it's scary. Tyler was diagnosed with IS at 3 months. Immediately he was started on ACTH and the hypssarithmia was gone in 5 days. He was on injections for 6 weeks and the spasms stopped for 2 1/2 months. I
February of 99 his spasms returned. We went to Canada in March and he has been on Vigabatrin since. The spasms have not stopped completely. He is now on Vig and Topamax. Our next step is to see if he too has a focal point and possible becoming a cand
date for surgery. He is now 16 months old. He is walking without assistance however he is not able to pull himself up on anything yet. He crawls, scoots on his butt, smiles constantly, is extremely happy. He says all kinds of sounds but no words. He
as therapy once a week and has improved dramatically over the last month. His development level is approximately 12 months. I would love to hear from you about Alex's progress. Thanks for providing hope that there is possibly a light at the end of a ve
y long tunnel.
LETTIE - 01/07/00 17:15:07
My Email:gdlittleangels@aol.com
Where are you from?: SAN ANTONIO, TX
Comments:
I AM SO GLAD TO HEAR THAT ALEX IS DOING SO WELL. WE JUST FOUND OUT LAST WEEK THAT MY DAUGHTER IS HAVING INFANTILE SPASMS. AT FIRST THEY DID 3 EEG'S AND THEY CAME OUT AS SEIZURES. WELL WHEN WE WENT TO SEE THE DOCTOR HE SAW MY DAUGHTER HAVE A SEIZURE AND
HE TOLD US THAT IT LOOKED LIKE INFANTILE SPASMS. HE HAD AN EEG DONE IN THE OFFICE AND IT CAME BACK AS INFANTILE SPASMS. SHE HAS BEEN ON PREDNISONE FOR A WEEK AND WE SEE SOME PROGRESS. THE DOCTOR SAYS THAT SHE WILL BE ON PREDNISONE FOR 6-8WKS AND THEY S
OULD STOP COMPLETELY. IF THEY CONTINUE THEN HE WILL START HER ON THE SHOTS. I HAVE ALWAYS FELT SO ALONE AND NOW HEARING YOUR STORY REALLY HIT HOME. BECAUSE EVERYTHING YOU HAVE DISCRIBED IS WHAT I HAVE GONE THROUGH ALSO. I KNOW THAT THERE ARE OTHER FAM
LIES THAT ARE GOING THROUGH THE SAME THINGS WE HAVE BEEN THROUGH. AND THANK YOU FOR THE INFORMATION ON THE DOCTOR THAT DID SURGERY ON YOUR SON. MAY GOD BLESS YOU AND YOUR FAMILY AND WE WILL KEEP ALEX IN OUR PRAYERS.
Nikki - 01/03/00 21:47:06
Where are you from?: New Mexico
Comments:
I am just reading about IS because my cousins little boy, Trey, has it. Surgery is not an option for him and he is doing poorly. Your story is very touching.
Katie Stanley - 12/19/99 17:08:41
My Email:Soccer4532@aol.com
Where are you from?: Englewood,Ohio
Comments:
I have been recently diagnosised with Syncope Seizure, however, last night I began having convulsions. I am 19 years old...and on the internet to look up some answers when I came across your web site. I am so happy that your child is doing so well. I w
sh you all the happiness and joy this season.
karen baker - 12/10/99 20:26:20
My Email:www.jackier28@aolcom
Where are you from?: Belen, New Mexico
Comments:
this is karen baker my daughter merissa also has infintile spasms. we are now giving her gabitril
the acth didnt work. im now going through what you went through. please email me back at the given address. thank you.
Marnie - 12/02/99 22:26:11
My Email:mtlworks@voyageur.ca
Where are you from?: Keewatin,ON.CANADA
Comments:
I found your story very informative and encouraging. My 2 year old daughter was diagnosed
with infantile spasms/myoclonic seizures in October 1999, since her diagnosis she has been receiving ACTH injections, which have controlled the seizures. All the possible blood tests and scans have been conducted with negative/normal results. Reading yo
r similar story makes me aware of what may happen once the medication is terminated, it also informs me of other alternatives to control the seizures, as I am willing to try almost anything to ensure my daughter can lead a seizure free life. I am glad y
ur story has had such a happy ending, it is so encouraging for the parents who feel like they are up against a brick wall. Thank you.
Marnie - 12/02/99 22:18:49
My Email:mtlworks@voyageur.ca
Where are you from?: Keewatin,ON.CANADA
Comments:
Marnie - 12/02/99 22:17:47
Comments:
trish stath - 11/30/99 22:54:58
My Email:spwn312@aol.com
Where are you from?: queens new york
Comments:
i loved your web page it brought tears to my eyes i have a 19 mo old corrected 15mo old baby boy named christopher who has a vp shunt g tube and infantile spasms he has had 19 operations 17 of them for shunt revisions. he is on pheno barb, klonipin,reglan
zantac, and now topamax. he receives pt ot speech and special ed 7 days a week.it has been a very long and scary ordeal but he is the light of my life. he just stated to smile again and is trying to vocalize a lil but doesnt really do much of anything el
e we hope in time he will with the will of god and the fighting strength that he carries within himself. i have accessed many agencys for assistance but the red tape can be so frustration i am now in the search of a catologue that has physical and ot toys
he needs a special type of hand brace to keep his thumbs from tucking in. i would love to enlarge my family of friends with other parents who had had similar experiences it is great to be able to to relate to other people other than drs and nurses and hom
health aids and therapists i would love any additional in put or ideas thank you for sharing your story and taking the time to read mine. god bless hope to hear from you soon thank you again for your inspiring story. trish
trish stath - 11/30/99 22:54:32
My Email:spwn312@aol.com
Where are you from?: queens new york
Comments:
i loved your web page it brought tears to my eyes i have a 19 mo old corrected 15mo old baby boy named christopher who has a vp shunt g tube and infantile spasms he has had 19 operations 17 of them for shunt revisions. he is on pheno barb, klonipin,reglan
zantac, and now topamax. he receives pt ot speech and special ed 7 days a week.it has been a very long and scary ordeal but he is the light of my life. he just stated to smile again and is trying to vocalize a lil but doesnt really do much of anything el
e we hope in time he will with the will of god and the fighting strength that he carries within himself. i have accessed many agencys for assistance but the red tape can be so frustration i am now in the search of a catologue that has physical and ot toys
he needs a special type of hand brace to keep his thumbs from tucking in. i would love to enlarge my family of friends with other parents who had had similar experiences it is great to be able to to relate to other people other than drs and nurses and hom
health aids and therapists i would love any additional in put or ideas thank you for sharing your story and taking the time to read mine. god bless hope to hear from you soon thank you again for your inspiring story. trish
Donna Benedict - 11/23/99 05:19:13
My Email:jdbene@hotmail.com
Where are you from?: Cranston
Comments:
Emma, your story is inspiring and Alex is a beautiful child with so much love and care in his family. What gifts you are to each other! We thank God for giving such wonderful parents to such a dear boy. You are all in my thoughts and prayers.
Alex, precious child, you are doing so well! So many people know what a strong and brave little boy you have been in only 18 months. We thank God for his blessings in you and we thank God for giving you to your Mom, Dad and brother. I hope I can meet you
some day soon and give you a big hug and tell you how very happy I am that you are doing so well.
This will be a very special Thanksgiving this year. I wish you all every good thing together.
Donna
MF Lim - 11/22/99 10:17:00
My Email:mflim@infortech.com.my
Where are you from?: Malaysia
Comments:
Congratulations!!!
I nearly cry out after reading your page.
My son, Yen Wen birthday on 15 Apr 1998 is having exactly the same problem with Alex since his 3rd day of his life. We are still struggling with those medications and finding ways to help him.
Regards.
karen tomkins - 11/21/99 17:48:50
My Email:george@whitehead41.greatxscape.net
Where are you from?: Manchester. Great Britain.
Comments:
You are all remarkable and brave people. We hope your children bring you great joy.
Kristin Junge - 11/11/99 06:53:18
Where are you from?: Children's Hospital Cincinnati Ohio
Comments:
Your story is miraculous. I am a neurology nurse in a pediatric unit and currently have a patient newly diagnosed IS. I am deeply moved by your story and wish it were true for everyone with an infant diagnosed with IS. I'd love to print your story for m
parents of this patient but I'm not sure about how it will be perceived as they are in denial. I hope Alex remains seizure free. PS I have a son named Alex and I was diagnosed with epilepsy as a child and outgrew it. Keep your faith and positive attit
de and may God Bless your little Alex. Kristin Junge RN
jim santoliquito - 11/09/99 20:45:50
My Email:gabbsanto@aol
Where are you from?: gilbertsville pa
Comments:
my son matthew is 18months old . he was diagnosed with IS 9/30/99. matthew is developmentally delayed and we have no answers. your story gives me some hope that matthew may live a comfortable life. thank you.
ingle - 11/07/99 23:11:03
Comments:
nancy affatato - 10/30/99 00:27:46
My Email:nka65@aol.com
Where are you from?: new jersey
Comments:
my son alex who is 18 months of age had a right hemi last october 98. he too is seizure free and progressing very nicely, sincerely,
Frances White - 10/28/99 03:57:32
My Email:biggriff@ponyexpress.net
Where are you from?: St. Joseph, Missouri
Comments:
I have a 11 year old daughter who has been having mild seizures for 4-5 years that I know of. I am just getting ready to have an MRI done to see why her head is so large. The frustration I am experiencing is enormous. If you would like to chat I coul
use a friend who would understand what I am going through. Thanks, Frances White
Susan Bean - 10/18/99 11:53:13
My Email:sbean@jax.org
Where are you from?: Ellsworth, Maine
Comments:
My co-worker has a daughter that is autistic and I am her good friend as well. She came back and told him that one of the options for her daughter is to have part of the brain removed and I cried and told her that is a hard decision to make. After reading
your story I know it can probably help her daughter. I am fortunate I have 2 healthy children, but that can always change. I am happy for you and your family, I think it is wonderful that modern medicine has been able to help Alex and many other children.
God Bless you all!
Gia Earnest - 10/18/99 01:12:52
My Email:Giaearn@aol.com
Where are you from?: Clinton, MS, USA
Comments:
Thanks for the info. We are in the process of decision making for our little 10 year old miracle Gracie! Surgery or not? We are praying hard for an answer.
Thanks for sharing your story!
Tracey Sharpe - 10/17/99 05:16:09
My Email:subsonic@advnet.net
Where are you from?: Port Huron, Michigan
Comments:
Thank you very much for sharing your story! I'm glad things worked out as best they could for your family. I hope everything continues to go well!
Waleska Colon MT(ASCP) - 10/15/99 22:22:34
My Email:user810990@aol.com
Where are you from?: Cranston RI
Comments:
Good Luck!!!!!!
JP - 10/13/99 15:50:53
My Email:JP3RDLEG23
Where are you from?: YUKON/OKLAHOMA
Comments:
GOOD LUCK AND BE STRONG
Charles L Fribourg - 10/12/99 23:17:13
My Email:pop.nycap.rr.com
Where are you from?: Albany New York 12061
Comments:
Wehave 24 year old daughter with seizures
Donna LaGrou - 10/09/99 16:26:20
Where are you from?: St. Petersburg FL
Comments:
Thanks for sharing. It helps.
An Huynh - 10/07/99 02:35:41
My Email:anhuynh@sdccd.net
Where are you from?: San Diego
Comments:
My best wish for Alex. I believe he is a great fighter.
AH
sharon nicholas - 10/02/99 15:06:26
My Email:nich5pack@aol.com
Where are you from?: Elizabeth, Colorado
Comments:
Your story is sooooooo much like my sister's it'scary! Only difference is that he has tuberous sclerosis. She would love to talk to you or write you but she is unsure. Kolten will be having his surgery in Jan., he is three. What a beautifully written stor
about Alex! I hope he is doing terrific! Finally! Encouraging news for my nephew. Melanie Larson is my sister. If she doesn't contact you this week, I'll write again. Thank you! Thank you!! Sharon
Melanie Larson - 10/01/99 23:35:48
My Email:jimlarson@uswest.net
Where are you from?: Denver, CO
Comments:
Thank-you. You give us hopethat there is a light at the end of this long tunnel we have been in for so long. We now have hope for our son Kolten
Kate Pleger - 09/28/99 18:33:48
My Email:eweb@execpc.com
Comments:
Emma: I gave you an incorrect e-mail address. Please note the correction. Thank you. P.S. Alex is such a beautiful boy! I am so happy for you that things worked out so well. God bless! Kate
kate pleger - 09/28/99 18:27:42
My Email:exeb@execpc.com
Where are you from?: Green Bay, WI
Comments:
Emma: My son Matthew has Infantile Spams - onset at 3 months. We tried ACTH (almost got a normal EEG!) but had to discontinue due to hypertension and an enlarged heart. We then went to Topamax with some benefit but Matt was very dopey. We now have him
on the Ketogenic diet and have recently added Depakene. We are not seizure free and we are now looking for additional options. Sound familiar? Matt's neurologist is placing a call to Dr Harry Chugani and I am anticipating a trip to Detroit for further
esting. Although I am not certain if surgery will be an option for us, I am curious to know what functions Alex may have lost as a result of the surgery and how the surgeons, through mapping of the brain, can tell if certain functions, such as language,
ill be lost if the child will not talk (or in Matt's case, make sounds) on demand. If you have a free moment, would you please get in touch with me at the address above (my work) or call me COLLECT at 920-430-9066 after 6pm central time. Thank you for y
ur consideration. Kate Pleger
Dawn Winkels-Blasus - 09/25/99 02:48:54
My Email:The Blinkys@AOL.com
Where are you from?: Rochester, MN
Comments:
I suffered with epilepsy also for 20yrs hoping for
a new drug to control my seizures. I was a surgical candidate but refused the surgery. I finally had surgery at age 20 radical Rt temporal
and have been cured for 11yrs now and off all medications.
Karen Conner - 09/19/99 03:57:43
My Email:KMC321@aol.com
Where are you from?: Houston, TX
Comments:
amanda - 09/15/99 04:27:06
My Email:jetgirl587
Where are you from?: CA
Comments:
I feel you really lucked out! My brother does not has the same thing but he has ADHD ans so does my bf`s brother.I know how hard it is to live a sick relative.god bless
melissa and amanda - 09/15/99 03:48:17
My Email:soccerch581
Where are you from?: C.A
Comments:
I feel that you went trough a very tough time and we are glad that the surgery worked. We just want to tell you thanks from him for not giving up your a great mom and dad and brother!!!!!!!!
Alice Roberts - 09/12/99 01:52:02
My Email:vicentia@aol.com
Where are you from?: Montgomery TX
Comments:
I have a grandson who will be 6 mos old 9/l4/99.
Complications at birth. Diagnosed with infantile spasms. Took ACTH almost two weeks. Now on pill form dilantin. Suspect spasms are coming back.
Nora - 09/12/99 01:04:14
My Email:BrisNana1
Where are you from?: Austin, TX
Comments:
As I read Alex's story I felt as if I was reading my granddaugter Briana's. Briana turned 5 mos. on the 10th of Sept. She was diagnosed with infantile spasms 3 wks. ago. We were in denial and asked for a second opinion. We took her to Childrens Hosp. in
Dallas. The diagnosis was the same IS. I feel
sadness and fear for my darling granddaughter. My
17 yr. old daughter and her husband debated over what med. to start her on. ACTH is what they decided on. Supposedly it's the most effective med. When she was born she was very alert and had her eyes open. She was starting to roll over at 3 mos. Since IS
he has regressed. We have hope and pray the she will overcome this disorder. Thank you for giving us hope.
Christine, Phil & Stephanie Myers - 09/09/99 02:02:38
Where are you from?: Macomb Twp, Michigan
Comments:
Hi Emma,
I've just been catching-up on my emails and saw the address for this wonderful site in the IS egroup. What a beautiful boy Alex is. I'm so happy that things are going well for your family now. Thank goodness for Dr.Chugani. I will email you privately to
atch you up on Stephanie soon.
Take care. Christine
Denise Meitz - 09/08/99 20:36:24
My Email:meitzda@bissell.com
Where are you from?: Grand Rapids, MI
Comments:
9-8-99 Hello, My husband & I are living your past. We can only hope to have such a successful end to our son Ashton's seizures. Currently we are going through teh battery of tests Dr. Chugani wants. Your story brings so much promise.
Thank you Jesus!!!
ann haynes - 09/07/99 19:42:23
My Email:ahaynes@tiaa-cref.org
Where are you from?: Rye, NY
Comments:
Emma,
Your site gives us so much hope that our daughter will too benefit dramatically from surgery. The diary lets us know what we might encounter, and going through this that much more informed (on both a personal and professional level) is helpful. Thank yo
for responding.
How is Alex doing now in terms of catching up? What's the prognosis for his development? Thanks. Ann
Ken Dioguardi - 09/06/99 01:38:32
My Email:dio@worldnet.att.net
Where are you from?: Wall Township, NJ
Comments:
We will keep you in our prayers. Our daughter Alison has IS. She has been seizure free after about 2 weeks on ACTH. She is now on pheno barb to control a new seizure that started.
Ken
Tonee - 08/22/99 03:41:03
My Email:EBEXPLORE@aol.com
Where are you from?: Indiana
Comments:
God bless you sweet baby Alex!
Tricia Cullen - 08/21/99 18:28:20
My Email:PAC9999999@aol.com
Where are you from?: Salem, MA
Comments:
Hi Em & Ron
I was talking to Sue and she was telling me all that you have been through!!!!!!! She e-mailed me Alex;s web page. My heart goes out to you all and my thoughst and prayers are with you. You and Ron are wonderful paraents and Alex's is an extraordinary
ittle boy who is full of great promises!!!!! Continue the great work and god bless!
Barbara Dennen - 08/16/99 21:09:54
Comments:
Hi Emma & Ron,
I really enjoyed reading about your little doll, Alex.You all have been through so much.
I pray that everyday things will continue to get better for you.
Much love to all, Barbara Dennen
Pat Gonzalez - 08/12/99 23:57:06
My Email:eamonp@aol.com
Where are you from?: Ossining, NY
Comments:
Our grandson Daniel, age 21 months has been suffering from what was thought to be febrile seizures. However, he has now suffered three seizures without fever. All tests performed so far have been negative. One neurological doctor wants to administer dr
g therapy. What are your suggestions?
Karen Cabatingan - 08/11/99 18:15:15
My Email:rid22602@ride.ri.net
Where are you from?: Cumberland, RI
Comments:
Dear Emma and Ron, It's hard to know what to say---your web site is so touching. I really enjoyed reading it. I had no idea what you were going through at the time. Alex and Anthony are two very lucky guys. ...Maybe we can get together again soon and
et the boys play, that is, if you are not afraid that yours will learn bad habits from mine. :)
Elizabeth Cullen-Blanchet - 08/06/99 21:43:49
My Email:rrblanchet@home.com
Where are you from?: Lincoln, RI
Comments:
Emma, Ron, Antonio, and Little Alex:
You are always in my thoughts and prayers. My children pray for Alex in hopes that he grows to be a healthy young man. I hope your life is nothing but smooth sailing from here on out.
Great job!
Patty Vescera - 08/05/99 23:10:12
My Email:celkentpat@aol.com
Where are you from?: Cranston, Rhode Island
Comments:
I am a good friend of Karen Pulsifer's. She is the sister of Billy Ferrara. She informed me of this web site seeing I have two children of my own, two girls age 6 & 4.
After reading your web site, I said a prayer for you and your family. May Alex continue on the road to recovery and may God always be on the road beside him.
God Bless.
kim martel - 08/05/99 19:06:54
Comments:
Karen Pulsifer - 08/04/99 15:56:11
My Email:DPulsi@aol.com
Where are you from?: Rhode Island
Comments:
Hi Emma & Ron,
Michelle told me about Alex's website and after just reading it I can't put into words all the emotions I feel right now. It is a wonderful website and I'm sure it will be great support for many people. Your family will be in my thoughts and prayers.
Jimmy&Lisa Dusty - 08/03/99 21:03:32
My Email:TheDustys@cs.com
Where are you from?: Cumberland, RI
Comments:
Emmita and Ron,
I can't stress to you how proud I am of both of you for your courage, strength and faith. You are an incredible person, Emmita, and you truly have been through too much, but have been through it with grace and confidence in all the decisions the two of y
u have made. I love you very much and hope you know Jimmy and I will always be here for you; Alex IS a beautiful little miracle. God Bless!
Michelle Ferrara - 07/30/99 00:06:06
Where are you from?: Maryland
Comments:
Hi Emma & Ron,
I'm reading your web page and although I know Alex's story, I'm in tears just thinking of what you have all gone through. You are both terrific parents who have been put through tests that thankfully most of us have not had to endure. We are always thinki
g of your family and our prayers
continue for all of Alex's milestones.
This website should provide hope for other families who are experiencing similar problems. Keep up the good work!
Chris and Rosa - 07/20/99 01:46:12
My Email:rid24519@ride.ri.net & rid27411@ride.ri.net
Where are you from?: Providence
Comments:
You guys are always in our thoughts and prayers.
Susan Pollard - 07/15/99 07:02:51
My Email:alohapt@hotmail.com
Where are you from?: MA/HI
Comments:
Hi All!!!!
I can't believe how big Alex has gotten since the Christmas picture!!!!
Emma, great job!!! Not only for the web page but evrything!!!!!
I can't wait to see you all and meet Alex for the first time!!!!! Love and aloha!!! Susan
sophia - 07/13/99 19:35:37
My Email:sa-help@sa.usf.edu
Where are you from?: tampa, fl
Comments:
Amey & Chris Jones - 07/09/99 03:37:40
My Email:AJJ801@AOL.com
Where are you from?: Tulsa, Oklahoma
Comments:
We are so thrilled for you all!! Hugs to Alex and Anthony and keep us posted! This is a great website!!! July 8th, 1999
brad hammond - 07/09/99 02:52:26
My Email:bthammer@aol.com
Comments:
Well Done Emma, this story will bring hope to others going through similar dilema's.
Love and best of luck,
Brad Audrey and Nicholas
Michael Catanzaro - 07/07/99 16:30:47
My Email:mcatanza@gigaweb.com
Comments:
Lou Turchetta - 07/03/99 00:41:06
My Email:lturchetta
Comments:
Luis A. Vega Meléndez - 07/01/99 19:14:41
My Email:vega@cutr.eng.usf.edu
Where are you from?: Originally from Puerto Rico; now living in Tampa, Florida, USA.
Comments:
Mis amigos: Es una historia hermosa la que tienen ante Díos. El amor que ustedes se profesan hoy es uno que inspira a otros en el mañana; yo no olvidaré su ejemplo...mas sin embargo humano soy. Que El Señor les guíe siempre. Todo problema es mas bien u
reto por vencer cuando primero a Díos se tiene enfrente. Alex: conozco a tu mamá desde que era una niña...hoy veo con felicidad eterna lo que la Familia representa para la gracia de Díos. Tienes una familia hermosa...nunca jamás te separes de ella. Qu
El Señor les bendiga siempre. Les ama, Luis.
Karen Fahey - 07/01/99 03:06:52
My Email:karenjoe@ourweb.com
Where are you from?: Leominster, MA.
Comments:
Hi Emma and Ron,
Tonight, I recieved your email RE:
Alex's webpage. Congratulations on an excellent
job. This was informative and touching. I will
let my family and friends know of Alex's Story
webpage. Maybe someday the world will know
of ALex's story. Reader's Digest always
has beautiful stories like Alex's.
God Bless You all......Love Karen
Erling Braumann - 06/30/99 04:15:42
My Email:ErlingB@aol.com
Where are you from?: RI
Comments:
I found out about your page from Inga. I did not know that your son has been sick. I am sure that it is hard to go thru such an ordeal. Give my regards to your parents. We will pray for you and think about you often. Keep up the faith.
Yours truly,
Erling and Mary Braumann
Mickey - 06/30/99 01:59:43
My Email:mickeycrespo@worldnet.att.net
Where are you from?: Puerto Rico
Comments:
- 06/29/99 20:56:51
Comments:
Dave,Sheila, Trevor & Emma Bierwert - 06/29/99 20:48:51
My Email:dbierwert@aol.com
Where are you from?: Ann Arbor, MI
Comments:
Thanks for your support during Trevor's surgery. Speaking with people who have lived it makes it easier. We have two real troopers!!
Cathy Long - 06/29/99 20:22:08
My Email:Catsneed@hotmail.com
Where are you from?: Plant City, FL
Comments:
God continue to Bless little Alex. May God continue to strengthen your parents as well.
Bobby L. Russ - 06/29/99 17:43:10
My URL:http://viceroy.spunge.org
My Email:viceroy@viceroy.zzn.com
Where are you from?: USA
Comments:
May Alex have the best of luck with health.
christina - 06/29/99 16:43:02
Where are you from?: Glocester
Comments:
This is a wonderful and happy ending story. I keep Alex and your family in my daily prayers!
LeeAnn Brigido - 06/29/99 14:51:55
My Email:zacode@efortress.com
Where are you from?: MA
Comments:
Emma, the web page is awesome!
Amy Newman - 06/29/99 13:39:20
My Email:amydea@yahoo.com
Where are you from?: Johnston, RI
Comments:
I had no idea you were doing a web site. It is really beautiful and touching. I am so glad Alex is doing so well. Hope to see you guys soon.
Ellen - 06/25/99 03:59:07
My URL:http://www.bigfoot.com/~chunkymonkey
My Email:chunkymonkey@bigfoot.com
Where are you from?: Floridaa
Comments:
Hi Alex.... I hope you like your web page. I know that your story will be very inspirational and informative to many people; it's helped us so much already! Take care for now.
Ellen Sherman Todd - 06/25/99 02:17:57
My URL:http://www.bigfoot.com/~chunkymonkey
My Email:chunkymonkey@bigfoot.com
Where are you from?: Florida
Comments:
'Just testing this sucker.... How do we look?
.
Go get your own darned Free Home Page