Magda - 12/26/00 13:41:30
My Email:crowl@kki.net.pl
Where are you from?: Poland
How did you find us?: link
Comments:
It's great what you do! It's very helpful to parents of children with West syndrome (like me f.e.). Best wishes for you and your son.
mercy - 12/21/00 06:37:19
My Email:maigbem.aol.com
Where are you from?: las legas, nevada
How did you find us?: online
Comments:
Dear Kevin's mom,
Thanks for your piece of information on IS.
I just learnt that niece 14 months in Japan has IS and I have been devastated. I want to read
positive stor like yours. I feel better today reading kevin's case.
God bless you and Kevin.
Mellissa Johnson - 11/25/00 02:41:31
Where are you from?: Hornell, New York
How did you find us?: Infantile spasms
Comments:
I have a 2 year old son with IS, he was diagnosed at 4 months old. We have tried all different kinds of meds but have had no luck stopping the seizures. He just started walking last July, but he does not talk at all. He has at least 50 seizures aday. W
are in the process of starting him on the Ketogenic diet hoping that it works for him. Your story truly is a god sent, and gives people like me hope.
DEDRA PEPPER - 11/10/00 17:48:45
My Email:alahomeremdeling@yahoo.com
Where are you from?: birmingham,al
How did you find us?: looking for info. spinal menangitis
Comments:
the story was very touching. I have two children of my own and I don't know what I would do if something happened to my kids. You are a very strong person and your son is very lucky to have such great parents. I hope he continues to do well and makes mo
e progress. Remember to always keep your faith.
Daphne - 11/03/00 21:16:30
My Email:scarlett95@wildmail.com
Where are you from?: Arkansas
How did you find us?: surfing the net
Comments:
My daughter will be 3 in January and she was diagnosed with IS at 6 mos. Thank you for sharing your story. You really don't realize how many children are affected by this disorder.
Hope Schramm - 10/15/00 22:52:22
My Email:dnhschrm@cs.com
Where are you from?: So. Lake Tahoe, Calif.
How did you find us?: The internet
Comments:
My 9 mo.old. grandson Chase Christopher Schramm has been diagnosed with Infantile spasms. I am trying to get as much info. as possible on IS. Also,I am looking for success stories. The Dr. does not give us much info. on the disease.
Kristie Jurney - 10/15/00 20:01:15
My Email:wakjurne@risd.k12.nm.us
Where are you from?: Roswell, NM
How did you find us?: looked you up on the internet
Comments:
My little nephew has just been diagnosed with infantile spasms. He turned one on Oct.2. He's had problems since birth. When he was born, his brain did not have the ridges that brains should have. He's been in speech, physical and occupational therapy
lmost since birth.
I just wanted to find some information on this syndrome; there isn't much.
Thanks for your story. May God bless you and be with you. May He fill you with peace, strength, and patience.
samm - 10/12/00 14:04:15
My Email:nvboy31@yahoo.com
Where are you from?: ksa
How did you find us?: by chatting
Comments:
well, I found this very interesting, lalo na pag magandang tulad mo, hehehe, bye AND I love you
Doreen - 10/11/00 05:11:00
My Email:Farao.dd@ayalahealthcare.com.ph
Where are you from?: philippines
How did you find us?: searching for more details
Comments:
My son, John Dale, just turned 8 mos. old was seen by so many doctors already. We brought him to a developmental specialist because he could not perform the activities like any normal 6 mos. old. He was suspected to have cerebral palsy, then we brought hi
to a Physical therapist and Occupational therapist for the delay. We brought him too to a neurologist just to make sure and find out the cause of delay and she asked us to have EEG. Then Infanitle Spasm came to picture.
That same day we rushed him to ER because he was having strong episodes of seissures. Depakene was given 3.5 ml. 3 times a day with Pyridoxine 50mgs. 6 caps. 3 times a day. We tried a month then, symptoms was the same with jerking this time. I feel so b
d when I see him having those episodes. It's like your heart is being ripped off. He becomes so tired and his eyes are so weak. Our neurologist ordered the ACTH outside the coutry since there is no available in the Philippines. I hope the Miracle in Kevin
s story will happen to my son.
Linda Watson - 09/29/00 01:35:10
My Email:watsonlgp
Where are you from?: Pensacola, FL
How did you find us?: searchig the internet
Comments:
WE LEARNED IN MARCH OF 2000, THAT MY GRANDSON HAS IS AND WE ARE FACING SURGERY IN NOVEMBER AFTER TRYING SO MANY MED'S THAT DO NOT WORK.
Tracy Burns - 09/26/00 15:29:41
My Email:Trixie_20@webtv.net
Where are you from?: South point, OH
How did you find us?: looking for info
Comments:
Has your baby started speaking yet? My 2 1/2 year old was diagosed at 7 months, is going through therapy, but says few words. Is there hope?
thanks.
Tracy Burns - 09/26/00 15:27:47
My Email:Trixie-20@webtv.net
Where are you from?: South point, OH
How did you find us?: looking for info
Comments:
Judy Moriarty - 09/19/00 20:30:48
My URL:http://www
My Email:Judymori@northweb.com
Where are you from?: Waddington, N.Y.
How did you find us?: Web Search
Comments:
I have just learned that our grandson has been
diagnosed with Infantile Spasms or West Syndrome
and I was searching the web to find out all we
need to know about the disease. Am so glad to
read Kevin's story as it shows us that help is
on its way for Cameron. Thanks for sharing with
us.
Jennifer Patterson - 09/14/00 14:07:09
My Email:Elizabeth11485@cs.com
Where are you from?: Indianapolis, Indiana
How did you find us?: When I was researching for a news article on nervous systems for my health class.
Comments:
Well, you little cutie Kevin! I hope you are better, and if not I hope you get better! You are such a cutie!
Love always,
Jenny
paulette montgomery - 08/24/00 02:13:33
Where are you from?: maryland
How did you find us?: intrnet
Comments:
your story is very encouraging, Ihave a 3 month old baby girl and we have a doctors appointment 6/24/00 to see if she has infantile spasms. thank you
Danielle Smith - 08/09/00 03:34:24
My Email:daniellesmith49@hotmail.com
Where are you from?: Vancouver, Canada
How did you find us?: Yahoo search
Comments:
Your story is one of hope. My fiances daughter has contracted this disease, and has lost much of his optimism, for her recovery. I believe that sharing this with him may help, so thank you.
Eduardo Verdín - 07/31/00 06:05:08
My Email:verdin67@yahoo.com
Where are you from?: Los Cabos,México
Comments:
Dear Kevin and Kevin's Parents:
Sometimes is very hard to find a reason or explain why life is the way it is. After we read your history, we can't express what we field. Our second doughter, Gisela, was diagnosed with West Syndrome when she was 7 months old. Now she is 5 years and
a half. After she was treated with many medications (ACTH included) she still having this terribles spasms (3 to 7 or more every day). Her neurologist-pediatrician is trying with Depakene and Vigabatrina. We are awared that her time for a good prediction
s almost gone (according with what we've read), but we still having a hope. It has turned us in better persons, so it did to you.
All the strenght and our best wishes to you.
God bless you.
Adelina and Eduardo.
Ps. Please forgive our english and thanks.
tiffany lewis - 07/09/00 16:26:19
My Email:tiffanylewis9574@yahoo.com
Where are you from?: tampa,fl
How did you find us?: infantile spasms
Comments:
My son was just diagnosed with infantile spasms about 5 days ago. He just started taking acth two days ago. I have been trying to find out as much about this disorder as possible. Your story is full of hope. Thank you for sharing it with us all.
tiffany lewis - 07/09/00 16:23:46
My Email:tiffanylewis9574@yahoo.com
Where are you from?: tampa,fl
Comments:
jeremy mohlke - 06/27/00 22:31:55
My Email:mohlkej@hotmail.com
Where are you from?: okinawa japan
How did you find us?: yahoo search
Comments:
i think my son has the same problem but the doctors arent looking into that yet. i dont know why but i will let them read this story. cause my son is doing the same thing. this is truly a story of inspiration for me and my wife.
thanks
jeremy and maria and little JJ (8mos)
Dawn & Richard Tye - 06/27/00 21:50:41
My Email:rjtye@tesco.net
Where are you from?: England
How did you find us?: surfing the net
Comments:
We have a 6 month old daughter that is showing synptoms of IS and are searching for information on treatments etc. We hope Kevin's progress continues and wish you all the best for the future.
Gary Grubb - 06/26/00 05:59:57
My Email:GWGrubbMD@aol.com
Where are you from?: California
How did you find us?: via google
Comments:
Thanks for giving me a start to find out about one of my patients.
Whitney Edwards - 06/25/00 23:02:26
My Email:arlondra@yahoo.com
Where are you from?: Charleston, SC
How did you find us?: internet search
Comments:
My son is nine months old and was dx'd with IS at six months. He is delayed developmentally by fifty percent. We pray everyday that he will pull through alright. If there are any encouraging words or experiences you can provide from your ordeal, it wou
d be greatly appreciated.
Whitney Edwards - 06/25/00 22:59:31
My Email:arlondra@yahoo.com
Where are you from?: Charleston, SC
Comments:
Rhonda - 06/17/00 22:57:00
My Email:rhondab@kc.rr.com
Where are you from?: Kansas City MO
How did you find us?: from the pool!!!
Comments:
I am so grateful for your open attitude and sharing, thank you for making me feel "Normal" on my vacation! It was a pleasure meeeting your family, on and off the net!
- 06/17/00 16:13:21
Comments:
rachid seif - 06/17/00 10:51:02
Where are you from?: lebanon
How did you find us?: internet
Comments:
good l
rachid seif - 06/17/00 10:45:33
Where are you from?: lebanon
Comments:
Lenka - 06/12/00 20:26:41
Where are you from?: Czech republic
How did you find us?: just surfing
Comments:
Good luck, Kevin.
Libby Bryan - 06/12/00 06:26:58
My Email:abryan@dmi.net
Where are you from?: Northern Idaho
How did you find us?: on line
Comments:
We appreciate your page. Kevin is beautiful. I am the grandmother of a recently diagnosed IS baby.I am soon writing you through e-mail. Thanks for making yourself available. -Libby
arvind - 05/26/00 16:03:10
My Email:arvind_r_@mantramail.com
Where are you from?: india
Comments:
good luck
Sharon Roberts - 05/20/00 17:01:00
My Email:robertssharon@talk21.com
Where are you from?: West Kirby,UK
How did you find us?: Lycos.com
Comments:
My nephew, Christopher, now 5 years old, was diagnosed with West Syndrome at 7 months and was very slow to develop. But with the determination of my brother & his wife, Susan, Christopher attends the same school as his brother and shows high intelligence
He has just mastered riding a two-wheel bicycle without stabiliser wheels, swims like a fish and has a lovely personality. He's also much better behaved than his brother. You only need to tell Chris something once and he does it exactly right. I hope
his gives hope to people out there that this problem is not always negative.
Christine Oyler - 05/18/00 04:22:12
My Email:christine_oyler@juno.com
Where are you from?: Pleasant Grove, Utah
How did you find us?: Searching for West Syndrome on Yahoo
Comments:
I have a niece with West Syndrome and I'm trying to learn more.
Marilyn - 05/08/00 14:26:47
My Email:skimejr@charter.net
Where are you from?: wisconsin
How did you find us?: net.
Comments:
I have a daughter with west syndrome. Dont know much about it,but want to know more. My daughter is 13 now and we have not found any thing that will help. We have tried all the drugs you can think of. If you know anyone with a child at this age ,that I ca
chat with it might help. Thank you Marilyn.
Charlene Moulton RN - 05/07/00 04:28:44
My Email:charmoulton@hotmail.com
Where are you from?: Atlanta, Ga
How did you find us?: "Monster Crawler"search
Comments:
I am a nurse and for many years a Pediatric nurse-but I had never heard of Infantile Spasm (!) Last week I had a lady come to me in a panic after her MD told her that her 3 month old had this condition. As I wanted to find some encouragement for her I am
lad to have your story of Kevin that I can print and give to her. I hope you have found a good parental support group because your experience is a positive one...thank you!
- 04/29/00 15:24:15
Comments:
Margaret Jones - 04/26/00 10:28:40
Where are you from?: Wales
How did you find us?: yahoo search on IS
Comments:
- 04/19/00 13:25:09
Comments:
- 04/09/00 05:41:01
Comments:
SMALIK - 03/29/00 17:13:08
My Email:ramalik@gibnet.gi
Where are you from?: Gibraltar
How did you find us?: Internet search
Comments:
I hope kevin is doing well, i would like to know his present condition. I am a paediatrician and recently i saw one child with west syndrome. I wanted to know more about the condition and present line of treatment.
Jeff Parres - 03/22/00 03:41:47
My Email:jparres@earthlink.net
Where are you from?: St. Louis, MO
How did you find us?: Yahoo Search
Comments:
Your story has certaintly brightened my day! Thanks so much for making your positive experiences available.
A good friend's son was just dx. with IS and your story offers great hope.
God bless Kevin and your family.
Melissa Hoskins - 03/19/00 19:22:37
My Email:Mhoskins2000905@cs.com
Where are you from?: Virginia
How did you find us?: www.yahoo.com
Comments:
My son Robert is 7 months old and was just diagnosed with infantile spasms 9 days ago. I noticed something was really wrong 3 weeks ago when Robert's eyes would water and he did not seem to be aware of what was going on around him. His hands would come to
ether and he would pull them in front of his face and his body would bend almost like he had colic or an upset stomach. Robert is currently taking a medication called Gabitril and has been seizure free for 5 days. I can only say it is a miracle. Kevin's
story has been inspirational. I'm so thankful you have created a web page with a happy ending. These seizures are so rare it is hard to find information that is positive. Robert's battle has just begun and after reading Kevin's story I have faith he wi
l win. It is devasting for my entire family to see an innocent child go through such an ordeal. I wish Kevin and your family the best!!
Lisa Demjan - 03/15/00 16:35:07
My Email:Lisa.Demjan@Rossnutrition.com
Where are you from?: Columbus, Ohio
How did you find us?: google.search
Comments:
we just found out our 6 mos old as IS, I am grateful to hear such wonderful stories. Our son is going to try ACTH we have already been on Topamax with only little change. I am very scared because of all the side affects and the poor developement stories
we have heard. Our son had a brain hemorage and group b strep infection that caused all these problems. we are just starting this roller coaster ride, again after 3 long months in the nicu. we have 3 other children besides our son with IS. I feel very
stressed and overwhelmed and would love to talk to another mom who has been there. We have a strong faith but there are days I feel I'm not going to survive. Thanks for your web page and letting me vent. God Bless all of you for having the strength to
et you threw.
Jennifer Koeppl - 02/01/00 04:12:29
My Email:xenafritz@hotmail.com
Where are you from?: Mequon, Wisconsin
How did you find us?: Through iwon.com search engine
Comments:
I love your website. I'm an Occupational Therapy student in my 4th year of school. One of our assignments was to research a pediatric condition of our choice on the web. I had no idea what to search for, so I looked through my peds book. I stumbled upon t
is condition. I didn't even believe there would be any information on the internet. When I typed it in and found that there were 47,000 different sites I was astonished. I'm learning about this syndrome and all of it's negative outcomes. It made me very h
ppy to see the hope you are giving the many other parents who are faced with the same problems you are. I commend you on your optimism. Best of luck to Kevin.
joana - 01/25/00 19:35:30
Where are you from?: Portugal
Comments:
Gloria Mudery - 01/19/00 23:30:55
My Email:bm530@aol.com
Where are you from?: Colorado Springs
How did you find us?: Yahooo
Comments:
I stumbled upon your web page while researching infintile spasms. My little boy will be having a eeg next week. His Dr says his spasms are very insignificant and may be behavioral based. I wish you and your beautiful boy all the best. Stay couragous!!!
Robert Jennings House - 01/16/00 18:12:17
My Email:bighouse99@msn.com
Where are you from?: Amelia,Ohio
How did you find us?: Kevin called me one day and said "How are you Uncle Rob?"
Comments:
Aunt Yena,Uncle Rob,Cousin Amanda,Cousin Robbie and Cousin Natalie LOVE YOU VERY MUCH !!!!!
Carrie - 01/15/00 09:32:31
My Email:razor@islandnet.com
Where are you from?: Lake Cowichan B.C.
How did you find us?: through the net
Comments:
Kevin's story is the same as my sons.Robbie is on Topiramate now and the seizures have finally slowed down .Kevins story is a happy one.I hope we will have a happy story to tell one day. Thank you!!!!!
Laurie Dawson - 12/17/99 01:25:48
My Email:boxjax79@aol.com
Where are you from?: Indiana
Comments:
Hi-I enjoyed reading your story. My son was diagnosed with IS at 6 mos old. He was treated with ACTH shots and the seizures stopped. He is now 5. He also was in an EI program until 3 then started a pre-school program. He is in his 3rd year of pre-school a
d doing great. He is still developmentally delayed, but he has come a long way. What I didn't realize is how many children who have been diagnosed with IS continue having seizures after medicine. I guess we are really lucky that our son's seizures stopped
Have you ever heard of them returning? I noticed that someone else had asked that same question. I will continue to research. Thanks so much for sharing your story. God Bless You!!
Carol Norton - 12/15/99 19:25:32
My Email:cnorton@dailypost.com
Where are you from?: South Dakota
How did you find us?: Friend
Comments:
C.MURPHY - 12/15/99 18:43:57
My Email:cmurphee50@yahoo.com
Where are you from?: WISC.
How did you find us?: INTERNET
Comments:
Hi-just a quick note to say how I enjoyed reading your story-my grandson also was diagnosed w/IS when he was about 6 months old-we took him to our local clinic-and they knew right away what it was-we were very lucky-he is 5 now and has no ill effects of t
is disease-or the acth he was was given-we were wondering however if anyone has ever had any regression later on-say in 5 or 6 years? thanks again for sharing your story to help others-Bless you and that darling Kevin!C.murphy
Maru Recoder - 12/01/99 23:10:33
My Email:jls@compaq.net.mx
Where are you from?: Mexico city
How did you find us?: Yahoo
Comments:
We have a little girl we know and they diagnosed this illness Where can we get more info on the cause remedies and symptoms
Thank you
JLS
Sara laber - 11/29/99 15:01:27
My Email:slaber@sendit.nodak,edu.
Where are you from?: Fessenden N.D.
How did you find us?: Lokking up disorders
Comments:
Thanks for sharing your story and hope the best for you guys. Sending my love to you Kevin.
suzanne bryjak - 11/27/99 04:43:48
Where are you from?: garfield ,NJ
How did you find us?: yahoo
Comments:
My 7 mos old son was recently diagnosed with IS and I am looking for all the information I can get. Thank you for the hope you are giving to all of us who are very new to this and very afraid of the things that we are hearing.
Trisha - 11/20/99 02:43:52
Where are you from?: New York
How did you find us?: a story about hope
Comments:
Great story!!!!!Thanks for sharing.
samuel thomas,jr. - 11/11/99 05:45:37
My Email:samthojrjune@yahoo.com
Where are you from?: memphis
How did you find us?: under spasms
Comments:
samuel thomas,jr. - 11/11/99 05:44:06
My Email:samthojrjune@yahoo.com
Where are you from?: memphis
How did you find us?: under spasms
Comments:
samuel thomas,jr. - 11/11/99 05:43:55
My Email:samthojrjune@yahoo.com
Where are you from?: memphis
How did you find us?: under spasms
Comments:
samuel thomas,jr. - 11/11/99 05:40:03
Comments:
picu - 11/06/99 21:42:35
Where are you from?: monroe louisana
Comments:
Susan Coppage - 11/03/99 22:51:02
My Email:twocoppages@mindspring.com
Where are you from?: Virginia
How did you find us?: yahoo "infantile spasm" search
Comments:
Thank you for posting this very positive and encouraging site. My friend's 7 month old was diagnosed with IS 3 days ago, and I have been trying to find something other than the terrible statistics. Thanks again and my best to Kevin and your family.
Susan Coppage
Ronald Schouten - 10/30/99 14:24:27
My Email:schouten@wt.tno.nl
Where are you from?: The Netherlands
How did you find us?: alta-vista search
Comments:
We are parents of a daughter (Emma Suzan) who has
IS since her 6th month. She has had Sabril as medicin and Depakine. Sabril has been stopped because of potential side effects and currently we are also trying Lamictal as adjunct. Emma's story is also on internet on the list of Rob Evers page www.geocitie
.com/HotSprings/1000. Only the story is already a bit outdated, because her recent history (like the addition of lamictal) is new. Also is her situation deteriorating a bit. Her behaviour is becoming troublesome, because she sometimes doesnot want to eat,
so she has already lost about 4-5 kg of her weight in the last 6 months. Also she has her moods that conflict a bit with her learning. Her level is quite low, about 1.5 years while she is really 7 years old.
One of the biggest troubles is her epilepsy but the other one is the fact that she is also deaf or very bad hearing.
About the our family : we have another child (son)
Max of 3 years and he is luckily quite healthy (as far as we know), My wife Francis is teaching English at a business school in Amsterdam and I am a Mechanical Engineer working on simulation software for car-crashes and occupant safety.
valerie jackson r.EEG T - 10/21/99 01:16:02
Where are you from?: bend oregon
How did you find us?: internet
Comments:
i have published an article on west syndrome and
feel very optimistic about these special little
patients. i wish your family all the best.you can contact me c/o bend neurosugical group
2275 n.e. doctors dr bend oregon.many of these children get better, remember you are your childs
best advocate.
valerie jackson r.EEG T - 10/21/99 01:12:26
Where are you from?: bend oregon
How did you find us?: internet
Comments:
i have published an article on west syndrome and
feel very optimistic about these special little
patients. i wish your family all the best.
mrs julie baines - 09/19/99 18:31:23
My URL:http://bun 0395607
My Email:simon@baines831.freeserve.co.uk
Where are you from?: scunthorpe north lincs
How did you find us?: internet
Comments:
I HOPE MY SON OLIVER PROGRESSES AS WILL HAS KEVIN AS IN HIS EARLY LIFE, JULIE
Chimene Sacik - 09/19/99 16:55:49
My Email:sacik3@bellsouth.net
Where are you from?: Melbourne, Florida
How did you find us?: Webcrawler
Comments:
Thank you. Your child's story is the first good news I've heard since my son was diagnosed with IS. I'm just starting down the road you have already traveled. I pray that we are as blessed as you are. Chimene
amy mcabee - 09/16/99 22:47:23
Where are you from?: south carolina
How did you find us?: website
Comments:
my son was diagnosed with is four months ago and has made great progress. i thank god for this and i pray he does the same for you and your son. write to me at amy mcabee 600 lakewood park drive, spartanburg , sc 29303
Barbara Garner - 09/14/99 11:34:28
My Email:bgarner99@aol.com
Where are you from?: Texas
How did you find us?: from Ask Jeeves
Comments:
Yours is a wonderful story. Our G Grandson has IS due to brain damage after birth. He has been on several medications and his parents and DR. are considering Topamax. Hopefully he will see good results. Thanks for your Story. It gives us hope.
myrna de diaz - 09/06/99 00:13:11
My Email:eloydiaz@cantv.com
Where are you from?: venezuela
How did you find us?: looking about west syndrome
Comments:
i am a venezuelan pediatrician and i have a little patient with west syndrome . i hope that scientists find soon a new medicament for you, Javier and all childrens with west syndrome
willie boedeker - 08/26/99 23:46:12
My Email:robmary@2i2.com
Where are you from?: ariz. city, AZ.
How did you find us?: internet
Comments:
I just found out that my God Daughter has been
diagnosed with this same disease.
Moez - 08/20/99 11:57:32
My Email:hannibal@best.net.pk
Where are you from?: Tunisia
How did you find us?: Yahoo search
Comments:
We have gone through the same path with our daughter Meriem who started seizures at 6 months and who was diagnosed with IS at 9 months. Seizures were rather limited in number though, 4-5 per day, the maximum they reached was 25 and it was right before sta
ting Hydrocortisone + Sabril.
Second day of treatment, in France, it was all over. Run through side effects of cortisone for 3 weeks. Now Meriem has stopped all treatment since March 99, she is perfectly normal, no sign of any development delays or any such thing. the French Professor
who took care of her told us this summer that it is all over now! e was so happy and satisfied with the results that we could make out it was a bit of a miracle!
Happy that our children could make it through this journey.
All the best for Kevin.
Afnan - 08/16/99 17:37:01
My Email:almatawah@aol.com
Where are you from?: Kuwait
Comments:
I'm Afnan mom, she's 3 months old.
When she start (Infatile spasms) she was one month.
We are now in (VA,USA) to start give she (ACTH).
GOOD LOCK
CH - 08/09/99 01:15:46
My Email:caty@seanet.com
Where are you from?: SEATTLE
How did you find us?: researching AED sideeffects
Comments:
As a person w/complex partial szs being treated w/Lamictal,Tegretol & Tranxene I was trying to find out if the Lamictal could be what was causing the mild reddish rash that has developed along my hairline/temples. As an EEG technologist I have met & teste
many kids w/IS who were treated w/various methods, some more successfully than others so was simply curious what treatment path was followed & w/ what success.Congrats!!
Judy Kyle - 08/06/99 11:04:55
My Email:pjkyle@prodigy.net
Where are you from?: Connecticut
How did you find us?: excite search
Comments:
My daughter, currently, has these "jerking" motions since 1 month of age. Currently, we are trying to rule out infantile spasm. She goes for MRI today. She has had 2 EEGs with no apparent hypsarythmias but the MD says it may not be apparent just "yet".
My daughter is 5 months old right now. Klonopin worked well for about 2 weeks but lately the jerking is more apparent and becoming quite forceful again.
I have read about the drug you speak of and will ask her neurologist about it.
He is currently saying the ACTH therapy may br an option...after we have confirmed a few more things.
Wish us the best.
I will post here again!
Beutiful boy! Kevin looks alot like my daughter Camryn!
Judy Kyle
James Getty - 07/29/99 13:20:55
My Email:gettyj@weight-watchers.com
Where are you from?: Long Island, New York
Comments:
Thanks for the story. Hope Kevein is doing well!
vibha khandelwal - 07/22/99 15:27:39
My Email:vibhakhandelwal@hotmail.com
Where are you from?: india
How did you find us?: serch engine
Comments:
My daughter yaasha is suffering from IS and is developementally delayed.she does not hold her head up inspite of being 2 years old
vibha khandelwal - 07/22/99 15:26:21
My Email:vibhakhandelwal@hotmail.com
Where are you from?: india
How did you find us?: serch engine
Comments:
My daughter yaasha is suffering from IS and is developementally delayed.she does not hold her head up inspite of being 2 years old
nannette rench - 07/20/99 17:21:28
My Email:russ.nan@juno.com
Where are you from?: Pt. Mugu, CA
How did you find us?: infantile seizure search
Comments:
Our 6 month old daughter Hannah has just been diagnosed with Infantile Spasms, just a short 3 weeks ago we were in to see the Ped with the same complaints about the head bobbing and arm flailing description, Hannah's Ped had no idea. She sent us to the o
her Ped in the office and ask us to video. the next day we were in the office armed with our video. He also had no idea but thatk goodness they got together and decided to send us to the neuologist but not before we had a 20 minute EEG. The neurologist
viewed the video, EEG and examined her. His diagnosis was Benign infantile syndrome. He wanted to see us back in 6 weeks. After a few days ofthe uncrollable crying along with the seizures my husband and I really felt we needed a second opinion. We got
an appt at UCLA yhe following week. The Neurologist there set her up for a 24 hour EEG and video (Telemetry). With that they were leaning more towards Infantile Spasms. They ordered an MRI and now we are waiting. They sent her home on 50mg of vitamin
B6 2 times a day, this has proved to work in a very small percentage of cases, but it can not hurt to try it first. As of now 4days on vitamin B6 she has had no relief or signs of improvment. We expect a call from her neuorolgist today. Kevin's story h
s helped us get thru this extremely hard time in our lives.
Thank you and God bless you all.
Nannette Rench
mary murphy - 07/17/99 02:04:21
My Email:mmmurph@carrollsweb.com
Where are you from?: Great Bend, Ks
How did you find us?: Yahoo
Comments:
We just learned today that our 1 yr old granddaughter has infantile spasms. I to am a nurse.
mary murphy - 07/17/99 02:00:24
Comments:
Gigi McLaughlin - 07/15/99 01:35:35
My Email:jgmcl@rmi.net
Where are you from?: Pueblo, Colorado
How did you find us?: MISC chatroom
Comments:
Thanks for the story. I plan on "bookmarking" it and referring to it again. Enjoy talking to you "online"!
Gigi McLaughlin - 07/15/99 01:34:57
My Email:jgmcl@rmi.net
Where are you from?: Pueblo, Colorado
How did you find us?: MISC chatroom
Comments:
SHERRIE - 07/12/99 23:16:59
My URL:http://sherrie@lihc.org
Where are you from?: N. CALIFORNIA
How did you find us?: BROWSING!
Comments:
I AM A SINGLE MOTHER OF A TWO YEAR OLD SON WHO WAS DIAGNOSED WITH I.S. MY SON WAS DIAGNOSED AT AGE 6 MONTHS, AND SHORTLY AFTER HIS FATHER LEFT, AND HAS HAD NO CONTACT SINCE. MY SON SUFFERED FROM SPINAL MENINGITIS AT 1 DAY OLD, WAS HOSPITALIZED FOR 1 MON
H IN THE NEONATAL INTENSIVE CARE UNIT, WAS CAME VERY CLOSE TO DEATH. I WAS TOLD IT WAS A MIRACLE HE LEFT THE HOSPITAL. BUT HE DID COME HOME WITH US AND WE LOVED AND CARED FOR LIKE ANY OTHER BABY. AT 6 MONTHS HE WAS DIAGNOSED WITH THE I.S. AND HIS PROGN
SIS HAS ALWAYS SEEMED GRIM. HE SUFFERED SEVERE BRAIN DAMAGE FROM THE MENINGITIS, AND TO DAY, HAS HAD SEVERE DEVELOPMENTAL DELAY. HE IS NOW TWO, BUT HAS POOR HEAD CONTROL, CAN NOT SIT UP ON HIS OWN, BEARS LITTLE WEIGHT ON HIS LEGS, AND HIS COMMUNICATION
KILLS ARE LIMITED. I LOVE HIM JUST THE SAME. HE IS MY WORLD AND MY INSPIRATION. HE HAS MADE ME A STRONG INDIVIDUAL, INDEPENDENT, AND EVERYTHING I DO I DO FOR HIM. HE IS ALWAYS IN MY PRAYERS, AND I ALWAYS WISH FOR A BETTER TOMORROW FOR HIM. HEARING OT
ER STORIES FROM OTHER PARENTS, GIVE ME SOME HOPE AND JOY.
Olive - 07/07/99 18:08:00
My Email:ocarrington@caci
Where are you from?: Virginia
How did you find us?: IS searching
Comments:
A co-worker's baby has just been diagnosed with IS and I was looking for something that would help us understand what she is going through. Thanks for sharing Kevin's story - it really touched my heart since I am the grandmother of two children with spec
al needs.
God bless you and your family.
Karen Johnson - 07/03/99 13:51:19
My Email:zappa19@gateway.net
Where are you from?: Massachusetts
Comments:
My son Tyler, age 10 months, was diagnosed with IS at 3 months of age. Currently he is taking a medication called Vigabatrin and is continuing to have seizures upon waking. His development seems to be normal up to this point. Thank you for sharing your
son's story, it has provided hope.
honey - 06/28/99 16:22:46
Where are you from?: chicago
How did you find us?: just surfing
Comments:
this was very touching! when I was two I had spinal menangitis and was in a coma for almost two months!!!! I'm glad everything was a happy ending as was mine.
Roberta - 06/28/99 03:43:41
My URL:http://www.angelfire.com/me2/ZacheryC
My Email:JnZsmom@webtv.net
Where are you from?: Indiana
How did you find us?: IS Webring
Comments:
Thank you for sharing Kevin's positive story. My son, Zachery, has IS and we are very hopeful for a positive outcome. As of today, he is 13 days seizure free. I see him coming back to us more and more everyday. He is developing his own personality, finall
and growing up way too fast!
Laurel Gonzalez - 06/23/99 03:48:40
My Email:ozzie3@netcom.com
Comments:
Hi Debbie,
Our computer crashed and I lost ICQ and all various other IS contacts but I was able to finally read Kevin's page. What a cutey!!!I e-mailed you last week--did you get it??I'll have to get back on ICQ but need some tech support from my hubbie and he's oo
. Laurel
- 06/11/99 18:16:58
Comments:
SAMETHIAS - 06/10/99 19:21:26
My Email:SAMETHIAS@AOL.COM
Where are you from?: MPLS, MN.
How did you find us?: THROUGH RESEARCHING
Comments:
I WAS JUST FINDING OUT MORE INFORMATION ON INFANTILE SPASM SYDROME BECAUSE MY DAUGHTER WAS DIAGNOIS WITH THE DISORDER AND I WANTED TO FIND OUT MORE ABOUT IT.
christie akumabor - 05/20/99 15:57:42
Where are you from?: london uk
How did you find us?: on the www
Comments:
dr akumabor - 05/20/99 15:56:09
Comments:
Andy Pike - 05/18/99 15:56:51
My Email:arp@msas.co.uk
Where are you from?: Devon, England
How did you find us?: Yahoo
Comments:
Very glad to hear of Kevin and his progress. My son, Matthew, is two years and nine months old and is another who has done well. I am told that he no longer has IS and that although he regressed during the undiagnosed first six weeks of his IS, he is no
doing everything to be expected of a child of his age. Sabril Vigabatrin controlled his fits within two days of being hospitalised on 14th Feb 1997 and he only had a few episodes after this date (only whilst having a temperature due to illness). We are
eaning him off vigabatrin slowly (he experienced some twitches when reducing from 1000mg to 600mg in one go) and he is now on 300mg per day and is expected to be off of it in 6 weeks. I worry about possible eye problems that I have heard about which have
been associated with the drug but could not be happier with his outcome. I wish I had heard of positive experiences such as Kevin's when Matthew was six months old and all that we could hear was to expect the worst. It is very good of you to go to the t
ouble of setting up this page to share such a positive outcome. Well done Kevin!!
Cheryl Cole - 04/24/99 21:15:52
My Email:nevjack@gateway.net
Where are you from?: Virginia
How did you find us?: internet
Comments:
I'm a mom with a son with IS. I'm interested in talking with another mom.
Julie Farrell Senger - 04/16/99 20:10:47
Where are you from?: Goshen In
Comments:
Have you looked into AIT auditory integration training this did wonders for my son Jamie. His speech was at zero he signed to communicate then we did AIT Now we hear the wonderful sound of his voice in non stop chatter. A book to read on this is Sound of
A Miracle By Annabell Stehli Your Kevin sounds like a precious miracle. J Farrell 312 E monroe St Goshen in 46526
Julie Farrell Senger - 04/16/99 18:53:22
Where are you from?: Goshen In
How did you find us?: internet
Comments:
Whhat an uplifting story. My son Jamie has been having seizures foe 6 years We have finally gotten to the point that we have finally gotten a referral to Dr Glauser. I hope and pray that we too will be able to have a success story. Keep using the sign lan
uage IT WORKS!!!!
Julie Farrell Senger - 04/16/99 18:53:19
Where are you from?: Goshen In
How did you find us?: internet
Comments:
Whhat an uplifting story. My son Jamie has been having seizures foe 6 years We have finally gotten to the point that we have finally gotten a referral to Dr Glauser. I hope and pray that we too will be able to have a success story. Keep using the sign lan
uage IT WORKS!!!!
Edgar Ramirez - 04/15/99 22:36:05
My URL:http://www.imp.mx
My Email:eramirez@www.imp.mx
Where are you from?: Mexico City
How did you find us?: by Nestcape
Comments:
Hello,
I think that this web page is very interesting and important for me and my parents, because I have a
little friend (about 2 years old) that have The
West syndrome. We are looking all information
about this Syndrome and the places (hospitals, Research Centers, etc) where develope research
of this syndrome. I would really appreciate if
you have some information about it. Thank you very much.
Carol Thomson - 04/13/99 22:55:09
My Email:TMThomson@aol.com
Where are you from?: Delaware
How did you find us?: Child Neurology Framework
Comments:
Our grandson had infantile spasms. We went through 6 months of different medications with no results. Finally, he received ACTH injections for 5 weeks. They stopped the seizures. That was in February and he has been seizure free. We celebrated his fi
st birthday last Wednesday. He has many developmental delays but is the apple of our eye.
Christine M. & Stephanie - 04/09/99 04:24:01
Where are you from?: Macomb Twp, Michigan
How did you find us?: Your moms email
Comments:
Thank you so much for sharing your story. It has encouraged me so much. My daughter also has IS and I love reading such hopeful and wonderful stories.
Christine M - 04/09/99 04:21:04
Comments:
Carol Sexton - 04/09/99 00:49:04
My Email:carolsexton@fuse.net
Where are you from?: Batavia, Ohio
How did you find us?: From you Mom
Comments:
Debbie,
I finally found Kevins page. I love it. You did
a really nice job. It has helped me alot to
read this about Kevin. You know how much he means
to me. I have only been with Kevin such a short
time, but he really grows on you. As for you his
parent, he couldn't have been more blessed. I love being able to be a part of Kevins life. Thank you for allowing me to know Kevin.
Sincerly,
Carol Sexton
Kevins Assistant at Thomas Wildey School
Miss Betsy Pfeffer - 04/07/99 22:50:54
My Email:btpeff@bright.net
Comments:
Great!!!! I love the picture, what a big smile. I love you all!
Kevin's E.I. teacher
Miss Betsy Pfeffer - 04/07/99 22:46:33
My Email:btpeff@bright.net
Comments:
Great!!!! I love the picture, what a big smile. I love you all!
Angelia - 03/22/99 05:21:38
My Email:acrum1@webtv.net
Where are you from?: arkansas
How did you find us?: search
Comments:
your little Kevin is adorable. my daughter is 9 months old. she was born 3 months early and weighed 2 pounds 11 ounces. She did well the first 8 weeks of her life then developed spinal meningitis. since then we have a multitude of problems. she suffered
evere brain damage, has central diabetes insipidus, seizure disorder, panhypopituitarism and many other diagnosis. now i believe she is developing infantile spasms. the neurologists are consulting each other for the next plan of treatment. she currently t
kes phenobarbital, clonazepam, tegretol and valium for her seizures. I hope we will have a success story soon. I do appreciate you sharing your story with others. it sometimes seems as if you are in this all alone and nobody understands. it helps to hav
someone to share your stories with. thank you.
Karen Higginbotham - 03/21/99 02:12:33
My URL:http://www.angelfire.com/la/alison/index.html
My Email:karenhig@gateway.net
Where are you from?: Louisiana
How did you find us?: search
Comments:
Kevin is an adorable little boy! Thanks for sharing your story! My 10 year old daughter, Alison, had infantile spasms. She does have significant delays in all areas of her development. Each new thing that she does brings us great joy. She is a wonder
ul child and she means the world to us.
Lorraine Richards - 03/03/99 13:46:33
My Email:Lorraine_Richards@Computacenter.com
Where are you from?: England
How did you find us?: Searching Using Yahoo
Comments:
My god daughter was diagnosed two days ago 2/3/99 and we are in shock at the moment.
All morning I have been searching the web for information and have obviously discovered that the outcome on most cases is grim.
It is great to read Kevin's story, which has given me hope and no doubt give his parents.
Thank you
Lorraine Richards - 03/03/99 13:42:45
My Email:Lorraine_Richards@Computacenter.com
Comments:
Dr. Ashok Alate - 02/16/99 12:01:17
My Email:ferring@bom3.vsnl.net.in
Where are you from?: Bombay India
How did you find us?: Interest in IS
Comments:
My best wishes to Kevin
Rome Milan - 02/15/99 07:34:11
My Email:Romeparis@aol.com
Where are you from?: Fort Worth, Texas
How did you find us?: Yahoo- Infantile Spasm
Comments:
Debbie, I am very happy for you and your Family. Ours was less fortunate. We loosed our Daughter "Matisse" August 12 1997
Jonna - 02/03/99 03:23:58
My Email:jfishalot
Where are you from?: Denver
How did you find us?: looked up IS on yahoo
Comments:
Thanks for sharing your story. Looking up info for IS for friend who has child with Down's and recently dx'd with IS. I provided respite care for her and one day noticed seizure like symptoms. I am an O.T. Your boy is a precious blessing.
Reginaldo Barbosa - 01/31/99 10:49:04
My URL:http://sol.com.br
My Email:reginaldofb@bel.sol.com.br
Where are you from?: Brazil
How did you find us?: search on the Web (Infoseek)
Comments:
I have a son, 4 years old, suffering with West syndrome since his 3 months of life. He has many seizures diary (aproximately 4 per day). He presents serious developmental delay. Treatment with antiepiletic drugs did not presented good results so far.
Barbara Peet - 01/28/99 21:18:00
My Email:Barb_peet
Where are you from?: Camas, WA
How did you find us?: www.Yahoo
Comments:
I am Barbara and have a son with west syndrome he is now 13 and doing very well on
the ketogentic diet. He use to be on most of the
anticonvusive drugs and none of them work but
thanks to the doctors and nurses at providence
child center in Portland,Oregon he was able be a
part of the diet. Well go to go talk to you soon.
Kim Ball - 01/23/99 22:47:53
My Email:tballjkangel.mcsi.net
Where are you from?: Roseburg, Oregon
How did you find us?: Looked up Infantile Spasms
Comments:
Thank you for putting such a nice page together to help others. Jessica was 3years old in Nov. She was diagnosed with IS at 7months of age. I have just bought my first computer and hooked up in the internet in Dec. I am hoping to find out more information
to help little Jesscia. She was also diagnosed later to have Autism. We thought that the Dev.delays she had from the IS not actually Autism. We had her evaluated from a Dr. in Eugene and he said she was in the umbrella spectrum. She does mostly things in
he sensory area. Ex: likes the vacumn,dishwashers while running,to go in circles, tippy toes alot. We are having trouble controlling her seizures. She is on Tegretol 7 1/2 ml 3x aday and Klonopin 0.5mg at night time. She also doesn't sleep at night. We th
nk the seizure wake her up all the time. She does what we call a myoclonic type seizure. It can be from twetches to just a all out cry like someone is pinching her. We almost have to guess sometimes if she is even having them of not. We are interested in
nowing if you have heard of anyone giving their child large amounts of B6 to help with seizures?? Thanks for listening I could go on and on I guess. thanks again Kim Ball
Kate Pleger - 01/23/99 19:37:40
My Email:eweb@execpc.com
Where are you from?: Green Bay, WI
How did you find us?: Yahoo
Comments:
Thank you for your story. Our son Matthew was diagnosed with IS in October of 1998 at 3 months old. We began an aggressive course of treatment with ACTH which bloated him up like a balloon. Once his EEG started to get closer to normal, we weaned him of
ACTH but started him on the Topomax. He got really sick and had to hospitalized and did not eat at all. I did not know if it was due to the illness ( para-influenza) or the Topomax. The neurologist said we could take him off the drug. We have not see
any seizures since October 30, 1998. Unfortunately his is delayed and is at high risk for cerbral palsy. We will start the early intervention program (birth to three) soon. What side effects have you noted from the Topomax. I hope we did not take Mat
hew off it too soon. Also, I have read other stories about kids with IS taking vitamin B6. Have you tried this? Thank you for your story of hope. Best of luck to Kevin and your entire family. Kate
Luis Campos Flores - 01/23/99 06:59:32
My Email:camposf@idn.net.mx
Where are you from?: Monclova, Coahuila. Mexico
How did you find us?: Búsqueda Infantil
Comments:
Deseo la mejor de las suertes para Kevin y su familia.
Sigamos pensando que hay un ser todopoderoso y que nos ama y no quiere que nos pase nada malo.
Suerte.
Lisa Ruigrrok - 01/22/99 16:42:10
My Email:ruigrok@exchange1.cmh.on.ca
Where are you from?: Ontario, Canada
How did you find us?: Yahoo
Comments:
What a cutie! I love to hear about the remarkable success these IS kids are making. My daughter has IS and and is doing pretty well. Thanks for sharing your story.
Tonya Gray - 01/12/99 21:34:12
My Email:GLOBBEGLUU@aol.com
Where are you from?: Michigan
How did you find us?: seizure disorders
Comments:
So glad to hear of a good outcome! We are one year into IS. Our daughter Karley is doing much better, with spasm gone almost a year ( she hade them for five months) Her catch up is kind of slow, witch can be very fustrating! But I have faith she will get
here! Best of luck!!!!
Kathy Goodlett - 01/09/99 20:25:27
My Email:goodletts@email.msn.com
Where are you from?: Columbus, Ohio
How did you find us?: searching Lamictal
Comments:
Beautiful little boy! Glad to hear of happy endings. My daughter Megan also has seizures, her's are due to Angelman Syndrome. She is 16 months old, and started on Lamictal last night.
Shar Writesel - 01/03/99 03:59:48
My Email:kcsmommie@aol.com
Where are you from?: Williamsburg,Oh
How did you find us?: Kevin's mom-Debbie
Comments:
Debbie, Sorry it took me so long to finally look at Kevin's story. I actually misplaced the address for some time. Kevin has went through more than I imagined, however, I see Kevin in class and he has really came along way. He is bright, funny, and Kc's f
ture husband!!! Just as long as they don't kill each other first..right? (ha-ha). See you Jan.5th at Wildey Shar
Darci Hoehne - 12/27/98 06:23:33
My Email:AMmom247@AOL.COM
How did you find us?: your e-mail
Comments:
I am so happy to here that Kevin is doing well. Andrew tends to have spasms several months a year then he is seizure free. We went nine months last time, then three months to get him back under control. My husband and I try not to get to relaxed when h
is controlled because it doesn't seem to last that long. Andrew is currently taking 1125 mg a day of depakote, 300 mg aday of tegretol, and 8mg a day of gabitril. It kills us how many pills our son has to take, but if they keep the seizures away a gues
it is worth it? Sometimes I really dont know. Adrew is developmentaly normal except for his langauge. He has some delays in motor areas, such as peddling a bike and sometimes his balance is off. Other than that he is a very happy, loving,three and a
alf year old. Would love to hear from anyone who has questions or just wants to chat.
Lorrie Budahelyi - 12/26/98 07:05:01
My Email:steven.budahelyi@gte.net
Where are you from?: Garland, Tx
How did you find us?: Infantial spasms web page
Comments:
We have a daughter (Becka) that started have IS at 9 months of age. We are involved in the Vigabatrin study. Her spasms were stopped with 3 days of starting the medication. And thank GOD to this day, we are still spasm free. She does have brain damage
but not due to the spasms. This is due to Porencephaly.
Thank You so much for sharing Kevin's story with all of us. It's nice to know were not alone.
Thank You,
Lorrie Budhelyi
steven.budahelyi@gte.net
Susan Boehm - 12/04/98 18:30:25
My Email:RSmjB@aol.com
Where are you from?: Cherry Hill, NJ
How did you find us?: Yahoo
Comments:
My daughter, Jillian, was diagnosed with IS in Nov. of '92. She was 5 months old. Jillian's seizures were cryptogenic also. She began taking prednesolone and the spasms stopped immediately. By the middle of Dec., she was totally weaned from the pred.
In January the spasms reappeared. We used the same treatment and the spasms were gone by the middle of Feb. Jillian was seizure free until the following Sept. when we resumed her immunizations. Her neurologist put her on 1 shot of ACTH daily for the f
rst momth, and then every other day. Depakote sprinkle caps were added the following Feb. Jillian responded well to this combination and was weaned from the ACTH by that June. She continued the Depakote until this past Nov. 16th. She is seizure free f
r the most part. The only time I see anything is when she is sick. Last year her EEG was normal for the first time, but this past Nov. it was abnormal again. She had a virus at that time. We decided, along with her neurologist, to stop the Depakote to
see if it was masking other seizures on the EEG, or if it was doing anything at all. She was on a very small dose. Jillian's virus is gone, I see no sign of spasms, and I bet her EEG is normal.
Jillian is 6 years old. She has no learning disabilities. She has worked with an OT for 1 year to help with fine motor skills. When she started school last year, she could barely hold a pencil. Now she has no problem. She is right where she should b
academically.
We are blessed that Jillian is doing so well. I pray everyday for all children with IS. I know exactly how devastated every parent is when they hear that diagnosis.
I would like to know if you ever noticed a change in the amount of spasms when Kevin was sick. IS seems to be related to the immune system.
God bless you and Kevin. Hope to hear from you.
Susan Boehm - 12/04/98 17:33:07
My Email:RSmjB@aol.com
Comments:
- 12/03/98 21:42:18
Comments:
Linda Smith - 11/25/98 14:48:11
My Email:hdoerfeet2@aol.com
Where are you from?: Saskatchewan Canada
How did you find us?: browsing the web
Comments:
I have a grandson who is almost 5 and was diagnosed with IS at the age of 2 weeks. His name is also Kevin. Kevin has just recently (1 week ago) undergone his 3rd brain surgery. He now has had total removal of the right side of the brain. Kevin was jus
learning how to walk when he had to have this last surgery. He has vocal skills, but as yet is only able to say a few words, which is supplemented by "signing". He is such a loving and happy child and we have learned so much from him. I pray that one
ay he will live as normal a life as is possible for him. As of this day he is still hospitalized from the latest surgery and fighting menangitis. Please include our Kevin in your prayers. Thanks from this granny Smith.
vickey burley - 11/22/98 17:10:58
My Email:kmburley@bellsouth.net
Where are you from?: stone mountain, ga
Comments:
My child, Kristen, was just diagnois with IS. I am still learning about this affliction. She is 4 mos. old and seems to be doing fine. I have to give her a shot of ACTH every day. It has been about a week and the spasms are occurring less each day. W
have not experience the test Kevin has, but I am sure they are in our future.
I hope only the best for Kevin and for you. I understand as a mother to hear the doctor tell you your child has IS and the chances for a normal life are slim. Please email at the above address and keep me updated with Kevin's progress.
vickey burley - 11/22/98 16:52:15
Where are you from?: stone mountain, ga
Comments:
Pat Bradford - 11/21/98 17:34:23
My URL:http://5504485
My Email:deerhab@eaze.net
Where are you from?: Texas
How did you find us?: Yahoo
Comments:
My neice has IS. Jennifer started having seizures at 2 weeks old. She is now 2 months old and we have the seizures almost under, except for a couple of seizures a day lasting only 2 to 3 seconds.
Joey, Caprise & Nickolas Martin - 10/28/98 21:20:02
My Email:J0EYMARTIN@MSN.COM
Where are you from?: Milford, Ohio
How did you find us?: Rodney
Comments:
Lisa Ruigrok - 10/07/98 18:14:42
My Email:Ruigrok@exchange1.cmh.on.ca
Where are you from?: Ontario, Canada
How did you find us?: Yahoo
Comments:
I love to hear all the positive stories. My daughter was diagnosed with IS in March of 98.
Maria - 10/03/98 00:00:57
Where are you from?: Australia
How did you find us?: spoke to you on icq
Comments:
Hi debbie,
How georgous Kevin is, he will break many girls
hearts in the future. Stay strong and positive.
God Bless
Maria
Mum to Claudia aged two with lissencephaly
Gracie Luntsford - 09/28/98 20:45:28
My Email:ummrunakey@hotmail.com
Where are you from?: Omak, Washington
How did you find us?: internet at work
Comments:
My son, Jesse, now almost 8 was diagonosed with infantile spasms when he was 6 months old and we have tried many different drugs and none have controlled the seizures and I am just looking for some people to talk to that have been down the same road. Than
you!
Bonnie - 08/31/98 02:35:57
My Email:bjlawson@unidial.com
Where are you from?: Cherry Grove, OH
How did you find us?: Kevin's Granny Smith
Comments:
Kevin is adorable! This page is very well done
and should be a help to others. It is great that
you took the time to do it. I'm going to print a copy for Jeannie. She is a speech pathologist and has been very interested in Kevin's progress. Take care, we wish you continued progress and give him a hug and a
kiss from (as our grandsons call us) Nee and Reets
Andy&Tammy LaFrazia - 08/09/98 06:25:35
My Email:lafrazia@teleport.com
Where are you from?: Vancouver, WA
How did you find us?: Debbie
Comments:
We enjoyed the web page and we will continue to pray for Kevin. Keep us updated on his progress.
Love, Andy,Tammy, Nicholas and Hannah LaFrazia
Martha Enriquez - 08/05/98 01:49:05
My Email:MEnriquez1@MSN.com
Where are you from?: Batavia, Ohio
How did you find us?: Parent Coordinator gave me the address
Comments:
This is such a way-cool thing to have one of our own Early Intervention kids with his own web page!!! What a modern family of the 90s!!! Kevin, you are one lucky little dude to have such smart and aggresive parents to get you the help you need. We are
ll proud of you and will always be here for you and your family. Keep up the good work Debbie!! I loved seeing you at the fair last week and the goats say HI to you Kevin. Take care.
Aunt Sheila Harris (She-She) - 08/03/98 14:05:31
My Email:sheila_harris@aici.com
Where are you from?: Amelia, Ohio
How did you find us?: Kevin's mom told me.
Comments:
Aunt She She loves your web-site and is so glad to be a part of your life. You're such a modern kind of guy. I think the next word that we should work on is "shopping".
Love Ya, Love your show. Aunt She-She
Linda Cooper - 07/15/98 02:03:56
My Email:coop142@juno.com
Where are you from?: Cincinnati
How did you find us?: Aunt Debbie
Comments:
The story is uplifting and inspiring. Kevin looks as adorable as ever. Give him a hug, a kiss, and a teeni beani baby.
mamaw bos - 07/09/98 17:04:58
My Email:decman@aol.com
Where are you from?: cincinnati Ohio
How did you find us?: From Kevin's mommy
Comments:
Mamaw has known from the day you were borned what a handsome and precious little guy you are, now people from many places will also get to see that precious and adorable little guy, that we all know and love so much.
Love
Mamaw
mamaw bos - 07/09/98 17:04:28
My Email:decman@aol.com
Where are you from?: cincinnati Ohio
How did you find us?: From Kevin's mommy
Comments:
Mamaw has known from the day you were borned what a handsome and precious little guy you are, now people from many places will also get to see that precious and adorable little guy, that we all know and love so much.
Love
Mamaw
mamaw bos - 07/09/98 16:57:52
Where are you from?: cincinnati Ohio
How did you find us?: Through my daughter-n-law Debbie
Comments:
Mamaw has known from the day you were borned what a handsome and precious little guy you are, now people from many places will also get to see that precious and adorable little guy, that we all know and love so much.
Love
Mamaw
RoseMarie Bolinder - 07/09/98 03:07:12
My Email:RBolinder@juno.com
Where are you from?: Florida
How did you find us?: MISC chat
Comments:
Kevin is such a CUTIE!! It's great to be able to put a face to the name He is blessed to have such loving parents. Thank you for sharing his story. "Talk" to you next Wednesday!
AUNT LISA - 07/09/98 01:18:01
Comments:
WE LOVE YOU KEVIN AND YOUR ALWAYS IN OUR PRAYERS.
SEE YA SUNSHINE!!!!!!!!!!!
LOVE AUNT LISA
Amy Johnson (Kaitlin's Mom) - 07/08/98 15:43:26
My URL:http://geocities.datacellar.net/HotSprings/Spa/6034
My Email:starbuxAMJ@bigfoot.com
Where are you from?: Sacramento, CA USA
How did you find us?: your Mom sent me the link!
Comments:
Kevin -- You are one tough and lucky boy! And so cute, too!! It has been a real pleasure getting to know your Mom -- I look forward to meeting you in person some day.
Chris, Tom, Melissa, Keith & Macey - 07/08/98 15:26:20
My URL:http://geocities.datacellar.net/HotSprings/Spa/6021
My Email:tweetielissa@bigfoot.com
Where are you from?: Holland, Ohio
How did you find us?: Linked IS Pages
Comments:
I loved your touching story. Kevin is a very lucky boy to have such a loving and supportive family. Getting to know Kevin's mom, Debbie, and all the other great IS parents, has been the most rewarding part of this journey.
Chris, Tom, Melissa, Keith & Macey - 07/07/98 16:44:02
My URL:http://geocities.datacellar.net/HotSprings/Spa/6021
My Email:tweetielissa@bigfoot.com
Where are you from?: Holland, Ohio
How did you find us?: Pages are Linked
Comments:
Kevin sure is a lucky boy to have such a loving and supportive family. Getting to know Kevin's mom, Debbie, and all the other great parents of IS kids, has been the more rewarding part of this journey.
JERRY CUNNINGHAM - 07/07/98 15:09:41
My URL:http://jc@tritium.net
My Email:jc@tritium.net
Where are you from?: outerspace
How did you find us?: in outerspace
Comments:
THE PAGE IS VERY INFORMATIVE AND VERY INTERRESTING
LOVE JERRY LISA AND BOYS
Marie Cummings - 07/07/98 04:42:56
My URL:http://geocities.datacellar.net/HotSprings/Villa/3429
My Email:woodstitch@foxinternet.net
Where are you from?: Bellevue, WA
How did you find us?: I know Debbie through MISC
Comments:
What a wonderful page! Ellen is a master at making our words look wonderful! Kevin is such a beautiful child, you can see the spark in his eyes. I wish you the very best, and will add Kevin's link to Jason's page on my next update!
Kathy - 07/07/98 03:51:29
My Email:kaki22@earthlink.net
Where are you from?: Texas
How did you find us?: URL
Comments:
Good job Debbie,your Kevin is a very handsome boy.
Charlotte Pennington - 07/07/98 03:01:19
My Email:cpenn@comsys.net
Where are you from?: New Castle, IN
How did you find us?: Eddie's story
Comments:
My son has IS. Nothing is working. I'm devastated! It has been 4 1/2 months since the diagnosis. He has been on ACTH, phenobarbitol, depekene, B6, and vigabatrin.
The last three are his current medicines. I am happy for you and your family. I hope things continue to be well for you.
Charlotte Pennington - 07/07/98 03:00:26
My Email:cpenn@comsys.net
Where are you from?: New Castle, IN
How did you find us?: Eddie's story
Comments:
My son has IS. Nothing is working. I'm devastated! It has been 4 1/2 months since the diagnosis. He has been on ACTH, phenobarbitol, depekene, B6, and vigabatrin.
The last three are his current medicines. I am happy for you and your family. I hope things continue to be well for you.
JOYCE FRYMAN - 07/07/98 00:02:01
My Email:JOYAM@AOL.COM
Where are you from?: CINCINNATI,OHIO
How did you find us?: AUNT DEBBIE
Comments:
DEBBIE YOU DID A WONDERFUL JOB WITH KEVIN'S PAGE.
JOYCE FRYMAN - 07/06/98 23:59:06
My Email:JOYAM@AOL.COM
Where are you from?: CINCINNATI,OHIO
How did you find us?: URL PAGE
Comments:
DEBBIE YOU DID A WONDERFUL JOB WITH KEVIN'S PAGE.
Jan Silbermann - 07/06/98 22:14:14
My URL:http://geocities.datacellar.net/Heartland/Flats/2904/spasms.html
Where are you from?: New Orleans
How did you find us?: MISC
Comments:
What a cute little guy! I run the IS mailing list and am really enjoying talking with other IS parents and reading stories. Your page is adorable.
Jan
Becky Stark - 07/06/98 21:58:48
My Email:azeiplhc@ctaz.com
Where are you from?: Lake Havasu City, AZ
Comments:
He's beautiful Debbie and what a heartwarming story filled with hope. I made a copy of it and sent it to the local family whose little boy was just diagnosed with IS. Thanks for sharing it with me.
Aunt debi - 07/06/98 21:55:49
My Email:phouse@erinet.com
Where are you from?: Ohio
How did you find us?: His mommy
Comments:
T
Aunt debi - 07/06/98 21:55:48
My Email:phouse@erinet.com
Where are you from?: Ohio
How did you find us?: His mommy
Comments:
T
Aunt debi - 07/06/98 21:55:47
My Email:phouse@erinet.com
Where are you from?: Ohio
How did you find us?: His mommy
Comments:
T
Aunt debi - 07/06/98 21:55:46
My Email:phouse@erinet.com
Where are you from?: Ohio
How did you find us?: His mommy
Comments:
T
Angela RodenParker - 07/06/98 20:33:48
My Email:Angela_RodenParker@aicil.com
Where are you from?: Anthem BCBS
How did you find us?: Sister Sheila
Comments:
Cute Kid!
Becky Stark - 07/05/98 16:52:12
My Email:azeiplhc@ctaz.com
Where are you from?: Lake Havasu City, Arizona
How did you find us?: Amy
Comments:
let me know when construction is complete
Ellen - 07/02/98 04:48:40
My URL:http://www.bigfoot.com/~wwwebcafe
My Email:wwwebcafe@bigfoot.com
Where are you from?: Florida, USA
Comments:
Hi, Kevin! I'm so excited to read your story! I hope you like your website; Eddie loves dogs too. Take care!
Ellen - 07/02/98 04:45:39
My URL:http://www.bigfoot.com/~wwwebcafe
Where are you from?: Florida, USA
Comments:
Testing.... How does this look?
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