Infantile spasms

Kristy - posted on 12/17/2012

Ian took vigabatrin first then they added topomax. His neurologist weened him off the vigabatrin while ramping up his topomax. They both severely affected his personality. When the Infantile Spasms were gone the 2nd time, Ian suffered a relapse, his seizures changed and she then put him on depakote and carnitine. That was even worse. He was just evil all the time as well as put on a ton of weight very quickly. The neurologist consulted an epitologist and she suggested zonisamide, or zonegram which is the generic brand. We have had a great deal of success with this medication. Especially after they switched it the liquid form. Seems Ian's body metabolizes the medication different in the liquid form. We have a sweet boy once again. Sorry to hear your family is on this journey. Just know you are never alone!!!

Vanaja - posted on 12/17/2012

Hi Jennifer Beverly,

Hope your son Eli is fine now. I am from India, my son Jayanarayan has IS. Currently undergoing VIGABATRIN tablet after changing so many tablets Could you please let me know what tablets you followed.

Rola - posted on 10/07/2012

Hi,

My kid has been diagnosed with IS when he was eight months old. He happens to be a premature baby too born with IVH. Thank God, the IVH is now resolved but left my kid with IS. He is now on Sabril and since August, he did not have any single seizure. My kid is still struggling to sit and he is on physiotherapy and occupational therapy too. We are having constant EEG scans and eye specialits, pediatrics, and neurologistst checking on him every now and then. Will my kid ever walk? talk? go to school? I am so frustrated- do not know what to do...

Kristy - posted on 08/21/2012

Here is a great blog by a mom. She has documented everything!!
http://www.happybeingtrevy.com/

Kristy - posted on 08/21/2012

Misty, Im so sorry you have had to go through this feeling alone. I think everyone has had that emptiness at some point. But now, you have ALL of us moms!!! YEAH!! Im a member on the epilepsy foundation forum. I found so much support and comfort there. If you find time, check it out. Here is my page http://epilepsyfoundation.ning.com/profi... . At one point I was angry EVERYDAY and not very easy to be around. To say the least. I read one post by another parent, and all they said is they were angry as well and it was ok to be angry. To hate this epilepsy and what it was doing to your baby, and your family. All the sudden, I felt so much better. At least I could relate to someone. Just know you are NEVER alone...never.

Holly - posted on 08/18/2012

Hey stephanie, just wanted to let u kno my son has i.s too and my dad when he was young had siezures as well, and the docs have not found "why" my son got i.s but i think family history has a big play in things.

Sandy - posted on 05/18/2010

At Haylee's age .. they aren't infantile spasms anymore. They should be classified as seizures. Some doctors are just idiots and don't have a clue or really care. I suggest getting a new Neurologist that will properly diagnose her. There are medicines out there that could be helping her. My son has overcome a great deal, including removal of his left brain .. and he still seizes. I keep trying and that is the best thing I can do. I recommend you shake up the doctors and get some better answers to making her life better.
God Bless,
Sandy Lora

Jennifer - posted on 05/17/2010

Hello. My son Eli has IS. He is 8 months old and was dx'd at 5 months. They have yet to find a "cause" for his seizures. We do know that he has mild thin white brain matter but according to his neuro that is not a direct cause. Pregnancy was perfect and so was his birth. There arent any relatives in my family that have any seizure disorders. My husband was adopted so we are unsure about his side of the family. Anyway, we just found out that Eli does have 2 chromosome abnoramilties. We wont know what the means (if anything) until June 29! Eli takes Sabril (vigabatrin) and Topamax. He is still having ONE episode per day and it is always in the middle of the night. So strange. He is starting therapy next week but I think he is doing pretty good developmentally considering. He is rolling over, sitting for several minutes by him self, saying boo, gigi and nu uh, eats well with a spoon, etc. I would love to talk to other mom's with children with IS or other seizures disorders.

Mindy - posted on 03/10/2010

Hi My daughter Sidney was diagnosed with IS at 6 months She was born Premature and had a severe brain bleed not expecting to make it a year. She is taking Sabril and Phenobard to control the Seizures, the spasms have stopped but I think there is some seizure activity. It has been a very tough year, She had a VP shunt put in in April and a G-tube put in December she cannot eat or sit up on her own, Put she has the cutest smile which she is starting to do more and mor. when she was first diagnosed with IS she stopped smiling and they said she may never get it back, Thankfully they were wrong . She is also has CVI (Cortical visual impairment) which make it hard to stimulate her to play with anything. We have been very lucky there has been no issues with the Shunt or G-tube.

Stefanie - posted on 03/09/2010

Hi! My daughter Jocelyn first started having IS around 5-6 months old. I took her to a couple different pediatricians and even to the ER for what I thought were seizures( at this point I had no clue what IS were)... They ALL told me I was basically being a hypochondriac and my child was NOT having any type of seizure but spasms caused from an ear infection! Then... After my husband and I were married July 1st 2006 ... on July 6th 5 DAYS after we were married... Jocie has 4 gran mal seizures with in a 12 hour time period. We take her into the ER for a CT scan which they begin to grill uss and automatically start looking at us like we abuse our child! it appeared on the CT Scan, that she had a bunch of brain bleeds... so they call CPS while we are having to watch our 15 month old babygirl have 2 spinal taps, Full body Xrays ( because they are treating her for a supposed Non-Accidental Trauma) numerous tests and meanwhile continue having seizures... they finally did the MRI and with a skin test that included several hypopigmented "white" spots all ovver her body and a significant developmental delay in all areas She was diagnosed with Tuberous Sclerosis with Epilepsy... She now has multiple tumors in her brain and kidneys, was diagnosed with Autism and sensory integration dysfunction in March 2007. Jocie is nonverbal and only communicates through some sign language she picked up(6 signs)....
I was also diagnosed with Tuberous Sclerosis but a mild form of it in April 2008 and with Multiple Sclerosis in November 2007. My mom passed of Multiple Sclersis in May 2005 and we also strongly believe she also had Tuberous Sclerosis as well.
My maternal second cousin stacy (blood-relation) and I fianlly met up through one another through facebook last year and come to find out her son Andon has also been diagnosed with Infantile Spasms. Anyone have familial IS in their family... we are now trying to find any other families out there with familial IS. Andon does not have Tuberous Sclerosis and only has the IS from some unknown reason.

Katie - posted on 03/08/2010

My son was diagnosed with IS last week and he is eight months he also has neonatal diabetes diagnosed at 2 months. I feel so overwhelmed and worried and scared all the time. I am so worried about him and what his life will be like. He is currently sitting up well and can walk if holding on to our hands. But while he was been on ACTH he has been extremely irritable and not his normal bubbly self. He only wants to nurse and nothing else. Another EEG tomorrow hopefully with good news..

Kelly - posted on 02/07/2010

My 18month daughter Honor has IS which started at 2wks old, we have tried so many diff meds that havent worked & been in & out of hosp also. Rebecca I see your girl has laryngomalacia which Honor also has. Honor started to sit at 14months & can get up on all fours. She doesnt smile very often or know how to use her hands which puts play & finger food out of option, she is also a very unhappy wee tot. We have just started Lamotrigine & are on Epilim at the mo.Honor is going to hosp for an MRI on Friday, we are really hoping for some answers.
Take care all
Kelly

Sherena - posted on 02/04/2010

My daughter Haley has infantile spasms and it is just crazy....Heartbreak and fear. I am here if you wanna talk about anything at all!!!

Kamesha - posted on 02/17/2009

Enada, Thank you for the encouraging words. Everyone here is so positive. You all are so uplifting. Your stories have let me know that there is light at the end of this dark and grim tunnel. I am so excited about the goals Trysten will reach. He has yet to walk or talk, but he tries so hard, with patience I am hoping that our story will also change. Next thing you know I will be talking about him standing and playing and talking. I can't wait for that day.

Kate - posted on 02/17/2009

My daughter was diagnosed with infantile spasms when she was 6 or 7 months old. she has Tuberous Sclerosis and she started having "regular" seizures at 4 months and they progressed to IS. They were successfully treated (after several other meds failed) with ACTH but they came back 6 months later. We started on the road to identify whether she was a surgical candidate and during that time we got permission to put her on an experimental drug called Clobazam. They stopped the IS within a few days and she went days without any seizures at all. About the time when she was determined to be a surgical candidate, she had a 7 1/2 hour long surgery to remove her left frontal lobe (which was actually basically taken over by a tuber). The surgery was in May 2008 and after two shunt surgeries in September and October of 2008 she is doing well. She just learned to walk unassisted two weeks ago and is making tremendous strides in other areas as well. Do they know why Haylee has IS? I hope you find some answers. Feel free to ask any questions you may have.

Rebecca - posted on 02/17/2009

My daughter, Nevaeh is 5 months old and was just diagnosed with infantile spasm. She also has other medical problems such as failure to thrive, laryngomalacia, poor suck and swallow, and a deletion on her Chromosome 13q..Neveah is my first child and she is such a blessing! It has been a tough 5 months but she is such a fighter! I don't know anyone that has a child with infantile spasms...glad I saw your post!!!!

Dawn - posted on 02/16/2009

Hi. My oldest son, Jake, was diagnosed with Infantile Spasms when he was 8 months old. We were painted a pretty grim picture at that time. Although he had some significant delays (couldn't sit up until over a year old; couldn't walk until he was almosts 2), we were lucky. The first medication and dosage worked. Jake was diagnosed on March 10, 1992, and his last seizure was April 6, 1992. He took medicine for a year and was then weaned off the medicine. He had an EEG in May of 1993 and it was completely clear! Jake will be 18 in June. He will graduate from high school on June 5. He plays football, baseball, and runs track. He is a typical high school boys with nothing but sports and girls on his mind. We have been very blessed, and he has exceeded every hope that we were ever given for him.

Enada - posted on 02/16/2009

Kamesha,

I feel totally on this , it took me soo long to find my feet Eunice is 3yrs now and a very beautiful gal, if only they tell u, no one ever believes she can't even sit, its been 3 wonderful years i must say, the longest of my life ever, she was developing fine until 4months when we had i 1st seizure,been to many neuros with her in India, UK, UAE, Nigeria and we are due seeing another in the Boston , just payed the fees and waiting appointment. we have had several antiepileptics, Vigabatrin, Phenobarb, Acth,Tegritol, Epilim amongst others, at a point i tailed everything off , shes had a lot of moths with out seizures and her best were off medications ,recently after a long while she had a break thru seizure back to back, hers are really funny cos if u never know her history u could never guess ,most times i feel its more of an indigestion ,she aspirates alot  and i have learnt how to feed her with puried meals and takenout those cereals with particles that cos consistent infections, at 2 yrs we were in and out the hospitals for infections, but rearly go there, becos of our poor medical provisions her dad and I just get on the net and do the best we can here without the help of a neuro,

Above all I found out shes a very strong gal, for her to  be here despite all shes been thru, Don't lock urself  up, am glad u have the support of family cos that s all that can get u through , put around u very positive people that believes the best for TRysten and you,

Glad u believe in God hold on to his scriptures cos that all i do Eunice has and elder brother Yahaya he would be 5 in July and all we have taugth him is never to look at Eunice in a different ligth, we talk to her normally and treat her d same way we do Yahaya, thats and attitude u should pick never look at Trysten and cry instead tell him u are whole and speak everything u wish for a normall life , tell him you would go to school and be like every other child, the moment u look him differently then others around u would and put ur spirits down, from d picture i see a cute little fella who is not given up so u should never.

Its not been an easy road and i totaly agree, its really difficult ,but the Grrace and strength of God has brougth us this far and we only look and don't believe its 3 years already, you are getting there and yopu are doing a wonderful work, ur little angel would get to say this thank you to u soon ,just hang on and live your life positively.

Kamesha - posted on 02/15/2009

O my! Its so great to have found someone that knows where I have been.First, I would like to say that I am so excited about meeting a mom that looks as happy and vibrant as you do in your photo. I am finally trying to get to that place, it has been such a struggle over the past two years. My son Trysten has IS and was first diagnosed at about 3 months old, he had his first seizure at 5 days old. The most hes has had is 230 seizers but now he is down to about 50 a day. I secluded myself from the world barcading myself in my home spending countless hours trying to find a cure for him. For the last few months I have been working on moving forward excepting the situation. Especially since Trysten is so giggley, bubbley, cute and doesn't have a care in the world. Any who. It is nice to meet you. Please share some of the wonderful things that your daughter has done that defies the glass ceiling that doctors automatically put before our children

Enada - posted on 02/12/2009

Hi,

My daugther Eunice was diagnosed with IS at 4months too, shes 3 years old now and we have not still given up, I trust God absolutely, its been a long road but i see an end to it, some day i would tell her story, howz ur dota  now? anu setbacks, Eunice can barely sit at 3,her head holding isn't soo perfect , but she is a strong girl despite all medications and hospitals.