What meds is your child taking for Infantile Spasms?

Elisa - posted on 08/11/2011

I realize that I have not followed this post in a while! My son just turned 3 is is doing wonderfully. He is currently taking Luecovorin (folinic acid) because he infantile spasms were caused by a cerebral folate defiency. It is a fairly resent discovery (in the last 5 years). He had a lumbar puncture after many failed attempts at severe drugs and when he folic acid levels were extemely low in his spinal fluid but normal in his blood, they realized something was off and put him on luecovorin. It is a medication normally given to chemo patients with no diagnosed side effects. They have done many genetic tests and have yet to find the cause of the folate defiancy is his brain so he has become a case study of sorts.
With little to no side effects, I wish that this treatment had been the first line of defense as it has become in a few other Children's Hospitals that we have learned about. If the cause of the seizures has not been determined for your child. Please ask them to check his CSF levels or if this is an option!

Jeanette - posted on 08/01/2011

Hi,
My son took ACTH as soon as the seizures began, about 6 months of age, and on the third day, after receiving his first shot he stopped having seizures and has been seizure free since. He is now 1 year and 4 months. Good luck...

S.K - posted on 06/05/2011

Hey Kelly,
My son is having brain surgery on June 22. I found a little boy who had Infantile Spasms since he was born...they tried EVERYTHING...the keto genic diet, every seizure med and ACTH (steriods). NONE helped...he had brain surgery in the fall and since his surgery, he has had NO seizures. Here is his blog (you can get their contact info on there...they know it all and could be a GREAT resource for you, http://www.evanstauff.com/ also, another little baby just had surgery as well...and has had NO seizures since surgery! http://teamcharlieclaire.blogspot.com/
We are praying for the same result for our little guy...June 22! here's our blog www.beatingepilepsy.blogspot.com

Eahndrea - posted on 06/02/2011

My daughter has had infantile spasms since she was 3 months old. She was on phenobarbitol alone and that did not work, then they added keppra, and that did not help, then they took her off keppra and put her on toppamax. Now her seizures are worse she will be starting the ketogenic diet on june 28th. I refuse to do the injections or put her on a medicine that can blind her so I hope this diet works.

Mariel - posted on 11/22/2009

We just started taking Sabril for our 6 month old girl. It's just now being used in the US, but our neuro has been getting it for years out of the UK and it has worked very well for us. Things seem to be more organized for her and it doesn't mess with her sleep like the Zonagram we tried did. We are also on Phenobarb as well right now. We will be having an EEG in 2 weeks to make sure the Sabril is doing its job. But we've been really happy with what we've seen so far. There are two main side effects, 1) Possible peripheral vision blindness, that once it's gone, won't come back an 2) changes in the MRI of the brain (not in a good or a bad way, just changes). But out of the dozen or so kids our pediatrician sees that is on Sabril, not one of them has had the vision problem. We had to weigh out the risks on the vision part and rely on God for the rest. It was really scary to start it, but we've liked what we're seeing. Anyhow, let me know if you have any questions.

Christina - posted on 11/21/2009

We tried a big list of meds for infantile spasms. The only thing that stopped it was the ACTH injections. It took 4-6 weeks and the spasms stopped completely.

Kimberley - posted on 11/19/2009

try the ketogenic diet, doctors used to go for therapy of Corticoprortin injections, now they try the diet 1st. You can buy books on it and go to local hospital to ask. We are in northern california and have stanford or children's Oakland hospital to chose from to start the diet. My daughter was on it for 3 years and it helped her seizures a lot. WE have used clonazepam and Keppra as well as Zonegran for her seizures.

Toni - posted on 11/16/2009

happy to hear your daughter is smiling at you, I know what you mean, it does make your day totally.. and makes you grin from ear to ear yourself.. every lil thing they accomplish is just all the much more special :)

Delon - posted on 11/15/2009

My daughter was on Klonopin, Depakote, ACTH, Phenobarbital, Gabitril, and so many more but the one that worked for us best was the ACTH. It was hard to inject her every single day and it made her gain so much weight but we loved it. Now, she is 14 and she is no longer on meds.

Cindy - posted on 11/15/2009

my daughter is 2 yrs old but when she was younger she was on keppra then as she's gotten older they switched her to topamax..but even now they are going to change it again in Jan. 2010

Kelly - posted on 11/15/2009

Thank you everyone for your replies. I have enjoyed reading them all & its great to fell we are not the only ones going through this terrible ordeal. I have much pleasure in telling you all the Honor is now sitting & up on all fours rocking, we have also had a few real smiles (made my day). Hoping all this progress keeps up, she is currently on 5ml Epilim morn & night, physio in the pool once a week & cranial osteopath every 3wks. Take care guys!

Vicki - posted on 11/13/2009

I haven't read all of your replies so hope I am not repeating too much of what has already been said. Our daughter is now 16 yrs old, and she too was diagnosed with infantile spasms at 14 weeks. Due to the fact that there was no particular reason for this (she had no brain damage of any sort, every test came back fine, except for the eeg) the prognosis for her development was not good. She had the most extreme form, so please bare that it mind when i tell you her situation.Also at the time of her diagnosis there were only 80 children in the whole of the UK with the same condition, so we really didnt have a clue what we were facing.She was placed on vigabatrin to start, which made her extremely drowsy, and wasnt completely controlling the seizures anyway, and this led on to a further 10 years of trial and error with every available medication and combination including prednisolone, epilim, topirimate, clobazam, and we even had a trial run of medazalam but which was to be administered bucally (through the cheek) and this was still in its trial phase. Then the doctors decided that the only method left worth trying was the ketogenic diet, but by this time it was apparent that our daughters development was never going to move beyond 5 months of age, and the one pleasure she had was her food, so with the backing of the hospital we decided against it. We had tried many complimentary therapies such as cranial osteopathy, portage, hydrotherapy, chinese herbalists....all with the consent of the necessary professionals. All of which were to no avail.She still suffers many seizures on a daily basis. She seems to benefit from Reiki, and our main aim these days is to keep her relaxed and comfortable. We were also told that puberty would be a very difficult time, and she is coming through it great.
You dont say how old your daughter is, but by the time she is 3 she should have all of the necessary professionals involved in order to help promote her development such as osteopaths, physiotherapists, and if you have a portage worker in your area we found this a really good tool for motor skills. Its like playing, but with specific targets to meet, so its fun for the children.
I wish you and your daughter well. Good Luck x

Charlotte - posted on 11/11/2009

Hi!My 3 month old daughter is on Phenobarb and Carbamazepine ( Tegritol ) She is now being weaned of the phenabarb as it can affect development if taken long term. The Carbamazepine seems to work well for her. Hope this helps.

Mindy - posted on 11/10/2009

My daughter Sidney started having the spasms at 5 months she was on phenobarb before the spasms happend so they added Sabril (Vigabatrin) and that stoped the Clusters completely she does sometimes now and then has a one of jerk a few times a day.Good luck in finding her special recipe.

Nina - posted on 11/07/2009

Maybe you should try Ketogenic diet. Go on web site www.matthewsfriends.org and you can find there some interesting stories, suggestions... I wish you all the best. It's not an easy life, but never stop trying to find the best possible solution for your child because it's worth it. We were fighting with epilepsy for five years and we did find help for our daughter in Geneva. We traveled the world because no one wanted to try something new regarding tipe of terapy. Nadja has epilepsy because of certain tipe of autoantibodies in her body that appeared when she was two years old. Her terapy is plasmapheresis twice a week, stiripentol, frisium and rituximub (immunosuppresive medication). She is daily getting better and better. Nina

Tracey - posted on 11/06/2009

Quoting Kelly:

What meds is your child taking for Infantile Spasms?

My wee girl has tried Phenobarb, Nitrazepam, Pyridoxine, Topirimate, Prednisolone & now Epilim & none of them have worked. Just wondering what your child maybe taking that has worked for them.



Hi Kelly,



I have been reading a lot of the responses to your question about infantile spasms.  And hopefully I have some information for you and the other moms which may be helpful when asking your specialist questions.  Since there are over 40 types of seizure disorders, sometimes pinpointing the exact problem in these cases can be very frustrating for everyone involved.  And even though many people will share similar experiences with their seizures, everyone's an individual and all details are critical in finding the cause and then finding what medication or combination of medications will work for you (your child).  



Below I have copied some of the information from one of my write ups.  This is for information purposes only and is in no way a diagnosis: 



What is Dravet Syndrome?

Dravet syndrome, also called severe myoclonic epilepsy of infancy (SMEI), is a severe form of epilepsy. It appears during the first year of life with frequent febrile seizures – fever-related seizures that, by definition, are rare beyond age 5. Later, other types of seizures typically arise, including myoclonic (involuntary muscle spasms). Status epilepticus – a state of continuous seizure requiring emergency medical care – also may occur. Children with Dravet syndrome typically experience poor development of language and motor skills, hyperactivity, and difficulty relating to others.

In 30 to 80 percent of cases, Dravet syndrome is caused by defects in a gene required for the proper function of brain cells. Borderline SMEI (SMEB) and another type of infant-onset epilepsy called generalized epilepsy with febrile seizures plus (GEFS+) are caused by defects in the same gene. In GEFS+, febrile seizures may persist beyond age 5.



Is there any treatment?

Seizures in Dravet syndrome are difficult to control, but can be reduced by anticonvulsant drugs. A ketogenic diet, high in fats and low in carbohydrates, also may be beneficial.



What is the prognosis?

As children with Dravet syndrome get older, their decline in cognitive function stabilizes, and in many, it improves slightly. However, most teenagers with Dravet syndrome are dependent on caregivers. The degree of cognitive impairment appears to correlate with the frequency of seizures.



For more information please contact me at epilepsyhppresident@hotmail.com or go to Circle of Moms - Epilepsy Awareness 2009.  



Good Luck & Take Care,

Sincerely,

Tracey Alderson, Administrator, Epilepsy Awareness 2009

Elisa - posted on 11/04/2009

They could fin d a cause with my son until recently they are checking skin and muscle sample to see if it is a mitochondrial disorder because of his folic acid level and a number of other levels in his lumbar puncture. Something to ask?! Maybe.                                                                  Quoting Kelly:

Thanks for your reply, I just commented onyour post & will def check out your blog.
My baby has just turned 1, she is currently on Topomax & epilim, stil having 5 lots of clusters a day, its so dam frustrating, she isnt developing, all she cando is roll everywher,lol & has good head control. How is your wee girls development?? Honor has had spasms since 2wks of age, had an MRI, lumber puncture, bloods & urine & 3 EEGs but nothing to say whats causing it, EEG sed there was a lot of electrical activity in the brain. Honor tried Prednisolone (steroid) & she blew up like a balloon but they ddnt help, just made her very irritable. Would be great to hear form you again.
Cheers Kelly

Elisa - posted on 11/04/2009

They could fin d a cause with my son until recently they are checking skin and muscle sample to see if it is a mitochondrial disorder because of his folic acid level and a number of other levels in his lumbar puncture. Something to ask?! Maybe.                                                                  Quoting Kelly:

Thanks for your reply, I just commented onyour post & will def check out your blog.
My baby has just turned 1, she is currently on Topomax & epilim, stil having 5 lots of clusters a day, its so dam frustrating, she isnt developing, all she cando is roll everywher,lol & has good head control. How is your wee girls development?? Honor has had spasms since 2wks of age, had an MRI, lumber puncture, bloods & urine & 3 EEGs but nothing to say whats causing it, EEG sed there was a lot of electrical activity in the brain. Honor tried Prednisolone (steroid) & she blew up like a balloon but they ddnt help, just made her very irritable. Would be great to hear form you again.
Cheers Kelly

Elisa - posted on 11/04/2009

ACTH did horrible things to my son as well. He balooned out, was spilling sugar in his urine and it made his potassium levels drop that it put him in the hospital and we had to suppliment! Topomax may have played a factor with the potassium and it did not help to stop our sons seizures either.

Quoting Danielle:

My daughter is almost 2 and since she was about 4 months old she's been on Keppra and Topomax. She's still having infantile spasms (about one every other day or so) and I'm not sure if the decrease is because the meds are working or something else. We even went through a 6-week period that I had to give her shots everyday of a steroid called ACTH. The last week she was on it and the week following she was completely seizure-free but it's not something I would recommend. Her little body retained to much water that she could literally hardly bend at the waist enough to go in her carseat. It was miserable.

Elisa - posted on 11/04/2009

I know exactly how you feel. We are finally weaning our son off of Vigabatrine which has had the least amount of side effects. He has had horrible side effects and negative results on Topimax, Prednisolone and ACTH. They think that he might have a mitochondrial disorder and has been taking a form of folic acid called folinic acid. He has now been seizure free for over a month and we are hoping to keep it that way!
Did they find the cause? That may help with determining the next step. It is why none of the steroids worked for our son. Good Luck!
-Elisa

Savannah - posted on 11/04/2009

My baby is on Phenobarb, and it works great for her. She has eye rolling episodes every now and then, but for the most part does fine. They are gonna change her meds at 6 mnths of age to something else, but im not sure what.

Toni - posted on 11/01/2009

hey, im new at this, my baby boy is 5 mos , having seizures since 3 mos , were in the diagnostic faze with the neurologists right now , they dont think he has the hyperrhytmia of infantile spasms, but his myclonic seizures seeem to say otherwise. its difficult, right now were on klonopin (clonazepam) 2 x daily at 2.5ml. and pyrodoxine- vitamin B. They said its rare, but there is a form of epilepsy that is caused by Vitamin B deficency. so were giving him it for 4 weeks to see if he gets better... its all so hard to understand why it happens and everything.. hopefully one day we'll get the break we all pray for. good luck and take care!

Dana - posted on 09/13/2009

My daughter was diagnosed at 3 months old. She has been on Phenobarbitol, Keppra, ACTH Injections, Klonopin, Topamax, Vigabatrin and Depekene. The only thing that stopped her seizures 100% was the vigabatrin. but due to the eye damage after 6 months her neuro weened her off and of course they came back. Currently she is now on Topomax and Depekene. she is still having anywere from 5 - 15 seizures a day. She is two years old now and developmentally she is around a 2 months range. she has hardly any head control, does not sit up, does not use her hands......I wish you all the luck and send your family prayers. I hope you can find something that works!

Christina - posted on 09/11/2009

Hi! My son (Collin) is now 7 yrs old. He was having infantile spasms at 3 months old. We have had EEG's, PET Scans, MRI's & FMZ Scans. We pretty much lived at the Children's Hopsital in Detroit for his first year and 1/2. The medications that he was on were, Vigabatrin, Topamax, ACTH shot & The Keogentic Diet. We believe that the Keogentic Diet stopped the seizures. He will be seizure free for 6 years in December. Alot of prayers are the #1 key to have during this rough time. My husband & I had no idea what was going on when he was 3 months old. We couldn't understand why this was happenig to us and how we could help our son. The doctors in Detroit are awesome and the PT & OT therapy works wonders if you keep it up and try to fight and control the seizures as much as u can. Let me know if I can help answer or we can compare notes. Someone once told me when we were going through that rough time, that everytime your child smiles at you, it's giving you a "Miracle". God Bless....

Manda - posted on 09/10/2009

we too tried... Dilantin, Topamax, and Keppra... my son, as well, took ACTH shots.... and he is on the keto diet... he started infantil spasms around 5 months and having around 90 a day. Now, he is off the Dilantin, and weened off of the topamax and we finished the shots 2yrs ago or more. he has lil' head control, can not sit up. But, he is no longer a vegetable either. For the first time ever, he is seizure free-still medicated. And is attending 3k for disabled kids. Being a single, I've learned alot. Hope this helps you

Minie - posted on 09/09/2009

Publicar una respuesta!Yo ya he pasado por todo eso, muchos estudios y creeme que hasta ahora estoy contenta de ver que Maximiliano mi hijo ya no tiene espasmos..estoy realmente feliz por ello, ojala todo lo que tu niña se mejore...

Minie - posted on 09/09/2009

Publicar una respuesta!Yo asi estaba tardé muchisimo en que dieran resultado, pero ahora parece que se detuvieron las convulsiones infantiles, le doy Kepra, Rivotril, y Depakene que es acido valproico manana y noche..si tienes una duda mi mail es minec70@hotmail.com, mi niño tiene paralisis cerebral y es gemelo, su hermano esta bien....vivo en Mexico, Monterrey, Nuevo Leon

Jerilyn - posted on 09/05/2009

My son started having infantile spasms since he was 3 months old, he was put on vigabatrin right away and they stopped, unfortunately I am in Canada and I am not sure where you are, I know that this drug is not yet available in all countries even though it is very very effective at controlling infantile spasms. here is a link to some info on the drug http://en.wikipedia.org/wiki/Vigabatrin



It is very important to know that this drug can cause your little girl to loose her peripheral vision, we decided that this was the risk we would take since the seizures are causing brain damage.



As it has been over a year since we have seen an infantile spasm or any Hypsarrhythmia on the eegs we have weened the vigabatrin and started phenobarb to controll his other seizures. I wish you all the best of luck with your little girl.

Lauren - posted on 09/03/2009

My son is almost two and has been on Tegretol since 6 months of age. It works for him. Goodluck!!

Laura - posted on 08/27/2009

Mason is 2yrs old....he is currently on phenobarbital, keppra and clonapin....he is also on the ketogenic diet (has totally helped in cutting down the infantile spasms) ....also diastat as needed.......he used to have hundreds of spasms a day before ketogenic.....

Kelly - posted on 08/26/2009

Thanks for your reply, I just commented onyour post & will def check out your blog.

My baby has just turned 1, she is currently on Topomax & epilim, stil having 5 lots of clusters a day, its so dam frustrating, she isnt developing, all she cando is roll everywher,lol & has good head control. How is your wee girls development?? Honor has had spasms since 2wks of age, had an MRI, lumber puncture, bloods & urine & 3 EEGs but nothing to say whats causing it, EEG sed there was a lot of electrical activity in the brain. Honor tried Prednisolone (steroid) & she blew up like a balloon but they ddnt help, just made her very irritable. Would be great to hear form you again.

Cheers Kelly

Danielle - posted on 08/26/2009

My daughter is almost 2 and since she was about 4 months old she's been on Keppra and Topomax. She's still having infantile spasms (about one every other day or so) and I'm not sure if the decrease is because the meds are working or something else. We even went through a 6-week period that I had to give her shots everyday of a steroid called ACTH. The last week she was on it and the week following she was completely seizure-free but it's not something I would recommend. Her little body retained to much water that she could literally hardly bend at the waist enough to go in her carseat. It was miserable. Most recently, we've tried the Ketogenic Diet. It's a lot like the Atkins diet- HIGH fat, LOW carb, MODERATE proteins... it didn't work for her but I had done a lot of reading about it before committing to it and for many people it was literally the miracle they were looking for. I don't hear of many mom's whose kids have infantile spasms... in fact I've been looking for them! :) If you're interested, I have a blog about my daughter: http://londonsbridges.blogspot.com

I created it mostly to try and get moms and dads (or aunts, uncles, cousins, whoever) of kids with special needs and/or seizures to come together without any judgement and share what they are going through and share information about treatments they've tried. I've not had much luck getting people involved. Let me know if there's anything I can ever do for you!! I could recommend some books about that diet if you're interested. Let me know! :)