Cerebral Palsy with Infantile Spasm attacks

Hello all, i have a 4-yr old son with CP and he's having a daily Infantile spasm/seizure attacks especially before he sleeps and after. Does anyone here have any recomendation on a possible treatment that can help us out?

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You must be under a paediatrician for the infantile spasms. What do they say about treatment? Are they fits and do you have medication?

Elliot often does a few myoclonic jerks when he wakes up but is not fully awake but they are not fits but something babies often do but grow out of. We think el will grow out of them eventually.

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Hello ElliotsNanna,
Did your pediatrician mention that he will outgrow the myoclonic jerks?
My daughter was getting them too and she is now on anti epileptic because her neurologist mentioned that these jerks impact development.

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We've never discussed it with the paed but will mention it this week to his neuro. They are actually not abnormal and even adults have occassional jerks. He only gets a couple if he wakes up in the night and is half in and out of sleep. He doesnt get them in the morning or when he is dropping off and his development is fine for a CP child. He has a retained startle reflex and I believe the jerks originate in the same part of the brain so we would not consider medicating such a minor problem. Myoclonic jerks are not considered epileptic activity, and we know several children who have eventually outgrown them. He has had 2 EEGs and neither showed anything up. This was because of vacant episodes between 6 months and 10 month of age but he outgrew those naturally.

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hi superwoman ;-) !!
as PT i was many times with babies and kids to the neurologist's check-up: it is very helpful and of high importance
to show your son's neurologist a video of his seizures. maybe she has to change medicine, or dosage, maybe not - but
when there are daily spasms you have to get specific advice. there are many medicaments that help control seizures.
good luck

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Hi ElliotsNanna, thanks for your reply. His neuro actually specied his seizures as myoclonic but i checked out youtube and his signs were actually very similar to Infantile spasms. Not very sure how both differ but he had a maintenance valproic acid before but we eventually stopped it since i don't see any progress to his attacks. By the way, what do you mean by "FITS"?

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Hi rutiphysio, thanks for the kind advise. We did show his video to 2 neuros when he was about 1 yr old and nobody mentioned that it was infantile spasms. Initially, they gave him phenobarbital, which worsen his attacks and later changed it to valproic, and still nothing happens. I'm thinking of changing neuro and let him/her see my son's latest video. I'm hesitant though because of our experience with the previous neuros.

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My daughter had these infantile spasms - you should definitely video them for the doctor (this made me cry when I had to do this, I understand it can be hard). But it does make it easier for the doctors. We showed them the videos and then they did an EEG on G and following that they decided that she was having the spasms (or seizures - but I don't like that word). From there the doctors gave us some pretty heavy steroid treatment, but it did help and so far we have been able to keep them away.

As your child is older (my daughter was 7 months when she was having her spasms) there are other things you can try such as the MAD diet - modified Atkins diet. Apparently (and I am not 100% on this) reducing the carbohydrates it helps reduce the spasms. But check with your doctor first! There are other alternatives too to help, but I am not sure about them myself so don't want to recommend them. Have you tried a neurological chiropractor? I highly recommend that. We see a chiro regularly to help keep G in alignment. Ours also recommended magnesium, but see what yours recommends for your child.

Good luck - the spasms can be scary, but with good doctors your son will come out on the right side.

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My son will be 3 Saturday and he started phenobarbital at 4 days old for myoclonic seizures due to stoke in utero. he was given many meds in addition to phenobarbital, EEG's, MRI's, etc. I finally went to another neurologist who specializes in hard to manage seizures. We weaned him off phenobarbital (which took about 7 weeks,) and increased the new medicine Trileptal. The entire process started in August 2011 and his last seizure was Oct. 29, 2011. We are now weaning off Trileptal in hopes that he's grown out of the seizures! I would definitely record the seizures, it helps the neurologist a lot. Good luck to you! I know how hard it is not to be able to help!

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hi, try to find the most recommended pediatric neurologist - there are always some who do concentrate on epilepsy-control
(but all of them take it very seriously)- most i know are women ;-)))
it is very important to do all the adding and reducing of medicament under control.
i would not start or stop medi by your own decision, even if it looks that your kid does not respond well. same about diet - it
can be also harmful, especially as long as their is no clear diagnosis.
very important to take ALL your videos that you took from your son, organize it nicely, so you can show the neuro the clip and tell her which medi DS took at the same time.
it is very valuable that you have the clips, and very informative that you show her all of them - also (esp maybe) "older"-ones.
*** there is no reason to try methods that somebody recommends to you as successful - you are not sure if it is epilepsy or not, if yes, we have to know which kind .
(i hope it's not - but no guessing....)
today it is much easier to find recommended doctors in www - even if she is not close to your place, it is worthwhile!
good luck

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Yes you really need to find a neurologist who you trust and certainly not change diet or medication without specialist advice.

Fits are siezures.

You can get benign (meaning harmless) myoclonic jerks, (also called hypnic jerks) which are not siezure activity and which is that feeling we occassional get when we drop off to sleep and wake with a jerk as thought we are falling. It is common in small babies and is quickly outgrown, but I think with cerebral palsy a lot of these things like reflexes are outgrown much more slowly and can be retained. It occurs when you are half asleep and half awake. If we cuddle him very tight they stop because he feels secure and when he wakes properly they stop with no after effects



Myoclonic epilepsy is epilepsy and the siezures take on a muscle jerking and the EEG will show spiking activity. It is confusing, but we are sure Elliots is not epilepsy in origin and something he will grow out of in time.

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Hi Nikkstar, thanks for your wonderful inputs. It's sad to know that our precious ones suffer from all of these. By the way, i'm curious about steroid treatment. Is that something injectable? Not heard of that kind of treatment in my area. I'm here in the Philippines and maybe treatment here is far way beyond from your country guys :(
In fact, my son already had undergone EEG 3-times since he was 3 mo.-old and we've gone to 2 different neuros and showed them a sample videos of his attacks but none of them mentioned about infantile spasm. I did a personal effort on searching thru youtube and google about the types of seizures and can tell from the video that his attacks are 101% similar to those on the sample videos of infantile spasms thru the net.

I'm gonna search about MAD diet and neurological chiropractor as well. I was so hopeless for the past 4 yrs but thanks to Inspire, it gives me a new hope

God Bless to all of us!

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Hi bhwhaley, thank you for your thoughts. My son's first neuro gave us phenobarbital when he was 4 mo.-old, but we're horrified on the results as his seizures worsen, and not to exaggerate he had over 100 strikes per attack. We got back to the neuro and reported it but her reaction was not something you would want to hear. Hence, we went to a different neuro and gave us topamax but it didn't deliver good results as well.

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Hi rutiphysio, thanks for your advise. They do make sense to me. We're looking forward to heading back to see a neuro as soon as the videos are ready.
God Bless you.

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Hi i am new on here my little one is 16 mths old now and has cp and at about 9 mths we noticed these spells usually after he woke up. Very scary. He actually had one when we were at a visit with his developmental dr and she recorded and said she thought they were infantile spasms. She took the video and showed his neuro and were admitted and they did an eg and confirmed infantil spasms. Our neuro told us about the steroid that are injectable and he didnt reccomend that to try first he said there was a new med that had been in the us several yrs it is called vigabatrin or sabril. It is delivered to our house cause there is only one co mpany that has it. So far it has helped. Hope this helps

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