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Original poster

Infantile spasms anyone?

13 replies

beckyboo232 · 03/02/2012 18:11

Hi my nephew has just been diagnosed with infantile spasms, bloody scary he's in hospital. Anyone else?

OP posts:
izzie123 · 04/02/2012 15:16

Sorry to hear this. My DS had infantile spams. Make sure that he receives the right support. There are different causes for infantile spasms and depending on the cause different medications are recommended. If it is Tuberous Sclerosis, he should be on vigabatrin if it isn't he should be on steroids. He needs a whole range of tests to find out so make sure he has a CT scan and/or MRI. The key is to control the IS as quickly as possible as they affect the brain. So you really need rapid action and knowledgable health professionals. I am afraid IS are not good news so they will need all your support. Wishing your family the best at this difficult time.

Sandhills · 04/02/2012 15:24

I agree with what Izzie said, my dd was diagnosed with west syndrome (infantile spasms) 10 years ago.It is essential that they control the seizures quickly. Life for your nephew and his parents will change significantly, they will need all the support and love you can give.

Original poster
beckyboo232 · 05/02/2012 14:37

Thank you so much for replying. He has had MRI and ct scans which have shown significant brain issues. He has started a drug regime including vigbatrin but is do far still having 10 seizures a day. Apparently he also cannot see and is paralysed down the right side. He's do small it doesn't seem fair we are all taking shifts at the hospital it just seems unbelievable.......

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zzzzz · 05/02/2012 15:15

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Message withdrawn at poster's request.

Original poster
beckyboo232 · 05/02/2012 18:30

Thank you so much for replying. Yes they are saying he had a bleed in the brain in utero and there has been significant damage caused. Does anyone know how long it may take for the drugs to take effect?

OP posts:
slowburner · 05/02/2012 19:08

My DD was at high risk due to having oxygen starvation at birth, there are a few similarities between HIE and brain bleeds. Although we avoided IS I know many parents who have been through these, several have had them controlled by steroids, nasty side effects but quick to take effect and stop the IS.

There is no getting away from it that they are bad bad news, but the children I know of with them have eventually recovered function once they are under control, it's just how quickly they are stopped which seems to be key.

You don't say how old your nephew is? Your family will need buckets of support, hospital is a lonely place with a sick child (we were admitted for a few hours today) and clean clothes, normal food, a coffee and a chat about the world outside, photographs and videos, even a text just asking how they are, not just how your nephew is. Also I could never leave my DD, when DH was at work and I wanted to shower I was desperate for anyone to come in for just twenty min to allow me to wash!

I hope that he is home soon

Original poster
beckyboo232 · 05/02/2012 19:54

Thank you for the message. My own son was born very prem so I unfortunately know too well how awful hospital is. All the advice/information just seems so confusing right now. They keep talking about so many issues and long term consequences.....just terrifying. Apparently steroid ACTH is not a option due to the risks associated with brain bleeding so we are just gonna have to wait and see how the drugs work. My nephew is 10 months old and gp diagnosed various things before the is diagnosis was made by a specialist. Thanks again everyone means so much people take the time to reply

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zzzzz · 05/02/2012 20:52

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Original poster
beckyboo232 · 06/02/2012 07:30

Thank you zzzz I will look all of those up this morning I just can't seem to find any clear information anywhere. Am heading to the hospital this morning

OP posts:
izzie123 · 06/02/2012 10:39

I know it's a lot to take in. Just take it one day at a time. Is he maxed out on vigabatrin? Some paeds go up slowly until they reach a dose when the IS stop, others go straight to the max dose. Ours paed's view was that these had to be stopped so he went straight to the max dose (150mg/kg). It was very effective, stopped the IS. My DS who was 9 months old then slept for 3 days only waking up for milk feeds. It knocked him out. Do research medications and question the health professionals and make sure they have advice from a neurologist with relevant experience. When it comes to epilepsy there are few hard and fast rules, it's often trial and error and this is where you really need someone experienced.

Original poster
beckyboo232 · 06/02/2012 18:40

Hi thanks I am trying to gather as much information as possible. Yes he is maxed out on vig. In a attempt to stop the seizures sooner rather than wait but so far it's not working. They are now talking about stopping it and trying something else as time is of the essence the dr is great and consulting with a specialist, they are talking about transferring him to gosh or st Thomas' once he has stabilised

OP posts:
zzzzz · 06/02/2012 19:21

This reply has been deleted

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Original poster
beckyboo232 · 07/02/2012 07:33

Thank you zzzzz I will call this morning. He has had a bad night Sad appreciate the thoughts and prayers

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