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Infantile Spasms... been there...

(46 Posts)
InternationalGirl Fri 03-Jun-05 22:56:55

I have had a few CATs from a comment I made on a recent thread and thought it might be better to have a discussion here as I now know there are others here who have experience with infantile spasms. Our daughter had infantile spasms and here is our story.

At 6 months she seemed very 'normal', would try to roll, had some strength, didn't seem out of the ordinary then at 7 1/2 months she starting having infantile spasms. Of course we didn't know what they were at the time and they just showed up out of the blue. We kept an eye on her for a couple of weeks wondering if this was just a 'one off' thing. Although they seemed to become more frequent after a few weeks and more 'intense' they didn't seem to hurt her (i.e. she didn't seem as though she was in pain) - just had this glazed look and the 'shrug'. The seizures came in clusters of 20-30, 2 or 3 times a day. They never could figure out why she got infantile spasms - just that they were there.

We contacted our GP who referred her up to the hospital paediatrician although we were in New Zealand at the time, on a public health system and had to 'get in line'. Unfortunately she was having the seizures for 2 months before she was seen by the paediatrican and they managed to cause so much damage she had no more strength or control than a 4 month old baby. She was 9 1/2 months old. She also slept a lot more than other children her age.

Paediatrician immediately admitted her to hospital for tests - we were in there a week while they did everything - blood, lumbar puncture, mri, eeg, sleep study, genetics - the whole bit. Then after a couple of days and looking at her results the neuro paed prescribed vigabatrin for her. Luckily on the lowest dose the seizures stopped but she still had global developmental delay. Then we went about getting her therapy. Husband and I were both working but husband stopped work in order to be there for her and basically be her therapist. We couldn't have somebody else looking after her - they wouldn't care for her in the same way a parent would. We had an OT come in once a week for an hour to see how she was doing and show hubby what exercises they should do to increase Taylor's strength. She was weaned off the vigabatrin just after age 2 1/2 and the seizures never came back.

She is now age appropriate in all her motor skills (in some ways above average), however communication and language are slow to develop. She has been diagnosed with autism and now this is where our target interest is - helping develop her language, communication and relationships. We just keep putting the info in and she is absorbing it, sometimes very slowly and other times surprisingly well. She is a great little artist - she is drawing the most amazing pictures for a 5 yr old. Her sister at age 5 was drawing heads with legs. Taylor will draw the whole face including eyebrows and teeth, arms with hands including fingers, legs, the flowers in the background and butterflies in the sky. Often if we draw a picture and think its done she will continue to add all the bits we've 'missed'. She is a funny little thing but she is a challenge. Mostly because her lack of communication has led to behavioural problems. She is so independent, she doesn't like to be helped and often if someone is trying to help her she will get mad but not be able to tell them to step back and let her do it. So she'll just throw herself on the ground. We are working primarily on her language and hope the behaviour will improve with more communication.

Husbands family has history of autism, ADHD, learning difficulties and so I think Taylor may have been susceptible anyway but perhaps the infantile spasms triggered it IYKWIM - they certainly put her behind anyway.

What's your story?

Bethron Fri 03-Jun-05 23:20:16

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InternationalGirl Fri 03-Jun-05 23:51:47

Unfortunately we put a lot more down to global developmental delay (GDD) than we should have. There were people suspecting autism when she was 2 1/2 and we still thought because of the global developmental delay she was just behind and would eventually catch up. She also had glue ear that wasn't corrected till she was almost 3 so thought that had some bearing on it but when she still wasn't coming right by 3 1/2 we began accepting the diagnosis and wanting it confirmed again.

I don't want to seem negative in any way but what I would say is don't necessarily put his delays all down to GDD. Especially if his delays in communication and concentration continue to go on. Continue to have him monitored and express any concerns to your medical professionals. Early intervention is so important now and there are many different therapies available to help.

He sounds like a lovely little boy and I'm so glad he is doing well now that the seizures have been controlled.

TheRealMrsF Fri 03-Jun-05 23:58:11

my input on this is taht leigh had a series of these at approx 18months and epilepsy was ruled out- only thing the paed could suggest was that his brain development was ahead of his body- and the electrical activity in the brain kid of 'short circuits'...found this very bizarre- would love to know if there is any truth in this- but gut feelin is that it seems 'right' as leigh is now dx with HFA/AS and def has an 'advanced mathematical brain'...if that makes sense...and has a 'large' head... he also goes very grey/white pre-meltdowns...very similar to during the spasms...so i wonder if for him at 18moths it was 'overload' that he couldn't deal with...whereas now we see the signs and take 'calming' action.

anniebear Sat 04-Jun-05 07:15:36

Ellie , 4 in Aug, had IS after having Meningitis at 8 months.

She was seizure free for two years on Nitrazepam and was weaned off between Jan-Mar this year....so far, nothing!! But we keep watching and waiting!!!!

She is behind with her development but suffered brain damage and Hydrocephalus also. But she is doing so much better than we were told, which was "If she survives, she will be severly brain damaged"

She is walking, running and stringing words together!

I remember the day we got told she had Epilepsy and I thought "we can deal with that"!! Little did we know she had quite a rare severe form.

But her seizures were under control quite quickly.

Obviously the outcome is much better if there is no underlying cause for the spasms

Bethron Sat 04-Jun-05 09:23:55

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InternationalGirl Sat 04-Jun-05 09:55:11

I've never done this before - I'm gonna try -

Epilepsy Action - Infantile Spasms page should be
here

InternationalGirl Sat 04-Jun-05 09:56:14

Wow! - it worked!!

Bethron Sat 04-Jun-05 09:57:31

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InternationalGirl Sat 04-Jun-05 16:06:21

Sorry I was out - had to go get DDs haircut because this week she tried to cut it herself!! and managed to cut off about 5 inches making it a little uneven on one side. Her lovely long hair is now sitting at about shoulder length. She's still cute though.

It was scary trying to link but now I'm going to try again...
This one is 'Contact a Family' for West Syndrome.
here

Pages Sat 04-Jun-05 19:42:11

Hi everyone, I too have a DS who has suffered from a form of epilepsy, and GDD. Will try and post more on here tomorrow. Unfortunately I am 7 months pg and anaemic, feeling crap, so now DS is in bed that's where I am heading!

Can I just ask as regards the GDD what age your children all walked/talked/crawled, etc/as applicable. My Ds has done very well in all areas in the last year in particular but is still not walking or talking at 2.8. He is only just developing the pincer grip.

anniebear Sat 04-Jun-05 20:25:34

Oh I know that the outcome of IS is usually poor but I have also read about some children who have gone on to do really well.

When looking on sites have read that the outcome is 'usually' better with no underlying cause.

I'm not saying that there will be no problems, just that child will stand a better chance long term.

But yes, I know how devastating it can be

InternationalGirl Sat 04-Jun-05 21:25:44

My dds greatest difficulties now are language and communication - diagnosed with autism - we think high functioning.

She walked at 18 months, motor skills developed quite well with intensive OT - husband did it mostly but he was consistent and dedicated and directed by a specialist.

While she was on the meds she was like a zombie - very vacant really. Once off the meds she was more alert. Didn't speak until about 4 1/2 after she had a summer therapist last summer come and work with her one on one. Language is still severely delayed but she is making progress.

Bethron Sun 05-Jun-05 08:52:33

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anniebear Sun 05-Jun-05 09:39:33

No Bethron, you weren't!!

I just didnt want anyone to think I didnt relise how devastating they can be

Pages Sun 05-Jun-05 21:44:58

Hi, would be really interested to know the sites you are talking about annibear.

My DS had a fit at 9 months that was probably a febrile convulsion associated with high temparature but whilst in hospital the neurologist expressed concerns about his development and that they had noticed he was having "absences". He only ever had the one major fit (though they put him in medication so who knows if there would have been more) but in hindsight we realised he had probably been having the absence seizures for several months, we just didn't know what they were. Unlike what some of you have described, there was no physical movement, jerking or any bodily sign (apart from when he had the major fit) but he would drift off and stop doing whatever he was doing, ie sucking his bottle for several seconds and just stare into space then just "come to" again. I had noticed he was a bit jumpy but just thought he had a strong startle response and we were aware something wasn't quite right but it just seemed like daydreaminess. Absences can be very hard to spot.

Anyway, he had an EEG and it was abnormal but not hypsarrithmic (whatever that means)and they put him on epilim. They said he was like a 5 month baby at 9 months but I am interested in what you all say about the fits causing the GDD, because they seemed to be suggesting that at first (the neorologist said at the time that DS had epileptic tendencies and he wouldnt have medicated him if his development had been okay) but it seemed that later they were starting to say that DS had GDD and the epilepsy was part of the whole picture.

Anyway, he came off the epilim and has remained fit free for a year nearly, his development has progressed a lot in the last year - he made virtually no progress while he was on the drug and was vacant, slept all the time, etc - but he is still behind in all areas.

From our persepective we feel sure that he was developing normally for the first 3-4 months of his life (there were no concerns at any of his checks) and he definitely suddenly became floppy and stopped trying to roll over, etc at around the time the absences must have started.

Sorry, that was really long winded!

Just interested in what you say about GDD with no underlying cause, anniebear, as we have had loads of tests, including full and detailed chromosome sweeps and they were all normal, plus there is no history of anything similar in either of our families. They can't find an underlying cause for the fits to have started or for the GDD.

I take your point IG about possible autism or other problems. I don't think at this stage DS is suspected of having autism. Although he is non-verbal he is very communicative in his own way and very affectionate, loves playing with both children and adults and makes good eye contact. Of course it is early days as he is only 2.8.

Sorry this is so long!

Pages Sun 05-Jun-05 21:47:23

By the way, I was shocked to read how long it took to get the help you needed, Bethron and IG...

Davros Sun 05-Jun-05 21:51:37

Has everyone seen this?

anniebear Sun 05-Jun-05 22:29:49

Pages

Are you talking about Infantile spasms/west syndrome?

I read that if a child with Infantile spasms has no underlying reasons to have it then they stand a better chance long term.

http://www.patient.co.uk/showdoc/40001755/

This says that ...... Cryptogenic form has good prognosis.(no underlying problems) Large proportion of symptomatic (underlying problems) type also suffers mental retardation...


This site

http://www.e-epilepsy.org.uk/pages/articles/show_article.cfm?id=30


Says the the 10-15% that have had apparently normal prior development have a good prognosis.

I have read this many times.

Hope that makes sense!

But I was talking about Infantile Spasms. I don't have much knowledge of other types of Epilepsy

Bethron Sun 05-Jun-05 23:19:28

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Pages Mon 06-Jun-05 14:17:14

Sorry, I didn't know that there was a difference between infantile spasms and epilepsy in infants generally. Although my DS had absence seizures (petit mal) as opposed to full seizures (grand mal) my understanding is that they can be just as damaging. Anyway, thanks for the websites annibear.

As for underlying cause, I am guessing you mean some syndrome or genetic condition? I am also interested in how you describe GDD International Girl, I take it you don't consider this an underlying condition but a product of the spasms. I don't quite get it because sometimes GDD is described as a condition in itself, like CP or DS (BIBIC describes it this way) and there is a suggestion that it often comes with intellectual impairment, i.e. mental retardation. Other people treat it as just a delay, implying that the child will catch up over time. Obviously I am hoping desparately that it will mean the latter for my DS!

Bethron Mon 06-Jun-05 17:31:31

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Bethron Mon 06-Jun-05 17:33:25

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InternationalGirl Mon 06-Jun-05 20:50:05

GDD as it was to us is probably as it is for most. DD was delayed in everything. At 10 months old she had no muscle tone, no babbling, lay her on the floor and she could not even lift her head up, wasn't using her hands to pick up anything - was really scary because we were told by the specialists that they didn't know if she would get any of her skills back.

Yes - we think the GDD was all because of the infantile spasms, mostly because at 6 months she did have all this - we have photos of her smiling then it took about 3 years to get her to smile for a photo again. She was even trying to roll. With OT all her motor skills developed and she is now average to above average - she will try things other kids might not because she has no fear.

Her main delays now are language and communication and these are now because of the autism which we feel she was already susceptible to but was perhaps triggered by the seizures.

Any seizures in a child are scary - just that infantile spasms are particularly known to be damaging. It would depend on the type of seizures your child was having as to whether they caused damage but apparently not all seizures are damaging. Also did the child have GDD before or after onset of seizures...

anniebear Mon 06-Jun-05 22:17:27

Pages........My Daughter had Meningitis at 8 moths of age which caused her to suffer brain damage and Hydrocephalus, then 6 months later she developed Infantile Spasms.

So her brain damage from the Meningitis was her underlying problem.

GDD can certainly be caused by seizures as I have read of quite a few child who's development takes off when the seizures were under control.

Ellie seemd to 'wake up' when her IS was under control, she changed overnight from being subdued to a babbling cooing happy little thing. But again, this was Infantile Spasms she was having. I dont really know too much about other forms of Epilepsy

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