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?