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3 Year Old Newly Diagnosed with Tuberous Sclerosis

My son will be three later this month and was diagnosed over the holidays with tuberous sclerosis. He began having infantile spasms at 9months, stopped having spasms for a few months and then progressed to very mild seizures. This fall his once mild seizures became very strong (tonic clonic) and went from 1-2 a day to 6-7 or seven. At that time we decided to medicate him and he began a low dose of generic keppra. His seizures were controlled for three weeks before they slowly started to creep back in. We have increased his dose over the last several months gradually from 1.5 ml, 2x a day to 5ml, 2x a day with little impact to the seizures. In fact, I almost feel like the higher his meds, the more seizures he had. His behavioral issues are out of control. My once sweet son is screaming, throwing things and totally out of it. I'm not exaggerating when I say the side effects are unbearable. 

Obviously this diagnosis is devasting and with no family history, my husband and I are having to do an immense of amount of research fast. Dealing with the confusion and sadness is so hard and we almost don't know where to begin. I'd love to connect with other parents of children with tuberous sclerosis to learn more about experience with medication, Levetiracetam specifically, seizure frequency, what's worked, what hasn't. Is your childa attending preschool? What delays are you dealing with and what therapies are helping. We're looking at the tuberous sclerosis specialty group in Boston. Has anyone worked with them?

Thanks so much. Just having this forum as a resource - to help us all connect - is such a blessing. 

 

 

Comments

Re: 3 Year Old Newly Diagnosed with Tuberous Sclerosis

Hi

 Really sorry to hear your news. Our little one is almost six. He started with infantile spasms at 9 months as well but we were lucky to have him diagnosed then. He was put on Vigabatrin and they stopped straight away. He is still on this but we had to add Epilim.

I have just joined the forum as I have a google alert for TSC and saw your post. We are based in the UK but very happy to come back to you if you have any questions.

 A good online resource is http://community.tuberous-sclerosis.org/index.php . You can search on the past threads and there is loads of info.

 PM me if I can help.

Adrian