Spastic Quadriplegia - high tone, seizures - Cerebral Palsy Message Board

VivG23 · 08-17-2007, 07:55 PM

I have a daughter who is almost 9 and she has severe spastic quadriplegia. She suffers from epilepsy (not well controlled) and has sleep apnoea (moderate) as well. Would like to hear from anyone who has a child with similar experiences that could tell me how they cope. She has very high tone so very hard to manage at times.

levi'smum · 08-17-2007, 10:22 PM

hello i have a son 2 and a half with spastic quad and epilepsy. it is hard levi my son has only just been diagnose this yr in april when he had his first seizure, his seizures are long and often dont stop unless medicated at the time he is on 3 medications at the moment and the seizures are still happening. my son is totally unmobile except he has only just started rolling. can u give me any advice for my child what has worked what hasnt for your daughter is older i would love to learn more..... meggie

VivG23 · 08-17-2007, 11:00 PM

Hi Meggie, Samantha has had seizures from birth and has tried many medications. Since she turned 7 her seizures have changed from small seizures to big seizures lasting half an hour and January this year she was fitting on and off for 4 hours. I was wondering if she would survive it. She spent a few days in hospital. Do you know what type of seizures he has? Samantha isn't mobile and unable to do anything unassisted. Samantha has mainly focal seizures where her face twitches and her eyes deviate. Samantha is on Lamictal, Epilim & Diazepam. What is Levi taking? We tried a treatment called Metabolic Therapy which was developed from memory in Russia. It's very expensive but worked wonders for Samantha. She used to have over 100 myoclonic seizures a day and was on 3 medications and nothing helped. We trialled this alternative therapy (doctors didn't believe in it) and her seizures dropped overnight after 6 weeks on it. We did 3 treatments which was $4,000 a treatment. By the end of it she was seizure free. It lasted for 3 years and then she started fitting again but at least we had 3 years with no seizures and no medications. Well I hope this has been useful information. Regards Viv

levi'smum · 08-18-2007, 04:52 AM

levi has seizures lasting usually 10mins but has had 2 that have been 2 hrs long. very scary to see ur child go through this. levi has his seizures in his sleep about 10mins after falling asleep his hand will twitch them his mouth. we have to give him medazolam to stop them. he was om tegrotol which didnt work them epilum was added but still no controll now he is on lamictal as well dont know if this will work??? how did you daughter end up with cp??? levi was 9 days over due and i had a difficult labour (long story) but people didnt do their job properly and here i am my little boy has lost the life he should b living ill tell u more if u want to know??? can ur daughter speak?? levi cant well at the moment but babbles sounds ( he knows what he is saying) please tell me more about ur daughter i dont know anyone with a child like levi and would love to know more thanks hope to hear from you soon i have so much to talk about ....meggie

VivG23 · 08-18-2007, 07:08 AM

Samantha was a healthy baby until something went terribly wrong at the birth. We are suing the hospital and we have been waiting 8.5 years and we finally have a date for mediation. I'm very scared that they won't admit to being liable but I can only hope a good outcome will happen. Unfortunately because we are suing I signed a document saying I wouldn't talk to anyone about the delivery as it would impact on her settlement (if any). I would love to hear your story so I look forward to your reply. Samantha is unable to speak. At almost 9 years of age she only makes baby sounds but she has the best laugh and she's very clever as she knows what's going on around her even if she can't speak. I can ask her questions and she'll nod or shake her head and we are trialling ways of getting her to communicate using a pictograph book with symbols. I point to them and ask her if that is the right symbol and she nods or shakes her head. She also has a new headrest for her wheelchair which has a switch adapted that she can turn her head to the left to activate a computer or device. We are in the early stages of that and I'm looking forward to seeing her improve and hopefully be able to call out mum through a computer. That would be music to my ears. Well I'll wait to hear from you and I'm sure we'll have many stories to share with each other.