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  • Spastic Quadriplegia - high tone, seizures

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    Old 08-17-2007, 07:55 PM   #1
    VivG23
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    Spastic Quadriplegia - high tone, seizures

    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.

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    Old 08-17-2007, 10:22 PM   #2
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    Re: Spastic Quadriplegia - high tone, seizures

    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
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    Old 08-17-2007, 11:00 PM   #3
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    Spastic Quadriplegia - high tone, seizures

    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

    Last edited by VivG23; 08-18-2007 at 07:12 PM.

     
    Old 08-18-2007, 04:52 AM   #4
    levi'smum
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    Re: Spastic Quadriplegia - high tone, seizures

    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
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    Old 08-18-2007, 07:08 AM   #5
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    Spastic Quadriplegia - high tone, seizures

    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.

     
    Old 08-18-2007, 04:47 PM   #6
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    Re: Spastic Quadriplegia - high tone, seizures

    we also r taking the hospital to court so seeing every one can read this i think i better not talk about it either.
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    Old 08-18-2007, 07:06 PM   #7
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    Spastic Quadriplegia - high tone, seizures

    You can tell I'm a newbie!

     
    Old 08-18-2007, 10:46 PM   #8
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    Re: Spastic Quadriplegia - high tone, seizures

    our lawyer told us that our case wont b settled till levi is 16 or over which is pretty upsetting because there is so much that he need that we cant afford. i hope you get the out come u are looking for.

    how helpfull are the respourses you have in your area(ot physio speech??) i live in a fairly small town and we have been without a physio for almost a year so i find myself doing it all. i also have a 6 month old daughter so its hard to find time to do everything. as you know having a child with spastic qaud cp is more then a full time job in itself. levi can eat oraly but only pureed foods and still drinks from a bottle not allowed to drink from a cup for he aspirates easily.

    i am not really happy with the services here for i only see them once in a blue moon so like i said i find myself juggling everything,and looking after my daughter as well. i have excepted levis condition but i found it quite hard when my daughter was born. she was born at a different hospital but that thought always crossed my mind that something might go wrong again. and the hardest moments were when she over took levi and i felt i dont know some what guilty and sad for him. but he loves her to bits so i dont really think he notices that he is different.

    i dont know what hope we have for the future of levis development no one has really told us, were you told how your daughter would develop???

    hear from you soon ....meggie
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    Old 08-21-2007, 05:31 PM   #9
    VivG23
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    Spastic Quadriplegia - high tone, seizures

    WOW that's a long time to wait. Why so long? I'm sure it won't take that long. When Levi is around 9-10 you pretty much know how severe his disability is. If he hasn't achieved certain things by then he probably never will.

    The resources are ok. We used to live in Melbourne and we found schools were much better than in Sydney. Samantha is on a waiting list to go to a particular school. How can they have a waitiing list for a child with special needs I'll never understand.

    Samantha drank from a baby bottle until she was 5. It was so much easier for her to drink from a bottle than a flexi-cup. It's a cup that has a cut out so her nose doesn't hit the rim of the cup. Samantha used to drink from a haberman feeder which took 1 hour to give her 100mls of milk. Oh I'm so glad those days are over. She needs all her food pureed and her drinks thickened. If you thicken his drinks it should make his chances of aspirating less. Samantha stopped aspirating with bad chest infections by the age of 2. So before Samantha started school I started practising her drinking from a cup as I thought 5 and drinking from a baby bottle was getting a bit much. So with lots of practice she now drinks really well. Patience and persistence is what you need. Sometimes easier said than done though!

    Last edited by VivG23; 08-21-2007 at 05:32 PM.

     
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