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Rocking4Epilepsy
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« on: December 04, 2006, 04:55:52 AM »

Lets all do a fast update on our children...

Sex of child?
Age of child?
Medication taken?
How long sz free?
VNS or NO?

Please share what you would like to please update us on how your child is doing?

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Fay
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« Reply #1 on: December 04, 2006, 07:58:11 AM »

Scott is a 17 1/2 year old male so not quite a child but he IS under age 18....
Has been seizure free since Jan. 20, 2005
Has been medication free since August 3, 2005
had the VNS implanted in Feb. 2000, generator only replaced in April 2003 and had the VNS removed Oct. 6. 2006. The coils remain implanted so is still wrapped around the vagus nerve.
He is still having asthma and GI problems since he had the VNS removed. On a good note his blood pressure is staying perfectly normal now and he hasn't experienced any Cerebral Hypoxia attacks or needed oxygen since he came home from the hospital. He has also grown 4 1/2 inches and has gained 4 pounds since then and is now in full blown puberty- without a doubt! He had only grown less than 1 inch and had only gained 9 ounces (lost 21 pounds and had to have a g-tube placed). He totally stopped growing after the VNS was implanted. I find it very interesting that he is now growing again since it was removed.
Overall Scott is doing great in spite of the GI and asthma problems. He is also sick right now which hasn't helped matters.
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crazedayz
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« Reply #2 on: January 23, 2007, 10:54:07 AM »

hello there. I am new to the board. My daughter is 12 years old. She has a rare chromosome condition called IDIC15. She has the whole range of seizures and the only one that is fully controlled right now are the grand mals. We are taking part in the 06 VNS study over here in the UK, and are waiting to hear whether they are going to implant or change her meds. She is currently taking Clonazepam, Keppra and Sodium Valproate.
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Pamela - Mummy to Olivia

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« Reply #3 on: January 23, 2007, 11:11:45 AM »

Hello Pam and welcome to the board.
There's a great group of people here and lots to learn about the VNS, seizures, depression and other stuff too. Please make yourself at home and if you have any questions, please ask. We will help you any way we can.
Olivia is pretty and looks so happy. It never fails to amaze me how most of the kids who have severe seizure disorders seem so normal. And they all seem so happy in spite of the hell they've gone through.
Take care and please keep us posted.
I'm curious and hope that you don't mind sharing info about Olivia but how did you find out about the Chrom. IDIC15? Thanks!
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crazedayz
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« Reply #4 on: January 24, 2007, 03:16:43 AM »

Olivia has severe learning disabilities along with challenging behaviour, hypotonia, Autism and auditory processing disorder. She went through a battery of tests from the age of 9 months as she was very delayed in reaching her 'milestones'. One of the tests was a chromosome test, which coincidently was the only one that came back abnormal. It wasnt until 2 years ago that any of her EEG's showed any seizure activity even though right from birth she had what seemed like breath holding. Over the years the whole range of seizures have manifested themselves. The first EEG to show anything up showed right temporal activity and then 6 months later another one was done and it showed seizure activity firing from all over the place!
Olivia has the body of a young lady but the mental age of a preschooler. We are lucky in some respects that she doesnt know she is any different from anyone else...in fact there are times when she doesnt even know she is Olivia and is convinced she is Scooby Doo, Pikachu and various other characters in her head! She cannot tell us that she is about to have a seizure, or in fact that she has had one, so if they are missed by anyone, it is usually the post seizure behaviours that are witnessed.
You can read about her chromosome disorder at www.idic15.org and her behavioural disorder at www.pdacontact.org.uk
She is a very complex young lady with very complex needs. The reason I chose to show you this particular picture is because she very rarely smiles like this, let alone look in the direction of the camera!
Looking forward to learning more about you all,
Pamela
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Pamela - Mummy to Olivia

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« Reply #5 on: January 24, 2007, 05:28:15 AM »

:Welcome:  Pamala

Thank you for sharing your daughters history.  I cannot even begin to imagine the challanges you have had to deal with in raising a child with so many difficulties!  God bless you!

This is a wonderful, caring, group of fine folks here.  And lots of personal experiances with VNS are posted here.  Fay is our resident Ketogenic diet coach so if you have any questions about the diet, she's the one.  

Even though we have a small parents group, they are kind and very understanding as most of them also have children with multi disabilities.  
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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« Reply #6 on: January 24, 2007, 06:21:15 PM »

Yes, Frances. Thank you very much for answering my questions and for explaining Olivia to us. You have been through the ringer too! Def NOT fun by any means.
I feel very blessed because the ketogenic diet has been our miracle so far. We are in the first stage of weaning off the diet now- a 2.5:1 ratio and will go down to the 2:1 ratio in March. Scott has been totally seizure free since Jan.20, 2005 and totally medication free since August 3, 2005. I feel so darn guilty because so many other parents and kids are still having seizures and i wished they had the same miracle i have. This is our 2nd time on it and the 1st time on the diet it took over 1 1/2 years to get him totally seizure free and almost 1 1/2 years to get him off of everything but 1/2 of an Ativan tablet when an illegal wood dump near our home caught fire causing a severe asthma attack we couldn't control without daily high doses of steroids. The steroids threw him out of ketosis and then into nonstop seizures. Our keto team consulted with John Hopkins who in turn took over his care. They tried to adjust the diet and the meds but nothing worked so after 3 1/2 years on the diet we had to come off. Those 3 1/2 years were totally wasted because of that fire. BUT we did our ketogenic diet miracle so I am extremely thankful we got to try the diet again.
Scott's severe behavior problems and most of his autism behaviors dissapeared with the seizures and especially with the meds this time on the diet (odd that it didn't change the 1st time we were on the diet though). He IS mildly autistic but we thought for years he was borderline moderate to severe. Now you really have to look for the behaviors to see them as they are mild. He will still tune people out and totally shut down and withdraw into himself when he feels overwelmed or too many people coming over to our house at once (like holidays we have to stagger the times that people come over so they don't all arive at the same time) or a waiting room full of strangers with a TV on too and he still sometimes prefers to just be by himself to watch a TV that is showing nothing but static but not nearly as often as he used to. And most of the time he's easy to calm down and as long as we don't talk to him or allow anyone else to, he's ok. He's been known to try to sit directly behind me (he thinks he dissapears) or try to get as close as he can to me and as long as I don't move or talk to him, he can calm himself down by rubbing his fingers together if I'm not around or rubbing my jeans pocket (have NO idea why he likes to rub the edge of my right front jeans pockets but he does).
Please keep us posted with how Olivia does now that the VNS is turned off. Hopefully it wasn't on long enough to cause problems later.
Birdbomb is right. If you don't plan on turning it back on, you might want to consider having everything removed as soon as you can. Scott's VNS was implanted in Feb 2000, the generator only was replaced in 2003 and he just had it removed in Oct 2006. Scott's lead wires were imbedded into his neck muscles because of all the scar tissue and his generator was imbedded into his chest muscle so they had to remove muscle tissue from both his neck and his chest to remove the wires and the generator but had to leave the coils implanted cause he couldn't see them and was worried he'd accidentally cut the nerve or cause more nerve damage than we already have. The VNS wires couldn't move with his neck and it was pulling so tight that his vagus nerve was actually pulled out of the muscle sheath. Our Neurosurgeon told me we were lucky he didn't worse problems than he had and were extremely lucky the pulling hadn't ripped his vagus nerve in half. We are extremely thankful he was willing and able to remove it when he did.
I do hope to "talk" to you more here on the board and hope that you will keep us posted with Olivia.
 
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crazedayz
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« Reply #7 on: January 25, 2007, 08:05:24 AM »

Thank you for the welcome....I think you have us muddled with someone else though. Olivia has not had the VNS implant yet. We are still in the early stages of a study that is being done from Guy's Hospital in London England. She is a perfect candidate for the VNS though as she ticks all the right boxes. This week her seizures have really broken through with the appearence of her head drops again, which we had fairly well controlled. Her teachers have written this week, that although they dont think they have seen any seizure activity at school, all her teachers are concerned that she has been particularly wobbly and 'switched off'. Taking alot longer to do any of the task that have been asked of her. They have definately witness post seizure behaviours. My concerns now are that she is having constant clusters and not enough time to recover before the next one comes along. She has been a little 'demon' at home, into everything and not able to settle at anything...even a scooby doo dvd hasn't worked! I am keeping a very strict seizure diary for the study and will speak to her pediatrician and neurologist about my feelings I think.  :wacko:  
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Pamela - Mummy to Olivia

Rocking4Epilepsy
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« Reply #8 on: January 27, 2007, 01:08:43 PM »

Hi Pamela

Want to say hi and welcome to the forum.
Glad you found us. :)

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MOMof2
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« Reply #9 on: September 06, 2007, 06:55:16 PM »

:huh:  I can't even remember when the last time I posted--life is just soo busy.

My son is 11 and has CP,asthma,low immuine system and Drop Attack Seizures.

We were informed about 2 years ago that he was a canidate for the VNS implant and we opted NOT to have that.

Durning our recent unfortunate hospital stays for Pneumonia he was having many of his seizures and a resident Neuorologist (not our own) tried Kolinipin (sorry not sure if I spelled that right) along with our other meds.(Keppra & Lamactal). He has now went to having 20 plus seizures a day to 1 or NO seizures a day(woo hoo).

I hope that everyone can find the right method of meds. or devices to help them have little to no seizures..have faith and keep your hopes alive because one day for sure you will find your answer.

 
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Bernard
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« Reply #10 on: September 07, 2007, 12:27:39 AM »

Fantastic news on the Klonopin, MOMof2.  :)  Recent research shows that drug resistant epilepsy may be a misnomer/myth.
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