Developmentally Disabled by AEDS-BBC Story.

[Zoe]

I have hung on to this BBC story, which was done in 1999 because I think this continues to happen to many people. The drugs affected me so badly, I decided to live with uncontrolled seizures rather than the mental and emotional impairment from drug side effects. This article points to the need to be vigilant in monitoring drugs and their side effects when we take them and to act at the first sign of a serious problem. Many problems docs were attributing to my strokes or to "mental illness" disappeared when I stopped using the AEDs.
Zoe


"Health: Epilepsy drugs trapped man in childhood

They had diagnosed 31-year-old Nick Pierce as epileptic when he was 14 months old.

He was put on a cocktail of drugs to control the condition and tests led to Mr Pierce being classed as mentally disabled.

However, it seems he had merely suffered an extreme reaction to the drugs and since doctors ended the prescription has been learning quickly. "

---------------
Full Story:
http://news.bbc.co.uk/2/hi/health/435541.stm

 

[RobinN]

Zoe, I do believe this as well.
It is rather scary as we don't quite have a voice in the matter. Were you able to make your doctors aware of your situation, and take notice? Or were you seen as odd for going off your meds.?
I am told that my daughter is taking a very small dose at this time, and I am thinking, yes... but it is causing problems. How is that okay?

 

[Bernard]

Ranman posted a personal story on the same theme about his sister: Over medication at an early age

 

[execwife2002]

I never heard of Epilim. My sons doctor has never said anything about that med.
Marian

 

[POSITIVEPERSON]

Zoe and I have chosen to go on homeopathy because my body is so senstive to the meds. When I went to the natupath this year , she found me super senstive to the herbs and vitamins. She listened ,more than I can say for the epileptolgists I have gone too in Canada, NYC, Arizona. I have always needed lower doses than most pple ,but not every Dr listened. Which is truly sad !!!!!!!! But you know what ,its for the best that I am off meds !!!!!!!!!!!!!!
Wishing you a sz free life!!!!!!
Riva

 

[Bernard]

Marian, Epilim is a different brand name for sodium valproate (more commonly known as Depakote in the USA).

 

[Zoe]

No my drs never understood nor did they care. One neurologist told me she didn't care if the dilantin toxicity would damage my kidneys, as her only concern was stopping my seizures.
I also saw the post by Ranman on the phenobarb. I didn't respond as it brought back some terrible memories. In Denver I worked as a waitress. One of my co-workers had CP and lived in a group home for "retarded" adults. On Sunday nights the group home "parents" would bring a number of their residents in for pie and milk. I often got to wait on them. On those nights I would go home almost in tears. The group home owner had explained to me that all of these "retarded" adults were on phenobarb for their seizures. Well, I didn't see one person in the group who I could honestly think was developmentally disabled. What I saw, was a group of adults who had been drugged into a stupor every day for most of their lives, just like the man in the BBC story. To me, this is a crime against humanity, it is criminal.

 

[POSITIVEPERSON]

Zoe I totally agree with you !!!!!!!!!!!!

You will love Oregon!!!!!!!! PPLe think and feel like us!!!!!!!!

Riva

 

[RobinN]

Several controlled studies have shown that long-term anticonvulsant treatment decreases blood levels of biotin.1, 2, 3, 4 In children, a deficiency of biotin can lead to withdrawn behavior and a delay in mental development. Adults with low biotin levels might experience a loss of appetite, feelings of discomfort or uneasiness, mental depression, or hallucinations. To avoid side effects, individuals taking anticonvulsants should supplement with biotin either alone or as part of a multivitamin.

http://www.svcmc.org/112867.cfm

I am going to take a list of issues in with me the next time I visit the Neuro

 

[RobinN]

Several studies have shown that multiple anticonvulsant therapy reduces blood levels of folic acid and dramatically increases homocysteine levels.12, 13, 14 Homocysteine, a potential marker for folic acid deficiency, is a compound used experimentally to induce seizures and is associated with atherosclerosis. Carbamazepine alone has also been shown to reduce blood levels of folic acid.15

One well-controlled study showed that adding folic acid to multiple anticonvulsant therapy resulted in reduced seizure frequency.19 In addition, three infants with seizures who were unresponsive to medication experienced immediate relief following supplementation with the active form of folic acid.20

One controlled study revealed that taking anticonvulsant drugs dramatically reduces blood levels of vitamin B6.27 A nutritional deficiency of vitamin B6 can lead to an increase in homocysteine blood levels, which has been associated with atherosclerosis. Vitamin B6 deficiency is also associated with symptoms such as dizziness, fatigue, mental depression, and seizures. On the other hand, supplementation with large amounts of vitamin B6 (80-200 mg per day) has been reported to reduce blood levels of some anticonvulsant drugs, which could theoretically trigger seizures. People taking multiple anticonvulsant drugs should discuss with their doctor whether supplementing with vitamin B6 is advisable.

http*://www.svcmc.org/112867.cfm

http://webcache.googleusercontent.c...cleID=hn-10000175&hl=en&gl=us&strip=1&vwsrc=0

I know this is being shared all over this site, but please explain why it is not being discussed in the doctors office?
I am appalled that it is not suggested nor are the blood tests being looked at to balance the needs of my child.
If I don't give the AED then I am looked upon as a bad parent and one that is unwilling to work with traditional medicine.

I guess I need to take this rant to another part of the house, I guess I am going to be shussed in a minute.

 

[brain]

Epilim is also known by these names as well:

Valproic Acid and Derivatives
( Sodium Valproate , Divalproex Sodium )
Class: Anticonvulsant Sodium Valproate

Trade Names:
Depakene
- Capsules 250 mg (as valproic acid)
- Syrup 250 mg per 5 mL

Trade Names:
Depacon
- Injection 100 mg/mL
Alti-Valproic (Canada)
Apo-Divalproex (Canada)
Apo-Valproic (Canada)
Epiject (Canada)
Gen-Valproic (Canada)
Novo-Divalproex (Canada)
Novo-Valproic (Canada)
Nu-Divalproex (Canada)
Nu-Valproic (Canada)
PMS-Valproic Acid (Canada)
ratio-Valproic (Canada)
Rhoxal-valproic (Canada)
Rhoxal-valproic EC (Canada)
Divalproex Sodium

Trade Names:
Depakote
- Tablets, delayed-release 125 mg
- Tablets, delayed-release 250 mg
- Tablets, delayed-release 500 mg
- Capsules, sprinkle 125 mg

Trade Names:
Depakote ER
- Tablets, extended-release 250 mg
- Tablets, extended-release 500 mg

 

[Zoe]

Thanks Brain,
I didn't have all that information.

 

[RobinN]

I thought this should be bumped up again :bump: