Re: people's experiences with the various meds

[Guest guest]

You know what is scary about these side effects, too?

When you add in a child who isn't talking, and we have no clue as to why they are acting differently. Headache? Stomach ache?......

Here is a list of the meds. we've used and what they have done to .

Phenobarb: aggession, crying

Depakote: sleepy beyond control

Tegretol : sleepy, no personality

Topamax : extremely anxious, agitated easily

Trileptal : no personality, almost stone faced, sad, crying out of the blue

Lamictal : back and forth between happiness and aggression

We are on Lamictal now, and now I worry, what if it is giving her a headache when she is in an aggressive mood?

Kandy

11

Idaho

[Guest guest]

Kathy,

Would you mind expanding on what type of modified atkins diet you are using?

We have had so many problems lately with the keto diet(getting him to eat)

that we are going to try the modified atkins diet!

Any specifics would be great!!

THANKS!!

[Guest guest]

I've got to go back down through my list to contribute

to this, but just a note... some of these meds cause

side effects like listed below alone, but some are

much worse in combination with certain other drugs.

For example, Klonopin alone caused a particular

reaction in Tyler, but when mixed with pheno it was

much worse (hard to believe at the time it could've

been.)

Just a thougt.

Sheri - mom to Tyler

--- Kandylh3@... wrote:

> You know what is scary about these side effects,

> too?

> When you add in a child who isn't talking, and we

> have no clue as to why they

> are acting differently. Headache? Stomach

> ache?......

>

> Here is a list of the meds. we've used and what they

> have done to .

> Phenobarb: aggession, crying

> Depakote: sleepy beyond control

> Tegretol : sleepy, no personality

> Topamax : extremely anxious, agitated easily

> Trileptal : no personality, almost stone faced, sad,

> crying out of the blue

> Lamictal : back and forth between happiness and

> aggression

>

> We are on Lamictal now, and now I worry, what if it

> is giving her a headache

> when she is in an aggressive mood?

>

> Kandy

> 11

> Idaho

>

__________________________________________________

[Guest guest]

lin's side effects:

Lamictal: shakiness, his hands would shake like an old person, could barely hold on to anything. Some aggression.

Depakote: diarrhea, projectile vomiting, weight gain, water retention, created extended absence seizures (never had absence seizures before depakote, haven't had them again since stopping it)

Zonegran: aggression, weepy (actually he had the least side effects on this med but it did nothing to control his seizures)

Topamax: severe depression, extreme anxiety, touch sensitivity, sleeplessness

A friend of my husbands (an adult) was taking a low dose of depakote for migraine headaches. He was actually taking 1/4 of the dosage that lin was up to at one point. This person said that the depakote really did help his headaches but he lost his medical insurance and decided that he just couldn't afford to continue taking it. He reduced his dosage very slowly but he said that he felt horrible! He was amazed how much his body had gotten addicted to this drug. He said that he felt like what he was going through was how a real drug addict would go through. He felt sick to his stomach, his head ached and he was shakey. He continued to wean it and is very happy to be off of it. He was amazed to hear the dose that lin was on.

Anyway, lin is just 3 1/2, normal healthy little boy until January of this year when he had his first tonic-clonic seizure. He has only had 5 tonic-clonic seizures all together but continues to have drop seizures daily. He is not currently on any medication since we weaned topamax last week. We're heading towards the ketogenic diet as our modified Atkins diet is not able to control all the seizures.

take care,

Kathy

[Guest guest]

Yup -- it was amazing to me that each time the neuro

said he'd " never heard of any of these side effects "

--yet, they were actually listed on the little flyer

from Walgreens!--D

--- jscooptions@... wrote:

>

> In a message dated 11/27/2001 12:42:49 PM,

> ketogenic writes:

>

> << Tegretol -- " lost her joy "

> Depakote -- throwing up and " out of it "

> Topomax -- completely zeroed out, lost nearly all

> skills

> Lamictal -- aggressive, sleep problems, headaches

>

> Your thoughts? >>

>

> Good idea! Even though it is not funny the list

> made me laugh- probably

> because it is too " real " It all sounds like

> from one drug to the

> next. I would add to make sure to read the package

> insert they give you that

> has the tiny type on it (4 point?-I am a Graphic

> Designer) That has all the

> bizarre side effects that the Doctors don't know

> about.

>

> Joan-Mom to -11 years old-epilepsy, adhd,

> autistic behaviors, mild

> cp, speech & learning problems, high functioning &

> sometimes charming.

> Co-options Coordinator-Bergen, Hudson, Passaic

> Counties-north NJ

> -

>

__________________________________________________

[Guest guest]

Just goes to confirm that what I have come to believe is true........ Ask the PHARMACIST about drug side effects and what to look for..... call the pharmacist if you're seeing something that you think *could* be connected to the drug and ask them what they think (THEN call the doctor)..... they know so much more than the docs (who get most of their drug knowledge from drug company salesmen with no medical training whatsoever).

Patti

Re: people's experiences with the various meds

Yup -- it was amazing to me that each time the neurosaid he'd "never heard of any of these side effects"--yet, they were actually listed on the little flyerfrom Walgreens!--D--- jscooptions@... wrote:> > In a message dated 11/27/2001 12:42:49 PM,> ketogenic writes:> > << Tegretol -- "lost her joy"> Depakote -- throwing up and "out of it"> Topomax -- completely zeroed out, lost nearly all> skills> Lamictal -- aggressive, sleep problems, headaches> > Your thoughts? >>> > Good idea! Even though it is not funny the list> made me laugh- probably > because it is too "real" It all sounds like> from one drug to the > next. I would add to make sure to read the package> insert they give you that > has the tiny type on it (4 point?-I am a Graphic> Designer) That has all the > bizarre side effects that the Doctors don't know> about.> > Joan-Mom to -11 years old-epilepsy, adhd,> autistic behaviors, mild > cp, speech & learning problems, high functioning & > sometimes charming.> Co-options Coordinator-Bergen, Hudson, Passaic> Counties-north NJ > ->

[Guest guest]

MaKenzie's side effects:

Age: 2 1/2 still on Depakote and almost off Phenobarb

Tegretol: rash (only on for a few days)

Dilantan: severely dizzy and loss of motor skills when too high. (She started walking the week we stopped it.)

Phenobarb: HYPER, aggressive, trouble sleeping

Depakote: anorexia when too high, clumsy, possibly blurred vision, possibly making speech difficult

Trileptal: worst seizures she has ever had!!!

Re: people's experiences with the various meds

lin's side effects:

Lamictal: shakiness, his hands would shake like an old person, could barely hold on to anything. Some aggression.

Depakote: diarrhea, projectile vomiting, weight gain, water retention, created extended absence seizures (never had absence seizures before depakote, haven't had them again since stopping it)

Zonegran: aggression, weepy (actually he had the least side effects on this med but it did nothing to control his seizures)

Topamax: severe depression, extreme anxiety, touch sensitivity, sleeplessness

A friend of my husbands (an adult) was taking a low dose of depakote for migraine headaches. He was actually taking 1/4 of the dosage that lin was up to at one point. This person said that the depakote really did help his headaches but he lost his medical insurance and decided that he just couldn't afford to continue taking it. He reduced his dosage very slowly but he said that he felt horrible! He was amazed how much his body had gotten addicted to this drug. He said that he felt like what he was going through was how a real drug addict would go through. He felt sick to his stomach, his head ached and he was shakey. He continued to wean it and is very happy to be off of it. He was amazed to hear the dose that lin was on.

Anyway, lin is just 3 1/2, normal healthy little boy until January of this year when he had his first tonic-clonic seizure. He has only had 5 tonic-clonic seizures all together but continues to have drop seizures daily. He is not currently on any medication since we weaned topamax last week. We're heading towards the ketogenic diet as our modified Atkins diet is not able to control all the seizures.

take care,

Kathy

"The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Hi there,

Haven't had time to be on line although I have been reading your posts daily. You all have been very helpful. We are still struggling with constipation and hard stool. Rebekah hasn't had a normal BM since we started. I have her on the CalMagZincII and I am adding as much magnesium daily that I can. It is a challenge to give these supplements when the food is already an issue!!!!!! I have also started giving her senekot with softener and that seems to be helping. Hopefully we will soon have a normal BM without an enema!

Rebekah's med.side effects:(Rebekah is seven and has been on the diet since July 2001)

Depakote: still on, have decreased twice

- loss of appetite but better than when she was on the syrup

-osteoporosis(broke her hip)

-has been on it since 3 months old except for a year when we tried other drugs;

Frizium(clobozam)- have reduced for the second time as of last night. We think this may be causing weak muscles...time will tell as we reduce.

Topiramate: topomax??not sure of the other name but this was a horrific experience. Rebekah regressed physically, emotionally and cognitively. She lost a year of her life to this drug. A very sad story. Since she was in a body cast for 12 weeks we weren't aware of how this drug was effecting her physically until the cast came off. She was able to walk before she broke her hip, when it the cast came off she had lost her ability to sit, crawl and walk. The cast came off in June, in Feb. of the following year we had finally convinced the Dr. to get her off of topiramate...all she could do until that point was roll on the floor......within a month off this drug she was sitting independently. I wish I could say she regained crawling and walking skills.........this is one of the reasons we are trying the diet to see if there is any chance of regaining what she has lost physically.

Lamictal: One of the drugs tried while trying to wean topiramate

Lamictal :caused very strange jerking and twitching of limbs during the night......got so bad we had to take her to Emergency and demanded she be taken off. She was observed while being 'hooked' up and the neurologist had never seen anything like it and still hasn't got an explanation for it......wasn't considered seizure activity..very scary! This drug did amazing things for her cognitively she was sharper than ever and everything seemed to be going on 'fast forward'.......she was so hyper on this drug it took a full day of sleeping to normalize after we stopped one dose! Can't imagine what it was doing for her heart rate!!!!!!

Sorry about the long post! It's a long story!!!!

LaVerna, mom to Rebekah

Re: people's experiences with the various meds

lin's side effects:

Lamictal: shakiness, his hands would shake like an old person, could barely hold on to anything. Some aggression.

Depakote: diarrhea, projectile vomiting, weight gain, water retention, created extended absence seizures (never had absence seizures before depakote, haven't had them again since stopping it)

Zonegran: aggression, weepy (actually he had the least side effects on this med but it did nothing to control his seizures)

Topamax: severe depression, extreme anxiety, touch sensitivity, sleeplessness

A friend of my husbands (an adult) was taking a low dose of depakote for migraine headaches. He was actually taking 1/4 of the dosage that lin was up to at one point. This person said that the depakote really did help his headaches but he lost his medical insurance and decided that he just couldn't afford to continue taking it. He reduced his dosage very slowly but he said that he felt horrible! He was amazed how much his body had gotten addicted to this drug. He said that he felt like what he was going through was how a real drug addict would go through. He felt sick to his stomach, his head ached and he was shakey. He continued to wean it and is very happy to be off of it. He was amazed to hear the dose that lin was on.

Anyway, lin is just 3 1/2, normal healthy little boy until January of this year when he had his first tonic-clonic seizure. He has only had 5 tonic-clonic seizures all together but continues to have drop seizures daily. He is not currently on any medication since we weaned topamax last week. We're heading towards the ketogenic diet as our modified Atkins diet is not able to control all the seizures.

take care,

Kathy

"The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe