Help

[Guest guest]

Tracey -- Couple thoughts. . .

One full capsule sounds like a lot. You might need to

go more slowly. There's a lot about drug weans on the

keto list, since many are weaning meds in tandem with

the diet. My own personal experience, as well as what

I've read time and time again is to always go way more

slowly than a neurologist would recommend.

I think chlorine is a problem for , too. Testing

(muscle response and electroderm) has twice and

independently shown a sensitivity to chlorine. I

don't know that for it causes seizures -- but

definitely " allergic-like " symptomes. The tough thing

is that you still want them to be a kid -- so, to me,

not swimming is not an option. We are attempting to

balance her sensitivity to chlorine with homeopathic drops.--D

__________________________________________________

[Guest guest]

What is Bacquacil? I've actually been interested in

converting our pool over -- but I'm sure it would be

pretty pricey. Why were you thinking of converting to

chlorine?--D

--- Traceygrubbs@... wrote:

> DeEtte,

> we actually do not use chlorine, we use Bacquacil.

__________________________________________________

[Guest guest]

DeEtte,

Baquacil is just a non-chlorine product for sanitizing pools. You basically

get the same results from Baq. as you do chlorine except it does not smell

like the usual chlorinated pools.

As far as converting the pool to Baq. they have a " conversion " kit that is

not that expensive but maintainance with Baq is pretty costly. I would say

approx. $120 per month.

Before you change anything, let me first continue with to see if the

Baq. is actually increasing her seizures. I went back to the 300mg of

Zonegram last night which controlled her seizures for 4 months. If she

continues to have them after the 300mg gets back into her system, I am going

to suspect the pool chemicals has something to do with it.

So before you go into the expense, let me see what comes up and I will let

you know.

Tracey

[Guest guest]

DeEtte,

Did not even answer your question about the reason I thought about converting

to chlorine.

Last year right around this time when first started swimming is when

her seizures started.

This year once she started to swim we noticed a little seizure activity. And

it may not have anything to do with the pool. As you know, I am weaning

from her last meds so what I am seeing is probably withdrawal related

but just to be on the safe side I put her back on the original dose which has

kept her totally seizure free for the last four months, and I am going to

observe if the pool has anything to do with it.

I even thought, if it was not the chemicals it could be related to under

water swimming. ashley is the type that enjoys the under water more than

above and I thought because she has to hold her breath and she barely comes

up for air, that it could be linked to the seizures.

Heck, I don't know. It may be just an idiotic assumption but I don't want to

close my mind to it until I know for sure.

I will let you know the outcome.

Tracey

[Guest guest]

Dear ,

You are a very thoughtful Mom and everything you mentioned could be at play in

's seizures!

I am not sure how Zonegram is dispensed, so I don't know if one capsule is

100mg, or not. When I got off of Topamax, I began by reducing my dose 25% each

week. That MAY or MAY NOT be appropriate for . IF I remember correctly,

the half-life of Topamax is 21 hours. Do you have a trustworthy pharmacist who

can tell you what the half-life of Zonegram is? (Some pharmacists can tell you

what the normal schedule is for reducing your dosage of medication, though they

can't recommend that you do so.)

Also, a doctor who specializes in detoxification (usually for drug addicts) may

be able to tell you what is the proper way to reduce 's dose. Usually

this doctor is a specialist in internal medicine and has a strong background in

chemistry and pharmaceuticals.

I hope these thougts help!

Best wishes,

Carrol

Traceygrubbs@... wrote: NEED ADVICE

I am weaning from Zonegram (have already weaned the depakote about two

months ago). She took 300mg of zonegram: (1) 100mg AM , (2) 100mg PM. I took

away one capsule from the PM dose about a 2 weeks ago.

About three nights ago, I noticed her kicking her legs vigourously in her

sleep (a little seizure activity that lasts about 10 seconds) and it has

happened every night since then but only one time per night.

Back when the doctor added the Zonegram to the Depakote the seizures actually

dissapeared, we went four months seizure free.

Here is where it gets confusing.

I am trying to figure out:

1) if this is withdrawal from the meds.

2) Is it that she needs the Zonegram in order to be seizure free.

OR

We have a pool and she just started swimming again. Last year right around

this time is when the seizures originally started. Could it be that the

chemicals (Baquacil) in the pool are adversely affecting her? Or, because she

does a lot of under water swimming that she is not getting enough Oxygen?

What do you all think???

Thanks, Tracey

[Guest guest]

not sure! sorry!

[Guest guest]

Hi Lori,

What about setting up a " night routine, " if you don't have one

already? Maybe a nice bath and a bedtime story, some kind of ritual

that makes the transition from a busy day to a calm period before

sleeping. Also, is he eating anything after dinner that can make him

wired?

Zoe

[Guest guest]

Febrile sz are benign, but do increase the odds of have other sz later.

They're not that unusual in small children as their brains are still

developing and therefore sz threshold is lower (we all have a sz threshold).

Two sz of unknown origin (such as fever, being hit on the head, etc) are

epilepsy and that is when medication would be considered (but I would look

into diet first - oh you could do some of that now: watch food dyes,

preservatives, and artificial sweeteners. If sz were to continue, then a

more aggressive diet would be warranted). Ellen

[ ] HELP

> PS No vaccines in at least the last2 months. Dr. did mention

> febrile seizure possibility.

> Thanks for all your support.

> Lois Bowen-Arizona

>

>

>

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[Guest guest]

>>>>>>>>>>>>>>>>>>>>>>>>>>>

Hi all,

I need to do a cleanse and I don't know where to start. (I know this is a

common question but I've read so much I'm overwhelmed.) I'm currently

constipated and laxatives and enemas have not been productive. I have looked at

bentonite clay which I think I can afford on my budget but I can't afford Primal

Defense or anything in the $30-$50 range.

I have heard about CLEAR but I don't know where to get that or the cost.

Does anyone have any suggestions for me? I'd appreciate any help.

Thanks,

Mel

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Mel;

First off have you had any diagnostics done regarding your colon and the shape

it's in. That is, do you know of any strictures or other abnormalities

happening?

This sounds like to me is that you have some issues that need to be addressed

first because there can be many causes of constipation with the top of the list

being a poor diet along with too little of water intake. Next is emotions. You

have to let us know what you've been doing besides the use of laxatives and

enemas. This is because some enemas are nothing more than descending colon

flushes that don't get to the ascending side of the colon in what is referred to

as high enemas, and laxatives can be of various types and react differently with

different bodies. Sever constipation can be symptomatic of a very serious

condition.

http://www.indiangyan.com/books/healthbooks/complet_femily_medicine_book/constip\

ation.shtml

As to colon cleansing I'm a very big proponent of high enemas, colonics or

colemas with the added benefit of ozone insufflated at the same time. This

website will give you some idea of what is happening with your system just by

the types of stools that are observed.

http://www.appliedozone.net/colonicstwo.html

Dale

[Guest guest]

I had good results with the use of super enzyme complex.

My husband did, and my friend also. And a few members

on the board tried the enzymes and got allot of mucus

out right away. You can buy a bottle for about 22-30

dollars, depending on if you buy it localy or online.

But it may or may not solve your constipation problem.

I hope you have tried adding fiber, eating right with

water and excersize. This is a problem for your doctor

to look into also, I agree with Dale. I had a colonscope

done to be sure nothing was wrong in my bowel.

Also consider that there could be a food you are eating

that you may be sensitive too or you are not digesting

your food altogether and need daily enzymes to take.

Gallbladder problems can cause constipation too. I hope

you get a check up to make sure you are well. Then

jump into any cleanse that you like.

Liz D.

> Hi all,

>

> I need to do a cleanse and I don't know where to start. (I

know this is a common question but I've read so much I'm

overwhelmed.) I'm currently constipated and laxatives and enemas

have not been productive. I have looked at bentonite clay which I

think I can afford on my budget but I can't afford Primal Defense or

anything in the $30-$50 range.

> I have heard about CLEAR but I don't know where to get that

or the cost.

> Does anyone have any suggestions for me? I'd appreciate any

help.

>

> Thanks,

> Mel

>

>

>

[Guest guest]

Celeste,

If you live in Florida, or nearby, I could give you the name of a couple of doctors. I, too, have a little girl with systemic, so I pretty much know how you are feeling right now. The doctor that we use is very conservative and dosen't much agree with steriods unless there is no other alternative. My daughter has never been treated (arthritis wise) with steriods except when she has a bad spell of asthma.

I wish you the best!

[Guest guest]

Hi Celeste,

I have a 4yr old son who is also systemic.He was diagnosed June 2001 and nothing seemed to help get him off the steroids.He got maxed out on 25mg MTX maxed out on 200mg Plaquenil every day,two ankle injections,and of course the pred.We live in Tennessee and one day Georgina posted about an Enbrel trial for systemic kids.I called Immunex who put me in contact with Cincinnati Childrens Hospital,which in my opinion is THE BEST OF THE BEST. didn't qualify for the trial,but he did qualify for a big 3yr safety study.While Cincy heads the study they are not the only ones,unfortunatelly I don't know who else does.We drive 6-7 hours one way every 3 months the first year then every 6 months years two and three.Enbrel isn't the miricle drug for everyone but it is for .He is currantly down to 2mg pred,he used to never be able to go below 6mg without flairing.He has no sighns or symptoms of arthritis,I say he is in a medicated remission but our rheumy at Vanderbilt says not until the steroids are totally gone.He responded within 13 days and after 1 month they droped the Plaquenil,next month they are droping the Ibuprofin.I dont know where you live in relation to Cincinnati Ohio,but if you are to far away I'm sure Dr.Lovell can tell you who would be the closest.You can call his office directly at 1-513-636-8071.Sorry if you have already tried Enbrel and it didn't work for your child.You asked for the best and like I said any one of the numerous rheumy's there are the best.I would however recommend Dr.Lovell or Dr.Passo.I would call and talk to them even if you have tried the Enbrel.A friend of mines little girl also systemic called him up and talked for almost an hour,he basically said what could be done and if Vandy wasn't willing to do it,bring her in and he would give her the treatment she needs.Good luck on your journey,systemic JRA is wicked and cruel.

Hugs

Becki and 4systemic

[Guest guest]

Have you checked the list of doctors our kids see? Look on there for one

in your area. Also hospitals affiliated with universities are usually

very good in that the info there is very up to date. I know the rheumy

my son saw at first moved to Duke university to teach there and she was

wonderful. His current dr is affiliated with University of Chicago -

very good. To me that is where I would start. Also children's hospitals

in general are usually good in that they focus on children and so have

up to date info for dealing with kids. Good luck in your search. Michele

(mom to 15, pauci & spondy)

help

I am trying to find the very best here in the US for my son all of

the other doctors that he has seen have given up but I haven't. He

has systemic onset JRA, I am trying to find the very best in

pediatric rhuematology but no one will give me a clear answer and i

was part of the list group a while back before we started a new

treatment that did nothing for my son. He is 4 now and all i want is

to get him off of the steroid. If anyone has any ideas please let me

know I would greatly appreciate it

Celeste Pettit (Camron 4, JRA)

[Guest guest]

Well he has been diagnosed since he was 10 months he has been on

embrel, methotrexate, rhemacaid, prednisone, and of course lets not

forget motrin. He was alergic to all but the pred and motrin so that

is all he is on. I live in New Mexico and was taking him to Denver

to see a ped rhuemy he said he has tried everything he can think of

and he said I should try a different rheumy cause they might be able

to do more. I can't give up because it seems like everyone else has.

He has seen 4 rhuemy's who don't know what to do because they say he

is so young. He is infected in almost all of his joints and is

anemic. He is allergic to iron suppliments so he drinks 6 pediasures

a day. I am at my wits end on what to do. Any suggestions would be

greatly appreciated.

Celeste (camron systemic 4)

[Guest guest]

I am willing to travel anywhere to get the best help I can for my

son. So any help would be greatly appreciated

Celeste

[Guest guest]

I don't have that list but I would love to see it. My son was at the

childrens hospital of Colorado but they didn't know what to do when

we tried rhemicaid and he was allergic to it. Here in NM they don't

have a ped rheumy so I am limited and I know that most of the good

rhuemy's are on the east and west coast so I am willing to go

anywhere.

Celeste

(camron systemic 4)

[Guest guest]

Hi Celeste

My name is Gentile and I have a 6 year old daughter with systemic. She got sick three years ago and we took her to a rheumy in Norway, where we lived back then.

Jacie was put on Prednisolon, Ibuprofen and after six months on Methotrexate. After being on the combination of all three drugs for one month she got even more sick. She would have fevers up to 104 two times during 24-hours and for three days after taking Methotrexate.

By this time we had mowed to Maui, Hawaii and I took her to a doctor here before we got an apointment with the Rhemy. The doctor (which also was a naturalpath) said that if I continued the drugs it would probably kill Jackie. That was how I felt too since she only got worse and worse for everytime I gave her the medecines. After being on mtx for 2 1/2 months I remowed it. She was now on 20 mg pred. I lowered the dose by 2.5 mg. Jackie would get worse for up to a week everytime I lowered the dose of pred. The time between everytime I lowered the dose of pred. varied. I always wanted her to adjust to the lower dose and feel fine for a couple of weeks before I lowered it again and she had to go thrue a bad week. It took me six months to get down to zero. I never had to bring up the dose during this time. When I got down to giving her 5 mg pred a day I would lower the dose by scraping of a corner of the pill with a knife soo that the lowering went very slow and the dose was so small that Jackies body wouldn't notice.

I met an adult with RA. He had been on Pred for his whole life almost and said it's too painful to get of it. That's when I figured it's now or never. During Jackie's first 16-18 months of systemic arthritis she was soo sick. When we put her to sleep in the evenings she would wake up two hours later totaly soaked in sweat. We had to change her pyjamas up to three times during the night. At 2 o'clock she would usually have 104 in fever and we needed to give her Ibuprofen so that she could mowe in bed without being in pain. We would actually turn her.

We never knew from one day to another how she would be doing. Could we take her out or not. Would she have to stay in bed or not.

Today she's a totaly different child. She has not had flearups for 18 months. The main thing we have done for her was to change our diet. The biggest difference was noticed when we remowed sugar. If you want to know more about the diet thing just get back to me and I will gladly tell you more about it. Today Jackie is on no medecines. She wanted to stop taking Ibuprofen two weeks ago and is doing fine. She is on other "supplements" though. Like Glucosaminsulphate and Moducare. Moducare does the same as Remicade but it's only one pill made of plantexracts that balances the imunesystem and stops the TNF alpha cells from doing damage to the joints. She also takes Calcium, zink, magnesium and some more. We did a hairanalysis on her to see what she needed of vitamins and minerals.

When visiting Norway and the hospital treating Jackie last summer they wanted her to try Remicade. We said no and the doctor suid us for refusing. He thought that only remicade can repair the damage that has been done to Jackies joints. According to a big english studie , Glucosaminsulphate does the same repair. The difference is that glucosaminsulphate is fairly inexpensive while Remicade costs $ 15.000,- per year.

I encurage you to try different things that will help your child. I am so happy to have managed to get jackie well without being on all the prescription drugs that sooner or later show sideeffects.

I am just an ordenary person without any meical education. What I have learnt during the past 3 years is a great deal and I feel very confident about the way we have choosen to treat Jackie. My whole famaly are doctors (plasticsurgeons, pediatric surgeons and family doctors) and I have seen how good they are in specific things but also how helpless they are in other situations.

Our rhemy in Norway was an older man (63 years) that treated kids with the drugs the medical companies provided them with and knew about nothing else. If you are still looking for one I hope you find someone alot better and who is not driven by money or other advantages that they get for prescribing drugs.

Wish you and your child all the best and feel free to get back to me if you what more info. on the diet or just exchange experienses.

Take care,

Gentile

>From: "Celeste"

>Reply-

>

>Subject: help

>Date: Mon, 18 Nov 2002 20:09:32 -0000

>

>I am trying to find the very best here in the US for my son all of

>the other doctors that he has seen have given up but I haven't. He

>has systemic onset JRA, I am trying to find the very best in

>pediatric rhuematology but no one will give me a clear answer and i

>was part of the list group a while back before we started a new

>treatment that did nothing for my son. He is 4 now and all i want is

>to get him off of the steroid. If anyone has any ideas please let me

>know I would greatly appreciate it

>Celeste Pettit (Camron 4, JRA)

>

MSN 8 with e-mail virus protection service: 2 months FREE*

[Guest guest]

Hi,

I mentioned the Enbrel study earlier,several clinics across the country are doing Kineret trials on children also.It might be worth looking into.I cant believe I am saying this but stem cell transplant may be an option.It is usually reseved for severe cases,but it does sound like you have run out of options.

hugs

Becki and 4systemic

[Guest guest]

I am not sure I can help you with a name of a doctor, but my cousin (who has JRA, now an adult) was on remicade and was allergic to it the second time he took it. Now they load him up with IV benadryl and other histamine type drugs and he is able to take the treatments.

Re: help

I don't have that list but I would love to see it. My son was at the childrens hospital of Colorado but they didn't know what to do when we tried rhemicaid and he was allergic to it. Here in NM they don't have a ped rheumy so I am limited and I know that most of the good rhuemy's are on the east and west coast so I am willing to go anywhere.Celeste(camron systemic 4)

[Guest guest]

Celeste,

There is Dr. Jung at Childrens in Omaha. He really turned my daughter around. While that is still a great distance, it's not Seattle or Philly. Good luck with your search.

Christy (Abbie, 13 systemic)

[Guest guest]

Hi Steve,

Caffeine weakens your immune system, and coffee creates an acidic

environment in your stomach (which helps the candida to stay alive).

Ali

At 12:27 p.m. 6/12/2002 -0500, you wrote:

>know your not supposed to have caffiene witht this diet but what is the

>reason u cant have it ???? steve

[Guest guest]

Cherann,

I had the same symptoms as you. I went on treatment January of 2000 " Combo " I

also have 1b. It wasn't fun but I didn't miss work and I got through fine. I

went 6months and my doctor took me off (nonresponder) I felt kind of cruddy for

another 2 months, then one day I realized my joints didn't ache as much and I

wasn't as tired, also wasn't short of breath any more. I am still doing great

much better than I was before treatment. I would and hopefully will do it again

and next time with the new pegs I will beat it.

My advice is do it if you can, but everyone responds differently, if for some

reason you have to quit, so be it, at least you tried.

Good luck, in the end this is your decision.

Bob

Help

I have had my biopsy, which said my liver was at stage 1 with the

virus very active at stage 3. AST IS 91 - ALT IS 158 Viral

count is

19000 and I have type 1B Hep.

My Gastro Doc says it would be good to do treatment now, before I

have any more damage to my Liver. He does not see any new treatments

coming in the next 5 years so I should bite the bullet now rather

than later.

My biopsy was the most painful thing I have ever endured which had

everyone confused. If anything will go wrong, it always happens to

be me. They still do not know what caused the pain. The Doc thought

he had hit my gall bladder but I don't have one.

My joints hurt, I am tired, short of breath and cannot sleep well.

One of the big reasons for treatment would be to feel well again.

The Doctor says that these symptoms will not necessarily go away with

treatment, as he is not sure they are related to the Hep C. Of

course, they are the symptoms along with blood test that my GP used

to diagnose Hep C.

Now I am trying to make a decision as to whether to have treatment.

I would really like to have input on this as I am at a loss. I am

afraid to do it and afraid not to do it. Help

[Guest guest]

Cherann,

I had the same symptoms as you. I went on treatment January of 2000 " Combo " I

also have 1b. It wasn't fun but I didn't miss work and I got through fine. I

went 6months and my doctor took me off (nonresponder) I felt kind of cruddy for

another 2 months, then one day I realized my joints didn't ache as much and I

wasn't as tired, also wasn't short of breath any more. I am still doing great

much better than I was before treatment. I would and hopefully will do it again

and next time with the new pegs I will beat it.

My advice is do it if you can, but everyone responds differently, if for some

reason you have to quit, so be it, at least you tried.

Good luck, in the end this is your decision.

Bob

Help

I have had my biopsy, which said my liver was at stage 1 with the

virus very active at stage 3. AST IS 91 - ALT IS 158 Viral

count is

19000 and I have type 1B Hep.

My Gastro Doc says it would be good to do treatment now, before I

have any more damage to my Liver. He does not see any new treatments

coming in the next 5 years so I should bite the bullet now rather

than later.

My biopsy was the most painful thing I have ever endured which had

everyone confused. If anything will go wrong, it always happens to

be me. They still do not know what caused the pain. The Doc thought

he had hit my gall bladder but I don't have one.

My joints hurt, I am tired, short of breath and cannot sleep well.

One of the big reasons for treatment would be to feel well again.

The Doctor says that these symptoms will not necessarily go away with

treatment, as he is not sure they are related to the Hep C. Of

course, they are the symptoms along with blood test that my GP used

to diagnose Hep C.

Now I am trying to make a decision as to whether to have treatment.

I would really like to have input on this as I am at a loss. I am

afraid to do it and afraid not to do it. Help

[Guest guest]

<<I have had my biopsy, which said my liver was at stage 1 with the

virus very active at stage 3>>

What does that mean? Sounds confusing to me. I haven't been keeping up with

biopsy reports so I don't understand what this means with 2 stages? Wierd.

If your pcr is positive, the virus is active.

<<My joints hurt, I am tired, short of breath and cannot sleep well. One of the

big reasons for treatment would be to feel well again. >>

While on interferon/combo for hep c, my joint pain did go away, but I got a lot

more (worse) problems as time went on, so I would not recommend treatment just

to get rid of symptoms. Fatigue and not sleeping can (and probably will) get

worse on treatment.

With a genotype 1b it is more difficult to go undetected but not impossible.

Your viral load is very low so who knows, it might work!

As for your shortness of breath, what is causing that? Be sure your doctor

knows this cuz treatment can cause that problem too along with heart problems

and you don't want to complicate anything into something life threatening.

Nobody knows for certain whether to do treatment or not and I understand your

delimma. Make sure your current health is the best it can be first, talk to

your doc, then if you feel up to it, make your decision. If it's to do

treatment, go for it, and know that you can stop anytime the sides get too much

for you.

Good luck. Let us know what you decide.

Alley

" You are only given a little spark of madness.You mustn't lose it. " Robin

SFF_Texas

Texas_Writers

WritingAndPublishing

critique_group

SFF_Writers/

happyheppers

ICQ 12631861

Alleypat

AIM DallasAlleyPat

MSN Alleypat

[Guest guest]

<<I have had my biopsy, which said my liver was at stage 1 with the

virus very active at stage 3>>

What does that mean? Sounds confusing to me. I haven't been keeping up with

biopsy reports so I don't understand what this means with 2 stages? Wierd.

If your pcr is positive, the virus is active.

<<My joints hurt, I am tired, short of breath and cannot sleep well. One of the

big reasons for treatment would be to feel well again. >>

While on interferon/combo for hep c, my joint pain did go away, but I got a lot

more (worse) problems as time went on, so I would not recommend treatment just

to get rid of symptoms. Fatigue and not sleeping can (and probably will) get

worse on treatment.

With a genotype 1b it is more difficult to go undetected but not impossible.

Your viral load is very low so who knows, it might work!

As for your shortness of breath, what is causing that? Be sure your doctor

knows this cuz treatment can cause that problem too along with heart problems

and you don't want to complicate anything into something life threatening.

Nobody knows for certain whether to do treatment or not and I understand your

delimma. Make sure your current health is the best it can be first, talk to

your doc, then if you feel up to it, make your decision. If it's to do

treatment, go for it, and know that you can stop anytime the sides get too much

for you.

Good luck. Let us know what you decide.

Alley

" You are only given a little spark of madness.You mustn't lose it. " Robin

SFF_Texas

Texas_Writers

WritingAndPublishing

critique_group

SFF_Writers/

happyheppers

ICQ 12631861

Alleypat

AIM DallasAlleyPat

MSN Alleypat