Re: mouth/tongue weakness

March 16, 2007

Rhonda,

So sorry if I sounded defensive. I've had a few people thinking I am

absolutely nuts for taking Hailey off her meds. I see what you were saying now.

I just hate those drugs so much and wish I had never started her on them. If

only I had known my other options then.

Anyway, Hailey is sooo much better today! No generalized seizures, but still

a few drops. She was having appx. 10 gen. a day plus hundreds of head drops a

day. Even her mouth control was much better today. I could tell she was feeling

much better, not so " whiney. " I decided to increase the omegas after doing much

research. And today, no seizures! (except a few drops) I'm so excited for her. I

know it may have been a bad idea to make another change, but I had to do

something to help her. She has been on the omegas for several months now and I

could tell even in the beginning they were helping.

Concerning the Carnosine. I thought that may have been the culprit last week

when she lost so much muscle control, so I stopped it. The next day is when she

started w/ the " bad " seizures. I started her back on it and is still on it and,

like I said, had a great day. I have also noticed her being much more vocal.

Now we are just going to stay put for a few weeks and let her get stable

before anymore changes. I think we are on the right track, it's just a matter of

getting her off the meds. That Zonegran is a tough one! Glad it's gone though. I

really think she is going to continue to improve and will keep you updated.

Miranda

Rhonda Ackerman <drsjackerman@...> wrote:

Miranda,

I'm happy to see that your daughter is doing a little better today. Keep at

it. Seems like you are on the right track. I think you misunderstood me. I

didn't suggest to put her back on the zonegran. I said to go back to where you

were when you finished the zonegran. In other words, I was suggesting that you

go back to where you had just weaned her off the zonegran and wait 2 weeks

before starting the carnosine. Sorry about that misunderstanding. I'm one of

the last people who would recommend giving back meds unless it is really

necessary.

Rhonda

miranda goranflo <mirandag1981@...> wrote:

Rhonda,

As I appreciate your help, I just can't bring myself to put her back on

Zonegran. She has been on 7 diff. meds and has gotten so much worse after the

addition of each. She was so much better before all the drugs. We always do very

slow weans (weekly-every 2 weeks). I just don't think drugs are the answer for

her. They have only made seizures worse, more frequent, more kinds and have

reduced her to infancy. She suffered side effects from all of them. I do think

that we just need to give it more time and maybe once Klonopin is gone we will

see improvements. I think it will just take a while for the Zonegran to get out

of her system. In the mean time I have been giving her lots of water and started

her on detoxifying herbs and an herb to help w/ withdraws.

Yesterday I did not give her Carnosine and she ended up having multiple

generalized seizures. We haven't seen these for a few weeks. I don't know if it

is related, but I gave it to her later that day and again today. That leads me

to believe it is helping... I hope.

I will update everyone to how she is doing. Hopefully once the Zonegran it

completely out of her system she will be better.

Thanks again and any additional advice is always welcome.

Miranda

Rhonda Ackerman <drsjackerman@...> wrote: Miranda,

I would recommend that you go back to where you were when you finished the

Zonegram wean and wait to start the carnosine. I use to be a part of the

Ketogenic support group that had a lot of weaning. They always recommended make

one change at a time and wait 2 weeks between each change. This gives you time

to evaluate the change and its effect. Your daughter could still be dealing with

withdrawl symptoms from the Zonegram, it could be the carnosine causing the

problems, or it could be seizure break throughs that no matter what won't go

away. My suspicion is that it is either withdrawls or the carnosine. FYI we

tried carnosine on our daughter and it increased her seizures. Where it has

helped many people, it was definately a " no " for our daughter.

Rhonda

Mom to 12 year old daughter

complex partial seizures since age 14 months (prior history unknown)

miranda goranflo <mirandag1981@...> wrote:

Dear Groups,

I am in need of some serious help. Rather than call the neuro (who would just

push more drugs), I'm going to ask all you wise people that have helped me so

much. I always get more and better answers here anyway. So, here is my dilemma.

My 4 y/o daughter has epilepsy. I won't get in to all the details, but its

pretty bad. We have recently started her on a number of different herbs and

supplements and are weaning meds. We just finished weaning Topamax and Zonegran.

She is only on Klonopin now at a low dose (that's next to go). She has improved

so much. No more " bad " seizures and down from hundreds of head drops a day. She

is much more active now and I can tell she is feeling much better. Also, not so

doped up looking. She lost a lot of skills due to all the meds, but is regaining

them. My big concern now is that she was trying to talk more. Not so much now.

She used to drool a lot. That is better. Now though, her drool is much more

bubbly and she makes a constant

" clicking noise " w/ her tongue all day. Her tongue tremors constantly and she

can barely keep it in her mouth. She has been having a lot of trouble eating and

drinking. She wants it and tries, but it just falls right out. I have been

having to mash up her food and feed her myself and take the valves out of the

sippy cups and hold her like a baby just so she can get it down. I don't know

what is going on, but it is a serious problem and I could really use some

advice. The speech therapist seems to think it is neurological, I agree (at

first I thought it may be signs of autism, with the constant clicking). She said

it was the tremors (which we don't see w/ the rest of her body so much anymore)

over-flowing to her tongue. This has been a problem for about a week, since we

weaned Zonegran and started Carnosine. Could one of these be the problem? The

Carnosine is supposed to help w/ verbal/mouth skills. I can't figure out if it

is withdrawls from meds, the Carnosine, or if its

just her. I would like to know what others think and possibly give me a

solution. We have made so many milestones w/ her and she is a lot better over

all, but she has to eat and drink. What is going on? Thanks all for all your

help.

Miranda (mom to 4 y/o Hailey)

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March 16, 2007

,

Hailey is 4 1/2. She was 2 1/2 at dx. and was a " normal " child until her

first seizure. Then we started w/ the meds and things went downhill from there.

Hailey does not get any butter. I may test the goats milk, cheese and yogurt

later as she gets more stable. I'm just wondering what else there is. She has to

have some kind of milk. I have read terrible things about soy and she is already

consuming so much rice (do to elimination of gluten), I don't want her to

develop an allergy to it. What do you suggest? Also, she gets an epson salt bath

5 or more times a week, as magnesium is best absorbed through the skin. She has

been on the Black Cohosh and the Omegas for several months now and they have

seemed to help, until our recent problem w/ weaning meds.

Hailey had a great day today. Much better! She didn't have any generalized

seizures (it's been about 10 a day), only a few head drops. She had a lot more

control of her mouth today and I could tell she felt a lot better. I'm so happy

for her.

Actually, the reason she did so well today (I think) was because I increased

her omegas. I did a lot of research and found that people w/ epilepsy can be

severely deficient. What dose were you at? I'm having a hard time deciding her

dose. Right now it is 2000 mg. I'd like to get some opinions. I know I probably

shouldn't have made another change, but I had to do something to help her. And

it turned out to be a good decision. Like I said, much much better today.

It's just so hard weaning these meds. I think that once they are all gone

she will really improve. But no more changes for a few weeks. Not until she gets

more stable. I can't wait til this is all over! Talk to you soon.

Miranda

<lindae321@...> wrote: Hi

Miranda:

How old is Halley? I know the tongue shaking is indicative of the electrical

activity in her brain. this is one of the ways I can tell how low my threshold

is. another way is to close one eye and open the other. watch the degree of

shaking on the closed eye. this will tell me if I am at risk. I only have

partial seizures and control them with diet and supplements. I see that you are

giving her a lot of good things. But I wonder if you tested each thing to see

what helps and what does not. Some things are good for some people with

seizures and bad for others. Like Omegas, some people decrease their seizure

frecuency and some increase the seizures.

So some of the things on your list I know are seizure triggers. CHEESE

YOUGURT MILK are big nooooos blk cohosh could be trigger seizures. Where is

the Magnesium this is a must! the brain formulas I am not familiar with but

some contain things that stimulate the brain and this can trigger.

If you have not done this, start with the basics. test each thing for a

couple of weeks and check the tongue and eyes try to quantify. then add one

supplement at the time and record activity. Here is my recipe:

One good multy vit. daily

one vit b-50 for breakfast with protein or oatmeal (avoid eggs and chicken

at first) Introduce after seizures are under control and test.

at night 300 magnesium with dinner.

at least 1qt. of water daily

No milk, cheese, yogurt sugar or too much salt no blk or red peppers or chilis.

no chocolate or coffee. No ginseng or hormones.

eat fish and loooots of fruit and green vegies beans lentils, etc. No

pesticides

1 hr. of sun exposure play outside daily

regular daily exercise

go to bed early no staying up late. Lack od sleep is a trigger.

keep stress under control

stay away from computer screens and tv screens until you can come up with the

perfect formula for her,

Now see how she is doing and quantify and start testing the other elements on

your formula one at the time. remember that some effects are cumulative. For

example when I startred taking flax seed it helped my memory but after a while

it aggravated my seizures several weeks after. That is why I recommend that you

test each on separately and for a while before you put your seal of approval.

This is detective work. I hope you can get her off the meds and control the

seizures.

Let me know what you discover.

Good Luck

miranda goranflo <mirandag1981@...> wrote:

,

Just wanted to post our protocol for Hailey and maybe get some opinions on it.

Thanks.

Miranda

Supplements

*B-Complex- 2 capsules daily b1: 66 mg. (total of 2 capsules)

b2: 66 mg.

b3: 16 mg.

b5: 66 mg.

b6: 66 mg.

b12: 66 mg.

Biotin: 200 mcg.

Proprietary Blend: 150 mg.

Folic Acid: 266 mcg.

(several other ingredients for B-Complex)

*Nordic Naturals (Omega) 4 soft gels daily

*Vitamin E- 400 IU daily

*Quadra Zyme Plus- 3x daily

*L-Salivarius- 1 cap. x 3

*L-Carnosine- 750 mg. daily

*Vit. D.- 800 IU. daily

Glyconutrient Products (Mannatech)

Ambrotose: 1.34 g.

Plus: 2 capsules per day

Glycobears: 2 capsules per day

Mannabears: 4 gummies per day w/ 392 mg. Ambrotose Complex

Herbs

Brain & Nerve Coctail: 1 dropper x 3 per day

H.T. Comb. 1/2 dropper x 2 per day

Skunk Cabbage: 1 dropper x 3 per day

Arnica: 1 dropper once per day (external only)

Herbal adjustment: 1 dropper x 3 per day

CA-W (calcium) 1 dropper x 3 per day

Slippery Elm: 1 dropper x 2 per day

St. s wort: 1 dropper x 3 per day

All Cells Salt: 1 dropper x 3 per day (good for selenium)

Formula Max: 1 dropper x 3 per day

C.C.E.-W.: 2 droppers x 3 per day

Research Formula: 1 dropper x 3 per day

Fever Few: 1 dropper x 3 per day (or more if needed)

Hi.K. (Potassium): 1 dropper x 3 per day

Chlorella: 1 dropper x 3 per day

Black Cohosh: 1 dropper x 3 per day

Virginia Snake Root: 1 dropper x 3 per day

(NOTE: Most herbs are topical, but we give a few orally w/ applesauce)

Diet

No gluten, dairy, soy, corn, and sugar. Only organic and all natural meats

and vegis. Goats milk, cheese, and yogurt. Spring water w/ lemon (for vit. C).

Very healthy!

Other

Epson Salt bath 5-6 nights a week. Lavander for auromatherapy. Lots of

therapy (P.T., O.T., S.T.).

Medications

Klonopin: 15625 mg.

<lindae321@...> wrote: Hi

Miranda:

Try eliminating the goats milk. for a few days and see whar happens. I hope

your formula includes vit B-50. magnesium - multivitamin - plus all of the

stuff you mentioned.lots of water sunshine exercize plenty of sleep and nooo

stimulants like chocolate. or red or black peppers. test the omega 3

sometimes it can make things worst and some better.

good luck,

miranda goranflo <mirandag1981@...> wrote:

,

Thanks for the response. We have eliminated dairy and gluten w/ Hailey. Also

soy, corn and sugar (of course). She eats a very healthy, all natural/organic

diet w/ no preservatives. Lots of fruits, veggis and meat. Not to mention goats

milk and lots of lemon water. We have her on about 25 diff. herbs and

supplements that have helped a lot. She is still having the problem I mentioned,

but I really think it is withdraws from Zonegran (even w/ a very slow wean). I

have started her on a couple of herbs to help detoxify and to help with the

withdraws. I think we just need to give it more time. She is still eating and

drinking, so long as I help her. I think we are on the right track, we just have

to give it more time. Thanks again for the input.

Miranda

<lindae321@...> wrote: Hi

miranda:

the shakink of the tongue iws probably the electrical activity in her brain

just showing in her tongue. That is one way to tell how bad the irritation in

the brain is at the moment.

Are giving her the supplements talking dairy away from her. this could

make all the difference in the world.

miranda goranflo <mirandag1981@...> wrote:

Dear Groups,

I am in need of some serious help. Rather than call the neuro (who would

just push more drugs), I'm going to ask all you wise people that have helped me

so much. I always get more and better answers here anyway. So, here is my

dilemma. My 4 y/o daughter has epilepsy. I won't get in to all the details, but

its pretty bad. We have recently started her on a number of different herbs and

supplements and are weaning meds. We just finished weaning Topamax and Zonegran.

She is only on Klonopin now at a low dose (that's next to go). She has improved

so much. No more " bad " seizures and down from hundreds of head drops a day. She

is much more active now and I can tell she is feeling much better. Also, not so

doped up looking. She lost a lot of skills due to all the meds, but is regaining

them. My big concern now is that she was trying to talk more. Not so much now.

She used to drool a lot. That is better. Now though, her drool is much more

bubbly and she makes a constant

" clicking noise " w/ her tongue all day. Her tongue tremors constantly and

she can barely keep it in her mouth. She has been having a lot of trouble eating

and drinking. She wants it and tries, but it just falls right out. I have been