Update on Daughter

[abbe]

[quote name='myrose' date='Apr 6 2009, 10:24 PM'

 

Wendy,

 

Nicky drinks capri sun 100% juice at lunch . It has citric acid.... At home he gets strawberry kiwi, i though early on that orange juice could have been a trigger and now I am to darn scared to work it back in. Besides he loves OJ so much he would drink 10 glasses a day if he could which they say could mean allergy.

 

Mostly at home he just drinks water though.

 

P>S> I took the computer out monday. He is back to 0 tics again.

we are going on vacation Friday so my fingers are crossed. I am so very, very thankful . Tommorow he goes for a live blood analysis

 

 

abbe

[myrose]

Abbe,

I am EXTREMELY curious to hear about the vacation after you return. Reason being that 2x while we were on vacation my daughters tics mysteriously dissapeared! Twice it happened. NOt a twitch! I remember my family members thinking I was crazy when before our visit I told them all about her condition over the phone. Soon as we returned back....tics came back.

That was when we did the whole allergy elimnation like hepa filters, carpets gone, ultra blue violet light on ac unit.....I could go on forever with that list.

 

I hope you enjoy your vacation and good luck woth the blood tomorrow. Hopefully it will bring you closer to finding what works best for him.

 

OH! in regards to the citric acid....I mentioned it because it was on your list you posted (bad for the brain?)

[abbe]

Wendy,

 

So Nicky's neck tic did appear very mildly on vacation. I would have to say it was either the arcade or eating off diet. It was never bad for him or me!!! I have an apt. with him at this big institute near my house that the clinical nutritionist recommended. It is in early May. Until then I expect things to be the same for him. I have put him on new probiotics as per her suggestion from a company called candida wellness. They are very high quality and I for the first time in my life have been able to take them. Before they always upset my stomach. The nutritionist said that most of them on the market have mold in them and I am allergic to mold!!

 

 

abbe

[momofgirls]

Wow that is great! I am new to the forum and was heartbroken when my 5 year old daughter started ticcing. She is now 6 and I am still heartbroken. I have spent so much time working with a naturopath to fix her that I haven't enjoyed her since. She has food allergies had a pylori infection and tested high for organic solvent toxins. She has improved greatly with diet alone but is still ticcing mildly. I want her well so I will continue working on her but in the mean time we have decided to try tenex for her tics. She has only been on it a week and not much improvement. School started today and of course I am worried. I am encouraged by your message saying it takes a little while to see improvements even with medication. I spoke to her dr today about the prescription and she seemed to think it should be working by now. She even mentioned antipsychotics as a next step. I would never do that especially with the mild tics we are seeing. After reading your note I am hopeful that the tenex may just tqake more time. How long has your daughter been tic free with medication? I may even ask our dr specifically about topamax if the tenex is not effective. She is very sleepy after upping the dose. Did you experience this with your daughter at first? Do you know much about the difference between tenex and topamx?

 

Well I am happy for you and your little girl! I love hearing good stories on this forum

Kim

 

Hello to everyone! It seems a bit since I have been able to have computer time. I went back to work in January and its been quite an adjustment period for me to get back in that world again.

 

We are now on Spring break so I am breathing again! LOL

 

House is clean, laundry is done, errands are done, supper is even already prepared waiting in the fridge to be cooked at dinner time.

I even did my salad ahead of time today. My daughter is playing nicely with a playmate that is also over the house.

 

So here I sit with my computer for the first time in what seems or feels like FOREVER!!!

 

First off I would TRULY like to aplogize to those of you who have sent me personal messages!!! I am so sorry. I would every once in awhile scroll through the boards late at night but never realized you actually had to be SIGNED IN in order to receive your PM's.

 

I wanted to say hello to everyone and give you an update on my daughter. We are still going strong and are still tic free.

We have remained on topamax, but only 25mg. She is 45 pounds and this is a low dose for her weight but my husband and I agreed that we would never increase. Most side effects listed with meds are from adult doses and we have never had any side effects at all.

I also met a very nice Doctor. His daughter attends my daughters school and is also in her class.

We got to talking a bit back right before I started the topamax and the one thing he told me is that....there always may come a time for meds and that everyones situation and circumstance is different. (He does not vaccinate his children by the way) And this is a DOCTOR!

Anyhow we talked for a long while and he told me if I walked away with anything to always remember when it comes to meds....START SLOW AND STAY LOW. He said the first thing people do when they do not see a result is to increase. They never give the body enough time to adjust to the medicine and see the benefits before the doctor orders an increase.

I followed his advice when we started the topamax. Everytime we saw the doctor they always wanted to increase!!! But I refused and I am so happy that I never did. We started on topamax at 15mg for 2 weeks and then increased to 25mg and never went up from there.

Just when I thought it may not be working....it did and things have been wonderful since. I guess what I am trying to say is that starting meds is a decision that I can only hope that no one would ever have to make. For us it just came down to a quality of life.

My daughter was melting away emotionally and so was everyone else in the house. I don't even like to think about that time.

We also had to take out a loan just to pay for everything we did back then in order to treat it naturally.

 

The only other thing she takes is a multi vitamin. We were using the xtend life brand and I still use them myself but I recently switched her to the new one out from Mercola.

 

We have and had visited a new neuro. If any of you remember our plan was to come off from topamax to see where she was at and to what degree the tics would come back at. So we have the go ahead now to stop the topamax.

My husband and I have deceided to wait until school lets out to do this. She is a VERY happy girl and loves school and I do not want to mess with that just now. Not to mention she just finished with SAT'S and it would have broke my heart to have the severe tics interfere with her tests and her emotions. She is doing EXCELLENT and even seems advanced for her age in school and she is SO excited about starting 1st and 2nd grade!

 

The neuro also told me because we are on such a low dose that there would be no need to wean down and that we could just stop all at once. My husband and I deceided to NOT do this. We are going to divide her cap in half for a week first.

I am scared thinking about what might come but also I have hope that the tics will just be gone or at best.....just little minor twitches here and there that will have no effect on her emotionally.

 

If things get bad again, I will ABSOULETELY put her back on topamax without even thinking about it.

But only at the dose we have remained on.

 

We still remain as green and pure as possible in this house as well. All our shampoos, soaps, cleaning products, laundry detergents are all natural. I just started using the method brand a few months back and am HOOKED!!!!!!!!!!!! I LOVE THEIR STUFF!

 

As far as food, I buy all fresh and organic when possible. We do though go out to eat and she eats whatever she wants with a little help from Mom in how to pick the most healthy choices available (we love crispers)!

 

The only frozen thing we do once in awhile is frozen pizza. We found a real YUMMY one!

 

We have found all natural fruit snacks, cookies and all at different stores and there is a really good brand called "Annies" everyone MUST try these! We buy them at Target.

 

We eat alot of potatoes and chicken here LOL. Her favorite lunch is just two pieces of bread (nature's own) with shredded lettuce, cucumbers, olives, peppers on it.

The food thing for us I guess was easy because we really didn't have to change it that much. The offenders or should I say "KNOWN" offenders were easy to get rid of.......I just STOPPED buying them. You would be surprised what kids can get used to if there is just nothing else availble for the hungry tummy's!

Her favorite and drink of choice is water!

 

In my daugters case her tics got so bad she would ask me before she put anything in her mouth! She would say will this make them come back??? In the beginning she even refused ice-cream. Tuff little thing for a 5 year old.

 

We are not sure if the healthy decisions as far as food and products also have an effect on her tics going away but it wouldn't matter, its just a way of life for us and pretty much has always been. I dislike all the YUCKY stuff in food these days and always have. I am just not so sure it had any effect on her tics at all. Don't get me wrong....the healthier choices we make will make us healthier there's no doubt about that but my daughter never ate the junk before her tics came and they came anyhow. When we went on vacation one time when her tics were at the worst.....they all disapeared!!!!!!!!!!! for the whole vacation! We even talked about moving at one point.

This was also ironically the worst she ever ate in her life! Who knows what we were really eating at all those fast food places!

I know there can be a sensitivity to some foods but I do have to say that when I was younger my MOm (the health freak) had me tested for allergies (food and all) and the list of what I tested positive for was too overwhleming for even my Mom. I know there is more junk in the foods these days but she never elminated anything from my diet and I still eat all the foods that I tested sensitive to.

I am sure we all get a little bloated and gassy...thats the food! I can actually tell when I have ate something that I am sensitve to because of the digestive part....but I eat it anyhow LOL Green peppers and eggs are a big one for me, but I just don't eat them everyday.

 

So I guess even the healthy food can cause some problems. Maybe just everything in moderation is best. (But leave out the chemical junk)

 

I sure hope everyone is doing great and I wish gods speed to those who may need it.

As always....you are ALL in my prayers.