melanie

Hi Pat I had a hard time getting anyone to respond to this question myself.I had one person who swore to this 1 person.There is a DO in NJ where i live DR neunbrenner(sp) Hes in Edison his web site is full of info But I couldnt get any person to tell me anything . The drs who sell them love them Its hard .Also I do neurofeedback with Danny (I havent done it in 2 weeks )I think he got more anxious after.He would fall asleep everytime I wanted to give him a rest to see how he would do. I will try it again this summer .Ps my insurance did cover the feedback. Let me know more about the keifer and where to get it how it works (in simple terms) Melanie Hi Melanie: Did you say he got more anxious after having the neurofeedback or just when he stopped having it? How long did you use it? Yes, the people who have an interest in HBOT (sell, rent, etc.) are more likely to give positive reviews, but I wanted to hear both sides of the story, especially from people who have used it long-term to see if they felt it was worth it. The kefir (I feel goat milk is the best), but you can get cow's milk too - probably more common, but more commercial - would have to look at all the ingrediets. They say even the cow milk kefir can be used by those who are sensitive to casein because the bacteria and enzymes in the kefir actually break down casein, so that many people can eventually tolerate casein in their diet again after some long term kefir use (3-4 months). The beneficial bacteria sets up colonies in the gut (whereas when you eat yogurt its only good for a couple of days and then it's gone). It has been thought to correct gut imbalance - by the large number of good bacteria crowding out the bad bacteria and yeast. It would take about 4 months to really get there, but you can see results within a couple of weeks. It's been thought that some of the aggressive behavior or spaciness is brought on by overgrowth of yeast or clostridia and then when you kill those with hardline drugs like flagyl or diflucan they can get a die-off reaction which looks about the same as the behavior you saw originally. The kefir does the same thing but slower and you don't see the die-off reaction as much. If you add s.boulardii for a while (1-2 months), it can give it an extra boost. Besides all that it contains a ton of B-vitamins and all the minerals they need, along with protein (essentially, kefir is a complete food). You should really google it and get all the facts. Pat If Hes allergic to cows milk your saying it doesnt matter ?

How much Topamax? funny because I read your post and I know I asked you this before but Im so overwhelmed I cant remember what you said How much does she weigh ?Danny weighs about 130 Melanie

Hi Pat I had a hard time getting anyone to respond to this question myself.I had one person who swore to this 1 person.There is a DO in NJ where i live DR neunbrenner(sp) Hes in Edison his web site is full of info But I couldnt get any person to tell me anything . The drs who sell them love them Its hard .Also I do neurofeedback with Danny (I havent done it in 2 weeks )I think he got more anxious after.He would fall asleep everytime I wanted to give him a rest to see how he would do. I will try it again this summer .Ps my insurance did cover the feedback. Let me know more about the keifer and where to get it how it works (in simple terms) Melanie

Thanks I just think my danny has something different.. Ive tried supplements biofeedback accupuncture and lots of praying supplements seemed to make things worse I just recieved his allergy tests back he does have some severe allergys according to the tests and he needed vitamine D hes going to get an eeg tues maybe they can shed some light on this Who knows Im just really depressed I feel hopeless He also has aspergers so maybe thats why ? Melanie

I have a question If the meds caused this and i believe they did in dannys case Abilify and seraquel made it worse how do you make it better HOW??? what can we do !!

Were going to go up on the topamax which usually means its never going to work .Dans tics are as bad as they have been .Its a constant tic with every foul word .Anyway the neuro hasnt returned my calls ,and i was willing to try one of her meds ,Maybe god has intervened(sp)so his psychiatrist said to go to 50 mg topamax untill after the emu at columbia next week.Well on the bright side (like there is one) I get to use the coupon... Melanie

He wasn't holding his breath. He was tightening up all the muscles in his face and neck b/c he was thinking really hard. That's what he tells me! Anyway, he was making his face all red and that's when it happened. To answer a prior question: no, there is no history of epilepsy in our families, but there is no history of tics either. Again, it's all part of the mystery we're trying to solve. You would think the neurologist would be real concerned ? I hope everything goes ok

What dosage of topamax is she on? If you dont mind..

Hi myrose but what does that mean? wouldnt the psychiatrist that prescribes this know this interaction exisits?how about the pharmacy? Melanie

Hi yes hes still on it 25mg 1xper day at night I see nothing its 2 weeks and I see nothing hes hitting a little now the tics are getting worse I really dont know what to do He is going to get an eeg next tuesday(they changed it) at columbia presp.his psych who prescribed it doesnt want to increase it untill the tests are back .Hes off the tenex and still on buspar for anxiety.I TOOK HIM OFF ALL OF THE SUPPLEMENTS except Vitamine D for now because I dont think any of them are helping I think his tourettes is different then some others on this forum.Everyone here seems to be younger and less affected. His are mainly verbal with some motor.I wish someone any MD anyone had a clue what to do or even cared I think they just dont know what to do.The rutgers PHD tourette program did finish their report I should be getting a acopy tomorrow Ill let you know Hows your child how is the topamax ? A coupon is weird huh? Melanie

kindof weird but for those of us that use it heres a coupon https://etrial.mckesson.com/topamaxconsumer...xCouponMain.jsp

Hi I looked into the naet Ill ask his DO about that tomorrow ,I have alot to do tomorrow . I had a bunch of allergy tests done on danny a few weeks ago no results yet I dont think its that I think its neurological.Hopefully It gets a little better the foul language is very diffucult Thanks and good luck on your final What are you going to be?

Im going to do a phone cosult with dr k I have to foward him some info first >Has anyone done this his secretary said my insurance should cover it does it? Info please

Danny does have aspergers ,and he is on topamax 25 mg I dont think its helping at all maybe it only helps with motor tics danny has coperlia(sp) I tired of this really tired ....I just want it to stop I have a hard time not being dissapointed I love him so much but the vittamines and food changes thousands and thousands on therapies isnt working I guess some people it just dosent work for .The mag worked when he had an eye tic but nothing works for this verbal stuff I hate all of the words he says I cant even believe he can say them or where he learned them .I know he cant help it but still ... Thanks for letting me vent

Ive givin up I need to find a medication that will help!! Ive tried everything exausted all apossibilities food changes everything I dont feel like Ive missed anything .I need some direction is there a forum like this one where there is people like you guys that have used medications that have worked ? Danny is 15 has no friends now his self esteem is in the toilet struggles sooo much Its time for another way .Im ok with this just need to move on PLease if anyone has a suggestion or a website that I can turn to I hope theres still some help He has a vocal tic coperalia ( Cursing) some motor tics hes sulutes I will write more

Hi Melanie, I would think 500mg 2x weekly would be adequate to prevent strep. However, would your doc be okay with doing 500mg daily for a couple of weeks in case their is a low level of active strep hiding out? also, the higher dose of Azith. would presumably have a higher level of anti-inflammatory/immune modulation. how is danny doing? I think you should also consider sending dr. K an e-mail. Even though Danny is older he may have some insights. I wonder if PEX would be helpful? It is interesting that Danny appeared to improve on Azith. and then declined when his dose was lowered. I know its very interesting and Im greatful that this Dr is willing to give him this .Im going to go to the dr today and try and get them to write me a script so I CAN have more zith to give him is PEX penicillin? He has an allergy to penicillin or he did when he was 5yrs old is that better? Melanie

Dr is going to put danny on 500 mg 2x per week.Is this going to be enough? I know its better than 250 1x per week but would it be better to cut them and do 250 4x per week?what should I do / Melanie

what kind of symptoms was she having that made you feel she was having an issue

does Kefir only come s a liquid product in milks and yogirt? Can you get it as a pill form?Why is it better that the other probiotics? What does it do to help the gut ? Thanks Melanie

hey great article hope I posted this correctly http://psychcentral.com/news/2009/05/12/po...xiety/5845.html

The rash was shiny, lasted for 4 months and the doctor said that it was a fungal infection and gave him an antifungal cream which has more or less cleared it up. He had the rash around his neck and a tiny little bit on his face, also on his chest and on his tummy. Thank you so much for all your advice. It is amazing how helpful people are. I know Im spelling this wrong but look at tinnia verse colar my husband has that he gets it when he sweats and its genetic not bad but it is a fungal infection he gets a soapy shampooy thing to wash with and it goes away in like 2 days he gets it mainly in the summer maybe its woth looking into it good luck melanie

Psych prescribed the topamax Neuro wants to do the eeg.I have to call today to see when he can get in hes 15 so he has options (she said)Ill know more today hes on 25mg of topa,ax not sure theres a theaputic dosage there Neuro wouldnot prescribe the topamax for tourettes but the Psy would for mood disorder.Ill writr more later. Ps hes home again day 4 sent him to work with his Dad .day 5 on the topamax and we had a bed wetting last night. What else poor kid !! Melanie

Danny is going to get a overnight EEG to check for seizures maybe related to his tourettes has anyone else had this ?