kimwal

I recently added just a regular teen vitamin to give to my son. After a few days on it my sons meds seem to be enhanced,,,, he started sleeping and staying drowsy. and raging. DO you think the vitamins made his meds more enhanced>>>

I would like to get my son tested for strep titres. What is the name for this test , and can I order it myself??

Hi!\ My son is currently on Haldol, tenax, and Lexapro. The Haldol is for the tics. He can have very severe tics, ( everything from cursing to having "urges" as he calls them to bite on his teeth to where they have chipped) to just shouting out. Haldol has been the only med to help, and believe me we have tried them all. Tenex is for the ADHD. And the Lexapro is for the OCd.

what exactly is the name of the test I should ask for. We did it several years ago, but I do not know the name and we are not using the same doctor that got it for us. Thanks! Also what are some natural things to take to boost the immune system??

WE never tried long term anitbiotics for the PANDAS. We did the titers testing and it was high. HIs neuro at the time never mentioned doing antibiotics. We tried other things, steriods to boost the immune systme, different diets, no sugar, wheat, milk etc. But none of that worked. WHat is a good company to get strep titers testing??? Can I order the test myself???

Those of you that are doing antibiotics for your PANDAS kids, do you also have your children on meds?? My son is on meds , in fact doing pretty well on them. I would like to try the antibiotic route, however, I'm afraid to take him off the meds, in case all the tics come back and he gets all messed up again...any suggestions???

This may be long, but I will try to keep it as brief as possible because I need some help! My sons history: He's 12. I knew he was adhd at the age of lets say birth??LOL. no really when he was a toddler. Absolutely no tics, or ocd symptoms at all. Then at age of 5 almost 6 he had strep. BAM about 3 weeks later LIterally one morning he woke up ticcing, nonstop, and severe ocd. ITs been ###### ever since. It has been up and down with meds, counseling etc. *What we'e done since* WE first stared trying meds. Some worked others didn't. We then found a neuro and I found out about PANDAS. We did the strep titers testing and it was high in whatever it is that suspects pandas. We still didn't know what to do. Eventually later, we tried steriods, nothing. We even tried IVIG. Only one time at a low dose. NOthing. Before all of this we tired everything, feingold diet, vitamin, supplements, no sugar, no wheat, milk, food colorings, allergy testing..... avoided what it said, nothing.... * So here we are again, back on meds, 3 to be exact. THe tics are now under control. I don't know if its due to the meds or just the wax and waning. He has very bad vocal tics. He has corpralia very bad when his tics are bad. He also has motor tics as well. Some of his doctors have even said that he has a very severe case of TS. * I;m not sure how much his present doctor knows about PANDAS, we had to switch from his last neuro because he got really freaky about "sin" being involved the TS, etc. This is the weird part. WE do have ts , ocd in the family. However it did not come out in my son until he had the strep...... Somehow I feel that with the PANDAs that maybe it could something inherited too. Like a some malfunction in the immune system passed down that is susceptable to strep or similiar infections. Anyway, what should we do now? I would like to get him retested for pandas/strep., How do we do this?? Can I send off for the test myself?? ANy new updates out there about pandas?? THANKS A BUNCH!!! Kim

We have tried this product. It only made my son more hyper. Its like a pyramid thing. Beware. THe more I said it did not work the more they said to Increase it, of course making more sales for them. Research it well. You could try it. Of course what works for one may not work for another. I suspect my son has PANDAS also. Good Luck

my sons doctor thought so... his tics started after strep... we felt so sure it was... after a very long and prayful consideration and testing that showed that there was still strep antibodies(something like that) anyway after alot of consulting, testing , praying our doctor suggested the treatment they had used for pandas oh gosh , its late and I cannot think now I;m so tired, but you know the drip you have to go into the hospital to receive the one the nimh was doing, it did not help either. This was a very hard decision to have to make because I know that it is still not used or guaranteed It was not the plasma exchange but the other one... ....I just feel like quiting meds, since there not helping him either and all the natural stuff too.... Maybe I jsut need to quit trying and just except this.......I just hate seeing him suffer so much..... Do you still think it could be pandas?? My sons doctor still thinks there is an association.... he wants to work on building my sons immune system... I 'm just so very tired, and feeling hopeless...

My son age 10 has severe Ts. ADHD, and OCd. We have tried almost every med. and every alternative treatment I know of. These natural treatments we have done are different vitamins, minerals, Bonnie Gr. Ts plus , chelation, treated for leaky gut, did a sugar casein /gluten free diet for about 2-3 mos. lets see what else.....magnesium, zinc, cleaned up his diet, and nothing worked to help him.. The meds don;t work hardly either. He has severe vocal tics, and he is just sooo hyper. He is also starting to loose friends We are currently trying something called Ambrotose by Mannatech. He ahs been doing this for about 2 mos...no change in that either. Ambrotose is a blend of special sugars(good not bad) that cover and repair cells helping them to communicate and function in a healthy way. Also, antioxidant, probiotics and enzyme blend We have done the vitamin mineral testing nothing really significant showed up. I am ready to give up on all this natural stuff. I know that it works for others but why won;t any that I've done help my son?? Why else is there to do, that might help...of course pray, and I do that every day too. Whats left??????

What is the difference between GABA, and 5-htp??? Are they for depression??

the moderators email is lester@helix.mgh.harvard.edu I had to email him a couple of times so keep on trying until you get on because its a great forum to learn different things from. I think we have tried almost everything for my son from meds to all kinds of alternative treatments. So far nothing has really helped. But,,,, we're still trying though. Good luck Kim oh yea, my son is 10 has severe ts. adhd, and ocd(not as bad ocd as the rest)

I read something you wrote Robin about your child doing the Feingold Diet... Does it help , considerably??? Like is all the time and effort put into it worth the difference it makes in your child??? We have tried sooo many different diets formy son. Gluten/yeast free , sugar free,oh it was so hard, and we did not see any results. I got all the feingold inf. but have not doneit yet . Does it help with adhd and TICS????? If so, how long before you see results??? thanks, Kim

I was reading the other post about natural ways to calm your child down. I have bought rescue remedy but have not used it yet///DOes it seem to help others/ Is there any meds that it will not go good with??? My son is on serequel/ What about the becalmed. Is it really any good?????? kim

My son is taking serequol now forl Tourettes and its working for him. It is a antipaychotic med. but the antipsychotic meds are often used for Tourettes. My son has a very severe case of TS. If your son does not have a severe case of TS then you might could try something like clonidine or Tenax. But anyhow serequol is used for TS. It does not say it is used when you read about it but doct;s often use it