bmom

CP, Have you noticed any help with the diet? Are you continuing it?

Faith, Believe me, I feel like you and I are in the same boat. I am getting so tired of not seeing some sort of pattern here. Anyway, you say you do see a drastic reduction with the wheat limitation? Is that gluten reduction or just wheat? Have you done the IGG? That is my next step, and I am wondering if actually going gluten free maybe an even more reduction? I know it sounds hard. (It actually sounds easier than what we are doing now) no tv, videos, or anything for months and still tic, tic, tic! I went online and there are actually quite a few snacks and things gluten free. I could think of a menu in my head that seemed to work ok. With summer here almost, maybe diet changes would be a good time now. At least that is my thought. Has your son always had a worst time in the spring? I read that pollen and wheat ingestion could be connected. Anyway, this is a case of the blind leading the blind. I am tired of fumbling around and hoping a good DAN or environmental doc can be of some help. I just feel like I cant let it go. How do people accept that it is what it is? I feel like there has to be something someone can do!

My son has been in a ticcing episode since March. I have tried different things and have a DAN doc scheduled for Sept. but I have noticed a few things about him that I was wondering what it may point to. He seems to have a lot of air in his stomach- does a lot of belching. I believe this is more than kids his age as it seems to me he can eat something small and still has a lot. He also eats more than most kids (even more than my husband). Many people have commented on it and yet he complains that he is always hungry. Would that point to something? Poor digestion? Acid stomach? Thanks for any thoughts. Perhaps I will try the potassium carbonate you were all talking about. Is it a supplement?

Michelle, Is her daughter still on the Clonidine? Did she feel it helped and did she have any side effects?

Faith, My son did the spit test and it seemed fine so I didn't give it. He has been in a waxing cycle for about 9 weeks and I realized that I have been giving him many new things to try and help. I decided to go back to Bonnie's alone and see if we can just help from there.

Faith, I am right with you. I can not for the life of me nail down the exact reason my son is ticcing. Perhaps there is more than one, but uggghh! I wish I could eliminate some things. Have you done an IGG test? I think this is our next step as I am tired of limiting foods and not knowing. I do know that screens seem to be a big (maybe not all) part of the picture. Does your son tic during lighting in stores? My son does while in waxing so I am guessing he is truly photosensitive. And yes, the games seem to be worse than tv. Perhaps it is the anxiousness combined with screens and he is on an LCD small tv during this time. I am wondering iif anyone with photosensitivity issues also has problems in the sun. I thought my son started ticcing one day again after a long day of being in the sun. Has anyone else seen this? I am also having my son see a DAN doc to see if we can figure out his issues. Faith could your son see his DAN doc again? Did you find this helpful?

Thanks Kelly, This came just in time as I just got my sons latest titer count-again normal range. I will give the article to his doc!!!

and also Pam and Nan, Could you please tell me the company you used to do the test? Oh sorry Pamela, I see that you already posted that as I looked back through. Nan?

My son has a little of some of these things mildy- poor handwriting, but readable. Worrier, but not OCD or anxiety. Inattentive and borderline ADD, but doesn't cause him trouble. Yet, when the tics hit he tics almost every second. I just can't figure that one out. There are weeks when he is tic free and then wham, every second. Do your kids tic that much or is it here and there?

Sorry, I am still trying to figure it out. I thought it would be a website, yet the assistant emailed it to me with pdf attachment. I really doesn't say anything new and kind of talks about the negatives of antibiotics. I only talked to her on the phone and she did not say which antibiotic only that to call if I want my son to meet with Dr. Murphy.

I am still flipping and flopping between DAN and Yasko approach as to which one I should start my son on. Could someone tell me that has used Yasko: I understand it deals with the supplements and heavy metals, yet I feel it is possible that my son may have pyloria, yeast, or food insensitivities. Does Dr. Mullen (Yasko doc) test for these things and deal with them as well? I feel that all things must be addressed yet I haven't figured out the Yasko approach (I have ordered the book yet not received it yet). I understand that the Yasko approach helps with what the child specifically needs supplement wise and addresses the viral and bacteria. Does she do anything else? Thanks.

You should truly feel blessed that your doc is willing to try this as my sons wont consider a short round. The question on the time frame for antibiotics: I just read an article that said it can take anywhere from 5-21 days to see improvements. My son's symptoms took about 6 days to see improvements, but his titers weren't elevated. According to Dr. Tanya Murphy's assistant, the antibiotics take longer to see improvement if the titers are elevated. At least that is what I thought she meant. I will try to post an article that the assistant emailed me, but I am computer challenged.

Great to hear you are having great success with the seizure medication for your daughter(whose name I also love too!) Just wanted to agree with you on the titers. It seems to be controversial. We have been doing testing for titers and trying to determine if my son is PANDAS. I would love to try to find a doc who doesn't go with the blood testing and looks at the whole picture. Seems to be easier said then done. I even got the impression that Dr. Murphy looks at the titer testing as I spoke with her assistant today, but I could be wrong. If anyone knows a doc. that does not determine by this, please let me know. Perhaps Dr. K. He is so far, yet I would travel if I was determined myself that this was the case. Anyway, hope your doc is willing to try antibiotic if deemed necessary based on the whole picture, It sounds like he is making progress, up to date on at least some knowledge of PANDAS, and a open mind on supplements. That is all huge!! Good luck.

Carynn, Was it a DAN doc. that discovered this problem with your son? Did he run a bunch of tests to determine this? I am trying to figure out how you pin it down.

Pudgeo, I am trying to decide if my son has PANDAS or tics not related to strep so could you possibly describe the changes your son has since his illness and a little about the onset? Thank you!!!!!!

Myrose- I have come to believe that every set back with my son leads me closer to the answer. I have gathered a little knowledge each time he has had trouble and I am hoping that the answer will come. I know it is hard to endure the hard times, yet I think it is Gods way of saying, "Look over this direction, here is the problem". Your set back has been huge, maybe the answer will be huge too. Praying this is so.

Coud you please give me info on the test you are talking about or the doc who did it? Doctors keep dismissing my son as PANDAS based on low titers, but I think he may be. I would like another test to see if he is or is not. Thank you. I am asking about the IGM test.

I was googling photosensitivity today as I think it is a part of my sons issues. It does say that it can cause seizures for some. For my son, sometimes flourescent lighting is an immediate response (we walk in a store and on come the tics) although I believe sometimes it is a delayed and build up response. Such as a little of tv is ok, but repeated doses cause trouble. The weird thing is, I also think the sun and a long period of time in it, can cause trouble too. I still dont know about that one though, yet I think so. Anyway, keep an eye on these things to see if it is a possibility. Claire has many posts on it if this seems to be a problem. The inflammation thing is something I have been thinking about and researching. I believe it is a big part of our kids problems. The causes vary, but the results are major problems for the brain. I think autism and tics are a result of inflammation in the brain. The brain just can not handle inflammation well. An example is that PANDAS is antibodies attacking the brain and then inflammation occurs. If I understand correctly, the inflammation causes the disorders. So, maybe the discharge caused inflammation and all of these problems are the result of it. Well, what caused the discharge? If you can find that out, you may be able to get to the bottom of it. Praying that tomorrow brings you hope and Monday brings you answers!!!

Your post is so sad as I know that feeling of wanting to protect them from other people. I realize people are just concerned, but it sooo has angered me before!! I also have the thought about my children's children. I can only pray that answers will be more clear on things like this by the time my children have children with all the autism research. I hope the morning will bring you peace and your daughter will have comfort. I just pictured her in the store whispering to you and my heart just goes out to you both!!!!!

I just wanted to say I am sorry for this time in your life. Perhaps it will lead you in the right direction though and you can get some answers. Thank God they did the test and did not just try to throw her on tic meds.

Thanks Chemar, do PANDAS symptoms wax and wane while in an episode? Do they sometimes go away for 2 weeks only to return or no?

I am getting the titers ran again today and thinking of starting some antibiotic today. I am trying to see if there is a PANDAS pattern here. Anything else? No sign of a sore throat.

I was just wondering, I am not sure candida is one of my sons problems and we dont have our DAN doc app until Sep. Yet I want to help him now. He is extremely light sensitive-screens, sun, and sometimes inside light can cause ticcing. I bought Candida clear and was wondering if he does not have it, would there be anything negative to taking Candida Clear. What I mean is, if it is not his problem, which I dont know, would it be bad to give it to him-increased ticcing etc.?

Something I was reading about diet and I am not sure where... I think an autism page about GFCF diet said that parents should give it 6 months as it may take that long for some. Ugh! I realize that is a long time before you see results. It also mentioned that for adults, they may have developed multiple food sensitivities and digestive enzymes may be the better route. Maybe that is an avenue you could ask your doctor about if you have no success with diet.

I was following the PANDAS trail with my son, but I am confused by this one as I am still trying to determine if that is the case: I thought my son was exposed to strep in March. He began ticcing frequently. His titers came back normal, but I had strep. He was treated for Zithromax, but 2 weeks on it the tics came back. Since then we seem to have been in this crazy cycle of a few weeks of no ticcing-2-3 then ticcing quite frequently and the tics seem to have changed. Do you Panda moms find that when your child has been exposed, their tics are in this pattern and stay the same, or do they sometimes change? The first time I thougt we had an episode with strep it was 6 straight weeks of the same tic- he added some on during this time, yet they did not go away or change completely. We are now in week 8 of this cycle of changing and going away and returning. Thank you all.