emma1

OK -- I can totally relate to this! My daughter had repetitive thoughts that were making it difficult for her to participate in life (couldn't listen in class because of the same thoughts -- not class related -- going through her mind, etc.) It was making her very unhappy. Our symptoms started with strep -- so we switched to zithromax, but that did not seem to solve our issues (completely) this time. Chemar is the expert on this. She turned me on to Sam-E and inositol and cognitive behavior training. We tried them all, and I don't know specifically what helped because I didn't do what you are supposed to do (try one thing -- wait -- try another) -- but something, or the combo, did help a lot.

I am not sure exactly what to say re: progress. A little while back, we had an "explosion" of ocd while on the Pen VK. I tried the zith, with the doctor's approval, and waited, but things didn't seem to be improving. Then we got to day 5, and I had been told to give one 250 mg cap, and things continued without improvement. I conferred with Cheri (thanks Cheri!!!!) and started her on Sam-E and inositol and a probiotic. We also saw a therapist. On Day 10, I tried 2 250 mg caps. Somewhere in there, everything got good again. So I am happy, but because I tried more than one thing at one time (adjusting the zith while she was also gearing up on the Sam-E), not sure exactly what is helping the most. I am pretty confident that the Sam-E is helping; less sure about the zith -- but since everything is good, I'd like to keep it all the same for a while at least.

My daughter is on 2 tablets (500 mg) zithromax every 5 days. Does anyone know of any papers, research, etc. that can be shown to a doctor to support this? My doctor has concerns about using this long term. Also, for those on it, do you have any blood tests, etc. done (that is, do you need to monitor anything)?

I could use some help understanding the way magnesium works. I know that the magnesium baths/foot baths are supposed to detox toxins. I think the pills/capsules promote relaxation. I would have thought the cream worked the same way as the capsules (relaxation). Surprisingly, however, I have seen two places where they promote the cream for use after the swimming pool for detoxification. My kids love swimming, so it would be great if I could use the cream as baths are not that popular during the summer.

I had asked a question about the magnesium creme previously. I know people take magnesium capsules for relaxation and calmness. And, I know epsom salt baths are not only calming, but pull out toxins. I would have thought that the creme had the effect of capsules (calming) but read a doctor's suggestion on another site to use magnesium creme to pull toxins out after being in a chlorinated pool. I don't really understand how that would work (the epsom salt bath I get). So, I am not the best on to answer your question. Though on the creme I am purchasing, it suggests using on different areas (not the same one). Do you feel you need to put it directly on the tic for it to help? I wouldn't think so. However, except for the fact that the face is sometimes more sensitive than other parts of the body, I wouldn't see a problem with using it on the face

Cherie, I saw you said that -- do you make your own cream base. (I think you are better at some of these things than me!!)

Cherie, I did see the info on yeast. I give probiotics and she eats yogurt -- would I need to use something else to actually "treat" for yeast? Yeast is one thing I mentioned to my regular doctor, but he was surprisingly unknowledgeable (basically said that if she was not having gastrointestinal issues, then yeast was not a problem).

I am looking at this website: www.ourkidsasd.info and there are two creams -- one Our Kids and one Kirkman. I had planned on getting the Kirkman as I know that brand, but the Our KIds one is talking about some ingredient in the Kirkman's one as if it is not so fabulous. Could y'all take a look and let me know what you think?

My daughter has never been typical PANDAS because this all happened when she was 15 -- but there have been documented cases of strep induced tics/ocd/adhd (PANDAS symptoms) in adults. So, as the strep titres were really high and the symptoms had started on a dime (as in one day, nothing, and the next day, OMG!) my doctor said we should treat with antibiotics. We went on amoxil and the symptoms went away; we stopped amoxil, the symptoms came back; we started low dose antibiotics, the symptoms mitigated but didn't totally go away; her sibling got strep, she did not get sick, but had increased symptoms -- all this led us to believe it was a PANDAS-like illness. Then, we had this "burst" of ocd, which doesn't seem to be affected by the amoxil, or the augmentin, or the zith. But she is having none of the symptoms that originally caused me to rush her to the doctor -- I mean, one day she just woke up with a vocal tics and, at that time, a counting thing (for a reason she couldn't explain she had to count her steps and had to stop on an even number). Now, everything is going on in her head. To the outside world, she appears perfectly normal. (Though she is sure everyone knows something is wrong, and she is sure everyone thinks she is acting strange.) She had friends over during the week-end and it looked completely typical. I am praying that the SAM-e helps. I am exhausted -- if this doesn't help, I'm not sure what to do. I do understand she could have had a PANDAS-like ocd and now she could have a "different" ocd -- but geezsh -- how many rare things could this child possibly get!?!

About a year ago, my daughter had an episode (that is a distant memory now) of tics and ocd. It was dramatic. I had absolutely no idea what was going on!!!!! The doctor diagnosed strep-induced symptoms because of high strep titres. We started antibiotics, and most all symptoms stopped (they were minimal, anyway). So, we have been going along, and then my daughter confessed that she has been having terrible thoughts and she has to count in her head, or she might say something awful, or something bad might happen! I cannot "see" anything -- except she was a little spacey. I have tried zith -- which I really thought would help -- but no change. No other symptoms -- just these terrible thoughts. Our doctor is now saying that perhaps the ocd is not PANDAS-related, but "regular" ocd. I think I have finally pushed him to the extent of his expertise here, and frankly he isn't helping. I am freaking out (quietly and privately, but freaking out just the same). My daughter did not want to go to school today, as she said she cannot concentrate. She says the ocd is ruining her life, and that she is never going be able to lead a normal life. She said her thoughts are "bad" and that she must be a bad person! (I did ask if they involved her hurting herself or someone else, and could tell by her shocked expression, that was not it -- I felt bad asking, but thought I needed to know.) It is breaking my heart. She is the sweetest, kindest girl you would ever meet. She is 16 -- a good student, cheerleader, soccer player, popular, and before this, literally had everything going for her. I have started SAM-e (thanks Cherie!) and have scheduled an appointment with someone who does CBT (am hoping she will actually go). I am still giving the zith, probiotics, inositol, some magnesium taurate, and I started zyrtec up again, in case seasonal allergies are playing a role. I have given gaba when she was speaking with me and got upset and was crying. Any help would be appreciated. . . Is it possible that she had strep-induced symptoms and now has regular ocd? Did she ever have the step-induced symptoms at all? If not, then why did the antibiotics initially help? But if it is strep-induced, then why isn't the antibiotics helping now. Sorry this is so long and disorganized.

mack5mom, I noticed you said you have thyroid disease. I have hypothyroidism due to Hashimoto's (which is autoimminue) and I know at least one other mom here with a PANDAS child has an autoimmune issue (Michele?). Since PANDAS is an autoimmune issue, it does make me wonder if there is some kind of genetic component here. I am not sure how this helps us help our kids, but I do keep wondering about this.

I am going to talk with the CBT person, I think. I am planning to go talk with her first, as my daughter is not excited about going, and I don't want to waste a visit having her go to someone who isn't going to work with us. Cheri, what you told me made total sense. Cherie, can you tell me why you feel PANDAS ocd is different, though? Do you think that the CBT will help the PANDAS-type ocd? Once again, thank you!!!!

A friend recommended that I try magnesium cream for my daughter. I had used magnesium taurate at one point, but stopped when I started the antibiotics. Can anyone tell me how magnesium cream works? And, how does one use it? I know I have had a lot of questions lately and I truly, *truly* appreciate all the help I'm getting!

Do the white ones happen to how a manufacturer or brand. I would love to get some without the red!

The doctor experienced with CBT for ocd (think I finally found one!) is not the one experienced with biofeedback. The one who does biofeedback, seems to specialize in these types of therapy (biofeedback, neurofeedback, neurosensory reintegration, and "open focus"). His office said he does do "some" CBT, but I got the definite impression that this was not his area of expertise, and that his therapy typically involves more of the before-mentioned therapies. Cheri, I honestly didn't know there was much of a difference. They kind of grouped them all together. I am a little concerned about getting the "right" therapy as my understanding is that the doctor would make recommendation after some type of testing? I was at first excited about the biofeedback idea -- though they did say that it was $150 per session, and "typically" took about 40 sessions! Do you think I should try CBT first? My daughter is annoyed enough about the ocd, she would probably go for help somewhere -- but 40 sesions, 3 times a week -- not sure if she would actually do that! She is basically bothered by intrusive thoughts that she just can't get out of her head!

Kelly, forgive me if this is elsewhere on this site, but has this doctor recommended particular antibiotics as better for PANDAS, or has he recommended any particular nutritional supplements as helpful. We have had total remission with antibiotics, but since an illness over Spring Break have been struggling with ocd issues (which are less troublesome since starting zith, but haven't totally remitted.) Thanks!!

Has anyone tried biofeedback for ocd. As I was trying to find someone experience in CBT, I found someone promoting Biofeedback. Is this effective for ocd, or would you try CBT first? Thanks!!

We finished our week of zith and now we are supposed to use once every 5 days. My doctor originally said I pill (250 mg). But I noticed in an old post Ronnas is using 500 mg -- that would be two pills. My daughter is 16 and about 125 lbs -- what do you think -- one or two pills? I am thinking she needs two. Also -- and I don't know how I missed this -- the pills I have are red! Does anyone know if there is a zith without artificial colors? We switched from amoxil to PenVK because of the artificial color. Thanks!!!!

I have a child who has been wanting protein shakes -- I have been looking at Pro-Optimal Whey Protein from mercola (kinda pricey). Any opinions on this one?

Hi! Mack5mom, what are your child's symptoms? Antibiotics are the first line of treatment. However, antidepressants are sometimes prescribed for ocd symptoms. I have NOT tried them and would really like to find other avenues -- but I do believe that antidepressants are "routinely" used for ocd, which can, at times, be a part of PANDAS. The anti-seizure meds have me boggled though -- I have done a lot of reading and research and that has not come up.

I am using Jarrow powder. For that, 1/4 teaspoon is 600 mgs (1000 mgs = 1 gram). I assume your sample didn't come with a scoop? I would try calling Kirkman Labs -- I bet they have someone in customer service who could answer your question.

For those on the azith, and had a child with ocd issues, did you notice an improvement immediately? We are on Day 5, and the ocd is still there -- does that mean this is not going to work? What about other supplements -- do you use anything else with the azith? Thanks!!

Michele, I think this all goes to the fact that most do not really understand the issue at all. I would not do anything to separate your child from his friends, or single him out as different!!!! My daughter has learned to blend, and so I have stopped saying anything as it appears my comments at her current school brought us more problems and no help at all. However, I am concerned about the obsessive thoughts. I thought it was ADD -- she blew a math quiz and usually she is a math whiz. Turns out she had been having these thoughts during classes, and so she missed critical material. Otherwise, I wouldn't have known anything was going on, except that she was acting ever so slightly spacey.

She has only really spoken with me about it once. She said that she will hear or think about something, and not be able to get it out of her head. She will, I believe, just think about it over and over, and not be able to stop, even though she wants to. It is affecting school because she is missing instruction while all this is going on. She used to then want to do something to make it stop (like counting to a certain number, etc.) but she has pretty much stopped all of that (with effort on her part!) -- which is why I didn't know there was a problem until she told me. I thought it was ADD until she explained why she wasn't paying attention. I hope the azithromycin works. I want to try CBT but none of the therapists have even heard of PANDAS, which does have me concerned.

First, I want to say "ilovedogs" that your situation is exactly why I find this sooo frustrating. I never seem to know when things will flare. You plan a relaxing and vacation, and boom, not so relaxing. My thoughts and prayers are with you!!!! Hope you figure it out. Cherie, thanks so much for the info on CBT. I am trying to find someone now. It is so hard. I am not getting past the receptionist. Then they want me to bring in my daughter and have her talk with the therapist. She doesn't want to go in the first place, so if I choose poorly, I will probably never get her in for a second visit, or to a second therapist. The pressure to find the right person is overwhelming me! However, all the info you forwarded was very helpful, and did make me decide that if I could find the right person, it might really help my daughter.