emma1

I asked our doctor about using L-Carnitine, and so he checked my child's carnitine level. Today I found out that it is in the normal (average) range. So, my question is: Could I still use carnitine for verbal tics? My doctor (who is just our regular pediatrician, but who has had a lot of info on PANDAS) seemed to suggest I would only want to supplement (with L-Carnitine) if the carnitine level tested low.

I find that very interesting, as anxiety is one of our triggers. Can you tell me how you found a reputable hypnotherapist.? Thanks

I believe the search for the "perfect" vitamin is difficult. I looked for months and months. Because we are dealing with a PANDAS/autoimmune issue, the Grapeseed and Omega 6 would not be good. Also I note that there is manganese. I had a bottle of the Everyday that I haven't tried yet because I read in the archives that manganese could contribute to vocal tics. But, every child is different. Hope this works out for you!

What is the different between the two forms of l-carnitine? Any restrictions/things to look for when using it? Thanks for the info on this! It sounds like it can be extremely helpful!

ad cci, Can you tell me more about l-carnitine and its use for vocal tics. Did you use a particular brand? Also, what dose did you use, and did you use it long term? I know that I've heard of this -- do you mind telling if the l-carnitine stopped the verbal tics totally? Thanks, Em

Michele, I am so very happy to hear of your son's success!!!! No tics -- that is just so fabulous! One of my children has struggled with handwriting and we did OT for quite a while. My experience was -- and each child is different -- that it was more important to do something every day. So, while the OT was helpful in giving me a lot of great ideas, doing it only 1/2 hour once a week wasn't enough. We tried several handwriting programs -- Handwriting Without Tears works really well for some. For us, it was just not helpful at all. What finally worked for us was a combination of things. First, we really "worked" the hands -- piano lessons are actually really great for this. Also (and kids love this) buying bubble wrap and letting them pop the bubbles. Clay is great to work with because it is harder that play-doe. Squeezing a stress ball was also helpful. Then, we did a program from a book that I bought. It uses a Brain Gym exercise, and it takes about 10-15 minutes a day, and you are supposed to do it 5 days a week. My child liked it at first, but later, not so much. I found playing music really helped us make it through. The book is Brain Integration Therapy by Dianne Craft. If you Google her name and the title, her website should pop up. It is quite inexpensive -- all you need is the book, large sheets of paper, and crayons. It involves making large sideways figure 8s, and then making each letter. Although all the activities helped get the hands ready, I think that this program is what actually made the handwriting readable. I could really see that this Learning Breakthrough thing might be helpful for gross motor - I've also heard martial arts is supposed to be good for both attention and gross motor (and, especially for a boy, might be really fun). Em

Michele, You have stopped all supplements then? I stopped everything, but the PenVK and the inositol -- and I try to remember the probiotic because I don't want the antibiotic to creat a NEW problem. I have read a lot about this Learning Breakthrough and it sounds good but who knows. The DORE program is supposedly somewhat like it and it is very expensive (as in thousands of dollars). I just wonder if PANDAS ADD is the same as regular ADD. The program is based on working both sides of the brain, and seems to imply these kids do not have good balance and are not athletic. My daughter has great balance and is very athletic (though my 7 year old might fit their profile so perhaps I should get it and let them both give it a go).

I have read a lot of the posts here about ADD or ADHD being one of the major symptoms with PANDAS. I was researching this the other day, and I came across a program called "Learning Breakthrough" which I think might be something like the very pricey DORE program. It is based on the Belgau balance board and balametrics, and does seem to have some research behind it. Ironically, I went to a school function that evening, and during the session, someone mentioned this program in a positive (but brief) way. Has anyone ever heard of this or used it?

Kim, I totally agree with you! There is a family is know who goes to a school in our area (but not our school). Her child has significant issues with ADHD, and she put him on a protocal of fairly high dose fish oil (based on significant research, BTW, which she clearly understands). Although everything is not perfect, her child has shown dramatic improvement. Anyway, during a school conference, after the school commended the improvement (!), my friend mentioned this, and someone at the school asked if it was all under a doctor's supervision. She said no, but that she had researched it, and gave the names of the books, and even briefly stated the research studies. She said the person in the meeting became so upset, that the he basically told her she was a bad mother and that she could be killing her child. My friend left in tears, and was scared for weeks that this person was going to call child protective services (as he had mentioned that while berating her!).

I think -- if I had the opportunity to do it again -- I wouldn't tell the school. I know that sounds crazy, as certainly I thought I would tell them and they would offer additional asistance to my daughter, especially since she had always done well previously and is basically a sweetheart. However, I think what happened is the various teacher's talked among themselves (this IS high school afterall), and then put my daughter under the microscope. It is kind of the opposite of making a good first impression. Now, everything is looked at more critically. I tried to go back in, and "fix" any misperceptions, but it was clear that the damage was done.

Welcome to my world! My daughter's symptoms stop/reduce drastically while on antibiotics, and come back (almost) immediately when she goes off. She had high titres a few months ago, but we haven't checked them recently. She is on long-term low dose antibiotics. I do not know if that is the best option, but it is a quality of life issue for me. On the antibiotics, it's all good. Off -- well, not good!

I just wanted to say -- any of you who found help at your school should count yourselves so very lucky!!! At one point, I went in and spoke to one of my daughter's teachers about this condition. It was a huge mistake on my part. The teacher has treated my daughter as if there is something "wrong" with her ever since, and has significantly lowered her expectation of what she believes my daughter can do.

My daughter has strep induced tics/ocd, which are pretty much under control -- not perfect, but what is? She wants to paint her room -- I have been putting it off as I am afraid that the fumes, smell, something, anything, will set her off again. She is older (16) and has now said that if I won't have it done, then she is just going to buy the paint and do it herself with her friends!! I don't know what to say -- her room does need to be painted, but. . .I just don't want to have everything spiral out of control. Does anyone have any advice on this??? Thanks! (Sorry if this seems petty to any of you dealing with larger issues. Believe me -- I have been at the point where our issues were much more centered on just making it through the day!)

I have a child the age of your children, and would love any and all suggestions of good books to read aloud, or games to play. I am always looking for good ideas, and any that increase concentration and attention span would be ideal.

Our family has gotten some type of upper respiratory infection -- not the flu and not strep. Everyone has had it, except my PANDAS child. However, as sometimes happens, my daughter is exhibiting more tics/ocd, even though not ill like the rest of us. I know others have experienced this, but don't remember what, if anything, one should do? Should I increase the antibiotics, or wait it out? The symptoms aren't dramatically increased, but I am noticing some where before there were none.

I just wanted to clarify re: Omega 3 and 6. In a discussion "PANDAS vs. TS -- Supplements" Chemar wrote the following: basically, the short version of a complex biochemical mechanism is that omega 6 stimulates the inflammatory response via the prostaglandins...great in people who have a balanced inflamation system but not good for those with autoimune illnesses where inflammation is usually a primary factor. Omega 3 dampens the inflammatory response so good for autoimmune people. Immuno modulating substances, of which zithromax appears to be one, are those that return balance to the immune system, which is hyperactive in those with autoimmunity. So one is neither boosting nor damping it with these but rather keeping it at a modulated level. Anti-inflammatory drugs (eg steroids) tend to supress or damp the immune system. Modulators keep it at an even keel.

Just wondering -- do you know what the "cure" involved.

Michele, You do have a full plate! I have four kids, a husband who works late, and a dog -- but I am not running to the chiropractor, so you win. We have been using only PenVK and Inositol (500 mg twice a day) for about two months -- only that. And she has done beautifully. I have the box of Coromega, but haven't used it. I had been using Culturelle, but had forgotten about it over the holidays (funny how your mind goes to other things when the symptoms die down and can't think of anything else when the symptoms flare!) but when I started reading posts about yeast, I did start that up again today. I know antibiotics can cause yeast. Carlson is a brand name of a purified fish oil (omega 3 only - no 6). I had read about it and feel that it is pure. And it didn't have omega 6 which Cheri (Chemar) said boosts the immune system. But. . .a few days into it, I thought I saw more symptoms, and so I stopped. Perhaps I should have kept it up for a longer time, but I didn't. I will say, I had heard about fish oil being great for health and she was taking fish oil when the symptoms first started. I don't know if that means anything because I do believe her symptoms are definitely strep related.

Mark, I had heard there were other cases of PANDAS-like symptoms developing in later teen years, but you are the first one I know of (other than us). I totally understand the oppositional thing (at least our form of it). I know that a "bad diet" will affect my daughter -- but sometimes she eats things she knows she should not. And, out of the blue, she will start complaining about taking the antibiotics. She wants to know how much longer she needs to take them -- and we simply don't know. Also, she is often not all that open about how she is feeling. I have to watch her to see if the antibiotics and inositol are working. She just doesn't want to talk about it. We used Zyrtec this summer for allergies, and that seemed to help the tics. But this winter, she stopped the Zyrtec, and I noticed no change (no increased symptoms). She takes 1000 mg of inositol a day. I am not sure it helps -- haven't had the nerve to go higher. Some have said up to 18 grams is necessary! Cheri (Chemar) had written that evening primrose oil (omega 6) can boost the immune system and should not be used for those with autoimmune disorders (which PANDAS is). You might want to check archives for her explanation, as it did make sense to me. Omega 3 is supposed to be good, though some have a reaction to fish oil.

Michele, I bought Carlson's, but I thought I saw an increase in symptoms, so I stopped. I then bought the one that you mentioned (Coromega). But things have been going so well -- I haven't given it yet -- a little afraid of rocking the boat.

I am really very concerned about all of the vaccines too. I honestly don't believe they are safe for all. On the other hand, I do believe some of the vaccines are helpful in preventing serious diseases. So, what to do? A few of the vaccines I would forget (chickenpox, for example, I don't believe that one even works!) and I don't think I would give pertussis after age 5 (my doctor said that before 5 it can be fatal, but after, you just get a bad cough -- it is recommended now for older kids and adults to protect them from getting and giving it to infants, I think). I did three separate shots for MMR -- and if I had to do again, might even skip the R! But others -- polio, etc. -- I would be afraid to bypass. Right now I am researching the meningitis vaccine as it is recommended for my daughter in the next couple of years. I know it is a real threat, but I hate to give her something else that might shake things up!

Mark, I could not tell -- did your son develop tics/ocd at as a teen -- or has it lasted into his teens? I ask because my daughter got strep at 16 years old and developed PANDAS-like symptoms. She had high strep titres. Honestly, nothing worked except antibiotics -- then there was a dramatic improvement. We also give inositol for some lingering ocd issues. We try to stay away from omega 6 and 9 and Grapeseed Extract as I believe those are immune boosting, and should be avoided by those with auto-immune issues. We do pretty well -- except when someone in our home becomes ill with just about anything (doesn't need to be strep!). Then I see an increase in symptoms, even though my daughter might not even get sick with whatever the other person has.

bmom -- Unfortunately, every child is different -- it would be sooooo much easier if there were just a diagnosis of PANDAS and then a single treatment! However, I wanted to tell you that for my daughter (who has strep related issues) -- she did better off of the Bontech. I had started her on Bontech and then on daily antibiotics. The Bontech didn't make a major difference. The antibiotics made a huge difference -- but there were still symptoms. It wasn't until I stopped the Bontech -- and continued the antibiotics -- that we got to the point where I felt pretty good about how she was doing. She is on daily Pen VK right now. From this board, I am thinking that it might be the grapeseed, as that boosts the immune system, which is not great for an autoimmune disease. Omega 6 and 9 are also to be avoided. Hope this helps. This summer, I had her on Zyrtec too -- and suprisingly that seemed to help. I stopped it during winter as she didn't seem to need it, and I saw no increase in symptoms.

I so understand flying on your own -- I still haven't been able to find someone to help me with comprehensive dosages. I have a daughter who has a strep related problem with tics/ocd. The antibiotics have pretty much taken care of the tics, but the ocd is still there somewhat and I have used Inositol. I started with a 500 mg capsule, and then moved up to 2 capsules (1 gram). I believe 500 mgs would be 1/4 teaspoon, but check your bottle. Some have gone up as high as 18 grams -- if you google this, it shows studies where this amount has been used. I have been afraid to go over 1 gram. I would be really interested if others have gone higher and feel comfortable with it. My daughter is also taking it morning and evening, along with the antibiotic (Pen VK) -- does anyone know if that is OK?

Cheri, Thanks so much for posting the link!! I definitely think there is something up with this vaccine. I mean, a lot of teens have shots (flu, allergy, etc.), and I never heard of so many fainting!! Does anyone know anything about the meningococcal meningitis immunization? It is still a couple of years before I have to decide on this one, but I know it is recommended before college.