emma1

Here is how I understand the OCD issue with "bad" thoughts. They (our psychologists) say the child will worry and become anxious over doing something "bad" -- but the chances of them actually following through is very remote. (There is another disorder where the child does follow through -- but those children are generally not upset by the thoughts.) OCD children are generally upset, worried, anxious, etc., by the repetitive "bad" thoughts and the "bad acts" are often totally out of character for the child. I haven't found a complete solution. We are trying CBT -- though it has honestly, for us, been of limited help. We are on PenVK, inositol (1 teaspoon morning and evening), SAM-e, and mag taurate. Unless stress gets high, this keeps everything workable, if not perfect. I also find keeping my daughter physically active and busy helps -- too much free time and there is too much time to think.

I have been using Magnesium Taurate and came across this on Vitacost. Anyone try this brand, and if so, what do you think?

I have introduced fish oil twice (at least) and have decided not to give as I believe it does make symptoms worse (though I could be wrong). Interestingly, my daughter was on fish oil at a reasonably high dose when she started all this -- so it does make me wonder how it helps the immune system as my daughter had strep and then had the relatively rare PANDAS-like reaction while regularly taking fish oil supplements.

First, Michele and Betty -- hope everything is going better for both of you. I am very interested in this info re: parasites as it is something I have never considered even though one of my children has had a lot of stomach issues (and my doctor, obviously has never mentioned it either). How does a child end up with parasites?!?! Also, Betty, my understanding was that c diff was usually hospital acquired. Was your son in the hospital at some point that you suspected it? Thanks for the info.

Have you thought of trying s. boulardii which is a "good" yeast? It is not truly a probiotic, but does fight regular yeast, and has been suggested as a prevention for c difficile (a bad spore that can populate when antibiotics have gotten rid of all the normal flora). The reaction might also be to something else in the probiotic -- some have whey. Also, some have a "good" strep in them, which I find does *not* suit my PANDAS-like child at all (I believe the yogurt drink by Dannon has strep in it, even though the bottle has a fancy name for the combination of strains). We are on PenVK too -- and it does have a narrow spectrum, so I am also thinking that yeast is not as much of a problem with this antibiotic (at least, that is what I have been told by our doctor).

I cannot help you with the "why" part -- but I know I've read from others that copper and manganese should be avoided. I *think* the manganese was associated with vocal tics. I remember trying to find multis without either of these.

Can you tell me -- the one who recovered on zith -- how long did they stay on zith before recovery?

We went off zith and back on PenVK because my doctor was extremely concerned about the long term use of zith (she was on it about 3-4 months I think). At first, the antibiotic was amazing (symptoms off the antibiotic were through the roof; on the antibiotic, the symptoms were minimal). I am now wondering if the antibiotic is affecting symptoms -- we did not see an increase when I went back to PenVK. So my question is: Would you keep your child on suppressive antibiotic therapy to prevent re-infection with strep?

I am adjusting supplements, so when my daughter started acting edgy during the "lazy days of summer" I immediately thought it was one of the supplements or the combo of them. However, I now believe I have figured out that the cause is most likely the fact that my daughter is working out for soccer daily and she has a new coach who is critical and yells at my daughter frequently. She is in high school, and I know that talking to the school or the coach is just simply not an option. Another mom tried that earlier this year -- her sweet (and talented!) daughter ended up sitting the bench almost all season. The school explicitly said that they would "not interfere with the coaching process" and basically told the mom she was over-stepping. My daughter believes she is being singled out (which may not be true) -- but I know that the coach is being verbally critical in front of the entire team. My daughter handles it during practices, but then falls apart at home. She loves the sport -- so the situation "is what it is" -- I can't change it (can't change the program; can't get my daughter to quit). Any suggestions for helping my daughter cope? This goes on all summer!

I have been doing research on s. boulardii, which is evidently a "good" yeast. At least two sources indicated that this "good" yeast could crowd out (get rid of?) the bad yeast. I know one person (online) is doing this and believes she is seeing improvement with her daughter. Just a suggestion though, as I am definitely not an expert. Hopefully, someone else will be able to chime in.

Does anyone know exactly what serotonin syndrome looks like? Is it something obvious, or is it subtle? Someone mentioned a "change in mood." I have a teen girl, so we had changes in mood daily, even before all this started!

My daughter will get words "stuck" in her head. Someone will say something, and she will get a word(s) stuck there. She says it just stays in her head, and she cannot stop thinking about it. Our doctor seemed to think this was "pure O" (obsession) with some rituals (she sometimes used to count to a "good" number). However, under your explanation, it almost sounds like a "mental tic." What do you think? And what helps your mental tics -- anything?

OK, misery definitely loves company, because these stories are making me feel better! I often feel like I am the salmon swimming upstream -- most of the time, I am working away on this by myself. Earlier, I was trying to get my husband's opinion on the combination of supplements, and he informed me it was impossible for him to have an opinion as he didn't have a clue what I was talking about. I wish he were more interested, but that just isn't going to happen. I will say -- it is hard finding foods that are "acceptable" -- so many things I had thought were innocent joys of childhood (like M&Ms) are just soooo not good! I have the biggest problem with my sweet daughter, who understands clearly what is good and bad (most of the time), but sometimes chooses to just eat what she wants (especially when with her friends). So, my husband (at least sometimes) thinks I am over-reacting, and my daughter would probably agree. And, I have yet to find a doctor (who I can actually talk to as opposed to read his/her book) who embraces this natural approach. Right now we have just opened our pool -- with chlorine. It is our first summer with the pool, and instead of being a "luxury" of summer, I find myself holding my breath every time we use it. It is causing me "closet" stress (stress I can't talk about because if I tell my kids we cannot use the pool, I will be the most unpopular wife/mother ever! Oh well. . .

I believe the Dore program has closed its doors in England. I would check that out before investing in it. I know there has been a lot of criticism. I had thought about doing Learning Breakthrough, but just wasn't confident that eye/hand coordination and balancing were issues we needed to deal with.

Cheri, I especially hate to give up on the SAMe. It doesn't really take away the problem (the OCD), but it does certainly seem to make the problem less of a problem (that is, less troubling to her). If that makes any sense at all!

I just looked at the YouTube clip. My daughter is having ocd thoughts, which might be quite like "mental tics." At least, I believe they have the same impact -- very difficult to concentrate when your brain is busy with other issues.

The doctor I consulted was a psychiatrist who initially was pressing for an SSRI, which I didn't want to try until I had determined the natural approach wouldn't work, which I haven't determined yet. I had told him our history with inositol, SAMe and 5HTP. I told him that we had tried a little over 2 grams of inositol and felt there was some improvement, but that it didn't handle the entire issue. He had information about inositol (at least he knew about a study with it using 18 grams). He said he did not believe most would need that 18 gram level, but suggested that "if I was not going the Paxil route" he would suggest using inositol. He has not had anyone else try it. He said he would suggest using 4 grams, and he said it would take at least 6 weeks to see if it is working. I told him that (at 2 grams) inositol hadn't really worked alone, which is why we started SAMe. I told him that I felt that the SAMe kept my daughter upbeat -- basically she still had some obsessive thoughts, but they didn't get her down. She was able to go on, and have a reasonably happy life, even though she was still having some of the ocd. So, he said, he didn't want to mess with that. He said he thought that SAMe was used more for depression (and then we had a huge discussion about whether my daughter was "clinically depressed" -- I basically said that when the ocd was overwhelming, she was pretty unhappy -- but lately the ocd was disturbing, but not totally consuming her). He said he thought he remembered a study that had used SSRIs and inositol, so he said he thought it would be OK to keep the SAMe. (It was clear he was more versed in SSRIs than the natural supplements though -- so, I am still a little hesitant. He said the SAMe wouldn't help with the ocd. (But I find her overall simply happier and better able to handle life with it -- so I really hate to stop it. But, I would like to see the ocd recede a little more too. . .) So, by the time I got to the 5HTP, he had already agreed to the inositol and SAMe, and I think he just didn't want to add anything else, especially since I hadn't seen marked improvement with 5HTP. I haven't found someone yet, like you did Cheri, who can speak in depth to the supplements and come up with a combo program. I mean -- I was the one who mentioned both the inositol and the SAMe! We have tried CBT -- at least that is what the clinical therapist says she is doing. I thought there would be more discussion of exactly how to deal with the negative thoughts. . . I cannot say it isn't helping, but I am concerned that it seems like it could just go on and on and on, and it is pricey. Part of the issue might be that my daughter does *not* really want to discuss her thoughts with the therapist. Mostly, it seems the therapist is telling my daughter not to be so hard on herself, that everyone has negative thoughts sometimes, that these thoughts don't make her a bad person, etc. During times of anxiety, the ocd is worse. I do believe it has affected her studies (she is at a very competitive high school), but she is insistent that I tell no one at the school (I had tried saying something earlier and it *did* backfire), so. . .

Does anyone know what supplements affect serotonin? I know that St. John's Wort, Inositol, and 5HTP all affect serotonin, but what about SAMe. I went to a new doctor today, and he suggested trying up to 4 grams of inositol for my daughter's OCD symptoms. He specifically told me not to use 5HTP, but said it was OK (he thought) to continue with the 400 mg of SAMe. However, as I was searching the internet for more info on inositol and serotonin, I came across an article that said SAMe could also raise serotonin.

I am still trying to learn all of this -- what is a "mental tic?" Thanks!

I have been researching SJW. My understanding is that SJW can cause side effects, but at a much lower rate than most SRRIs. I think around 3% experience side effects. I will say this, however. I have become convinced that you should choose your brand of supplements very carefully. I think it does make a difference sometimes.

We had that done in our house last year -- my non-PANDAS child. I would just wait and see what the surgeon says. We did not really have an option. His orthodontia would have been for nothing if we had not had the wisdom teeth taken out. He was "out" for the procedure -- the whole thing took about 1 hour, and he was home in about 2 hours. He was in quite a bit of pain, and on pain meds for three days.

Cheri, Thanks so much for that information. If you don't mind telling, how long was he on that protocol, and how did you determine that it should be changed? (I know I have changed things as I go on, though as long as something is working I am hesitant to change unless there is a problem. So, I guess what I am asking is -- eventually, did one or more of the supplements stop helping your son, or did he begin to react less than ideally to one?) Your information is always so helpful. It is very sweet of you to try to help me and so many others. Is methionine different than SAMe? I was thinking they were essentially the same?

Cheri, I feel that the antibiotics are helping with the tics, but with the OCD, it just isn't cutting it at all. When your son was on samE and 5HTP, was he on st. john's wort too? Do you think it is safe to (1) use samE (500 mg) with 2-3 grams of inositol; (2) use st. john's wort (one standardized pill) with the 2-3 grams of inositol; or (3) use the samE and st. john's wort with the 2-3 grams of inositol; or (4) samE, st. john's wort and inositol (all one pill -- pretty low dose)? Is (4) what you tried, along with 50 mg of 5HTP? I know you aren't giving professional advice, but your input would truly help me.

Thank you for the information. Do you mind telling me how much you are using -- and whether there are side effects?

Michele, How has everything gone for you with the Abilify? I am confused with the supplements, especially the doses as I am giving to a teen. I would love to stay natural, but every time I think I've got it right, and everything is great, the boat tips! Our doctor is actually recommending Paxil for the OCD. Did anyone recommend that for you (or did they ever recommend another SRRI) -- or do they not do that with little ones.