emma1

I have not posted in a long while and have not been actively following posts as my daughter is doing extremely well. She has been on low dose Pen VK for the past year to prevent reinfection. She has a doctor's appointment next week, however, and I am wondering: Should I advocate to continue the Pen VK? Last year when I posed this question, I was told she should probably remain on it indefinitely. Thanks!

I notice it with my daughter, but I thought it might be due to stress -- this is about the time first quarter ends at school -- lots of tests, social events, etc. And, even though my daughter isn't ill, everyone around her is -- so perhaps her immune system is working overtime?

Did anyone else see the JAMA article published today that claims the following: Group A streptococcal infections do not appear to trigger Tourette syndrome (TS) or obsessive-compulsive disorder (OCD), according to a case-control study by researchers in England, a finding at odds with some smaller studies conducted in the United States (Schrag A et al. Neurology. doi:10.1212/WNL.0b013e3181bd10fd [published online ahead of print September 30, 2009])? I (of course) totally disagree!

First, thank you all of the information on the c difficiile. It really helped a lot !! She was so freaked out by the gloves and gowns, that I really freaked out too!! Thanks for answering my silly question Pat. Kim, thanks for the reference. Michele, the story about Alyssa is so sad! My worst fear is that she will go off to college and get symptoms again (though we are just starting to think about college). I know when we went into the doctor the last time, the doctor was talking about vaccines again (the ones she'll need before college), and that got me really nervous. I don't want to borrow trouble, but these things do worry me a lot! I am going to try and switch doctors soon (her ped usually sees the kids off to college and is then finished with them, but I need someone who understands the situation so if there is trouble at college we have someone to turn to). But, of course, that is hard too -- I need to find someone that will keep prescribing the antibiotics (and, unfortunately, some won't -- especially since now she is exhibiting no symptoms, and she doesn't want to talk about it -- so trying to get her to personally explain to a new doctor what was happening -- well, that just isn't going to happen). Though -- EAMom -- I now totally realize that I do need to keep her on the antibiotics. Thanks again to all of you!

Pat, I am going to ask a question which I am sure is stupid, but here goes. . .If everyone has c difficile in their gut at all times, how is a c difficile stool test ever negative? It would seem to me that all tests would come back positive, but of course, I know that is wrong! My daughter has been doing well. I am concerned about an increase in symptoms if she gets ill with anything (in the past, any illness seems to cause us some problems, not just strep). But, the relatives of this woman were quite concerned (they were all being tested, I think) and honestly, the gloves and gowns made my daughter concerned (especially since she was told not to go in as her visit was optional). The last couple of days her stomach has been acting up a little, but I am not sure why. It could, I guess, be c diff, or it could be the fact that she is really worried about the c diff, or it could be the Culturelle I started her on (she hadn't been taking it until about four days ago, and she started feeling not-so-fabulous yesterday). I left her on her "regular" probiotic, and stopped the Culturelle to see if that makes a difference. Thanks to everyone who is trying to help me with this. Michele, that sound awful, and must make his life miserable too! Your sweet son so deserves better!!! I wanted you to know that with the Pen VK, my daughter had no issues. It is a more narrow spectrum -- again, don't exactly know what that means, but perhaps that makes a difference? My doctor has been advocating going off the antibiotic, but I haven't agreed to that yet. I may need to seek out a specialist (we consulted an infectious disease guy, and honestly, I was kind of surprised at how little in-depth info he seemed to know).

My teen daughter has PANDAS and has been doing really well. She is on PenVK twice a day! Recently, she began a community service project with her friends, working at a local hospital. (I wasn't wild about this idea, but she really wanted to and all her friends chose this place as well.) She basically visits with some of the people in the wards. Last week, she was playing cards with an older woman. This week, when she showed up, the woman's room had a Do Not Enter sign, and people were donning gloves and gowns when they did need to go in (doctors, nurses). When a member of the family showed up, my daughter inquired, and the family member told her the woman had c difficile and was extremely contagious (and told her she had been tested last week on the day my daughter was there (Tuesday afternoon)!) I have searched the internet just enough to get really worried -- evidently c diff is more likely caught if you take antibiotics! Our doctor -- usually a gem -- said there was nothing I could do, and that "there was no incubation period." (I guess some get the spore but don't show symptoms for months?? Not sure about this.) Does anyone know anything about c diff? Any information would be helpful, as I am pretty much freaking out!

Could anyone tell me if they have used this and if they felt that it had any benefits and/or side effects? Do you need to take it every day to get benefits, or can you take it every few days? Can you take "too many" probiotics, and if so, how much is too much? Thanks!

My daughter started with symptoms, but because she was a teen, we didn't think PANDAS. She was then tested for strep, and it came back that she had had an infection. The doctor put her on an antibiotic (think it was amox) and the improvement was dramatic -- I mean night and day! After we finished, there were a few days that she was fine, and then symptoms re-started. We went on PenVK then, I think. Again, major improvement. That lasted a while. Then, ocd! Started zith -- did a z-pac. Dramatic improvement. Stayed on the suppression dose for about 6 mos (two pills every 5 days, I think). Then, our doctor got very concerned (just generally about the long term use) and we went back to PenVK -- and the symptoms did not return. Actually, at some point in there -- not sure when -- the ocd did get worse, and we had to up the inositol. But she is doing amazing now.

Wow! I am surprised that missing one dose leaves you unprotected for days! My daughter takes it twice a day. Recently, she went away for a week, and when she came back I noticed two things. She had skipped her dose of meds, including the antibiotic, TWICE in seven days (kids!), and she didn't seem any worse for wear (that is, she wasn't exhibiting the ocd/tics). Our doctor had her on zith about a year ago for around 6 months, I think (the timing is all getting fuzzy). She did well on it. She took a regular z-pac dose, and then began taking every 5 days. But the doctor did not feel comfortable leaving her on it long term. He even threw out something along the lines of, "This is not what this drug was intended for, and therefore, there have not been the numerous long-term studies you would want regarding safety of taking this drug months or years." So, we dropped back to the PenVK, and it does work, so far, for us. By that, I mean most symptoms are gone and/or minimal, and she hasn't had strep. (It wasn't working when we initially switched to the zith -- my daughter was having a lot of symptoms when we switched to zith -- which is why we switched to zith. The zith calmed everything down significantly. It still wasn't perfect, as there was some ocd remaining that we needed to use other supplements to help.) Right now, I am strongly advocating we continue. I am thinking she might be on it only for the preventative effect right now -- but I do want to prevent more strep! I was really hoping that once a day was OK though!

On another thread, it appears that long term suppresssion therapy might be appropriate for PANDAS. I am trying to speak with my doctor about it. Before I do, here is my question: Does anyone have an opinion regarding the dose of antibiotic that needs to be taken to prevent strep? My daughter is a teen, and pretty close to her adult height/weight. She is on PenVK, taking 500 mg twice a day right now. I am wondering, if she is going to be on this, say, years, if she can go any lower and still be protected (say, 500 mg once a day). Anyone with any thoughts on this? Thanks!!!

Michele, Great to see you are still on this board, but sorry that your son is still having problems. My daughter still has some ocd issues -- they come and go, but have been overall really, really mild and non-disturbing -- and I would love to keep it that way. Re antibiotics: as I wrote on another thread -- our doctor let us stay on zith for about 3 mos, and then insisted on going back to Pen VK. We did, and honestly, I haven't noticed a big change. Now he was to stop the Pen VK though -- and that does indeed have me worried. I get very spoiled when things are "good" and just do not want to rock the boat. Because she is older, the doctor thinks maybe it is over, but I am not that sure as there are still little things that I notice. EA Mom (I think) said that for some, antibiotics are forever -- I had never heard that before, so I am looking into that now. Right now, we are using the PenVK, inositol (for the ocd), mag taurate and b/c/zinc -- and that's it.

Thanks for your information. My doctor had used ARF as a basis for starting the antibiotic. We have been dealing with all of this for a couple of years -- though now you have me wondering if I could have "missed" symptoms when she was younger. Her symptoms this time were obvious to us, but more so because she noticed them and was concerned. I know when she turns 18 we will have to find a new doctor. That makes me nervous as I know so many have had trouble getting antibiotics prescribed. And I definitely did not want to have her go off of antibiotics and go off to college at the same time. The "forever" of being on antibiotics seems -- well -- really long though! (I am really happy right now that she is have no/very minimal symptoms. I would really hate to see her the way she was when this all started.)

Hi all! It has been a while since I posted, as things have calmed considerably. For those who remember me, I have a teen daughter who developed PANDA-like symptoms a couple of years ago (PANDA-like because she was a teen when she got strep and started the tics/ocd). We were on PenVK and then zith and then back to PenVK. Now she is on 500 mg PenVK (to keep her from getting strep), mag taurate, inositol, and a vitamin with B and C vitamins and zinc. My question is this -- she has been on the Pen VK for more than a year now. Our doctor is suggesting that we stop. Does anyone have an opinion on this? I suppose I can't keep her on the antibiotic forever, but -- things are going good right now and I don't want to mess that up! (Sorry if I am posting in the wrong place -- just realized there is now a PANDAS forum.)

Just wondering what kind of magnesium you find best. . .We use Cardiovascular Research Mag Taurate. It is very pricey and I wonder if anything else will substitute (without compromising results of course!) Thanks!!!!

Michelle, It sounds like you are going through a difficult time, and I am so sorry. From some earlier posts, it had sounded as though your son was doing quite well for a time. You had said that he often misunderstood things. I am definitely not trying to diagnose anything, but I had a child like that. He had a receptive language delay and auditory processing issue. Sometimes an auditory processing issue won't really show up for a while. As language gets more complex, it becomes more difficult for them to keep up. And, definitely, these kids take things very literally. They also have trouble following directions. There can be behavior problems because they can't understand what they are supposed to be doing, and so give up. It can look like they are ignoring you or defying you, when really they are just misunderstanding you. I also believe that the outbursts could be part of the PANDAS. Especially if he is experiencing ocd and adhd, I think that the outbursts could be the result of the stress of trying to deal with the other issues. I am pretty sure I've said this before, but I am very careful with what I tell the school now about any of my children. Some teachers are absolutely wonderful. You tell them information, and they work to find a solution. But others seem to use the information to show why the child can't succeed. I am praying for you!

Does anyone know -- is this the same vaccine that some colleges are requiring before students can attend?

Has anyone noticed any increased motor or vocal tics when using this? I started my daughter on 50 mgs of it twice a day, and think I might be hearing a slight vocal tic.

Patty, I don't really have answers, and perhaps this is a cop-out, but. . . This PANDAS is tough stuff! My daughter is old enough to tell me how she feels. She doesn't talk about it often, but when she does, I do realize how hard it is for her at times to hold it all together -- the focus, ignoring the ocd, trying to feel "normal" when sometimes she doesn't feel that way, etc. Sometimes I think that they have to work so hard to pay attention in class, get their work done, be kind to their friends, excel in their extracurriculars, etc., that by the time they get home there just isn't much left some days. So, we end up getting a "glass half empty child" at home. I don't know what to do about it exactly. I have tried to set my priorities. For instance, I want her to do well in school, so skipping homework is not an option. But, maybe she doesn't have to keep her room the way I'd like it, and if her week is stressful, I'll try to do whatever I can to keep my demands on her to a minimum and help her out where I can. I have found that when I start looking at it from her perspective, I act differently, and then (surprisingly) she begins to act differently. But, she is older. I would imagine the whole thing is even more frustrating and confusing and difficult for a younger child. Hang in there!

I had tried this with my daughter once before, and I thought it affected her appetite, making her less hungry. She has had some IBS symptoms before. For those of you who have used this supplement, especially if your child has any stomach issues, did you notice any type of side effects? I realized I had upped her magnesium at the same time, and now am unsure what affected her tummy.

My teen just came home from the doctor, and came out with "recommendations" for 3 vaccines! Honestly, I thought we were done. They are for meningococcal meningitis, Hepatitis A, and MMR. Anyone else out there with older kids. I am pretty sure these weren't on the list a few years ago (maybe the meningitis was, but not the MMR or Hep A). Then, my husband came home and told me his doctor wanted him to get a whooping cough vaccine. The doctor said he didn't need it to protect him, but if he (my husband) got it, he could spread it to an infant, which could be bad for the infant (we do not have an infant). Comments???? What would you do about the teen vaccines? I only want to give what is absolutely necessary because, in our case, we never know what will cause the symptoms to flare.

We deal with similar issues. At first, I couldn't tell what the "sounds" were, and I thought it was a vocal tic. Then I realized it was specific words related to repetitive thoughts. We have tried inositol, SAM-e, and mag taurate. They work pretty well -- though we do still have flares when there is stress -- I wish I had an idea of what to add during those times!

I am looking for info on antidepressants for my elderly grandmother. The doctor insists that she needs an antidepressant (and her quality of life is very low, as she is quite ill and sad). However, she is so weak, I worry about having her on such medication. My mom is pretty much just going with what the doctors tell her. I know this is off topic -- but does anyone have any experience with any antidepressant that is more mild, with less side effects? Any info would be so appreciated. My daughter, with strep-induced ocd, uses SAM-e, and has had good/great results, but the doctor made me feel like an idiot when I suggested it!

Take a look at Natural Factors, PharmaGaba, on iherb. I just bought it on impulse because of the reviews -- helps calm and focus! We only tried it once, but it seemed to have the desired effect.

I think the books are helpful. I like the one on anxiety too. Just wanted to say -- I don't know if giving SAM-e to a child is OK (Cherie would know!) -- but I have felt for a while that it has really helped my daughter. A couple of days ago, she was staying with a friend and forgot the SAM-e. Within 24 hours, her negative thoughts returned! I am hoping as she gets back on her schedule, they will go away again -- fingers crossed. She has had a good summer so far -- even with some stressful situations and daily swimming!!

We use the Jarrow brand from iherb. You might also want to check out a book called "What To Do When Your Brain Gets Stuck" by Dawn Huebner. It is a little "too young" for my daughter, but I saw it and thought it would be quite helpful for a younger child.