emma1

Cheri, I have been looking for someone to do CBT with my daughter, but really don't know what I am looking for. Also, could you tell me, is this weekly long-term therapy? At some point, will she be able to use the techniques on her own? My daughter (a teen) does not want to go at all. Trying to get her to go long term, I think, might actually increase the stress in our home!

Could you please tell me what low dose is for you? Our doctor said one pill every 5 days -- does that sound right? When my daughter started antibiotics, the improvements were DRAMATIC!!!! But this time, the increase was not with tics but ocd (mostly thoughts) -- so I have to take my daughter's word that she is better as it is nothing I can actually see.

As some know, my daughter had a flare in symptoms (mostly ocd) and so was switched from Pen VK to Azithromycin. She has two more pills to complete the first 5 days (she has taken like a regular antibiotic (6 pills in 5 days), so has gotten a "full" dose as opposed to a low dose. My questions are: (1) For those who have switched to this antibiotic, what did you do after the first five days? My doctor is suggesting one pill every 5 days. Is that enough?? She was on 2 PenVK per day (250 mg); (2) When you started the Azithromycin, were your "good"/"bad" results seen immediately? I *think* I have seen an improvement here, but things aren't perfect. Am I now seeing the full extent that Azithromycin will help my daughter, do you think? (3) Finally, were other supplements helpful/not so helpful with this particular antibiotic? Any advice would be so appreciated.

I finally successfully searched the archives!!!! The book I was looking for was "Talking Back to OCD" by John Marsh. But the other books sound interesting too -- I will probably check them all out. Thanks everyone!!!!!

Hi all! I know if I were better doing searches I could find this, but I am coming up with no results or too many results!!! Does anyone remember the name of the book that Dr. Murphy recommended for ocd? I know there was one mentioned. I wrote it down, but now (when I need it) I cannot find it. Thanks so!!!

Again, thanks for all the advice (I sure need it!) Regarding the probiotic, I have been giving Culturelle 3-4 hours after the antibiotic. Has anyone used it -- I am wondering if one, once a day, is sufficient. Regarding the fears, I have done a lot of reading on ocd, and my best guess is that they are related to the ocd, especially if they seem irrational. Some children are just more naturally cautious and careful -- that can just be their personality. They may just not have the confidence to try new or different things. But if, for instance, someone who is a good swimmer (or just loves the beach/pool), suddenly decides he/she is afraid of the water, that could be a sign of ocd. I know I need to go slow. That has been my greatest challenge. I read the boards, and I know you need to change one thing at a time, and then wait to evaluate results. But when my child is having issues, it is so hard for me to do this. But I am going to try the zithromax and see what happens. (I may have to hide the 5HTP from me though!)

I have tried 1 gram per day. I am thinking of adding 50 mg 5HTP to it to see if I get better results. The studies that show inositol helps ocd used really high doses -- 18 grams!!!!!! As I said, before Spring Break, everything was pretty good --- and now not so good -- I thought it was helping.

Thanks for the info, Michele. The doctor has prescribed a week of zithromax (I was asking for omniseph, but he felt zithromax would be better.) I am not sure what we do if it works, though. Do we stay on the zithromax or go back to the Pen VK? I hope I have that problem, though (because that means she is better!). I also picked up the 5HPT and the melatonin today, but am conflicted (I want to start them all, but I know I need to spread them out.) If anyone has had a child do Cognitive Behavior Therapy, I would love to know about the experience. Is it a long term thing (weeks, months, years)?

Thanks so much for the empathy and the advice. I am just in shock -- I thought she was doing so well. I wouldn't have know anything was wrong if she hadn't finally come out and told me!!! I thought perhaps she was having symptoms of ADD -- but it turns out the OCD is keeping her mind occupied! I do wonder how the strep figures into all of this. . .but I am going to try your suggestions. Thank you so very, very much. PS If you have brands of the melatonin and the 5HTP, I would so appreciate that info.

As many of you know, my daughter has strep induced symptoms that have been largely under control. Recently, she got a virus, and went on stronger antibiotics because of increased symptoms. Now, her OCD has returned (in full force), and the Pen VK is having minimal effects. What do y'all do? We need some help! Should I take her to a different doctor? If so, what would he do? I am very concerned about having her on meds (as I know many have very bad side effects) but she is miserable right now. Ideas of what to do would be so appreciated. We have cleaned up the diet, are using Pen VK, 1 gram of Inositol, and probiotics, as well as epsom salt foot baths (she hated the regular baths). All tics are gone, and the ocd is not noticeable even to me (in fact, she says the OCD involves thoughts that keep her from enjoying the moment). She does appear a little spacey lately (kind of an ADD effect).

I am sending positive thoughts your way! I understand exactly how you feel. And I do not think you are horrible to turn away. I sometimes feel the tics really are harder on the moms!!! You are doing what you need to do so that you can move forward and do what is best for your child.

The vomiting does not sound like part of the PANDAS to me. Perhaps he has a stomach virus? My biggest concern would be whether he actually "got" the antibiotic -- or did it come back up? Did you notice any improvement once on the antibiotic? My daughter's titres came back high, but what convinced me that the strep and symptoms were related was the night/day effect of antibiotics. (Though the tics might not go away immediately -- in some cases they don't. But did you notice any difference?) I think people on this board have seen a variety of symptoms: tics (including the "piano playing" with the fingers), vocal tics, ocd, bathroom issues, mood swings, ADHD. Most with PANDAS note a dramatic and immediate change -- nothing gradual, at least not usually. For us, the antibiotic helps and so we went on long-term antibiotics. I do know others have had to try different antibiotics as the first one didn't work. (We are on Pen VK now that works better than Amoxil -- I think because the Amoxil is pink and probably has red dye in it.) Zithromax and omnisept are also popular ones to try. We haven't used those -- augmentin worked best for us. Good luck -- I know how hard it is when this starts. You really just want it to stop!

Thanks for the great tips. I am going to try them today, before I get discouraged and put the juicer away.

I am still trying to improve our diets here, and would like to start juicing. I am trying to balance nutrition and taste (not much nutrition if it all just sits in the glass!). If anyone has any good recipes or ideas, please (please!) let me know. I tried a vegetable mix, and not even I could drink it.

Can someone please tell me what IVIG entails in this type of case? Are their side effects? How did you find a doctor who knew about this?

Anyone? Could really use some encouragement that this phase is going to pass!!! (And get better, not worse!) I am just really surprised that the symptoms are worse without an actual strep infection! (OK, gotta stop -- way to many exclamation points.) Em

TX911 -- Sending good thoughts your way! I spoke to our doctor about these supplements, mostly because I want immediate results when the symptoms start. Often, I do feel I can see a negative reaction within hours -- but have never really seen a strong positive reaction in that short a period of time. I still am not sure why that is. But, my doctor said that for many supplements, it can take 1-3 weeks to reach what he called a "therapeutic level." He said once you reach a therapeutic level, you might see results that you wouldn't see in, say, a day.

For those of you with PANDAS children who have increased symptoms during illness -- do the increased symptoms fade as the illness goes away? We have had some minor illnesses and some minor symptoms. The symptoms left with the illness. But recently, my daughter got really ill, and some more noticeable symptoms developed. She is now feeling better, still on stronger antibiotics, but the symptoms are still there (not awful, but definitely there). They were pretty much gone, and had been gone for months before this illness. I would be particularly interested if anyone used any supplements, etc., to get their child back on track.

Hi! My daughter is on long term low dose antibiotics (Pen VK). We also use Inositol (1 gram) for ocd issues. I have tried other things, such as magnesium, and do use epsom salt baths or foot baths when symptoms flare. Generally she is doing fabulous. Recently, however, she came down with a horrible virus -- not strep -- and symptoms flared again. She has started a stronger antibiotic to get rid of infection, and will then go back to the Pen VK. She is now feeling much better (physically well, really), but I do still see some symptoms, which is kind of depressing, as she was symptom free for months! We initially went on low dose antibiotics because there was a night/day difference once on them. Nothing else seemed to work. Her titres were quite elevated when she started, but we haven't checked them recently.

Chemar, Does your son never have vocal tics now, or do you use something else when he does? We had this a while ago, and I just want to have some options if it starts again.

Chemar, Do you know why you were told to only use 500 mgs? I thought I was being super conservative @ 1 gram!

Heather, Thanks for the info. The guided imagery sounds interesting. Is there an organization or something that does accreditation, I wonder? Emma

I have just been very briefly checking the boards lately, so perhaps this has been discussed, but I saw that they are very close to finalizing the development of a vaccine against strep. My first reaction (seeing as our whole family has been tested for strep about three times this winter -- basically every time we get sick!) was "Yea! Can't wait!" Then, I started to think of all the vaccine info I've gotten from here and didn't feel quite so positive -- in fact, pretty much decided it wouldn't matter because I wouldn't try it as it might make things worse for my child who already has strep-induced symptoms. Just wondering if other PANDAS families had seen the news clip, and what they thought.

Hi! I assume you mean Inositol -- if not -- please ignore this post! I would start with 500 mg and then move to 1 gram. I haven't gone beyond that, but there have been studies for OCD where they have gone up to 18 grams.

I don't know what he would test for (as in all vitamin levels) but he did test for this. She is doing well, but came down with a bad virus (not strep) a couple of days ago, and I am noticing a few symptoms today. It was a blood test. We had gone in a couple of weeks ago for something else, and had just asked about the L-Carnitine for future reference.