emma1

I am also so sorry that this is happening to you, and will pray that it turns out to be nothing. I can completely relate to you watching every little move your child makes! I wanted to ask if anyone here had tried the home strep tests -- istrep is one, but I think there are others too. It sure would be nice to get instant results at home, and only contact the doctor if and when the test turned up positive.

Michele, Now I am not only confused about my situation, I am confused about yours too. I hope the doctor has some suggestions for you. It seems for PANDAS you need Omega 3 and not Omega 6; for pyroluria you need Omega 6 and not Omega 3. If your child has pyroluria, though, perhaps he is not getting a lot of Omega 6, so supplementing would be OK. Nordic Naturals makes ProEfa which has Omega 3 with just a tiny bit of Omega 6, so that might be an option. This is close to the same formula that is used by Equazen in England for their ADHD studies with children. They gave a group of children their Eye Q product, which also has primarily Omega 3, but also a small amount of Omega 6. According to the studies, the children using the product had documented improvement with ADHD. You can order the Equazen product from the website, and the pills are tiny, which is great -- but the shipping is expensive. They also have an emulsion (like Coromega) called Eye Q Smooth. I googled pyroluria and omega, and found this: Beneficial supplements Vitamin B6, zinc, manganese and evening primrose oil Potentially harmful supplements Histidine, copper and omega-3 fatty acids Emma

I have some questions as it relates to PANDAS and antibiotics. My daughter had high strep titres, and was put on amoxicillin for 20 days (875 mg twice daily). Symptoms greatly diminished, but did not entirely go away -- still, a MAJOR improvement. I assumed that when she went off the antibiotic, her tics/ocd would return. We are on day 6, and I would still classify the tics/ocd as minor. I am surprised she is doing so well. My question is: If she would continue to do relatively well off antibiotics (from a tic/ocd standpoint), is it safe to keep her off antibiotics (or is the risk that she might be reinfected reason enough to go with daily antibiotics). She was originally on a 10 day course of antibiotics, but on Day 8 her best friend turned up with strep. When I informed my doctor, he said she should finish her current course, and then take another full course to be safe. I called because her tics/ocd increased at the same time her friend was diagnosed -- and then decreased again once her friend had been treated for 24 hours -- this, even though, the doctor said my daughter was exposed, but could not catch, the strep. My second questions is: Does the fact that her tics/ocd did not completely go away while on antibiotics mean anything? If one is on the "right" antibiotic, do all symptoms go away" Also, for those of you with high strep titres, how often and long do you monitor them. My doctor has suggested every 4-6 weeks, until they become normal. Thanks to all of you who have responded to all of my questions. I so appreciate every single response, and am particularly grateful to those who have passed on information from their doctors, especially Dr. Murphy.

Michele, I was researching this topic more, and I wanted to let you know that I did come across a post saying that children with pyroluria need to take Omega 6 (like evening primrose oil) but they do NOT do well on Omega 3 (fish oil). I do not know if this is true, and if Dr. Murphy said to use it, I certainly would use it if it were me, but I did find that connection of interest, and thought you might want to pursue it. Also, on the B6 -- Bontech which makes vitamins for TS has 50 mg of B6 in it (for you son's weight) -- and that is 2500% of the daily requirement.

Chemar, So would you generally advise against all such drugs (sounds like that is what you are saying)? Our doctor called another doctor to consult about my daughter's ocd symptoms. That doctor recommended Paxil. Our doctor told me this, but then advised against it, "unless we find it absolutely necessary." We're a probable PANDAS case, and he said he would feel more comfortable trying different antibiotics to see if they affect symptoms before trying the Paxil. Does that sound right to you? As it is right now, my daughter is now about 6 days off of antibiotics, and her tics/ocd are pretty mild.

I am trying to figure this out myself. My doctor said that since the strep titres were high, my daughter needed antibiotics. He is usually pretty conservative with antibiotics, so I assume antibiotics were necessary for this, just as they would have been had my daughter presented with a sore throat. The question then becomes whether to stay on a daily low-dose antibiotic. As I understand it, the purpose of this is two-fold. In some cases, the antibiotic reduces/eliminates symptoms. Also, I believe it would protect the child from further strep infections. Right now, my daughter has finished the course of antibiotics, and her tics are quite mild. Unless they increase, I believe my doctor's recommendation is to refrain from daily antibiotics. If they increase without antibiotics (and decrease with antibiotics) his recommendation is to use a daily low dose of antibiotics. If she doesn't stay on antibiotics, I know we are supposed to go in for a strep screen whenever she has a sore throat or whenever her tics increase. We are also supposed to monitor strep titres every 4-6 weeks to ensure that they go down. If they don't, I am not sure what we do then. Antibiotics do present other issues, such as yeast, so probiotics are important. And, it is important to keep some types of antibiotics in reserve for "other" infections. That is all I know -- I will be interested to hear from others!!

I have been trying to figure this all out for a little over four months now. It is very complicated, and everyone knows more than me, but. . .I would check strep titres with a blood test too. I did not know my daughter had strep, but her titres were high, and her doctor believes she has PANDAS, which requires antibiotics. It is something you would want to rule out.

Michele, I am interested in this issue and have been researching it. My doctor did not mention it; many articles say that this is not an illness recognized by "mainstream" doctors -- did Dr. Murphy comment on this? My doctor has been very cooperative so far, but I am constantly concerned that I am going to push him beyond his comfort zone. Anyway, as I was searching this forum, I did find this post from "Claire" which I thought might be somewhat helpful (though as I recall, your son is tiny, so these level might be too high): Pfeiffer says that 10-20 still needs treatment if symptoms exist. For a value of 21, they recommended 300 mg B6 and 25 mg P5P! We didn't do this much, but it varies for everyone. As you know, my son hasn't had tics in 13 months--well before we uncovered the pyroluria. I can't say the direct impact of treatment on him, but with 100 mg B6 and 50 mg P5P, his pyroluria is only 8.5 or so. P5P is the activated form of B6 and is less toxic than B6. This is why I give more P5P and much less B6. My DAN doctor likes P5P better than B6. I also do zinc.

Michele, My doctor is generally very conservative regarding antibiotics, but has expressed a willingness to prescribe long term. Now, what I am not clear on is, if my daughter is still having symptoms (tics) but the titres become normal -- will he still allow the antibiotics? That I don't know. But right now, the titres are high. Our doctor did say that he would use amoxicillin or Pen V, but didn't want to use augmenten or zithromax, because we needed to hold something in reserve for other possible infections. Is there a chance that when the titres come down, the tics will subside as well? Has that happened for anyone? How long have your son's titres been borderline normal, Michele? Kim, would antibiotics be OK so long as titres are still high? Or would you stop after a "round" of antibiotics?

I was expecting small little round pills. These are large, oblong pills. They are not small at all!

She mostly has what I believe are vocal tics -- sometimes a humming, and sometimes it sounds almost like a repetitive noise. The other thing that I noticed, which I think is ocd-ish, is counting steps. Honestly, I wouldn't have noticed the counting except for the past three months I have been watching her like a hawk. She has gotten extremely good at hiding her tics, etc. She occasionally goes to her room, and plays her ipod a little too loud -- and I am wondering if she is releasing the tics. But for the past three weeks, on antibiotics, all has been, well, really good. I have still noticed a few little things, but, honestly, overall it has been so minor, it has been wonderful. (We are out of antibiotics right now, however, and I am totally stressing!!!!)

Ronnas (I think that is correct) gave a citation saying this could happen when someone is older, and that is what my doctor thinks happened. She got sick about four or so months ago with a bad sore throat, but then "rebounded" and went to school. It was a Spirit Week or something and she had a lot of social activities going on. I could tell she wasn't 100 percent, but she had never had strep that I knew of, and no one else in our family was sick. So, I didn't take her in for a culture. A few days later, the tics started. I knew nothing PANDAS, and so it did not even occur to me. I thought she was just stressed out. When I spoke to the doctor over the phone, and he said it was probably a tic. But when we went in, he tested titres, and her strep titres were "really elevated." So, we gave antibiotics, which greatly reduced tics to almost nothing. Now we are trying it without them. Before this started four months or so ago, I never remember her ever having strep, and she never had any tics or any ocd type issue at all. I thought she was "too old" as well -- but there is some medical opinion that this can occur outside the designated age range -- and the antibiotics definitely helped. It's a mystery -- to me anyway.

Mike, Could you tell us what kind of allergy testing you did? Our doctor said since it was PANDAS, allergies probably did not play a part, so I haven't gone in that direction. BTW, our doctor did say that not having tonsils dramatically reduces your chance of getting strep. I am still confused, however, because recently -- while on antibiotics -- my child exhibited more tics when around a child with strep! Our doctor was even confused by that one.

Faith, Based on what our doctor has said and what I have read, many kids have symptoms when tired or ill. So, I really think it could be that -- kind of overloading his system. He is busy fighting off a germ so his system is just out-of-whack. However, I have also read that some kids have a difficult time and react to B vitamins with more tics -- but I thought that was usually when you tried to supplement with a B complex. The suggestion was to give B vitamins individually (like you are doing!) or as part of a multi. Honestly, it is all trial and error, isn't it? I think I would just try to get him feeling better, and try to ignore (good advice that I hardly ever follow!) the tics, and see if they go away as he feels better.

Just wanted to add -- my daughter is old enough to talk about this if she would! Usually she does not. But the other day, when I was trying to get her to agree to not eat certain things when out with friends, she got quite upset, and told me that she already felt "very different" from everyone else right now -- could I please stop trying to make her feel more different than she already does. Since we don't know that food is a trigger for her (she has high strep titres), I backed off. This is very hard!

Thanks Chemar. My daughter had sudden tics begin and was tested and has high strep titres, so the doctor suspects PANDAS. As I am now watching her like a hawk (probably not such a good thing), I noticed she was counting steps. When I asked her, she at first evaded, and finally said it just seemed right to have fourteen steps before leaving the room. I've only noticed her doing it a couple of times, but she has been on antibiotics, and during that time I was noticing almost nothing. If the ocd isssues continue, is there a separate treatment plan for that? Is it treated like "regular" ocd? Thanks for any information you can give.

Michele, Sorry to be bothering you with so many questions. So, are you saying that Dr. Murphy would advise not pursuing food allergy testing and/or mineral/vitamin deficiencies? Our doctor (again -- not a PANDAS specialist) told us he did not really believe that these tests were necessary, as it was the strep that caused the symptoms, not allergies or deficiencies.

For those of you with children who have tics and ocd -- does this type of ocd differ from "regular" ocd (that is, when one has ocd but no tics)?

Faith, I really feel so confused most days that I do not feel as though I should be giving advice, but . . .I did want to say, I have noticed more symptoms when my child is ill or really tired.

Thanks, Michele! You are so very, very kind to share all the information from your visit with Dr. Murphy. Your information has been invaluable to me. I am trying not to jump the gun, but I was sure I was noticing some tic/ocd symptoms this morning with my daughter. She has been doing very well, but she has been on amoxicillin for 20 days. I think my doctor would prefer that I watch for 7-10 days, but it is difficult.

Michele, Just trying to clarify. Dr. Murphy recommended fish oil, vitamins (like a multi-vitamin) and probiotics. But she did NOT recommend antibiotics? Did you ask her why? I am confused that she would not recommend them.

Michele, thanks for the reply! Our doctor is willing to give Pen V, if we need it. Does your child take it every day? I am extremely nervous having her off antibiotics -- she did so well on it -- some tics, but very, very minor and infrequent.

We are finished with our round of antibiotics, and so I am now "watching" my daughter to determine if she should be on long-term low dose antibiotics. I was just wondering if all the children with PANDAS were using long-term antibiotics, or if some have chosen a different route (supplements, etc.). Also, when you stopped antibiotics, did the tics return immediately, or was there a time lag at all? Thanks for the information.

Thank you Chemar! I hate to be so dense on this, but could you give me an example of something that would "boost" the immune system. Are you talking about something other than supplements and good nutrition? We have been using the antibiotics, of course, but also some of the Bontech vitamins, fish oil, probiotics. She also takes zyrtec for allergies. Would all of those seem ok to you?

I have seen this addressed as part of other topics, but have found conflicting answers. Do those with PANDAS children work to get them as healthy as possible -- vitamins, supplements, etc. Or, is there a danger in boosting the child's immune system? Please help me figure this out -- I have started vitamins and supplements -- I want to stop if I am doing something harmful!!!!