FLmom

My son had high C4a in August 2012. I believe it was around 4000. I used an ERMI test for mold, and came back with a "2" rating on a scale of 1-4. So it didn't seem like we had a major problem if any. I did get rid of my son's waterbed just in case that was an issue. He also had one positive band for lyme-41which could also be other things, but the integrative doctor thought it was likely lyme or mold. His C4a was retested in November of 2013, and was within the normal range. I have no idea why it went down. I haven't seen any outward improvement. I am about to have him tested for lyme with Igenex as soon as we make it in to have the blood drawn.

Does it look for co-infections too?

Qannie, His mood is poor. Always has been (for several years anyway). Very explosive.

Sf mom, did you give copper along with the zinc?

Do I need to doctor to sign for it to order it, or do I order the kit, then have the doctor sign it? Do the results go to the doctor who signed off?

DS is 13, and I know teenagers are supposed to sleep a lot, but I haven't heard of any of his friends that sleep this much. We came home from my inlaws around 5 yesterday, and by 6 he was in bed. He's still sleeping at 9:30 this morning, and I'm sure I will have to drag him out of bed as usual. Yesterday wasn't a hectic day that would have worn him out. He got up around 8:30, opened baskets, went to church, then to my inlaws. Last weekend he was grounded from electronics, so he basically slept all weekend. He also doesn't have an appetite. This has been for months, and mostly seems due to his OCD (won't eat things prepared at home) But an example would be that he ate one ring pop from his basket before church. After church we stopped at 7-11 for milk. He got one of their donuts, but took one or two bites and said it was gross. Then he had one or two drumsticks from KFC for his Easter dinner (because he wouldn't eat what my mother in law prepared. I would say that's tough, and for him not to eat, but they worry about him not eating and had the leftover KFC available for him). That was all he ate for the day. He is never hungry. He's not overly skinny. He's about 5'6" and weighs about 120. I'm about to request some additional blood work (just posted about that one under a different topic). I was wondering if this behavior is typical, or if it should point me in a certain direction that I'm missing?

The lab that we usually go to for blood work is Quest. They ran our Western Blot last year. I would like to call our integrative doctor and request Lyme testing through Igenex, co-infection testing and the Cunningham Panel. Would I still go to Quest for this? Is Igenex a lab that you go to for blood draws? I just looked up the Cunningham Panel and see that is through a different lab. So I'm just a little confused about the logistics of getting all this done.

I need some advice on how to handle this situation with DS13. This morning, while trying to get him up for school, I told him if I had to come back in I would take is phone and Ipad, which I did when I came back in. He must not have heard me, because after he had gotten up and ready, he realized they were gone and started raging. I told him if we made it out the door in time, he would get them back. He continued to rage at me, saying that I couldn't do that etc. So that made me say that he wouldn't be getting them back when we left. More raging and cussing me out. I'm not sure if I told him he would now be losing them and video games for a week, but something like it, as that is the standard. When we were ready to leave I realize he had taken my phone and hidden it. He said I'd get it back when he gets his back. At that point I let it go realizing I'd just escalate things if I kept on him, and figured I'd search his room when I got home. I did rummage through it, but can't find it. Now, his room is an absolute pigsty. I was disgusted pulling things out from under his dresser, and of course I started tossing garbage too. I stopped after a little bit because honestly I'm afraid of what will happen we he gets home and realize I have been in his room and touched his stuff (one of his OCD issues). So, as mom of a normal kid, I'd go through his room throw away all his junk, and search till I found my phone. But as a mom of an OCD kid, I'm afraid he will become violent and go over the edge. The normal mommy in me says 'whatever I'm over it.' and I feel I have every right to search his room. Any advice for me?

3bmom, do you think asking for 2 or 3 weeks worth is a reasonable start to see if he would show any changes? What kinds of issues did your son show improvement with? Basically I'm looking for OCD related changes and mood.

My son had high HHV when tested a year and a half ago. If I can get him Valcyclovir how soon should I be able to tell if it is working, or not working? I'm trying to come up with a game plan, and we have tried Augmentin with no success. Next I was looking at steroids or Zithromax, but maybe should see about the Valcyclovir first. Should he try it for a week, two, a month before moving on to the next thing? He is currently half way through CBT ERP and not really making any progress. Ginger

Can I ask if you remember what your son's IgG levels were? A few of my ds's were low, but Dr. Murphy didn't think they were low enough for insurance to cover IVIG. And I don't even know if they were low enough to warrant IVIG. Honestly, I had no idea what they were even looking for with the IgG levels. Now from your post, I see it is a measure of the immune system??

No, he isn't part of the azithromycin study. He would have had to have had a recent onset for that study. He is doing a CBT study, but they will give him a dose of an antibiotic(can't recall the name right now-not pandas related) or a placebo, one hour before treatment sessions. I was hoping my son could switch to azithromycin from augmentin. But that would mess up the controls of the study. We are seeing Dr. Caceras, and I voiced my concern over him taking the augmentin long term if it isn't helping him, if he even has PANDAS, which I don't know for sure etc. So she just said to stop. I asked 'what's next', and didn't seem to get much advice. "I" suggested that after the study he could try the azithromycin, and then if that doesn't help, look for other infections, and she said 'sure'. The next day I realized that then would have been a good time to try a steroid burst, since we had a week before starting the study. I really want to see someone who is committed to figuring this out instead of me trying to be the one to suggest everything. I can't tell if things have changed since we stopped the Augmentin just over a week ago. Sometimes it has seemed his mood is worse in the morning than it had been, but that was also the morning after a super bowl party, where he had food coloring. He also developed a bad cold this week, which seemed like allergies, although he has never had them. I was wondering if that was due to the stopping, and/or what I'm to expect with this cold, like a flare or something, and if he doesn't flare does that mean it isn't pandas. I guess unless I see a regression where I realize he was better off on the augmentin, then I will keep him off through the study, and use this time to give him folate for MTHFR mutation, and continue probiotics to heal any gut issues that may have arisen from the 8+ weeks on the augmentin.

What is ALA? Haven't heard of that one before.

I'd like to hear what other's experiences with math has been since math difficulty is supposed to be a symptom of PANDAS. My son(13) has always somewhat struggled, but when he was younger I was more concerned about his reading than his math. He seemed to progress along okay in math, with speed being slow. And he could never remember how to convert mixed numbers to improper fractions and vice versa. But we plugged along. We homeschooled then. Last time he started a part time school, but we stayed on our math curriculum since he wasn't up to the level they were working at (7th grade Saxon in 6th grade). Last year also is when his major exacerbation hit. I didn't really notice math being affected, but our ability to work together was a problem, so second semester I got him a tutor to teach him math. She wasn't that great, but got me through the rest of the year sane. This year I've noticed a huge decline in his ability to do math. When I asked him about it, he told me that he is struggling with even adding and subtracting, and that he just can't think clearly. I had switched him to a computer based program, but when I looked at his work, he wasn't getting concepts he has been doing for years. A few weeks ago I started pulling pages off the internet so I can give him a whole page of practice of a single concept. It took him about a week to finish one page. So I gave him a page of just adding and subtracting--still took him several days of math time to complete this with lots of errors. When I had him come fix his work, he still got them wrong. When I drew his attention to a specific problem where he had to do 5-3, he came up with every number but 2, and he gave me numbers higher than 5. After about 45 sec. or so, he finally said 2. Aye yie yie. I have no idea how to help him. Is this what Pandas is doing to him? He has been on Augmentin since Thanksgiving, and I just took him off this week following our Rothman apt. The augmentin didn't seem to help much, and he is starting a research study for OCD there, so he can't start something else yet. I'm wondering if anyone else saw this type of decline, and what helped?

Would love to pray for others and be prayed for. Flmom and ds

How long would you think before one knows if they have hit upon the right antibiotic. (or we could be dealing with lyme etc. also)? And if his OCD improves with the CBT, how do we know if it is the therapy or antibiotic? He has no tics -something that is more objective. And while I want to OCD to go away, I look at it as a symptom of what is going on inside. We have lots of learning issues, math, memory issues, raging that isn't at concrete to judge if healing is taking place. I am also waiting on c4a results that should be in by now, but office is closed until after the 1st. Last year it was high, and if it is higher now, well, then I may be back to square one. Should the OCD improve with CBT even without the medical treatment in place?

DS13 was low when tested last year. I sup'd for a while, then slacked off. When we went back to LLMD in late Sept. he wanted to make sure he was getting his Vit D. so I gave it to him consistently from that point until he had his blood work redone the week of Thanksgiving. I don't remember if things got worse on it, but he did have some pretty dark periods while taking it. (wanting to die, suicidal etc). I haven't given it to him since Thanksgiving, about the time he started Augmentin for Pandas. Actually, I did give it to him twice this week thinking I need to be giving it to him periodically to keep his levels up. (they came back around 60). I'll try to be more vigilant and note in journal when I give it to him and behaviors. Oh, and last year Dopamine (through urine test) tested high.

My ds13 has been on Augmentin since Thanksgiving. No dramatic improvements. This past week has been fairly well (but OCD still high) but that could be due to being out of school, so no rages over homework etc. He is scheduled to go back to USF Jan 8, and I was hoping to switch to Zithromax. The problem is Dr. Murphy also wanted him to start CBT at USF. They called me a few weeks ago and highly suggested us participating in a research study for OCD and d-clyclomine (I believe-can't remember the exact name) to extinguish behaviors. This isn't a pandas study, but strictly OCD study. Our appointment to get set up for that is Jan 7, the day before we see the doctor again. Dr. Storch, the psychologist, said I wouldn't be able to switch antibiotics for my son since they have to keep everything the same during the study (10 weeks). So I'm really struggling what to do. I hate to have my son on an antibiotic that might not be doing anything for him for another 3 months when he could be trying something different. If we postpone the therapy, and start Zithromax, we'd have to wait several more weeks before starting the study to let his body adjust to the new antibiotic. Of course they are closed for the holidays and won't re-open until the 6th, so I hate to call that day and cancel with such short notice. I'm really leaning toward postponing it, and seeing what results we get with a different antibiotic, but the OCD is so bad that I'm getting desperate for him to start something. However, he did get some CBT from a local therapist over the summer with no success. So if he isn't getting the right medical treatment, he might not have any success with the therapy anyway. I think I know what I need to do, but wanted to be sure there was no reason that I should go ahead and press forward with the CBT, and just keep him on the Augmentin.

My ds13 has been on augmentin for about as long. He started the day before Thanksgiving, but there was a period of 5 or 6 days where he did not take it. I haven't noticed any striking improvements either. He seems to be showering less (pretty much just if we are going out some place, whereas he was taking 2 a day several days a week). But other than that, OCD seems just as intense. I thought mood might be somewhat improved, but he did have a breakdown the other day. He's never had any tics, so I can't judge by that. If I don't see anything by our next apt (Jan 8), I'm hoping to have him try Zithromax and see if the changes are more significant.

I'll wait on the online strep since it looks like she will run them once she gets notes from Dr. M. That way they can be cultured. I went myself to a walk-in clinic yesterday, and my rapid was negative. Doctor said I should hear this afternoon about the culture (didn't know it was that fast)

Definitely open to looking elsewhere. Just not sure where that elsewhere is...

The nurse called back and this time I answered...went better than I expected. She said she gave the doctor the paperwork on Dr. Murphy, and she knew who she was and highly respects her and feels she is one of the few in this area that knows how to sort out Pandas. But she wants to get Dr. Murphy's notes sent to her with the request to check the siblings before she tests. So I'll get to work on getting that to her.

I did consider the walk-in clinic, but I think I am just too honest to a fault. I hate to lie about their throats being sore infront of my kids. I'm not above doing that for myself though since I need to be tested too. So Amazon sells home test kits? I take it that is just the rapid response and there is not a way to culture the sample? I guess it is better than nothing, but if it is negative I still wouldn't know if the culture would have come back positive.

Aargh...the same pediatrician who wouldn't prescribe the antibiotics Dr. K recommended, now won't test my children for strep as recommended by Dr. Murphy. When we saw Dr. Murphy a few weeks ago, she wanted all of us to be tested for strep. Tuesday my two older ones had a nurse apt. for a follow up vaccine. When we got there I asked the nurse if she could run a strep test on them. She spoke with the doctor who refused. Her reasoning is that it is bad medicine. She said the doctor would like me to make an apt to sit down and talk with her and 'listen' to her reasons for not believing in this. If I wasn't so unarticulate, I would go and talk to her and try to persuade her, but I feel I'd just sit there not knowing what to say. I printed out Dr. Murphy's bio, with all her studies, and gave it to the nurse to give to her. This doctor supposedly researched Dr. K and said he was 'alternative' so she didn't agree with him. I can't imagine her going against Dr. Murphy with all her credentials. I actually just got a voice mail from the nurse at the peds office and wants to" touch base with me on "Ms. Tanya Murphy". Seriously?! Ms??! I'm very hesitant to call back. From that statement, it seems she wasn't swayed.

Can you be Group Strep B positive with one child, but not others? Now that you mention it, I think I may have been positive with my son(the Pandas one), but honestly can't remember. I wonder if there is a way to find out.