My middle son is in huge exacerbation

[Dedee]

My middle son is 12 and has milder PANDAS / PITAND symptoms than the other two. In fact, he probably gets over looked way too often because there is more focus on my daughter who is so sick right now. He has had mild OCD and anxiety for about 4 years but never needed any intervention. There was always a waxing and wanning pattern and his symptoms were mostly night time anxiety with a few bedtime rituals. He handled it well and we worked on breathing techniques and so forth. So fast forward to this year when my daughter exacerbated full steam and then we found out that she had myco p. We ended up testing the whole family and of course my 12 yr old son ends up IgG & IgM positive for the myco p also. At the time he was only having very mild night time anxiety. Nothing huge. So I took him to see a local doctor who has experience treating PANDAS patients. I wouldn't call him an expert, but he is pretty darn good. He ran lots of labs and started him on Zith. My sons labs show IgG deficiency with low subclass C. So we leave him on the Zith for 3 months and last week we were to stop the Zith and return to see the doctor in November. After 4 days off Zith, my son fell apart. He has the worst exacerbation I have ever seen him in. Crying and sobbing every night. Saying he would rather die than live with this. Afraid of everything at night. Can't seep alone. Bringing up eating issues that don't even exist, saying he is afraid he might start being that way. I was afraid to leave him alone. I got in touch with his doctor and he said to re-start the Zith and we would talk about it at the appointment in November. We started the Zith back and he started to improve after two days. He still hasn't completely resolved. It's been a week. He is still sleeping in my room, but the crying has stopped. The OCD "talk" has stopped but I still see the rituals at bedtime. All this had completely gone away when he was on the zith before.

 

So my question is, why would he flare up so dramatically? I can understand the old symptoms coming back, but these were things we have never seen or heard before and in an intensity that was frightening. Even with illness he has never reacted to this degree.

 

The doctor has him on some supplements for his immune deficiency and the plan is to re-test him in November to see if there is any improvement in his IgG and subclass levels. If not, we may consider IVIG for him depending on what insurance says. Since he has a definite immune deficiency they should pay for some of it.

 

Still, I am stumped by this flare just from a short break off antibiotics. This is all a little hard to handle while trying to deal with my daughter at the same time. One of them will actually start crying because I am spending time with the other and they feel left out. And I am supposed to deal with this after working all day.....Oh and my husband says the house is always a mess and we never have dinner as a family. I think I would kill him but I'm too tired.....

 

Dedee

Edited October 5, 2011 by Dedee

[MomWithOCDSon]

I don't know, DeeDee, but we have experienced a similar pattern with our DS in the past.

 

I've seen it hypothesized that it could be due to some bacterium having gone "intracellular." In that state, it is basically dormant until some natural cell death occurs and releases it, or the bacteria itself kills off its "host cell" and then goes about wreaking havoc again. But most of that discussion has focused upon strep; I'm not aware of whether or not myco p can "go intracellular," though.

 

Anybody else know?

[cynditk]

In my understanding Myco can cause similar symptoms to PANDAS. My son sounds similar to yours in that he has more anxiety rather than tics/OCD-he has some mild OCD but anxiety is his main issue, and we thought is was PANDAS because he had overnight presentation of severe anxiety/personality change/ psychotic issues.

 

Zith and pred gave him remission from the anxiety and psych stuff within a few days, and every time we have tried to go off the symptoms come right back. So in my son's case it may very well be Myco and/or lyme, because Zith treats these. My son is also IgG subclass defiecient and has been on low dose IVIG for several years, and it has helped him with OTHER issues, but he had this latest flare while on IVIG.

 

So my thoughts are stay on the zithro, maybe even increase it. It's probably Myco or lyme.

 

constitutional homeopathy does seem to be helping my son with emotional stability and decreasing the anxiety as well.

[tpotter]

Dr. Garth Nicholson, who is probably the top specialist in treating mycoP says to treat it with Doxy, and use it for 2 years. I tested positive for mycoP after having been sick for at least 3 years with it (had terribly, unremitting asthma, and it was finally found when my children's doctor was testing everyone for mycoP and strep.

 

I have now been under tx from an LLMD for the past year (I also have Lyme and co-...which mycoP can also be a co-infection), and was treated with azith plus other abx. Everytime I would stop azith, the symptoms would all come back. Recently, I started doxy + azith, and it has really, really helped. I spoke with our LLMD the other day about Dr. Nicholson's protocol (I had just heard about it), and he said that he would check into it, and do it, if needed.

 

So, for now, I am continuing with doxy + azith, and for the first time in years, I actually am starting to have several days where I feel "normal" (It's a very odd feeling.)

 

BTW, everyone in my family was exposed...high IgG and my DH was borderline high IgM + IgG. There's no question that mycoP can be a huge component in this whole disorder, and PANDAS docs (like Dr. K.) have said that for a long time.

 

I would suggest treating it aggressively.

[Dedee]

My son also takes Rifampin with the zith. The doctor said it helps crossing the blood brain barrier. I hinted that I wanted to switch antibiotics but he wouldn't bite. I plan to talk to him more on that in November. We did do a Lyme test on him through Igenex. He had some indeterminate bands that were lyme specific and a couple of positive bands but the doctor said not enough to pursue. When I researched it, I thought it was boarderline. Possible that my son is so immune compromised he isn't showing up really positive (from what I read). But again there were only like two that were specific to lyme. So I may bring that subject up again. I worry about moving forward with IVIG if we aren't addressing all the infection. I have also considered taking him to see Dr. B. if he isn't better in a couple of months. I hear he is really good dealing with the infectious process. This whole thing wears me out. I just wish there was a doctor close by that I could trust to treat my kids for this horrible illness. So tired of researching and trying to find just the right doctor for each specific issue. Uggg...I guess that is what most all of us struggle with. I dream of the day when PANDAS is like asthma and there is a doctor in every city that understands it and is competent in treatment. Definitely a dream....

 

Dedee

[P_Mom]

A big flair like that would lead me to think strep. If I were you, I would take him to get swabbed, cultured and also a blood test to look at strep titers. Also, I would immediately switch him off the azith and get him on Augmentin or Keflex. (regardless of results) There are too many resistant strains of strep to Azith......I have seen it fail in my region for strep over and over again...even in my own home.

[dcmom]

Dedee-

 

SO sorry.

 

If in any way you think there could be strep involved- I would suggest a 10 day course of clindamycin. Both of my kids contracted strep while on multiple abx, one on zith AND augmentin. The clindamycin cleared it right up. Of course, we had to followup with steroids.....

 

Hang in there- you ARE a supermom, you will beat this thing.

 

e