preliminary update

[norcalmom]

About three weeks ago in the face of overwhelming evidence that my pandas/pitand child had a chronic mycoplasma infection, we decided to go full blown mycoP/lyme treatment. He had had two HD IVIGs - last one in April, and about 8 months before that was his first. Those helped tremendously, but after each you could see him slide backwards. After the second, he didn't imporve as much as the first, and he had one minor slide back with separation anixiety / sleep issues, and it didn't really do anything for one aspect of his OCD - but did resolve a few of the other things that were going on. So, didn't improve as much as hoped, but was very stable for a long time, mainly I think because he didn't get a cold or any virus for several months.

 

Well, he got one about a weeks ago. But I'm happy to say, he did not have an exacerbation. First time EVER. Even when he was doing great after the first IVIG and improving weekly, when he got a cold he would have an exacerbation - albeit shorter and less intense than before IVIG.

 

We could always tell when he would get a cold the next day - he would wet his bed, have insominia. Then the cold, and tics and major increase in other symptoms. ALWAYS the bed would be wet the night before.

 

So, this time around, no symptoms other than being moody. But, he's always moody and we were told that the new antibitocis would make him feel worse before better for first few weeks.

 

We switched from high does Azith (500 mg/day) to Doryx - 250/day (broken into two does) and tindamax - I forget dose, but its 3 pills per day. Its a total of 5 pills per day. And he is getting an herbal immune supplement called A-myco by Byron White, along with Co-Q10, D3, , and NAC (and sometimes fish oil and some B vitamins if I can get him to take them). Along with probiotics - minimally a big does at night but I also try to give him at least a yogurt between the anitbiotics during the day.

 

Its a lot of pills. Took me a while to get here. I hate pills. And its a good thing DS is on vacation for two weeks while I get him into the routine of taking a few things at a time, several times a day.

 

 

He still has his "eating thing" OCD, but the past few days it seems less intense. Although he has definately has some periods of being very moody past week as well. So, some good stuff, and some bad stuff. But I consider the fact that he didn't fall off a cliff due tot he cold he got to be VERY good stuff.

 

Cross your fingers for us!

[MomWithOCDSon]

Hey Norcalmom, sounds like things are going well for you and your DS these days. Good goin'! And I'm sure he (and you) will get used to all the pills eventually! We've dropped abx at our house for the time being (knock on wood!), but all the supplements are still in place, not wanting to rock the boat and potentially eliminate something that's being supportive. DS has gotten so savvy to them now, he can usually spot when we've forgotten something out of the dozen or so he pops at breakfast and again at dinner!

 

Have a happy new year and enjoy the happy progress!

 

Also, I don't recall how old your DS is, but, as you know, "moody" could just be part of "normal" for adolescence or puberty! We've seen plenty of that mixed in with the more definitive PANDAS stuff, for sure!

 

My fingers are crossed for you and for my DS, too!