Update on us

[mama2alex]

Hi everyone,

 

I haven't posted much recently. I've been reading a bit, but mostly just focusing on life and plugging along with treatment. We recently did an "A-Bab challenge" on our ds to try to determine whether he has Babesia along with Lyme, Bartonella, Staph, viruses. We saw changes in his mood and sleep almost immediately, and once we got up to 10 drops twice a day, things got a bit ugly. He would cry at the drop of a hat, including at school in front of friends. He had diarrhea one night, flushed cheeks at bedtime, temp disregulation, increased anger, separation anxiety and OCD, and just generally very cranky.

 

Its so hard to take a step backwards - he'd been doing so much better. I'd put off doing this challenge for several months because I was afraid of exactly what we're seeing now. But now we know something's going on with Babesia, which is better than not knowing!

 

We saw our LLMD on Thursday, about 4 days into full dose of A-Bab. DS wouldn't cooperate with him for the physical exam (very easy basic stuff that he NEVER has a problem with) and was yelling and cursing (at me, not the doc) so the entire office could hear. The doctor had to get help to hold DS down while he felt his spleen, to make sure there wasn't any enlargement from the die-off. It was not fun, but probably good that the doctor witnessed first-hand a bit of what PANDAS parents go through. (When I mentioned this to him, he said he'd seen worse - he treated crack addicts in the ER in Chicago. So glad to hear it didn't look quite that bad! ) He was very sympathetic and understood this was a die-off reaction. So now we're pulling back for 10 days to focus on heavy detox, then we'll treat him with Malarone, Enula & Mora (herbals) and a much lower dose of A-Bab. He will remain on Septra and Bactrim, but the doctor took him off Rifampin. Of course we'll continue to focus on detox, detox, detox.

 

Aside from this setback, he's been doing well. He had a lot of illnesses in the Fall, culminating with an appendectomy in November. But since the appendix came out, he hasn't been sick at all, which is amazing considering the time of year. He's restarted piano lessons, which stopped when PANDAS came into our lives, restarted after the first IVIG, then stopped again after he relapsed almost two years ago. He is doing better than ever, practicing without being told, and really ENJOYING his playing.

 

I'm not looking forward to the process of treating the Babesia, but am looking forward to the possible results!

[SSS]

It's good to hear from you, wondering how you have been- sorry about the babesia- I am also coming to grips that this is something that probabably needs to be treated soon, and very nervous about that, too.

But, what I read is can't ever really get well unless this is treated if you have it.

Hang in there---I won't ask you how the mold thing is going ;-)

[SSS]

By the way, on your DS's hard time at the Dr. office- I do think it is 'good' for them to see it-

at our appts. my dd just sits and stares at the window- and I sometimes have a hard time describing in front of her what it is 'really' like-

had an emergency phone appt. with our Dr. from home recently, while she was at school,

and boy did I lay it on the line very descriptively, lol.

Although not really that funny.