I've been checking in but no time to really post and was wondering about
that appt. I'd have cried too!
It sounds like you are doing a really good job with the diet. As you know we haven't gotten to that yet. I think you do the best you can without being a total ogre. Teens have minds of their own and should be allowed some leeway to learn to deal with this too as they will at some point hopefully be on their own later in life. They need to be encouraged until then to pick up on the signs and notice how foods may make them worse.
Re: antibiotics - DS had a hard time doing 7 day a week abx but I do think it gives a jump start to healing if they body can take it. Herxing caught up with him eventually and he was missing school so LLMD pulled him off the daily and did only pulsing - things got a bit better. I think overall for him pulsing has been better. He did do 1 month full on doxy, then a few months of pulsing and then about
a month of daily abx plus pulsing and was missing a lot of school.
I know I've encouraged you to reconsider schooling options this year. It's a shame you can't get some sort of medical rebate on the tuition but I know privates are super strict. I would definitely consider lining up something different for next year - his old school is closer, right?
We couldn't/wouldn't do private because DS is still missing 1-2 days a week and private around here won't accommodate at the level he needs, so we do public which is less rigorous overall and it sort of works. I realize that's probably not an option but if a tutor/online school is the same cost next year, you may want to consider it and take it year by year.
It's a big bummer to have to sacrifice education on some level but our kids can learn and learn best when they are well, so cutting back now to get better is the path we chose. It's hard to keep our eyes on the long term while we are immersed in the swamp right now. That is something individual to each family though. I'm just grateful he can get to school at all because many teens can't.
I was a super late maturer - at almost 15, which is the reason I'm so tall for a female. Hopefully as you hit these infections, his body will start growing if that is indeed impeding it. I was going to forward you stories I read on Yahoo group about
all the girls with Lyme having precocious puberty. It can have an effect on growth in both directions. On the other hand there are many stories of boys leaving for college basically undeveloped and coming home at the end of freshman year 1 foot + taller - I think boys grow into their early 20s so you have many, many years he can grow. Right now if I were you, I think I'd focus on dealing with treatment if he has basically been cleared of pit tumors etc. That is most likely what will lead to growth in my non-professional parent, FWIW opinion, lol.
Anyway those are my thoughts and opinions for you to take or leave or ponder. It is so hard to make the call on these issues for our kids.
Parent of 15yo DS with CDC+ Lyme test 11/15, late stage Lyme + mycoplasma, bartonella, babesia. Treating with antibiotics/anti-malerials plus Vit D, C, Vit B-12, multivitamin, milk thistle, dandelion, parsley, cilantro, Burbur/Pinella, L acetyl carnitine, charcoal, mag etc.
Website I started: ParentsofLymeKids.com