Do I do T&A? Wait?

[kmom]

I know I sound like a crazy lady, bc some of you have gone on my journey finding an ENT willing to do T & A for PANDAS DS. DD dx'd w/ PANDAS after months of stubborn strep. Symptoms started after her T & A which happened to not be Rx'd w/ abx b/f or after surgery b/c we never new PANDAS was on horizon waiting to rock our world. About 3 wks after DD's Dx, DS has these wild symptoms. Seemed surreal. I was embarrassed to tell non forum members b/c it seemed ridiculous! Anyway, both kids have super low strep titers. Dr. B gave them 1st IVIg Oct. 20 &21 due to "specific strep immuno deficiency". 1 wk post IVIg Dr. says 2 things. Remove Zith from Augmentin/Zith combo AND DD needs T & A, preferrable b/f Dec. IVIg and writes a rec. letter so I can hunt down local ENT to do the surgery. Got an ENT to do it...thanks to a local forum member! In the meantime what I think is

"turning back pages 2 wks. IVIg, starts to look really "LYMIE" for 1st time! Suddenly both kids have major setbacks and major joint pain and tingling. Feet, tips of nose, electrical pulses down forearms to hands, etc. PANDAS and IVIg? Maybe? Lyme too? I have this gut feeling. Waiting to see a top LLMD but yesterday got in w/ local LLMD for DD and it seems more likely b/c see her IgG for Bartonella is positive. Never realized! I looked over that test so much but Oh well. Check DS's and his was pos., even higher number. I even have pics of suspicious rash 2 days after Aug. '09 camping trip. Went to local DAN dr. today and he luckily is running same test on DS and myself as local DAN dr. But he's the pressing question. Do I still have DS do T & A tomorrow. Will things get even worse? Or should I wait for rage and other symptoms to settle down and wait for Lyme results. Contacted Dr. B but not convinced I'll hear from him by tomorrow. UGH!!! My gut feeling is wait on t & a. What do you think?

[sf_mom]

I'd wait it out.

 

We have not done T & A on our older son. Thought about it when our son was diagnosed with PANDAS but was encouraged by our Nutritionist not to do it. She convinced us it is a valuable filter for bacteria's and would not solve the root of the problem.

 

We are now happy we did not proceed.

 

-Wendy

[PacificMama]

Hi Kmom,

 

I responded to you previously, but I then remembered that on one of my lyme email lists, there was a discussion with quite a few people involved regarding lyme and anesthesia. That is, they were discussing whether going under anesthesia had created a symptoms flare. I don't remember the specifics, but lots of people reported this.

 

Any surgery, even a simple one, is a big deal. I'm not trying to be dramatic -- certainly, surgery is a wonderful thing that improves and saves lives every day. I just mean not to underestimate that it is still a stress on the body. Just consider what you think your son's reaction to this surgery will be -- will it be a stressful event that will trigger rage and other symptoms? Maybe wait until he is more stable if you still want to do it? I only say this because the way you are describing it, this is not a critical infectious situation where they must come out immediately.

[kmom]

Thank you all! I went to the local DAN dr. (Switched to him as our family practicioner b/c our peds treated kids like a #. No autism in kids but like this guys bedside manner.) Discussed sitation and he agreed...hold off, check Lyme tests and then later on if needed do surgery. He's a great dr. Has an autistic son and just is so willing to listen to situation. My immunologist is standing his ground saying DON"T cancel surgery but I did anyway. Well actually when I called asking how to cancel and explained situation, ENT was in full agreement to hold off till we know more. It's not life or death. So thanks! In the meantime, had DAN dr. run same tests on my DS and me that LLMD ran on my DD yesterday, actually he did even more for us. Funny thing is, we'll get results back faster. LLMD won't give me results till we return and he can't fit DD in till Dec. 16th. The DAN Dr. said 2 wks or less and they'll be faxed to me. Hopefully it will tell us something. In the meantime, all my popping and cracking in my bones that I've felt for a while feel more pronounced. Move my neck---crack, move my toes---feels locked, breath in a little deeper---back cracks, move knee---pop, pain in knee and near veins in writst. I've always said, well I've had carpal tunnel surgery years ago so no wonder wrists are starting to bother me again...I'm on laptop non stop w/ all this going on. I blame body pops/cracks to moving to cold climate in last year and not exercising like I used to. I find every excuse to make it all seem normal. I mentioned it to my mom and she said, "Well no wonder. You work 24/7 on fixing these kids. It's taking a toll on your body." But feel like I need to rule out Lyme. Are they sympathy pains? Guess I'll know soon! Any one ever wake w/ ear pain in one ear. It happens a couple times/ month and I say it's fluid in ear. Get a suddle sore throat many a days. Also, for the past year, I wake w/ crazy gurgling sounds in stomach like everyday. Never had that b/f. Hunger??? But it's a weird feeling. We'll see.

Edited November 19, 2010 by kmom