Jump to content
ACN Latitudes Forums

Who has experienced a postop tonsillectomy flare?


Recommended Posts

Son had tonsillectomy. Day one through three were great. Day four we switched to augmentin as was the plan and all heck broke lose. I thought it was the augmentinbut apparently it is flare. Day 6 we went back to Rifampin. This is Day 7 and he is having so much anxiety related OCD, choreiform movements. This is horrible. We are pretty much back to square one except we dont' have the ankle touching and tops of feet bilater pinching. We had an incident at playground and all of us came home crying. My daughter, myself, my son with tears and my husband would have cried but he held it in. It is draining.

I just have to hope that by treating the Lyme with Rifampin, antifungals, and antiparasites, this flare will go away sooner. And no we can't do Ibuprofen due to post op tonsil. or steroids due to lyme.

 

So how long will this be.....same as the strep throat flare? I know no one really knows....I just needed to share that this sucks all over again. I feel so bad for our son, my daughter, our family.

 

Just keep going. Just keep going is what I just have to say and I look forward to bedtime each night as I am so exhausted.

If I sleep beside him, he will go right back to sleep when he wakes and for that I am grateful..

Link to comment
Share on other sites

We have a familiar saying between another PANDAS mom and me, "Just keep swimming, just keep swimming" (like Dory from the Nemo movie). It just sucks sometimes and nothing really makes it better. It is awful seeing your child suffer and your family come apart at the seams. I wish I had answers for you, but I just have our personal experience. My DD was 9 months without any symptoms post tonsillectomy immediately. When the symptoms came back (and coincidentally she tested positive for Lyme, Bartonella, and Babesia), the initial flare for us lasted for awhile (just like starting over with PANDAS). Getting rid of the Lyme is crucial for our kids. It just screws everything up and I don't think they can really get better with it being in there. I'm pretty sure my DD's Lyme and coinfections are gone now. She is truly improving now and is doing extremely well post ivig and was able to do a steroid burst without going into a state of severe depression. That is just the way it happened for us. I think each of our kids is so unique it is hard to figure it out.

 

I'm so sorry that you are in crisis mode. I will pray for the flare to go away and for healing for your family.

Link to comment
Share on other sites

  • 3 weeks later...

ptcgirl,

Would y ou share wtih me how you proceeded with treatment? You mentioned PANDAS, tonsillectomy, Lyme, IVIG???? In what order did this all transpire. We had pandas, were scheduled for iVIG but came up with low CD57 and now in Lyme/Bartonella treatment *very early....and to top it off, after tonsilectomy May 30th, are in huge PANDAS flare. It has been recommended to treat the lyme/bart. but this flare is horrible...the syndenhams chorea is back very pronounced, as all the other pandas symptoms. On Rifampin, zithromax, added back in Augmentin tonight, and also diflucan and nystatin going too.

Thanks for sharing.

Link to comment
Share on other sites

My son had an extremely acute episode post T&A. He was Strep infected at the time. Although he was put on Omnicef post op, it did nothing. It took quite a while to come back. I would go for therapeutic doses of big gun abx, perhaps 2 in conjunction. I am sorry that you are experiencing this. Now, 1 yr. 10 months later. our son is in pretty great shape, although he still has flares when exposed...

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...