Flare after Tonsillectomy

[qannie47]

I have posted now well my ds has done after tonsillectomy. I mean so well. For 3 weeks, he was even calmer then his normal baseline. Similar to what we experienced after IVIG...Yesterday I saw the motoric movements reappear. From the time he awakened. No mood changes, tantrums, obsessive thoughts, unreasonability that usually accompanies a flare. But as I kept my eye on him, I noticed that his legs never stopped moving once all day long. Not once.

 

I have been waiting for a flare. I was told to expect one. However, I expected it to happen within days of surgery. Not 3 weeks later. Because he is only 8, I always try to give a flare the benefit of the doubt because let's face it, 8 yer old boys can look a little nutty on any given day....but this is a flare.

 

Do any of you have any idea why a flare did not happen right after surgery? 2) Should I just go ahead and start the higher dose of abx before this gets worse?

 

Of course, these stupid O bands still haunt me. When I looked up RLS....many ms patients report rls in childhood, and some think this is an early symptom of ms....

[Mommy2MCL]

My daughters tonsillectomy was years before her PANDAS diagnosis so I don't have much experience with this.. But have you checked his iron levels? We had a long conversation with our PANDAS doctor about RLS and he mentioned it was basically an iron deficiency and the big pharmaceutical companies play it up for money. It may be something you want to look into. Also we are on a Ferrous Gluotanate, which is an iron supplement (email me for the name if you want it bc I can't remember off the top of my head ) 1x a week.

 

As for antibiotics, I would start them and then get in touch with your dr. This could be a tonsils flare or he could have picked something up in the last 3 weeks.

[PowPow]

Yes, ferritin was an issue for rls in my 6yo. Even though was in range (25) they wanted it to be higher, closer to 75.

We used mykidz10 to supplement. Behavior (adhd) and sleep problems resolved after tonsilectomy and iron supplementation

[airial95]

We had no flare post T&A, it was wonderful. It was the first time we had seen our son at 100% since his onset 2 years prior. About 6 weeks post op, we saw the ADHD creep back up (which we chalked up to him being 4 and the excitement of the Christmas holidays combined with being cooped up in Grandma's small house in the cold weather). But unfortunately, it was the first signs of a flare, which ended up being caused by a new strep infection.

 

It is still possible for them to get strep post T&A, so I wouldn't discount the possibility that this in not a post-op flare but could be a new infection.

[qannie47]

That's a good thought. I will look into the iron supplement. Doc just told me H Flu was cultured from his tonsils. Found that interesting.

[qannie47]

Well, I suppose I found my flare answer....I have the flu.

[qannie47]

Good news for ds. I started higher abx immediately, gave him an epsome salt bath and a dose of motrin for immediate relief after I saw a whole days worth of movemnts...

 

He responded well to motrin and slept well all night with no night movements. He did wake up hyper-motoric, so I gave him another motrin dose. He calmed immediately. When the motrin wore off 6 hours later, I carefully waited for the movements...none came. I also had noted that the day before, when the flare started, I did not see any of the mood/cognitive regression that ALWAYS accompanies a flare right out of the box. I took this as a good sign. While he was a little over stimulated, and herky jerky, he was smiling, and happy. Usually, he looks like a classic case of ODD with over the top temper tanrtums and obsessive irrational thinks. NONE TO BE FOUND. This morning he woke up, 48 hours later...nothing. Calm, and no movements. He received a perfect report from school, and when I got home from work this evening, his dad reported great behavior and no movements.

 

I am going to take this to mean that perhaps all of the work, IVIG, abx, T/A are perhaps doing their thing. Less intense episodes with faster turn around recovery is what Dr. K told me what to expect. I'll take it for now.

[JoyBop]

What do you mean by movements? Sorry if I missed something.

I have to say, my DS had a terrible flare that seemed to last for months but he definitely turned the corner before Christmas vacation and has remained well! My DH was just saying that he thinks maybe we are seeing the positive effects of the tonsillectomy. I hope he's right! Glad your little one is doing so much better!

[qannie47]

By movements, I mean a constant movement in the legs. Karate kicks, when standing. It is more apparent when sitting or laying. Just cant seem to keep his legs still. He will stretch them out touch others with his feet, touch the table, anything that is in his path. If he is on the floor, he will roll backwards and lift his legs into the air. None of these are fast movements, just a constant, slow, fidgety type movement. When this is going on, I don't think he can stop for even 5 seconds.

 

That is always a part of his flare.

[JoyBop]

Would you say it looks like hyperactivity or aggitation? My DS looks that way as well and I always considered it as a ramping up of adhd like behaviors. Always a first sign for us as well!