Keep the Prayers and Good Vibes coming!

[airial95]

We were hoping that the T&A would at least stop the proverbial bleeding of our last 2 years of constant strep infections/PANDAS episodes.

 

I was cautiously optimistic late last week when we started to see little flashes of his old, mellow personality coming back. He wasn't freaking out over food, eating healthier options without fighting (and actually asking for them!!) - but I was keeping my optimisim in check - telling myself he was still just sort of out of it from the surgery.

 

This weekend, he wanted to go to church - so we let him go. It turned out to be a late service (we forgot) - which normally would be a BIG issue, instead, he was fine with the change. We actually went to a restaurant to get breakfast and only had to give one warning (him and his sister wanted to crawl under the table...what kid doesn't). We were AMAZED.

 

Last night, I decided to take them both food shopping while my husband finished the yard work. This is always a stressful event with both of them, and often ends with a phone call to my husband to come get them so I can finish. They were my little helpers the whole time, and he even stayed in the cart (the rule when we get the "rocketship" cart) without complaint - even when he asked to get out and I told him no. Not even a single warning!!!

 

Then, this morning was the icing on the cake. Him and his sister were playing, and for some reason he poked her in the eye (wasn't in the room, don't know why). He apologized, but I told him he still had to go to time out because we don't hurt others. (Normally this is a big test - followed by an hours long battle of the time out) He went into time out, sat for the full 4 minutes, came out with a hug and apology to me, a hug, kiss and apology to his sister, and then marched straight into the bedroom to tell his Dad that he poked his sister, but he was sorry and he did his time out and gave her a hug.

 

We're still having issues during the night/naptime with night terrors and him waking up crying, problems we didn't have before the surgery.

 

Could my kid be back? Really?? I'm still waiting for the other shoe to drop - so any prayers and good vibes...keep sending them our way please!!!

[thereishope]

I hope the improvement remains/continues! Is your little girl on proph abx? With her hx of strep, have you discussed with Dr M the possibility of sporadic at home strep tests on her to try your best to remain a strep free house for both of them?

 

I can't remember the time frame, but at what point is it okay to give Ibuprofen and fish oil after surgery? If you see any setbacks, and it is okay to give Ibuprofen again, give it. Let's keep this good momentum going. As for fish oil, I never stopped giving it. Even if he seems to be well, lay the foundation for remaining wellness.

 

Keep in mind, even if he is improving, you may see a setback here and there. That's part of the healing process and expected. It's if he doesn't snap out of it that the red flags go up.

[HT's Mom]

Arial95, I am so happy to read this from you!! I have been so curious about the tonsils issue lately. It was never on my radar until recently, but I keep hearing success stories, and reading articles about it helping Pandas, so it is great to hear this from you, at least so far!

[Dedee]

I really hope this is a lasting thing. It was a great help for my oldest son and it did last. Please post again and let us know. Thinking of you and sending PV.

 

Dedee

[airial95]

Things are still on the up and up here!! Yesterday, I opted to take him out to lunch to a "fancy" restaurant (Ruby Tuesday's - took my daughter there a few weeks ago before I took her to see Peter Pan at the performing arts center and she keeps telling him about the "fancy" restaurant )

 

Mind you - this is something we couldn't have done - nor would we have even attempted 2 weeks ago. Even when he was "good" - his hyperactivity always prevented any sort of outing to a restaurant that didn't feature animated characters of some sort.

 

He sat the whole time, was very polite with the waitress, ordered his meal on his own, ate well, and when he couldn't open the "fancy" juice boxes they had (a former trigger) calmly said, "Actually mom, I could use your help" instead of freaking out.

 

We even got dessert!

 

The best - as we were leaving - the two ladies at the table next to us said to me "Good Job mom! What a wonderful little gentleman you have there!"

 

YES - I was complimented on my PANDAS kid's behavior. A day I NEVER thought would happen!!! I called my hubby at work to tell him and he said I must have picked up the wrong kid at the restaurant!

 

We're still having sleeping issues - he's waking up crying/scared several times a night and is fighting napping and bedtime (something he's never done before). While that stinks - the fighting is nothing really too much worse than an average tired, cranky 4 year old who doesn't want to go to bed. And it passes fairly quickly.

 

We are doing ALOT of praising for all of his good behavior - hoping that if he back slides the postive reinforcement will have an impact

 

The ENT called with the cuture results on his tonils - surprisingly it was negative so he's not willling to extend the 7 days of Augmentin we currently are on. So now we're left with the question of whether his improvement is from the surgery or the Augmentin (which he's never taken before).

 

We have an appointment with our pediatrician tomorrow(who will likely extend the rx for at least 30 days with no problem - I LOVE that man!!) and I emailed Murphy yesterday, and she seems to think it's the abx not the surgery, she said she's never seen a rapid result like that from the surgery itself. She's anxious to see him again, and we already had an appointment scheduled a week or so after Thanksgiving.

 

I cry every once in a while because I feel like I'm just getting to know my child for the first time. He started all of this at 19-20 months old - he just turned 4 - so we've been dealing with PANDAS kid longer than we were the normal kid. I forgot just how mellow and easy going my son was prior to all of this! (All of my thoughts that the abx got us 85% back to normal seems a bit over-eggagerated now that I see him like this!)

 

My husband reminded me yesterday how the general "joke" about our son as an infant/toddler was that he was the "floor model" - he made you want to go and have kids of your own because you never the hard parts!

 

Thank you all for your thoughts and prayers - and we really hope to see this continued improvement stick around!!

[MichaelTampa]

Great, so happy to hear this news!