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Continuing progress post T&A

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We're still amazed by the progress that our son has made post T&A. Our pediatrician kept him on the lower dose of Augmentin, and we saw Dr. Murphy this week and she extended that lower dose through the holidays, after that we'll try to take him off and see what happens. Dr. Murphy and Dr. Brown were both impressed with the difference in him since his last visit in October.


The only backslide we've seen has been the new neck craning tic. The other parents at his bus stop in the morning (who know very little about PANDAS, just that he has to go to special ed pre-k for it) have commented on how much calmer he is and how he listens and gets on the bus with no fuss. These are strangers noticing a difference in our child!!! Our best friends next door who have seen him at his worst are just floored at how well he can go out and play with the neighborhood kids now - something that wasn't possible a few weeks ago. The other day, he was outside playing with the gang and he rode his bike past his "limits". I went and got him and told him he knows the rules and now he had to sit in time out. He went and did his time out like a little man - he wasn't happy about it - but he sat off to the side and watched his friends play for 4 minutes - at the end I asked if he was ready to say he was sorry - he told me "No, I'm still angry, I need to sit here and think some more". He sat for a few more minutes and then came and said "Sorry mommy, I won't go past my limits again" and gave me a hug. That was it - no screaming, yelling, biting, kicking...just a pouty time-out and an apology!


All of the parents outside who have seen our struggles were dumbfounded. It was awesome!!! When he gets off the school bus every day now the first thing he does is give me a big after school hug and kiss - unprompted - it's become my favorite part of the day!!!


My daughter went to the ENT last week to see if she should get hers done - after the amazing response we've seen in him. The ENT agreed that even though she's mild PANDAS and has only had 4 positive throat cultures this year (he prefers 5-6 before surgery), with the fact that she's asymptomatic to strep and my son's PANDAS is far more severe, they need to be yanked. Less than 48 hours later - they were gone!


Because her symptoms have been far more mild, and easier controlled with abx (mostly seperation anxiety and emotional lability - completely gone after a max 30 course of abx)we didn't do all of the safety precautions that we did for our son (in-op and post-op abx). She was on abx leading up to the surgery, and for almost a week after - but it was the same dosage of cefdinir she was on for her last strep infection about 3 weeks ago.


I wish we would've. She seems to have had an uptick in symptoms. It could be from the surgery - it could also be from the fact that she had a strep infection 3 weeks ago and it might not be fully cleared. But her speration anxiety has been pretty bad. She won't sleep alone. She's let me leave her home and in bed when I take my son to the bus stop in the morning, but when I had to go back to work and leave her with her abuelo (daddy is out of town - AGAIN) she cried for 2 1/2 hours after I left her - unusual for her. This morning, she cried the whole way to abuelo's house - only stopped becuase she saw that abuela took the morning off of work to stay with her too. She's been pretty moody too. She's still having some pain from the surgery, and didn't quite bounce back the way my son did recovery-wise - so there's still a possibility that she's just not feeling well - but my gut is telling me that's not it.


She goes into our pediatrician next week - he'll do a strep recheck . She was postivie in September, did 30 days of abx, and then was positive again mid November, so he's afraid the infection didn't actually clear, so he wants to recheck her. He'll probably give us a refill of her abx (which she finished on Tuesday) if we still see syptoms. Thank heaven for a pediatrician who gets it and will give us the abx when we need them.


Overall - we're thrilled that we did it for both kids. It has been the thing that got us over the hurdle. Even with my daughters symptoms - it's been better. On a scale of 1-10, my son was probably at an 8 at his worst (compared to some of the stories I've read here), my daughter, at her absolute worst has only been maybe a 3, so even with her upswing right now - overall it's better than it was and is worth it!


Keep your fingers crossed for continued improvement!

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So happy for the improvement your son is seeing.


Interestingly, I read your post just after completing a phone consult with one of the big PANDAS docs, one of the ones whose last name is abreviated to one letter on here. And this doctor said that, through the grapevine, he/she has heard that those having the most success at the NIMH IVIG study are those that previously had their tonsils removed. Heresay, but interesting none the less.


Best of luck on continued improvement for your son and the same for your daughter. Alex

Edited by Alex
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Airial - So, SO happy for you that things are working out - especially with the progress your son has made. I hope your daughter is on some strong antibiotics now and I hope you are trying to keep inflammation down during this transition phase as she heals.


Best wishes for continued healing and progress toward health!

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