If I had a nickel for every time I posted "We have strep again&#33

[airial95]

So over the weekend our little man was just out of his mind hyper. We gave him motrin a couple of times - nothing. We actually were starting to convince ourselves (like the doctor warned us early on), that there is a possibility that the ADHD in our son may be a seperate issue from the PANDAS, and we have to be mindful of that as we're treting.

 

Then Sunday night he wet the bed - again. He did it a few times over the last couple of weeks, but at least 2 of them were when he was with the sitter at bedtime, and they never good at keeping the kids from drinking right up until bed time - so we weren't sure.

 

Well, sunday's wetting fit the bill - nothing to drink after 6:30, got out of bed at 8:30 to go potty, and fell asleep right after that - woke us up at 3:30 with a wet bed. Crap.

 

I really need to stop doubting my gut (I say this every time) because I was convincing myself I was crazy and the culture was going to be negative yesterday. We usually see a ramp up in his classic OCD symptoms.

 

Silly me!!! They keep changing as he gets older with each infection. Duh!! His new one is taking change from our change jar and putting it into a red solo cup to keep for "later". I realized last night that there are red solo cups of change stashed ALL OVER my house! Duh!! Didn't see that as a little OCD-ish???

 

The other weird thing he's been doing lately, and I've just convinced myself it's a phase because he's 3, but now I wonder - he changes his name every day. Each day, he wakes up and tells us what his name is that day. It's usually a favorite character (we've been all of the Thomas trans - even the girls, Phineas, Ferb, Bambi, Thumper, Flower, Bolt, Perry the Platypus...you get the point). Is this just a quirky 3 year old thing - or is this OCD related. He gets mad if you don't call him by his "name" for that day, sometimes they change mid day - but not often. Anyone dealt with that??

 

Anyway, when we were there yesterday, I expressed frustration to our ped that no matter what we do - he is still CONSTANTLY getting strep, and told him about our upcomming appointment with the immunologist at All Childrens that Murphy is sending us to. (Even though all of his bloodwork continues to comeback frustratingly normal).

 

The ped said that his tonsils look HUGE, and we would wait to see what immunology says, but he's recommending a T&A. I spoke with Murphy about that a few months back and she advised that it wasn't recommended just for PANDAS, and the research on it's effectiveness for PANDAS is about 50/50. So she didn't recommend it.

 

Now, with this being like our 8th positive culture since January 2010 (not to mention the impetigo infections, and nasal infections), and we were on 17 months of abx out of the last 20 months - I think I have to agree with our pediatrician. (We were not on proph abx at this point. We just finished a 30 day course about 2 weeks ago because my daughter had strep - son was negative at that time, but was but on a course as a precaution - totally love our ped!)

 

Now - the main reason I'm posting - before we go down the T&A route, I'd like to hear some pros/cons, advice, etc. I've already mentioned to the ped that I would not do it unless we had pre-during and post op abx - and he agreed (the ENT may be another story though).

 

What else should I be asking when we meet with the ENT, what about immunology??

[Dedee]

Wow that really stinks. I just want to throw in my opinion here because your son is so young to be getting strep so much. My oldest son was the same and I wish I had taken his out years before I did. I realize that some doctor's say you shouldn't blah, blah, blah.... But my son was getting strep over and over and each time his PANDAS would flare to a new level. So I figured nothing to loose.....he was getting worse anyway. The ENT put him on a high dose of Augmentin a week prior to surgery and then he was on Augmentin for two weeks after. He started getting better immediately and hasn't had positive strep since. That was four years ago. Now understand that he isn't healed of his PANDAS. He still has residual PANDAS issues, but I don't have to worry every time strep goes through school that he is going to catch it. When they took out his tonsils the ENT said they had huge pits that were full of infection and he didn't think we would have ever gotten all the infection cleared out. Some children do go through a period where they are worse after the tonsils are removed because the infection is released in the system. I think that is why the antibiotics before and after are so important. Also, keep in mind, he is already getting worse everytime he gets strep and he will continue to do so over and over. My vote is pull them and do it now.....he is a young PANDAS child who does not need that strep hanging out wrecking havoc on his little system. JMHO......

 

Dedee

[MichaelTampa]

One reason to want the tonsils longer-term you're probably aware of, is they serve a function in the body to help deal with infection. I can't speak to how important that is. If you really want to do something about the tonsils but still want them longer term, they is a kryo freezing off procedure where they do grow back, but not available in the U.S., I believe only available in Germany. So, not in any place to suggest how important any approach would be, but just want to make sure you're aware of that possibility. Apparently there is a freezing off procedure available in the U.S., but not in a way to grow back, more as a similar result to cutting them out.

[Stephanie2]

I'm so sorry you are going through it again! I just wanted to say about the name changing thing...I sometimes suspect that the 4 year old across the street has pandas. And she changes her name each time a neighbor walks by and asks what her name is. It's always a different name. Hmmm...

[airial95]

Sometimes I wonder if it's just a cute quirky thing he does...but then other times I just wonder. I guess that's going to be the story of my life with PANDAS!!!