bronxmom2

Hi, I just wanted to let everyone know my son is feeling much better today. I was feeling good, actually, we had a good afternoon and he was super affectionate and sweet, so I went to sleep feeling much more optimistic, and today we were having a good day... then he had a meltdown when a playmate had to go home this afternoon and I am again worried. Anyway we are done with the tylenol with codeine now-, hasn't had any since last night- from now on just dye-free ibuprofen-- it's scary to think of how many things can affect our kids-- anyway I KNOW the red #40 is a major culprit-- why don't they just outlaw that stuff????-- Thanks to you all for walking me through the last few days, it's been tough. It's horrible worrying this much about your kid. It's really affecting my marriage because my husband (not my son's father) thinks I am exaggerating the physical/medical aspect of all this. And his real father hardly ever calls.

Good luck! Can I ask, how much did the IVIG with dr. K cost, all together? Also, did you notice ADD symptoms only after the steroids? Or did the steroids just not improve them? Are the ADD symptoms improving with the IVIG? I am wondering if any of you have considered homeschooling to minimize exposure to illnesses? I am considering homeschooling for many many reasons-- this among them-- though my son is just so moody and intense and stubborm, if don't know... Anyway, good luck and do keep us posted.

I just seems a little strange that a T&A could trigger new stuff like this, if that's what's happening. Good luck to me trying to convince his doctor of it! I will keep a very close eye on him while the pain is subsiding. I have not started the pine bark extract yet, because at this point I can't get him to swallow much of ANYTHING. I think his throat needs to heal. He was very very calm and poised and considerate, post-op, for the first three days (though in lots of pain)-- then this sudden shift. He got a prednisone shot during the surgery, so I'm wondering if the calm came from the steroid, then the anger when it wore off. Or something like that. God... this is so complicated. I don't know what I'd do without this forum, though.

Thanks Kim, I'm so sleep deprived and distracted that I'm having a little trouble getting my mind around the problem with the tylenol. I'm sorry to be stupid, after all you've posted about this, but...Tylenol can trigger PANDAS stuff too? Will it go away after we stop using the tylenol with codeine? I don't think we'll need it more than a few days longer.

Thanks again, Colleen. I was actually able to google and decipher this myself yesterday evening and saw that he was indeed getting the treatment dose. It's amazing how you stop trusting the doctors and become an expert on this. (I had assumed it was the treatment dose, because it was the dose originally prescribed when he was sick with strep in December... but when I saw him raging and appearing paranoid, I got scrared that they'd been underprescribing it the whole time!) Anyway, yesterday he was feeling much better, but he awoke in the middle of the night raging and in pain. I am very nervous about this new, angry and defiant twist in his personality. I'm still hoping it's just frustration with the pain... but meanwhile, I am horribly sleep deprived and feel myself sinking into a terrible hopeless depression.

Colleen-- he is taking 3.5ml twice per day in a solution that's 250mg/5ml suspension 100ml. As a nurse I'm hoping you can interpret that. But it sounds to me like he may be getting only half the dose you're recommending. He weighs 55 pounds, if that makes a difference. I am assuming he got IV antibiotics during the surgery, but I'm not sure. Thanks so much!

oh, god.... yeah, he's been on cefdinir the whole time. But why doesn't anybody warn you about things like that???

Yeah, I know, it seemed PANDA-ish to me, too... but since he's also in terrible pain, which could make someone really cranky, I'm going to let that subside and see if the anger remains when the pain is gone. He was acting strange last night, too... kept saying we were making him "nervous" by "crowding" him when we were sitting by his bed... then when I tried to sooth him and told him I was giving him "cartoon therapy", he got very agitated and started saying "but cartoons are bad for you, cartoons are bad for you" over and over. Ugh. I wonder if something can happen, like antibodies can be released in his system when infected tonsils are removed???

My son's bottom was itchy for three months last year, it culminuate in strep throat and antibiotics cleared it up. (This was before I knew about PANDAS, and at the time I just thought it was coincidence.) But I think your son is ON antibiotics, right? I also feel it was strep hiding in his digestive tract. Why can't the doctor do a skin strep test on the anus? Can your son tell you why he's scratching it? I mean, if its a tic or something, won't he say he doesn't know why he's doing it? But if it's itchy, it's itchy-- for a reason!

Hey guys, Yeah, I had enough sense to go back to the tylenol with codeine when I saw that his pain was becoming unmanageable. I guess I'll try giving him both. I wish they had motrin with codeine. I guess I'm still trying to understand the long-term affect of the abs on the immune system (if there is one) and why doctors are so fearful. I really need to understand this. Regarding the developing immune system of the infant: I've always been a big one for allowing my babies to get really dirty outside, in the playground, etc. There was a recent article in the NYTimes about the importance to babies of exposure to dirt and worms (it's the evolutionary basis for why babies put everything in their mouths)--- but I did this for my PANDAS boy too... Thanks... everyone I've spoke to assures me he'll come through this soon. An additional thing... maybe the pain is just making him really angry, or the experience is triggering something... but he just seems very angry, particularly toward his stepfather. Every time my husband goes near him, my son just bristles and turns away and says, "I'm really mad at you and I don't know why!"

thanks, colleen!

Hi, my son is in day 6 of his recovery from T&A and he's still in a LOT of pain... I am wondering if recovery time can be impacted by the state/size of the tonsils... or, if it's as I suspect, and my son's had a simmering strep infection for years, that could cause him to have a harder time recovering? I'm just wondering if PANDAS kids in general have a harder time recovering from T&A, since I've read about a few difficult recoveries here. He hasn't bled and has no fever, so the doctors I spoke to are not worried. My husband is worried that the long-term antibiotics he's been on this winter have compromised his immune system. I don't know what to say to that. I'm taking him to see his pediatrician tomorrow, and I'm afraid the guys gonna get really mad at me... I went against his advice and switched my son from amixicillin (which wasn't doing anything) back to cefdinir... my son was getting really crazy on the amox. and I just needed to do something... I think I did the right thing but I'll be nervous to see the guy tomorrow. I need more Cefdinir. I think it's more important than ever to continue now, post T&A, right? Meanwhile, here's my poor beautiful son, moaning on the bed, with a compromised immune system, and I did it all to him!

Mine does. Though in general he refuses to write, so I see very few "subsequent" lines.

Hi greeneyes, We have not done IVIG so I don't have advice about that, but I just want to say... how awful! Do anything you have to do to help him!

Thanks guys, Do you mean I should be giving him Ibuprofen now, while he's recovering from the T&A, rather than the tylenol with codeine prescribed by the hospital? I was giving him ibuprofen daily before the surgery, but stopped just beforehand because I read somewhere it could increase the risk of bleeding. His recovery from the T&A seems a little prolonged, too... it's been 4 days and still no appetite and clearly in pain. No blood, no fever, and his spirits are pretty good, so I'm not alarmed, but if he's not feeling better tomorrow I'm calling. Boy, is it QUIET in our house!!! My next concern is... will my pediatrician now consider the PANDAS "cured" and refuse to prescribe more abs, and make us wait for it all to come back? Any advice on how to work with my pediatrician (who's been fairly supportive but doesn't think ds should be on anything stronger than amoxicillin) as we move forward? Thanks!

MD Mom, I hope your family managed to have some fun in Disneyworld!

The tonsils did not look that bad from the outside. In particular, they did not look particularly large, but in fact they were huge.

Has he been on antibiotics??

from what I read, after reading the itchy bottom discussion, they can easily do a strep test on the anus. I tried all kids of anti-worm, anti-fungal stuff last year... but all that worked was antibiotics that were given when he finally got it in his throat!

Thanks for your kind wishes... the surgery went well and the surgeon said they were perhaps the worst he'd ever seen. Infected for years. He is recovering fine, though he's been in more pain than I expected! He was given a big shot of prednisone as part of the surgery, and I was advised to be on the lookout for how this affected his PANDAS symptoms... if he seemed to respond positively, steroid treatment could do him a lot of good. But it's hard to tell-- I'm inclined to think he's subdued by all the pain he's in, but he's certainly calmer than I've ever seen him! I have learned so much on this board! For example I just realized that strep was the cause of the itchy butt my son had last year for 3MONTHS. and which culminated in the dreaded sore throat trip to the doctor. I remember that I asked about the itchy bottom when I went to get the antibiotics for strep, and no one every suggested they could be related. Thanks again, I'll keep you posted!

Thanks for the responses. Yes, only the ASO titers were measured. Since they were only measured after all this started, I don't know what his baseline is. Could 500 be "normal" for some people? I have been not feeling that hopeful that the T&A will really help him, but not that it 's imminent, I feel so relieved and happy. (I had to beg and plead to get him in before June)...I guess I'm hopeful after all! Thanks again

When my son's ASO titers were first checked, in early Feb., they were about 500. They were checked again last week, in preparation for a T&A tomorrow, and they were exactly the same, after 6 weeks of antibiotics. (Though for two weeks of it he was back on amoxiccilin and all the symptoms came back) Shouldn't that number be coming down? Also, he is having his T&A tomorrow... any advice? Thanks!

So is there some idea that stimulant ADHD meds may somehow "backfire" in PANDAS kids as SSRIs do? Anyway, I'm trying the pine bark extract! Sounds like the fountain of youth, too.

I too have wished that someone would say SOMETHING about the long-term prognosis of this thing! From my own experience: In hindsight, I feel that I may have had PANDAS myself. I suffered terrible, irrational feelings of guilt through my entire childhood, and also had a verbal tic. I continued to suffer emotionally through my twenties, and the diagnoses I received (bipolar, etc.) never totally made sense to me, so I disregarded them. Long story short: I was completely CURED by pregnancy.

And by the way, Colleen, you must be exhausted with TWO of these little boys.