thereishope

Some psychologists take insurance. The issue is finding a decent one. I started by contacting my insurance via mental health benefits. There's a whole different phone number and website for it. I then got on the phone, called around, threw the word PANDAS out to see what the reaction was and chose one from there. I called numerous offices and ruled many out within the first couple minutes of the phone call.In person, the first one was awful. The second one was good. It's time consuming but needs to be done. Have you read any books on OCD? That helped me understand my son better and help him overcome what was remaining. Side note...a couple months after therapy, I got something from insurance in the mail to sign stating that they could have access to my son's psych med files. I was not comfortable with that. I did not sign, did not return. It did not affect civerage by declining them that access. You can also contact your ped. Some have therapsist in the same office setting and they can bill you different.

Send your son hugs from all of us ....you get some too

I feel so bad for you and your son!!!!!!!!!! I agree that doing a steroid (with a previous bad reaction) without being on an antibiotic isn't a good idea. I don't know what to suggest about the severe inflamation though. Do you have an urgent care by you if you feel you've reached a dead end with your current docs? Now with the addition of a fever, I probably would be nevous to wait this out.

Let's hope you don't ever have to find out how he reacts to another confirmed infection! There's always a chance he won't contract it again. Here's hoping and praying...

Just as a side note...my two kids that break out with the hives....no Lyme here and it's not with every illness.

Have you tried Keflex? It isn't listed on your list of tried antibiotics. I know a few have had sucess with that.Lyme Mom, if hives are the physical symptoms indicating allergic reaction, I think it's acceptable (and safe) for everyone to assume he's allergic. How bad are the hives? I do want to throw out there when two of my kids are sick, they occasionally get hives when they are getting rid of (shedding) an infection....but this is usually with viruses with them. However, I wouldn't mess with experimenting, continuing an antibiotic if posssibly allergic, and have the allergy worsen to the point of closing the throat, etc. But perhaps this is something to discuss with the doctor.

I messaged you a possible parent contact.

Can I ask...when you say "no longer responsive to strep" do you mean when he is only exposed to strep or he has had a strep infection with no increase in symptoms?

I'd check out Whole Foods if you have one by you. I'd think they may have it. Do you have strep right now? If unsure, also take a decongestant/nasal spray in the event the white streaks are mucus from drainage.

Glad to hear surgery was uneventful! One question, did the ENT say it was ok to take the Ibuprofen today or does it not matter since it's post surgery? Hope you have a speedy recovery!

I totally agree. I read that part a few times to see if I was misunderstanding it. In other articles, it has cited that when a pregnant woman gets the flu vaccine, it increases their chance of having a child with Schizophrenia, and goes along with the idea of this article. So,why would one want to vaccinate a pregannt woman or newborn. It does say it would be a neutralizing antibody. So, maybe it's something different than the type of vaccine I'm thinking about? That one did throw me for a loop.

http://discovermagazine.com/2010/jun/03-the-insanity-virus/article_view?b_start%3Aint=0&-C It's too long to cut and paste the whole article. Please follow the link:)

Good! ....as long as it doesn't turn into hyperactivity:) Hopefully it was just exposure doing it's thing and he'll be better now.

Oh, man! Exposure or strep?! I hate that! Is he on a Omnicef doasge for an active infection or a prophylactic prescription? If it's low dose, switch him to full dose for now in the event he did contract strep. Also, not sure if it's an old wives tale or not, but limit dairy if he could have strep. I thought it was believed to breed strep faster. As for his behavior, it actually sounds more like a meltdown than a rage to me. My son had a lot of both. Rages in my child involved phycial hitting, kicking, etc. The want to inflict pain on someone. Meltdowns was just that...a meltdown.

When I would see my son getting stressed out, I tried to quickly change subject/remove him from the situation. yes, it was a chain of events where if he got overly stresses (breathing faster, panic look) I would then see a ramp in symptoms following. But, in what I can remember, it wouldn't be a long tern setback as a result. Maybe a day or so in my child. What isn't "fair" is that with OCD, anxiety comes along with it...how can you really avoid it? All the more reason to get these kids diagnosed, on antibiotics and start the healing so the OCD can start to fade away on its own and the child's reasoning can resurface and you can start to use techniques to calm them and perhaps help them overcome some OCD witout a full meltdown. Also, as a child heals, their own coping skills will slowly come back.

When I did a steroid burst with my son, I actually pursued it becasue he wasn't eating anything,losing weight and was threatening to do self harm. His OCD was also debilitating, but that wasn't even the reason I wanted one. I have read some parents on here saying the first steroid burst they did on their child worked, but a subsequent one didn't do the same magic. I really don't know why or all the factors involved (whether the dosage varied, the time between bursts, etc). But this is something to keep in the back of your head if you choose to do one. Has he had a steroid before? How does he react to any other anti-inflammtories (ie Ibuprofen)? Have you thought about trying to increae the abs just to see if it would help with the remaining symptoms? Note: I do NOT know dosing for antibiotics so hopefully someone else will chime in about that.

Welcome. Can I start by saying that this whole idea of docs automatically dismissing PANDAS due to a lack of tic is really bothering me on a personal level. My son did not have any tics at all. To think that if I took him to any of those docs that said that, he may still be suffering and his condition would have went undiagnosed and detected sickens me. As for that doc saying he has a large practice w/ no PANDAS...well, they probably have PANDAS and just never diagnosed it in those kids. Anyway.... you've gotten some good questions/advice on here. Here are some useful links you can look through. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

I think it may depend on where they are haboring the hidden strep. I think it doesn't really matter if they are asymptomatic. Carriers can still transmit the bacteria. I'm not a science person, though. I'm a stay at home mom so my expertise is doing laundry, cleaning and referee kids:)

I am so happy for your daughter and you!

Hm....yeah....that's how we treat those kids....hm....don't know how to respond. I sure hope she doesn't think tonsil removal means they won't get strep again. Even if you play by their numbers, you're child still has a 20% chance of getting strep. Notice, when they throw the numbers at you, they always word it that their chance have declined by 80%, but when you switch it and say they still have a 20% chance of getting it, it sounds a lot worse.IMO, that's high for a child that has an autoimmune disorder that is directly affected by strep. My son got strep one month after surgery. My ENT said my son just had bad luck.

I really don't have an answer for you about antibiotics. Again, all I can say is my son who is definitely PANDAS experienced no change in hand writing, drew nicely, no tics or chorea. If I had taken him to appt while in exacerbation, I suspect he would sit still unless they tried to do a physical. But he was also 5 years old at the time. I don't know how he would react to a physical during an exacerbation now. If you wish your child to be put on antibiotics while waiting for the Lyme test to be run, I would contact her, express your concern and see what she has to say. Right now, where is she is right now in terms of any symptoms?

Well, I can answer this from the calm point of view by saying that you're right...you cannot put your son in a bubble. He seems well protected being that he is on 2 antibiotics. Then I answer this from my paranoid, nervous Mom point of view and tell you the honest truth. If it was my son, I probably wouldn't send him. The boy went on antibiotics today. Yes, doctors say in 24 hours (which you just make the cut off on Saturday) they are not contagious, but it seems soon. Also, I wouldn't know if any of the other kids (who were also exposed at school) had it and just didn't show symptoms yet or didn't go to the doctor. I know I am paranoid, but I'm just being honest. I just know myself and I probably wouldn't send my child.

I agree with everyone else that he could be reacting from exposure to the bacteria, however, there is a chance he could contract the Myco P and just not be showing physical symptoms of it yet. I read that someone can have Myco P for 6 weeks before developing the cough or any other symptoms. Since you see a ramp in other son's PANDAS behaviors, I would err on the side of caution and ask them to switch him Azith for now as well. You can also contact your child's teacher and ask if a lot of kids are coughing. When my non-PANDAS son had Myco P, I did that and she almost the whole class was coughing. Your son may just be exposed every where he turns right now and that would have a high chance of causing the ramp up.

I don't recall if I said it in my email, but I think I did mention it in a comment on the article.

Perhaps that boy who said he was born with strep meant his Mom had strep B while pregnant? Last, year, almost every day I would ask my boys if anyone was absent. If there was, I'd ask who it was and where they sat in relation to them and if they were their partner for anything. I just realized right now as I write this, I don't do that this year. I know I am not getting too "comfortable" but maybe it's a sign that my own mental and emotional healing is slowly starting? I hope.