thereishope

By sheer coincidence I think my son is doing what you are explaining. for him, I know it's because he's learning to read and spell and he's carrying it over to just talking. So our reasons may be different.For my son, I'm not concerned. Do you read aloud to him as well? I can't remember how old yours is.

I believe RSV is a virus. Was your son a premie?

Schools don't like things like IEP's because it is a tedious process and ultimately it costs the district money because it may, in the long haul, include hiring more intevention specialists to cover all the kids. Once the IEP is in place I think it might be legally binding and like a contract. The district has no choice but to follow what it says. That is what your tax money is paying for so if your child qualifies, go for it.

http://emedicine.medscape.com/article/807927-overview

When the dr looked in my son's throat he said it looked red,but he also heard something in his lungs or chest. He had/has a cough. His rapid for strep came back negative, we are waiting on the culture. I read that with MP it can take 3 weeks from contracting it for the cough to develop! Scary.

I think what he is saying is in you original post you said . Buster said So, you say it came back +, that leads me to infer that he had MP in the last 4-6 weeks. I can't recall over the last month or 2 did he have a cough at all?

My son has not had PEX so I do not have advice for you but wanted to wish you the best of luck and safe travels. What insurance do you have?

I think it's a good mix of public, private, and homeschool. I do see a good amount of parents swicthing to home schooling because it is too overwhelming for their child during some exacerbations or they homeschool in hopes of limiting strep exposure. My children got o public school. Private would never be an option because of money. I could see that if I really had to I would try home schooling, but I will always try to keep in public. I have a 3 yr old at home and she is a handful. I don't se ehow I could do homeschool. My 6 yr old PANDAS son is well right now so luckily I don't have worries except for exposure to illness. My son has an IEP for speech. I could not get PANDAS into his IEP as OHI for issues with the diagnosing doctor. However, I have PANDAS listed in his health history on the IEP and the school is aware of our "situation". Even though it is a public school it is not like a big city public school. It's only 24 kids in his class (total class size about 80) and it is a family like administration. So, I think they would work with me if issues should arrise.

No tonsils doesn't make a difference with a rapid test. My son, after t and a, tested + on a rapid. All 3 of my never get a sore throat or fever when they have strep. The only way I know is through a test. Next time, maybe still do a culture. It's a good way for you to know what he was reacting to. Also, if the culture came back negative, it could maybe open the doors to seeing if strep is somewhere else. Have you discussed a prophylatic ab with him or are you waiting for Dr K? If you are putting him on a proph ab right, take him back for a folow up rapid and culture 2 weeks after finishing meds. I'm glad you have doctor who will give meds based on a clinical dx of strep.

You wonder how many families have more than one PANDAS child but will never know. Once you have one, you become more paranoid and hopefully that will lead to catching things like strep very early on and PANDAS will not have a chance to ever surface for the others. I say for my other 2 kids that to my knowledge they do not have PANDAS. The first and second time my PANDAS son had strep, neither of the other 2 did. When my PANDAS son had it the third time, both the other kids tested +. I probably caught it very fast because of my son's PANDAS symptoms. I took them all for test the day after an evening meltdown. Thus another reason why it's so important to test all family members. You don't want to chnage undetected strep lingering in their bodies. I do wonder how long it takes from contracting strep to having PANDAS symptoms come on. Meaning how long does it take for the inflammation to occur to the point of causing behaviorial changes. I ask because my kids do not get strep symptoms so my PANDAS son behaviors it what prompts us for a strep test.

I should probably add that my son was 5 years old and in part time preschool, so the school situation was very different than that of a high schooler. And I actually would not be alarmed by the sleeping. Personally, I would see that as something good. His body needs the rest. It is also the time when healing may happen. Now if he becomes unable to function because he needs more than 12 hours, that is a different story and may need to be addressed. But right now, don't worry about the increase in sleep. Those out of no where panic attacks could just be overload from the stress or sensory issues. What you think have no reason, may have plenty.

Good luck with the appointment. Have a safe trip!

My son will still worsen for the first 3-5 days on abs.Then it seems like he will plateau or start to improve. This is an ongoing process that has lasted anywhere from 6 weeks to 5 months depending on which exacerbation I refer to. Along the way, he had improvement, setbacks, and more plateaus. For some reason it seemed like if he was experiencing abump in the road, it would last for a couple days then he would be better than what he was prior to the bump. That happened more than once so I saw it as a pattern for him. I followed a lot on instinct. If I saw all behaviors that had been ridden resurface, I just knew strep was back. If I saw some setbacks, I'd give him a few days and see if it was soemthing to be really concerned about. Stress during the recovery period would definitely make things worse. I kept family get togethes to a minimum and I would be very aware of how he was acting in public. if I saw him getting more fussy or irritable, we'd stop errands and go home. With school, he actually did well most days. When I say well, I mean for the most part he got to school. Took a long time getting ready but went. He didn't necessarily interact or was himself, but he didn't have meltdowns. After school, I knew to just leave him be for about an hour and let him deprogram himself otherwise he'd go into overload. I do think it is very beneficial to jot down how days go. This helped me see patterns in his recovery and kept me from many of my own panic attacks. I know Buster has shared his rating system as well. If you see a rise then make sure to note what was going on at that time, including taking a hard look if he may have a virus, allergies, etc at that time.Hopefully, you will earn you own child's patterns too.

Maybe it depends on the school district or what you want out of the IEP, but I wouldn't be surprised if they'd want to do their own evaluations. Even if you have a doctor's request, it's still a lengthy process. Again, probably depending on district. If you want an IEP for next year, start the process now.

I don't know if I have any insights on this, but I can say my mom was allergic to penicillan. I have reaction to tertracycline. My kids do not have any known adverse reactions to anything.

Oh, sorry, when I said "cleared his eyes", I meant they were red from allergies. Once the allergy meds took away the redness, I noticed his PANDAS calming down too. It was a clear cause and effect.

If your child goes to private school, they are still eligible for services from the public school district. I do not how that would work for trying to get special accomodationsin a private school. That would be hard to enforce from the school distric. Any special accomodations should probably be addressed with the privately school directly, maybe by recommendation from any intervention specialists. The IEP process is long. Contact the school district main office and they can direct you from there. If you are switching to public school, you can get an IEP in place before he starts.

What I was thinking if any of those kids came into contact with the same strain of strep that eventually attacked some of the kids in this forum in CA. Whether the kids in the article were labelled autistic when they may have had PANDAS. It also states how the kids cited are mainly from parents of higher education. Same as what laurenjohnsonsmom was thinking in her opinion poll for PANDAS kids and their parents.

Here's one link that explain strep and reactive arthritis... http://www.mayoclinic.org/medical-edge-new...007/oct-29.html

Welcome. I will reread your post once I wake up more. But I did see reactive arthrtis. I believe that can be caused by strep. I remember posting a link about that awhile ago. I'll look for it. You should get some blood work done.Some PANDAS kids react to exposure only as well. We should make some pins for our club and wear them so we can easily spot each other in crowds:)

You say dd7 doesn't have allergies. Perhaps she does and she just doesn't have physical signs of it. I remember one person saying their child tested highly allergic to cats and dogs. they own pets and child never showed an allergic reaction. Last spring, my son's only sign of allergies were red eyes. Yet it caused an exacerbation in PANDAS symptoms. PANDAS symptoms calmed once the allergy meds got in his sytem and cleared the eyes. Now, the ped think his current sinus infection is caused by allergies, yet I cannot see obvious allergies. Yet, he is doing better now that he has been back n Augmentin for the sinus infection and is taking Flonase. Those allergy test results might just surprise you.

You'll know when you hit the point of residual OCD. I just knew it with my son. But, you know what, when I finally realized the remaining OCD wasn't going to go away on its own and we started to tackle the remaining head on, it actually went away rather quick ( compared to how long it may take for "regular" OCD). Still anxiety, and wasn't easy, but I was surprised.

I was never tested with my first two kids because it wasn't a standard test but when I had my third baby in 2006 it was now a standard for the state. So with my first two kids I never knew I was +. I feel bad for my kids. When they get older they have to be tested to see if they are carriers. I can only imagine what it would be like if they are and they have to tell their future spouse to be tested before they have kids. I think most kids are idenitified as babies that they have it so you're kids are probably in the clear.

I wonder if the clusters they refer to are anywhere near the cluster of PANDAS kids in CA. http://www.msnbc.msn.com/id/34730544/ns/he...#storyContinued

Wow. Is the test they give the pregnant woman, the same for the test they give the father? I tested + as a carrier. My husband tested negative.