thereishope

Susie, welcome to posting! Meg's Mom is so well versed on OCD, she is the perfect person to answer your question(s). Along with what she has already posted, here is a link to OCD in young children as seen by parents on this forum. Perhaps after reading it, you will see other tendencies your daughter may have. Signs of OCD in a young child http://www.latitudes.org/forums/index.php?showtopic=6153&hl=

It's pretty common to take out adenoids at the same time as tonsils. My son had them both out at the same time. But are you suppose to call Dr L for that or a local ENT? Perhaps if a local ENT won't supply you with adequate antibiotics and maybe a possible steroid burst, if needed post t and a, Dr L would. I say if you are freaking out and concerned, put the call in. If he was really improving then you are starting to see a consistent downward spiral, she may offer you something. I don't know. You don't know...not until you talk to her. It may take a few days for her to get back to you. I'm still a bit confused about the insurance. Even if you call her tomorrow, nothing would be done immediately, except for a possible refill on meds. If you need to wait until Mon to fill the rx so insurance pays for that, at least you have things squared away and ready. If it's a matter of making an appt, you can make an appt now and your insurance will be active by the time that comes around. If she can get the balling rolling fast on something, just tell her insurance won't be active until Monday. Offices are used to things like that. People change jobs and insurances all the time.

If it will make you feel better to speak with Dr L, then I suggest putting the call/email in now. That way you have a few days for her to respond. As for contacting the employer...what do you need to contact them for? As for insurance, you are usually on it once you start, even if you don't have your insurance card yet. Unless, there is a window of waiting. sometimes employers do not give insurance until you've been there for a month. Really, the only info you need is the group # and subscriber #. You don't have to the the employer any medical details.

About your appt, is your mom going with you?

I'm glad it went smoothly. I hope things continue to go well!

What!!!!!! How insulting! See, I would LOVE to see these "doctors" faces when they read that NIMH post and it specifically uses the acronymn PANDAS. I am so happy that was written prior to any name change.

I will answer this way...I have read this forum and other PANDAS pages daily for quite a while, this includes reading it last year when H1N1 surfaced. I know kids have had exacerbations both following the vaccine (both the seasonal w/o H1N1 combined in it and last year's H1N1) and they also had exacerbations and setbacks when contracting the actual virus. As to which exacerbation is more severe, it depended on the child, it also depends where they are at in the exacerbation and/or recovery. My son had probable H1N1 last year and he jsut had a blip a few days post fever. But, again, that is just my child. As for H1N1 that will now be combined in this year's seasonal vaccine, it is the same H1N1 that was given last year. I remember reading how those with neurological and maybe even psychological problems should be cautious with the H1N1 vaccine. Ultimately, it is your decision. If there are other health factors, such as asthma, it makes the decision more difficult. I have read the the H1N1 virus itself is on the decline and no longer such a concern. Definitely do not do the live virus or any mist. As for the shot, feel comfortable in whatever decision you make and IF you decide to do it, make sure your child is healthy at the time (no congestion, temp, etc).

You're not the first one who said the makers of the vaccines said they had never heard of those types of reactions VAERS Vaccine Adverse Event Reporting System http://vaers.hhs.gov/index

So you say that one can say Lyme can aid in PANDAS but not all PANDAS cases are spurred by Lyme. Correct? Because I agree with that.

I need a brown hair emoticon with gray roots showing Hey...we gray young in my family

Best of luck today with IVIG! Keep us posted!

Here are some useful links that you can print off. I chose certain websites just becasue it is more printer friendly with all info on one page. http://www.pandasnetwork.org/buster.html http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf http://www.nimh.nih.gov/about/director/index-ocd.shtml

I'm bumping this question up since it is about to go onto the second page of the forum without a response. The reason I haven't responded is because I'm not sure how Lyme protocal differs from PANDAS.If you've been reading the Lyme posts lately, they are explaining how someone with Lyme can have a ramp in symptoms due to strep. So, is that a PANDAS reaction or part of the Lyme? Does that affect the antibiotics, dosage (full strength vs prophylactic), etc? I don't know. As for the Ibuprofen, the duration of giving it varies on here. With my child, I think the longest straight I gave it was 2 weeks.

Do you have a hospital in your county? You could have some tests run through them (except the Cunningham test since that is by sending out for a kit and paying upfront) and then apply for financial aid. You can even apply for it prior to the appt so you know how much will be covered. All hospitals offer this, not only the inner city ones. The hitch is you have to live in the same county as the hospital you go to. I have insurance, but it is awful with sky high deductibles. I've applied for financial aid before even with having insurance.

Gee, I wonder what post that was But, no that was not a salesperson. I can assure you.

So his allerges are acting up? Just what you don't need right now! Add another variable into the mix. Will these kids ever get a break? btw...when did he start school? Maybe the stress of starting school, lack of sleep by changing schedule, exposure to other things are adding to it too. There's so much being thrown at him right now!

My son would spend hours creating things then take scissors and cut it up into piece just to throw it out. Or he would crumple it up and toss it. This boy would put so much detail and though into his work and wouldn't keep it. He didn't necessarily take things off our walls, except for artwork on the fridge. However, we weren't allowed to take pictures of him. We learned to turn off the sound on the digital camera so he wouldn't know when they were being taken. Now, he saves his art, smiles for photos and will even ask for pics to be taken.

I think according to Buster's survey,the prevalance of PANDAS is higher in boys. It was 65% boys, 35% girls. In my family, so far it appears only one child has PANDAS. I have 2 boys, one girl. Now, the strep infection that triggered his first PANDAS exacerbation, only the PANDAS child had strep. We ruled it out in the other two. My two other children have since had strep with no PANDAS symptoms, at the same time as my PANDAS son's third strep triggerd exacerbation. But if the strain of strep plays a factor in starting this process, perhaps the strain in that case where all 3 of my kids were sick differed from the strain that start my PANDAS son's saga.

My son entered kindergarten last year without a 504 or an IEP for PANDAS. Now, I did have a heart to heart meeting with his teacher and laid the cards out. I had no idea how the year would go since he was just entering remission and he had so many back to back strep infections the year before. I felt by being open she would watch out for my guy more and I believe she did. I needed her to fully understand how I NEEDED to know if behaviors were changing or of concern and the urgency of importance of keeping him healthy and, specifically, strep free. She said he was the best behaved boy in the kindergarten class! She also knew how important is was to me to know his accomplishments, strengths, and more. If the school district does not supply teacher emails, I suggest asking the teacher for an email address and give her yours. This will be good for any questions or concerns the either of you have. It also allowed me to check in on him easier for the first couple weeks. I was a wreck!

The difference with PANDAS is technically it is strep that is the original trigger. We, as parents and a forum use it is a broader sense. Now, Lyme, strep, Mycoplasma triggered symptomsall falls under the PITAND umbrella. PANDAS is a subgroup of PITAND.

I am so sorry, Fixit. It sounds like there are a lot of variables right now that could cause a setback in your son. Look at what you changed. Do you think that could have made him worse. How soon in relation to switching did you notice a change for the worse? As for the ear infection in your other son...who knows maybe it is playing factor. Steroids and their effectiveness in maintaining long term positive results vary. At least you have that glimmer of what it can and will be like once you get him better. Are you looking into IVIG or PEX? As for the upcoming study, I didn't hear that they would not accept kids with tics. Where did you here that? As for sudden onset, well I don't remember hearing those words exactly, but if that is what they do it is a way to ensure the child is PANDAS. They have to prove and be very confident that the kids invloved are 100% PANDAS. They can't leave any lingering doubt. Let's hope it is a blip and he will bounce back soon.

I just looked it up. It's the Lyme Disease Association http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=639:register-now-ldacolumbia-2010-scientific-conference&catid=7:conflict-report&Itemid=398 I don't think we can make an independent post about it without moderator approval. what conference are you referring to?

I've only seen one person ever ask about that test and I sent them the email of the mom who does that blog. I just contacted her and asked if she can provide info.

See, I assumed it would be a general Lyme forum. Yes, I agree, no need to segregate it if that was not the intent. And, I understand what you mean about someone not being PANDAS and lyme. Well, unless they had PANDAS first then got bit by a tick and developed Lyme. The way one with Lyme will then react to strep is similar to a PANDAS child starting to react to viruses. Most still refer to their child as PANDAS, but technically it would then be catagorized as PITAND since it is no longer exclusive to strep.

What I think would be beneficial about having a separate Lyme forum is that it might draw more people to latitudes. If a PANDAS/PITAND parent has a lyme specific question, they can post on both boards if they wish or continue to post Lyme questions on the PANDAs PITAND board. Whatever their preference is. I already see familiar names post on the OCD and TS board in addition to PANDAS PITAND. I assume the new forum will include Lyme parents that otherwise would see no real need to visit latitudes. We get a bigger pool of information this way. It will also draw more Lyme parents into the world of PITAND and we may be able to help them too. We are a pool of info that they may have not known was out there. Lyme Mom/Pacific Mama, in the lyme community, are most aware of PANDAS and PITAND? Would a Lyme parent search out a PITAND board on their own? Just curious. I don't think we will lose too much information by adding another Lyme forum. At least I hope we don't.