thereishope

Yes, your son's immune system has been on high alert for awhile! As for allergies, those can be a nasty trigger especially if in mid exacerbation already. I experienced that big time. If he has allergies, it is important to get them under control. You can search 'allergies" and threads should pop up. Each med reacts different in each child. Just stay away from dyes too. I switched to a natural allergy supplement. D-Hist Jr and it works well. It also has anti-inflamatory properties in it. The only med I've read to specifically stay away from is Singulair. With my PANDAS child, Claritin made him super hyper and worsened OCD on day 11 of taking it. Benadryl has worked for him w/o making him tired or hyper (not the case for all kids). But I have now switched my recently turned 7 year old to the D-Hist and it works great too. My 9 year old has done well on it too.

I have an idea...You could send a subliminal message by carrying around a copy of "Shut Up About Your Perfect Kid" with the title facing out, towards her

Off your original subject, but do you think that virus he now has was simmering when you went back on the Zith and didn't see the improvements you had witnessed befroe? Soem kids with have an increase in PANDAS issues befrore the physical symptoms of the virus arrise. About OT, my son never had OT so I don't really have info to add in on this. He was screened by an OT during exacerbation #1 but I answerered all questions based on pre-PANDAS behaviors so he didn't qualify for needing it.

Oooooohhhh. She's lucky you don't have your cyber posse close by to "stare her down"!

I've also seen Sambucus at Kroger in the natural food section and Meijer around the supplements...if you have either chain by you.

I can post my own opinion... My family will not get a flu vaccine this year. No shot. No mist. Last year there were some PANDAS and PITAND kids that had problems with both forms of vaccination. Some even experienced their first known exacerbation post vaccination. There were also some kids that did have setbacks with the actual illness. Some thing to consider is if your child has asthma. None of mine do. My kids had probable H1N1 last year. For my PANDAS son, he had a near 105 fever. A few days post fever, some PANDAS stuff resurfaced but it was short lived. I do not regret my decision not to vaccinate last year either.

All the antibiotics mentioned (Augmentin, Zithromax, Omnicef) have been used long term by kids on here. As for long term penvk, I think a couple have had success with that, but not many. I'd be worried to switch to a prophylactic until you believe the infection is gone. Here is an article at the falure rate of amox and pen with strep http://www.entrepreneur.com/tradejournals/article/169459644.html

I haven't heard anything about our district helping with vaccinations this year...yet. Last year, elementary did vaccination on campus but after school hours, with a parent present. It was during school hours for middle and high school. I sent my kids to school since vaccinations did not occur during class hours. If, by chance, it changes, I will not send them on days vaccination will occur. I think I'm not only worried about shedding but also a "oops" vaccination happening.

SF Mom once posted an amazing letter on here and now I can't find it. I'll try to message her and ask if she still has it.

Welcome. The 3 times in one month may have been one infection that the docs assumed had cleared but didn't. By any chance do know if the bronchitis was mycoplasma pneumoniae aka walking pneumonia? What antibiotic did he go on that time? Are you able to switch from Naproxen to Ibuprofen? Ibuprofen has been more effective in PANDAS kids when parents have tried both NSAIDS and compared them. With all the meds he is on, you may want to ask a pharmacist or the doctor first. If he's not improving, he probably needs a different antibiotic. Pen and amox aren't very kind antibiotics to the majority of PANDAS kids on this forum. Many take Augmentin or Zithromax as a prophylactic.

Even though you don't have the issue of a decline in math skills or writing due to age, in preschool they will start practicing writing letters. In preschool, my son brought home homework to practice letters and it was very difficult to get him to do it. Sitting still was hard, concentrating was hard and (if I remember correctly) getting him to remember how to form the letters was hard (this may stem from the same cause as older kids who have deteriorated penmanship skills). So, mentioning handwriting at the IEP mtg may be worth it. Get as much in as you can now because it's hard to revise IEP's in the middle of the year. How is he with his social skills right now? Does he respond to questions? Participate in group activities or answer when questions are directed to a group? Does he sing with the class? Does he migrate to specific centers or toys? These questions may lead you to realize what he needs to work on. These were some examples of the issues that were present when my son went to preschool.

When my son was having social issues (he also had to be screened for Aspergers), to be honest there wasn't much I could do to aid in overcoming it His itinerant speech therapist (one that visited in his preschool classroom) also noticed this and it was added into his speech IEP to have social goals in addition to his speech goals. (ie...____ will respond to social questions like "how are you" in 4/5 scenarios.) I don't know if the school giving these goals and supposedly working with him to attain them helped him or if him improving in social setting just happened on its own as he recovered. I know my rant doesn't really help, but maybe I just want you to know your son isn't the only one who regressed and "changed" like that and the possibility is there for him to overcome it in time.

I'm glad you had a good phone call! Is he still on antibiotics? You can try switching antibiotics if the Zith isn't working. Some have had sucess with Omnicef and Keflex if your son is allergic to Augmentin. As for a steroid burst, I understand how he says one can use it to see if IVIG may work, but there are those on here who have had steroid burst knock the exacerbation into the beginning of recovery. Also, if your son is bad off (not sure how bad things are right now) you can request a steroid burst in hopes of giving him some relief for teh time being. Finally, before IVIG, search out all coinfections discussed on here and rule them out.

I am so sorry you're going through this! Is she on an antibiotic? You don't always need results from the Cunningham test to get help. It may help you in convincing a doctor, but it is not always necessary. If she is not on an antibiotic, tell your doctor that if he wants to hospitalize her or give her stronger meds, he can at least give her an antibiotic like augmentin or Zithromax. This is the time to get stern, sound authoritive with the doctor, and take a stance. If you need to, you can take her to Urgent Care if you don't want to deal with her doctor right now. For things like possible sinus infections, they give out antibiotics just if you say your cold hasn't gone away in two weeks yet they deprive children of antibiotics that may pull them out of having sudicidal thoughts. If you haven't given Ibuprofen yet, try that too. My son at at age 5, tried to jump out of windows and threatened myself and himself. I followed him all around to ensure safety when was in a meltdown or anxiety attack and would not allow him in a room with a closed door during those moments. In that exacerbation, antibiotics and steroids helped. If she is putting knives to her throat, you cannot do "wait and see" on this. There are some who have ended up hospitalizing their PANDAS children when it got dangerously bad. You are not a bad parent if you think that is the only way to make sure she is safe. But if it comes to that, I think you need to get in contact with a specialist who can look at her case as a whole and maybe get you the appropriate care within the hospital setting.

If you are referring to the Pepsi grant money, that was not used in adjusting payments for the tests to be run. Payments and amounts may have varied over the last year or so, but I believe the current charge is $400. As for it being optional for those who cannot pay...I haven't heard anything about that for current. I would clarify that with the office. Finally, it was mentioned on here that Dr Cunningham's office had to hault sending out kits for the time being do to revising paperwork that is sent out with the kit and being bogged down with tests to run. Again, contact the office first and get details straight from them:)

This is the thread from P.Mom's visit to Dr Cunningham. It's something worth reading http://www.latitudes.org/forums/index.php?showtopic=9361&st=0&p=78479&fromsearch=1entry78479 Also, if you do the test post IVIG, make sure you mention this to Dr Cunningham.

Sorry this isn't a quick reply, but yes, IF it is a sinus ifnection Benadryl won't help. Whne my son one, I was specfically told NOT to give him Benadryl. Hope your night went okay!

I wonder if he does have a sinus infection! When you have a sinus infection, I've always been told to give something to loosen up the mucus since the swelling from the sinus infection prohibits the mucus from draining. Anyway, that drainage is good. Can he actually cough it up into a tissue so you can look at it? ps...you can get sinus infections from allergies too.

NAC loosens mucus so it would make sense that he is coughing more since more drainage is able to occur.

Oh, I reread one of your posts, my son had some sawtooth without IVIG, but the bad setbacks didn't last long (not more than 3 days). Usually if it was more than 3 days, something was triggering it whether it be strep, allergies, virus, etc. The D-Hist Jr does have NAC in it. Not a lot, but has some. So if you order it, read the back of the bottle so you know how much to supplement it if you want more than that.

re: allergies If the Benadryl will help, it could take up to a week to get full effect. You could look into that D-Hist Jr. That has quercitine along with other stuff for inflammation and to loosen mucus. My non-PANDAS son weighs about the same as your son. One tablet twice a day helps him more than the Claritin did. And you can go up to 2 tablets twice a day. Something to think about if allergies don't get better in a week.

Fixit, is he allergic to mold? In our area mold has been high for a really long time. I don't know what my non-PANDAS son is allergic to, but his allergies are at a high this year and still here. As for reaching a plateau after going off the clindamycin....I look at it from the persective of at least he didn't drmatically backslide once going off of it. Now for that cough....is it a normal cough? Do you think it's a cough from his sinuses draining due to allergies? Do you think it warrants getting his chest listened to? Don't want to scare, but a cough can be a symptom of Myco P. I am not saying that's what it is, but if you're trying to piece together what is going on , maybe it's something to rule out. Like dcmom, my son didn't have tics, so I'm not much help there. But people consistently say it's one of the hardest symptoms to get rid of. I'm sorry I couldn't offer more help:(

You may have this info in your post,but I admit I'm tired this morning and the words are all blurring together. Post surgery...what antibiotics was he on? Was it a prophylatic dose or full strength? You say he finally starting seeing improvement again post t and a. That's great! So how long have been at this plateau now?

This is a website that was recently mentioned on here. I plan to buy them from here. http://www.docsavings.com/Merchant2/merchant.mvc?Screen=PROD&Product_Code=IST501&Category_Code=rpd&Product_Count=0

We also had a good experience with a 5 day steroid burst. For us, we started to see good things on day 4, when 3 full doses were in the system. For us, we did not see dramatic chages but instead it stopped the spiral down and from that point,we slowly started to see improvement. Luckily, with my son, it was not temporary as it may be with some kids. As it has been mentioned on here before that some people with TS can experience a worsening of tics with a steroid. Just want to throw that caution out there. As for antibiotics, if you can get an extension on the script, I would try. Even if you think the infection is gone, an antibiotic would hopefully lower chance of reinfection. Reinfection while recovering can really throw a lot of bad things your way. That happened to us and it really did a number on him....such a dark place.