thereishope

I'm so happy for you! Isn't it a great feeling whne you encounter someone who actually puts the child first and takes care of them!

It said I voted...I didn't! Anyway, strep+infection+allergies/other triggers I'm experiencing something interesting with my son. When he was recovering from strep triggered exacerbations, things like allergies would be a big trigger for him, along with stress, viruses, etc. Lately, it seems his "other-non-strep" triggers seem to be easing up. In last few months he has had H1N1, viruses,we think allergies due to dust mites, and a sinus infection that lasted over a month. Whatever PANDAS that did surface was very minor, if anything. I am hoping the further we get from that last strep infection (Mar 2009) we see less PANDAS surface from other triggers. That's what I think is happening, but not sure. I do believe if he contracts strep again, we will go through a very bad exacerbation again and be back to square one.

Perhaps it depends on the location? I think I remember someone saying they had it drawn there too. Maybe call around to another location and see what they say. Maybe a different one will do it.

I'm bumping this up. I know there has been other Canadians on here before but their names are eluding me. Perhaps it was Char?

In the UK do schools have an equivalent of the US's 504 plan or IEP plan here that protects children if they have medical hardships, disorders, etc?

This is an article that some have given to schools before... http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

An article you might be interested in reading.. http://emf.mercola.com/sites/emf/archive/2...-hazardous.aspx

I would think that since you started antibiotics at the same time as weaning off the Zoloft, it's going to be hard to assess what is going on. As for allergies, my ped said dust mites are at their worst this year right now. Allergies are a trigger for my son. I am vacuuming a lot lately. I also have a vacuum with a HEPA filter. The ped also gave him Flonase. I don't use it every day but only when I think there's a problem. Th ped thinks his sinus ifection was caused by his allergies. For spring allergies, Benadryl works best on him. As for allergy meds, it seem sdifferent kids react different to them. The only one I've read to stay away form is Singulair. My PANDAS son tried Claritin. It worked at first by on day 11 he was crazy hyper from it. Speaking of allergies, I just remembered I need to change his bedding. Time to get off the computer!

I'm just curious, on the "Got Strep" cards, is there an asterick or a small disclosure explaining that subsequent exacerbations of PANDAS can be brought on by other insults on the immune system or a negative strep test does not always rule out PANDAS?

A lot of PANDAS kids (a nd their siblings and parents) do not get fevers or sore throats. Everyone needs to rule out strep whenever there has been an infection in the house. If anyone is + for strep, they alsohave to go for a follow up strep test 3 weeks after finsihing abx tomake sure the infection was erradicated. Go into the dr, get a rapid done. If the rapid is negative, make sure they run a culture on it. If the culture is negative, then get the blood test done. As for the rest of the family, you could try to get drs to just give an antibiotic instead of going in, but not any will do that and, personally, I think it's important to know if you had strep. It will help you know in the future if you are non-symptomatic and if you need a follow up.I know it's a pain and get expensive bringing everyone in, but it needs to be done. if you have bad insurance, like me, you could bring family members into a minute clinic at some grocery stores or walgreens to get strep test. It's cheaper at those clinics. But the PANDAS child...I'd bring the to their reg dr.

I don't remember what I've mentioned in other threads with you so forgive me if I'm repeating myself. I don't think you can fully judge if the antibiotics are making a difference and backing up whether or not it's PANDAS based on penicillan. Unfortunately, too many kids on this forum did not have success on penicillan. Many did go onto to diffrent meds and saw great strides. As for the test, even if you don't going through some of problems others are experiencing, it is still not acceptable for your child to suffer at all. I don't want anyone to ever think that their child is viewed different on here because they are more mild. Each child is important and each child deserves the chance at recovery. So, you have a decision to make. You could order the test and have it handy and ready to go. I believe the donation is made when you submit the blood sample. If you see an upswing of tics or behaviors surface (whatever is considered an upswing for your child...not compared to others on here), that's when you get the blood test done. I just get the feeling you, personally, need/want to see it in writing (or type) that your child falls in the PANDAS range. A lot have done that test for that reason alone. Nothing is wrong with that. If your child does fall in the PANDAS range, it may help you with even local doctors. I don't know fully if it will. But, if you go onto to seeing one the experts (in person or via phone) they understand the test and the results will help you with a consult as well. It is alos important to remember that when anyone participates in this study, you are helping ALL PANDAS kids, For that, I thank each of you who has participated. Something to remember is the test should be done prior to any steroids. Steroids may alter results. If you want my personal opinion, order the test and think on it more while waiting for delivery.

In case you didn't know....Stoneyfield makes a probiotic yogurt as well.

Well, may I ask what would be your purpose for doing the test? Do you or your doctor have doubts it is PANDAS? Are you planning on seeing one of top experts (Dr K, Dr L, Dr T)? Some may disagree with me, but if you are seeing consistent, good improvement on abx, you have a doctor on board who agrees your child has PANDAS and is willing to work with you, I agree that having the test done is up to you. If you feel you need/want more concrete evidence that it is PANDAS, then I would suggest doing it. I think she cannot say if it would be beneficial because it is still in the research phase. Also, since she lost funding, the project has to charge a fee to have the test run. It counts as a donation.But because of that, I understand why she cannot say the test is a necessity for PANDAS. If she did that, a lot of criticism could surface in the future. So I think that's smart of her to say it. I have not had the test done on my son. He is clear cut PANDAS. There's no reason for doubt. He has improved on abx. Also, he is not in an exacerbation and I think it is best to test when they are or if you are keeping track of results over time and doing the test more than once.

Some doctors still don't think of testing for strep if the classic strep symptoms aren't there. Or, if they never had a patient with PANADS before, they just may not even think of it. Older doctors not in touch with recent information may not realize what PANDAS is or what to look for. I've come across many pediatric nurses that never heard of PANDAS. As for your timeline with abx....my son seem to continue to worsen for 3 days aftre starting abx, then began to see improvement. I have read others seeing improvement within a day. It's important to remember that not everything will improve at the same time and you will see bumps in recovery, but you shouldn't see dramatic sliding back that he doesn't recover from with a couple of days. If that happens, it's time to look at the treatment or possible infection. With my son's last exacerbation, I thought it was going to be an easier, shorter recovery since I caught the strep infection so fast. Well, he wasn't as bad as excaerbation #2, but recovery still took a long a long time.

Happy Birthday! I just want to add a little something about the birth control. If you have a teen or young adult that you decide to put on birth control to try to level out hormones, do have a serious talk with them about how any antibiotics they are on will lower the actual birth control element!

I can't give opinions on any of those rates. I'm not familiar with them nor has my son ever seen him. I'm sorry. May I ask what your defintion of "cure" is?

My son boycotted milk while he was sick. Even now, he rarely drinks it. I only give it if he asks for it. I have a feeling his body is tellling him to stay away from it and I respect that. He never did stop with the cheese, milk, etc . Just glasses of milk.

Yellow...for the light at the end of the tunnel? But, then, yellow is taken already. What colors aren't taken already?

One of tge best things, in my opinion, is to follow your gut. If you do the IVIG, be prepared for some old PANDAS symptoms to resurface during recovery. Even though my sons did not do IVIG, during recovery, I even saw old symptoms I thought were gone make a reappearance before gtting fully better. It's very interesting how the brain heals.

I know what you mean about not trying to make a big deal out of it.My son was 5 and I was finding myself every 5 minutes saying "Do you an apple?" " Can you eat something, please'. Then I realized I was probably making the problem worse. I put time limits on myself and only allowed myself once every 2 hours if he wanted something. Asking him still made me feel better but I tried not to let the food issue encompass everything for him.

My son went through eating issues to. he never voiced why. Part of the reason was contamination. It wasn't the whole reason, though. Anyway, in addition to trying to overcome fear, you obviously need him to have nourishment. Once my son started eating again, at first it was only self contained foods. Single serve applesauce, individually wrapped cheese, single serve yogurts. You get the idea. He wouldn't let me cook for him either or get his cups or utensils. And everything had to be cold. That may have been sensory or it may have been he didn't want me to handle his food. Maybe both. Again, he wouldn't tell me. It's all my guessing based on observations. Now, often he wouldn't want me to know he was eating or be in the room with him so I told him to just eat when he wanted. It was also kinda animalistic, at times, when he started to eat again. He'd grab food when no one was around and just start eating it in the middle of the room. Crumbs and pieces falling everywhere. But I just ignored it and cleaned up when he left. I don't want to say to feed into his OCD (no pun intended) but nourishment is so important to recovery.So maybe buy some single serve things. The good thing is eventually his eating went back to normal. I made sure I always had fun foods (he was 5) or things he'd like just in case he'd want them. Over time, he was back to eating normal agaim, I am able to make his food, and he's even trying new things. Now he's more adventurous with food thahis older brother!

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Welcome. The links listed above will answer your questions. PANDAS is an autoimmune disorder so, in my opinion, it can go into remission and the child can go to live a "normal" life if it is treated, but the possibility of it resurfacing will be there. As to what happens after puberty, I really don't know. It is said that PANDAS may "go away" after a child hits puberty. I have read stories of PANDAS children who are young adults now and seem to be doing fine, so I am very hopeful this is the case. The staus of the immune system and "where the child is at with their PANDAS" during puberty probably plays a role in how they are in adulthood. You ask whether you should only treat on a as needed basis when infection comes along. Well, the problem is that not every exacerbation may be the same. The more times it happens, symptoms may be worse, recovery may take longer, or more intervention may have to be sought. So, in my opinion, the ideal is to have the child be on a prophylactic antibiotic in hopes of preventing another strep infection. As for how to treat a PANDAS child vs a child with OCD or TS...often a PANDAS child would not respond to therapy during the midst of an exacerbation. Some find, that you can learn some coping skills the child may benefit from. Some find that things liek CBT or ERP help their child when they are in the recovery period, perhaps more towards mid or tail end of recovery. As for SSRI's, some PANDAS kids have adverse reaction to SSRI's so they should be used with caution. Just becasue yourPANDAS child has OCD or TS, it doesn't mean they need SSRI's. Luckily, my son has been 3 exacerbations with bad OCD and never used them. I'd also like to add the clause that are some PANDAS kids who take SSRI's and do fine with them. Just be careful with them and with dosing. As for whetehr a PANDAS child needs any type of special treatment when they have a strep infection....it seems a huge portion of PANDAS kids do not respond to penicillan or amoxicillan for strep. they often need something like Augmentin or Zithromax. Do your kids have a DAN! dr? if so, this is something you can definitely discuss with them as well. A lof of DAN! dr's are aware of PANDAS and amy be able to help guide you. Also there is a list of doctor who have helped kids on this fourm. You may see if any are by you. Here's the link to the dr list... http://www.latitudes.org/forums/index.php?showtopic=6428 Finally, many PANDAS kids do not get classic strep symtpoms, their behavior changes are the only thing that tells parents they might have strep. If one has strep, all family members need to be tested. PANDAS kids may react to exposure only and even have setbacks with viruses, allergies, and whenever the immune system is activated.

PANDAS kids do have to be careful when using SSRI's. Some PANDAS kids have adverse reactions. As stated on the PANDAS Fact Sheet ... http://www.latitudes.org/forums/index.php?showtopic=6265 This does not mean all PANDAS will have adverse effects with SSRI's, but they should be used with caution. There are some kids who use a SSRI on this forum and do fine with what dose they have been given. Also, if anyone decides to wean their child off meds, you should do so with the help and guidance of a doctor. Only add or omit one thing at a time with a child so you can tell what is helping or hindering.