dcmom

We have had this as our number one issue. Our schools have been extremely supportive. I would suggest immediately getting letters from both pandas doc and psychologist. You need diagnosis letter, and letter requesting 504. If you have a good psych- they can write a list of accommodations. I would NOT talk to the school w/o documentation. With treating pandas medically (steroids) and psychologically ( ERP) we have been successful with the school issues- This is very common with pandas kids :-(

That recipe looks great! I haven't seen that site- will be looking at all recipes on there!

Ok, theppk has gluten free, vegan, pancake recipe on her website. Now- realistically ther is NO WAY a GDP, veg pancake is going to be exactly like a buttery, eggy, white flour concoction-but- Her recipes are the absolute best- so I would say this is your shot. Make them, top with fruit and syrup, and they just might satisfy....

I strongly second Ifran's advice. PANDAS treatment is twofold, medical and psychological. The sooner and more aggressive the treatment, the quicker the success. You need a pandas doc to prescribe immune dampening treatment: steroids, IVIG, PEX. If one does not work, you should fairly quickly move on to the next. Second, most also need psychological treatment. The preferred treatment for OCD is ERP (exposure, response prevention). This isn't always easy, and you need a really, really good therapist. We have not been able to find anyone great locally, so my daughters did the program at USF. I cannot put into words how remarkable the docs there are! Not eating is a very, very serious issue. Your daughter is young, and you are new at this. You really need experienced professionals to help her. They will also take the weight of the world off of your shoulders, and teach you how to deal with OCD. Good luck.

I have been a vegetarian for 6 yrs. my pandas daughter is also. It is a very healthy and kind way to eat. Of course, as with anyone you should eat a varied diet that includes nuts, seeds, beans and legumes. My favorite resource is theppk website, and ALL if her cookbooks, especially Isa Does It. She is vegan. She is not gluten free, but most recipes you could sub w/ gluten free product. Good luck!

I do want to add, that my older daughter (relatively pandas free for 3.5 years) did get her meningococcal and tetanus vaccines 6 mos ago, on advice from her pandas doc, with no ill effects whatsoever.

Both daughters. Both girls had first ever Flu Mist in Dec (5 yrs ago). Both were diagnosed w/ strep and PANDAS within 2-3 mos. (Both had one previous uneventful case of strep one plus year prior.) This doesn't show causation- but I would never consider the flu most again.

My daughter also had low Vit D. She takes 500/day. I don't believe there is a correlation, but in the 3 years she has been taking it: very little illness, NO PANDAS. She takes it in the AM with food.

Yes- and I didn't even get a detailed letter- it just basically said to give a 504 due to pandas which causes anxiety and OCD. A few sentences. All accommodations were figured out by teachers, and myself.

I have a straight A perfectly (in school) behaved daughter. She never needed a 504 for elementary because her issues (extreme shyness bordering on selective mutism, along w/ general anxiety, all of which is exacerbated in a pandas flare) were always handled with her teachers, who were all supportive and wonderful. Last year as I was thinking ahead toward middle school, dd's teacher actually suggested a 504. All I needed to do was get a note from a doc- we used our pandas doc. The teachers, myself and the school psych wrote the 504 together! This process was extremely simple- two meetings and one letter from doc. This gives every treacher she sees a heads up on potential issues and how to handle them. I feel it also gives me some leverage if an issue were to arise. Hope this helps!

My kids have both had long remissions (1.5 years) only to have pandas return. We look at this as an autoimmune disease and assume that it will come back- so we can prepare ourself. We have found that fast and aggressive immuno treatments are what is needed for my kids to recover. We have not had a full resolution of symptoms without steroids or PEX (haven't done IVIG). My advice would be to put ALL of your resources into finding a doc that will treat PANDAS appropriately. Good luck!

Smarty- I don't remember exactly, but my dd's 504 is for social anxiety more than pandas - but I think it just fell under OHI (other health impaired). Someone else here can help shed light on options, I am sure.

My dd read brain on fire cover to cover in a weekend. She was twelve (last year). Must have been something she related to...

Smarty- Ugh- so sorry you are having an issue! I am also a big fan of the 504. My younger dd has one in place, mostly for extreme shyness and anxiety, which are ever present for her, but do get worse with a flare up. She didnt need one until this yr- middle school, because prior to this it could be handled with a short discussion with the teacher. Middle school teachers are less sensitive, and spend less time with the child- so to be fair to all, we did a 504. We asked for minimal to no accommodations- but with the 504 we are able to alert all of her teachers what to expect, and to request that they give her time to "warm up". I will tell you- not all teachers even seem to look at the 504- but in that circumstance, I as a parent have more power. If a situation is mishandled, I just ask the teacher to please read the 504. My daughters issue is that she cannot talk to adults- she freezes (selective mutism). Over time, she warms up and is able to speak in very soft voice. When a person meets her (if they have any common sense) the can see this right away, because along with her silence comes body language that makes it easy to see she is scared and not ignoring or defiant. Believe it or not, not all teachers are born with this common sense :-). So in the 504 we spell it out, and ask for common sense accommodations to be made until she is more comfortable. This helps the teacher, and also gives me back up if there is ever an issue that goes beyond the teacher and I. This being said, you walk a fine line of balancing the need to respect teachers and the need to argue with them in your son's eyes. I impress upon my kids that teachers, like future bosses, parents, siblings, etc are human. They need to (within reason of course) work on finding a way to get along, even with those they don't like. I would meet with the teacher face to face. I personally have found it best to start there. You don't need to argue- just get the story, work on a resolution - if possible. I would also discuss a 504 with the psych, see if you could come up with minimal requirements that you are comfortable with. Hang in there and keep us posted!

Have you tried steroids before ? Both of my kids have pandas, steroids have been a literal lifesaver for us. Psych meds are tough- pandas patients especially need to go low and slow. You are looking at a possibility of 6 weeks before meds are at full dose and take effect. Pandas is so changeable, it makes it hard to figure out what is going on...

Happy beyond words.

Our older dd has had braces for one year plus with no ill effects. Her immune system seemed calmed down when she got them as she has been relatively free of PANDAS for 1.5 years prior. She has been relatively pandas free for 3 years, our fingers are crossed. We will be looking at braces for our more affected pandas daughter within the next year...

Helps inflammation- is the only abx that will cross the blood brain barrier.

I have always been able to get all help needed directly from teachers (in emem school). Did you ask the teacher if she could have lunch in the classroom for a few weeks, until you get a handle on things....

Can you share what area you live in? Sounds like pandas- both of my daughters have had restrictive eating due to pandas. Fear of choking is even mentioned on Dr K's website. Do not take her to hospital if at all possible. Get in to a pandas doc ASAP.

Alex- so happy to hear things are doing well!!!

T Anna- I highly recommend the three wk intensive outpatient program at USF to help deal with the OCD.

I am not veering from the topic- what I am saying is that if you have your own psych, who is only thinking of your son- you will be more protected. Do I think, as parents, we should be able to go to the school for help- yes I do- but to be honest, pandas is too complex for them- I think it is best to involve them as little as possible. And, with a psych and medical doctor on board, you walk in in a position of strength, you tell them what your son needs.

TAnna I completely agree that pandas is medical- BUT I think a psychologist is necessary for many reasons. First- helps to outline to the school exactly what is going on, what is needed. I have found if I go to the school armed with letters from both a neuro and a psych- they don't say a peep. Second, many pandas kids need or greatly benefit from therapy to help them let go of their OCD as they are healing. And lastly as a support for the family.

Fl mom- Sorry for your situation. Are you near St Petersburg? There is an excellent therapy program there for kids with OCD and/or pandas. We went with my kids. I can tell you that pandas so changes the dynamics of the family- we learned to take back our power and authority as parents. I believe that if this is what the doc prescribes, you should compel your son to comply if his reason to not take the mess is to just be difficult. It is not easy, but this means nothing until he complies; no screens, no phone, no going out, no food treats, etc. as our psych explained, if it gets to this pt a parent need only provide the minimum food, clothing, shelter. Tough love.