thereishope

I'm going to be researching this so if I find out, I'll post the answer. I'm thinking you get a form for exemption from your school to fill out. If it's a philosophical exemption, I don't think you need anything from your doctor. If you got a medical exemption, then you probably get something from the ped. www.nvic.org has lists of vaccines and you can read up on them including what reactions have been noted.

I agree to get her tested. My daughter was spanning between 2 1/2 and 3 while my son was in exacerbations and she didn't regress or try to get attention by mimicking his ways. She just turned 4 and some of what you listed sounds like 4 year old girl but some are red flags such as - fixated on "beating" everyone and winning, especially against her brother - has tantrums over strange things - has had meltdowns about breakfast similar to her brothers rituals (however, his rituals happen at school and we drop her off first - so she's never seen them, so I don't think she's copying, but it's a possiblity) - woke up very upset Sunday night because "Great Grandpa is dead" (he died 3 years before she was born), and had to call all of her grandparents to make sure they're alive. She had to call them Monday and Tuesday night before bed as well - although she didn't say it was to check, but we normally don't talk to them daily. Those things I wouldn't dismiss because of age. I think in your heart you know you should bring her in. I'm sorry.

It's sounds like you are finally finding your way to answers. I am so happy for you. Never give up hope. If any of us fully gave it up, our kids would be forever lost. They need us to fight for them just like you did for your daughter.

Some kids do well with CBT. With my son, it didn't work since he wasn't cooperative and didn't even realize his OCD was an issue. To him, it was "just him". He was 5. We did our own form of ERP and that worked well for him. Interview any therapists ahead of time to see if they will be a good fit for your son. I ruled out a lot based on the inital phone interview I gave them. He is on Risperdal for mood regulation, clonidine for sleep issues, and Lamictal for aggression. This combination has worked well to manage some of the symptoms of his FASD. The psychiatrist increased his prescribed dose of Risperdal yesterday. My concern in all of this is that we need to address what is causing the problem, not just cover the symptoms with psychiatric medications. There is very little we can do about the FASD but the PANDAS seems to be another story if we could just find someone to treat him. The psychiatrist suggested cognitive therapy yesterday and I broke down in tears (probably confirming the recommendation in her mind). We've been down the "let's talk about what's going on at home" road before with the FASD so at least it's a familiar one. Sigh. I learned everything I could about FASD in order to advocate for my son and now I'll just have to do the same with PANDAS. Thank you all for your help in this. I did give him Ibuprofen based on what I read here. He tolerates it but it's hard to tell if there is a benefit yet. Again, thank you all. ~Needcoffee

All vaccines do activate the immune system. With PANDAS and PITAND kids you want to keep their immune systems as calm as you can. It is a lot to weigh.

I heard that about causing polio with the live, oral polio vaccine, but not with the shot too. I'm glad the baby is okay:) I just quickly wanted to mention that while browsing and trying to make the decision as to whether to vaccinate or not, I came upon an article that said polio only started being a problem after they started mass vaccination. In a study on children who contracted polio, they found that nearly all of them had been vaccinated (for something else) about a month or so before coming down with polio. Basically it said that the shots were what triggered the polio. I wish I could find that article again! But any way, my point is, if you are NOT going to do the rest of the shots, you probably don't need to worry about polio. It is a scary thing, and that is the one vaccine I was going to give my daughter, but now I've decided not to do that one either. On a side note, we wound up in the ER last week because baby had a fever and swollen fontanelle, so in the midst of that I was thinking maybe I should have done the menigococcal one... it turned out to be viral, but they had to do a spinal tap and all. It's never easy with kids!

Thank you for all your answers. I compared her vaccine charts to my boys. It seems she's due for the second MMR, DtaP, polio. My boys got those at 5 years old so perhaps I won't even have to make this decision at her 4 year appt. I read somewhere you couldn't pick and choose but now that some of you said you can, I will weigh that possibility more. I agree, that I do not feel comfortable AT ALL with a live vaccine. The question is the polio and the DTaP. I also wonder if they have now added a rotovirus to the vaccine schedule. I know some kids have had negative reactions to the DTaP. I believe that was the vaccine that injured the son of the president of NVIC. I don't know if we have a separate tentanus vaccine available here. I guess I have a lot more research to do on the specific vaccines. I think I will ask for titer tests to check for immunity as well. If she is immune, I will feel a sense of relief and have more in my arsonal if ceratin family find out we chose not to vaccinate. I think we will have to keep that decision private. My ped didn't flinch when I passed on booster chicken pox and flu vaccines for my kids so I am hoping there isn't confrontation if I pass on vaccines for my daughter.

Welcome. I should start by saying I am not familiar with FASD nor the psychotropic meds that are give to children to help regulate the effects. Would you mind sharing what psychotropic meds he is on? If your doctor is wishing to change them, increase, or add any new ones to the mix in an attempt to regulate the PANDAS symptoms do so with caution. Some PANDAS kids do react negatively to them. Since he was okay on them previously that's one thing, but to change them now with something added to the mix (PANDAS), just be careful. If you add/change meds, do it slowly. You mentioned hesitation with steroids, but can he take Ibuprofen? Some kids get some relief with that.

Some PANDAS kids do have exacerbations with vaccinations, esp if the child has an active infection or isn't full recovered. I do not plan on doing anymore vaccinations on my older boys (one PANDAS, one not). What my concern is what if she has the predisposition for PANDAS and it just didn't surface the last time she had strep. I'm also wrried about activating an immune system in a girl who has a family history of autommmune disorders and PANDAS in particular. Also, the MMR is one vaccine scheduled. I'm worried about that one. If she did get that one, that one is live, right? Does it shed and would my PANDAS son be exposed? Am I worrying too much? My husband said it's my decision what we do. I don't think you can pick and choose when it comes to declaring an exemption.

My 4 year old is due for her annual well child check up. I am still undecided about vaccinations. I live in a state where I can take a philosophical exemption. I think I am on the fence about this because my older kids are up to date since PANDAS didn't surface in our family until they were both up to date for kindergarten. Since then, I have opted not to do flu vaccines, second chicken pox, etc for my older kids. What's your opinion on this? Would you opt out of immunizations for the 4 year old, would you just space them out more, would you get antibody tests done to see if the previous ones still show immunity? Would would you do? I'll add that my 4 year did have strep before without any PANDAS symptoms surfacing. However, I do believe we caught the strep very fast. She does not get symptoms. She was only tested for strep because my PANDAS son had strep. That was in March 2009. Her last strep test was in May 2010. Rapid and cuture were negative. She was tested because her non-PANDAS brother exposed and the ped didn't run a culture on him, so we couldn't be sure he didn't have strep.

My son was mean as well whne he was sick and he was going through a rage. I don't really have a coping skill to offer but just walk away if you need to , just keeping saying I love you while she's wailing away. Resist every urge to get caught up in the moment and saying something worng like "What's wrong with you? Why do you have to be so mean, etc." For some, those words may come out as a reflex, but it must be avoided. When the storm calms, she may remember them and feel worse.Aftre the rage, remind her that yo love her and you aren't mad.

An ENT can also prescribe prophylactic antibiotics.

Oh, boy. My son acted the way yours is except he never thought of the holding breath idea.... thank goodness. Does Ibuprofen help with symptoms at all?

What state do you live in? Might be useful for others to know there a pen resistent strain going on around them. Did she switch you to Azith, Omnicef....?

Yeah!!!! After my son's "no eating", his first regular food was 3 donuts in one day. At that point, I didn't care what he was eating...he was eating!

If she is logged in correctly and cannot post, I would suggest contacting Chemar or Sheila Rogers. They would be the ones that can help.

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I'm not Buster (not even close), but read here... http://www.pandasnetwork.org/buster.html On the very bottom is where you'll find your answer. It's not from Swedo, it's from Kaplan.You can pull up the paper and use a link to the paper to prove what you cited.

They are showing tons of commercials for this. Take a yogurt cups and poke a stick through the foil cover, then freeze it. My kids are also freezing those crush cups and squeeze yogurts. If he'll let you put the yogurt into your own popsicle molds, stir evaporated milk into the yogurt first. This will add calories.

...and contamination/poisoning fears. Most see 3 types of eating disorders associated with PANDAS. Fear of choking. texture, taste, color/sensory issues body morphology/anorexia Get on these right away. You can get a lot of calories into drinks, but get him seen by a specialist in OCD and eating disorders. Hopefully the augmentin will help.

This question pops up on here now and then. Dogs can have strep A but it's not common. Parents sometimes will just get their dogs antibiotics without testing "just in case". They say testing is too hard and too expensive.

When my son wouldn't eat, he was was given his steroid burst and it helped. I think it was a combo of taking down inflammation and the fact that a steroid will add to hunger. Will he eat applesauce and yogurt? My son lived on that for awhile then he morphed into a carb phase when he finally began to eat again. If needed, you can supplement with a drink like Ensure, but still try to get him to eat. For a bit, my son wouldn't only eat if he was alone in the room, he had to handle all food himself, and he would only eat individually packaged foods and cold foods.

When my son is in an exacerbation, he will wet the bed. That is definitely a PANDAS/PITAND symptom. He wet the bed almost nightly for a month. When we were about to rule out bladder infection, it stopped. Thank goodness!

Here's a link to a text version of the story.... Marijuana From Mom: Mother Says Drug Helps Son Cope with Severe OCD

I say whomever is ultimately "in charge" of the project can decide what is the easiest and best way to go about doing this. Yes, getting suggestions, opinions, and being as democratic as you can is good, but it's one thing to have the idea and another to implement it. Kara, since you are taking the reigns, I say you have the final decision. As long as we can bookmark funds to a particular way of spending that everyone agrees on, it's okay with me. I do think the spending needs to be agreed on since that is how I feel the most comfortable sharing my son's life for the purpose of helping those with sick kids that cannot afford tests like Cunningham's or to further Cunningham research. I am very protective of the details of my son's disorder and the heck he went through. I also wish to be able to say that my son's PANDAS journey not be duplicated in any way unless I agree to it. I do not want it to become "property" of any organization.