thereishope

Is her OCD better than what is was prior to antibiotics? I agree that longer term antibiotics are needed. Also, with my son even though he was negative on follow up strep tests, it still took him longer to fully recover. Finally, with his last exacerbation, he had residual OCd we had to tackle. I'm not sure where that stems form, whether the brain eventually learned it out of habit or what. But right now he is OCD free. He never went on SSRI's either. Be cautious with those and PANDAS. You can also try Ibuprofen and that may help ease symptoms.

I agree.

Is he still on any SSRI's? If so, keep in mind that some PANDAS kids don't react well to them and PANDAS kids have to be dosed different. As for the antibiotics, don't give up. Just don't see it as an option. During my son's recoveries, we'd see setbacks, bumps in the road, plateaus, etc. But eventually we got him back. This last time it took 5 months to get him fully back. It's different for each kid and each exacerbation. Some longer, some shorter. If you've seen some improvement on the abx, that's great! Also, keep in mind, that if need be abx is not the end of the road. There are other options if it comes to that. Do you try Ibuprofen to see if that help eases his symptoms?

If you don't mind me asking. With your unvaxed daughter, did you receive anything like a flu shot during pregnancy?

Do you have your appt with Dr K scheduled yet? I'm curious, do you have any nieces or nephews that have showed any signs of possible PANDAS? Have you shared your findings with relatives yet? What was their reaction? Best of luck to you. Keep us updated!

They don't show Bonnie Hunt here anymore. I looked at the website and saw her suggestions for PANDAS and was suprised when it was listed that if your rapid comes back negative and you think it's worng you can get another one in 24 hours and /or get it cultured. I wanted to scream. "NO! It's not an and/or. ALWAYS get a negative cultured."

With my son's last strep triggered exacerbation, I noticed that he seemed like he was over his PANDAS exacerbation but he still had residual OCD. At that point, we began to address the OCD like regular OCD, not PANDAS OCD. He then overcame the remaining OCD rather quickly and is currently OCD free. I am assuming you've been through things like CBT and ERP since he has been living with OCD for years. Even if they did not work before, you still hopefully remember some of those stategies. Often, they tend not to really work during an exacerbation ( it wouldn't have worked for my son while in the middle of an exacerbation) but perhaps as the antibiotics start to do their job and he starts to get further on in recovery, you can start to incorporate some of those skills again and he may be more receptive to them. Even if your son does have residual OCD, it does not mean it is there to stay.

Sorry. I just woke up with a headache today and not in the best mood. I think it's odd, coincidental, whatever you want to call it that Murphy is doing a Cefdinir study and then Geller is doing a Cefdinir and Augmentin study. Maybe Murphy's is the one to show that how an antibiotic can help the symptoms compared to no antibiotic at all, then Geller's is to show which is better? I don't know....

I thought this was an interesting website... http://specialchildren.about.com/od/specia...acherpacket.htm Granted, in their list of disorders, PANDAS is not listed, but you can get ideas from clicking on the individual disorders that are appearing as a result of your child's PANDAS (OCD,ODD, TS, etc).

I looked in my email. Geller is doing an Augmentin and Cefdinir study to start late Feb. I emailed them and requested more info. I will post that if and when they respond.

I don't know how to respond. When it was the possibility of more severe cases, everyone would be mad that she is jeopardizing kids by withholding antibiotics. Now that it's kids more leaning toward a milder cases (which we don't really know how mild) we are mad that is not representative of all PANDAS kids. The thing is a study will never be representative of all PANDAS kids, There's too many variations of this disorder when one looks at age , how many onsets that occurred at time of study, what the symptoms were, severity, how long the child went before diagnosis, etc. And as we stand I think it would be too difficult to find a sample of PANDAS kids with the exact same symptoms, same age and gender, and willing to participate. Perhaps once the results of this study is done, it will be followed with more challenging cases. I don't know if she has other in the works. I've heard different things about that and I have not gone to the source to find out the answer. Geller is doing a study to to start in Feb. I don't know what his critera is. Maybe he will do the more severe cases.

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I think the "group sessions" in intervention is across the board . That's what they start with, then if they don't see the child is making enough progress then they start getting one on one. They're suppose to keep the child as much as part of the clasroom and in the classroom environment as possible. I think things like reading recovery is handled different in our district as well. It's not considered a disability or disorder.

I'm glad things are well! I think everyone is stressed about the holidays and what they will be like. Last year we were still in recovery mode and walking on pins and needles so the other kids would have a good Christmas too. Now, I am so fearful that something will sneak up on us and take away a good holiday. Actually, all of our holidays last year were with PANDAS. I sure hope this is a good one for all of us!

One of the biggest problems is getting to know your child again and determining what is remaining PANDAS and what is the quirkiness of your kid. I agree with LLM. Find out the reason behind the writing and such. I still "test" my son. If I see he is taking something to the extreme, I say/do something to him that I know darn well would upset him if it was PANDAS. Even with 5 year olds, they are still creatures of habit. So if I notice our bedtime routine remains the same for 3 nights, I make sure I change it up on night 4 to see his reaction. My son is 6. He'll sit at the table for an hour drawing super heroes and they need to be the right way. But I know that's him. I can't explain it. I know it's something not to be concerned about. Now if I tell him it's dinner and he needs to clean it up and he has a full blown tantrum over it. Well, the next day I'll get him a strep test.

Does she still have the pre-existing IEP in place? What evaluations has the school district done? I'm also suprised she gets pulled from the classroom. That's suppose to be a last resort. There's a law in place for that.

Someone who is participating in the study asked me to post something for them... "...Dr, Murphy's primary concern is the child and if they thought it too risky for the child to be in the study (given past or present symptoms), they absolutely would not allow participation. This includes if the child has already began meds for the study and began to backslide-they would immediately call off the study. That is why it's so hard for them to get the numbers they need (because of them refusing participants or participants having to drop out early). The absolutely have advised me that if I ever felt uncomfortable in the study, then I could call it off at anytime with no problems from them. At the first phone consult with Jeanette, she will ask pertinent info and help to decide if the child would qualify. (Name omitted) actually had absolutely no PANDAS symptoms (though she did have some fancy named reflex in her legs that Dr.Murphy knows to be consistent with strpt) at the first visit, but began to flare a few weeks after, which is why we had 2 appts before beginning study meds. It's also a quick way to get in to see Dr. Murphy and hear from a physician who knows so very much about this fight we're all experiencing, but has compassion and love for the kids she is treating."

I'm thinking out loud. Could he have co-diagnosis? If that was the case, some of the issues would remain even w/ antibiotics or wax and wane w/o infection. But worsen dramatically w/ an infection (even though it is unknown what infection is causing it).

In regards to not having a documented strep infection, there are others whose children have PANDAS w/o a documented infection as well. I know for 2 of them, the original trigger was a staph infection. If you give Ibuprofen, do you notice symptoms easing up?

If OCD is returning (even without the tics), I always would say take her in for a strep test to make sure she's not sick. Did the OCD go away in the past or did it just remain? I ask because with my son's last exacerbation he had residual OCD we had to overcome.

In place of the tooth fairy, we have a tooth party. He gets to pick out cupcakes or cookies from the store for dessert for the family.

My son lost 4 baby teeth during PANDAS exacerbations and I did not notice any increase in symptoms. Was she okay with losing her tooth, did it hurt her? When my son lost his first tooth he was nervous because he did not want to give his tooth to the tooth fairy. When we told him he didn't have to, he could keep it, everything was well. He actually has all 4 of his baby teeth on his dresser in a bowl. I can see that as being associated with hoarding, but even now that he's well, I think it's just him not wanting to part with them.

How was he at the time of the blood draw? When did he last have strep? Let me add, like your son, my son had a bad exacerbation when he had seasonal allergies last year too.

I find this interesting. I remember at some point thinking my son liked doing prat falls (that's what they're called right?) for attention or because he didn't know how to handle or react to a situation and the prat fall was his way of coping so the focus would change. He didn't do this when he was at his worst, but did happen during some point of PANDAS.

How old is she again? Would you mine listing her remaining symptoms.