thereishope

Maybe you're thinking of NSAID. Non Steroidal Anti Inflammatory Drug aka Ibruprofen. Sometimes docs will give a script for a higher dosage so you don't have to take so many pills. Like a 600 mg tablet whereas a normal over the counter is 200 mg.

How does anestesia used during a surgery like t and a vary from that used at the dentist? It seems like decent amount of kids had an exacerbation following t and a surgery and others have one after a trip to the dentist that involved laughing gas.

If you have Tourette's, I think I remember Chemar saying that steroids will worsen your Tourettes. That happened with her husband. Something to keep in the back of of your mind while making that decision. Have your ever taken a steroid before for something like poison ivy? Have you ever noticed a time when your Tourettes seemed to improve? Like while on antibiotics or anything else you could correlate improvement with? Some children also find some relief with Ibruprofen.

Since antibiotics have worked in the past to stabilize him, I think she should explore PANDAS. Perhaps he does have PANDAS and lyme. And the lyme is aggravating his PANDAS.

Is her nose scabby inside? Has she been blowing it alot? I wonder if you put some topical antibiotic (just a little to coat, not gobs), it will heal anything that is present that isn't strep. If it was just a result of drainage, the ointment should provide some relief in a day or 2.

My son had t and a surgey in Feb this year. Only my PANDAS child has had this done and I do not plan on doing my other 2 kids unless it is suggested or they have recurrent strep. It just doesn't seem to be an issue for my other 2 kids. What I would suggest it to have your child be healthy if you decide to do surgery. The ped kept pushing me to get it done even when my son was really bad off with PANDAS symptoms. My instinct told me to wait. I'm glad I did. He did awesome at the hospital and recovering from surgery for him was a breeze. I do know some PANDAS kids have a hard recovery time, but he did not. What was devastating was a month after surgery, his PANDAS resurfaced and we found out he had strep again. I don't know if there is a connection between the surgery and the strep coming back. So I would suggest stronger antibiotics post surgery. My son's last strep infection (post surgery) and PANDAS epsiode was in March 09. He has been strep free since then. I know there's a chance he can strep agian, but then I never know how many strep infections the surgery will prevent.

OHI=Other Health Impairments

Is it bad that I'm so nosey I had to read this topic? At least it's not only me. It got 132 views!

It is going to take a lot of work and patience, but when you look at the scheme of life and how much it will benefit him....it's definitely worth it! The psychologist we saw said she had PANDAS kids before, but it didn't really help us. First, sometimes I wonder if the kids some docs claimed to have seen really had PANDAS.Also, each PANDAS child is different. What worked for one may not work for another. For me, she was very nice, understanding, and never criticized, but I feel my going there benefited the psychologist more than it did us. Pretty much, we taught her. I would think that an OT would be a tremendous help. What type of therapists help people who have had strokes? They have to sometimes relearn everything. What skills does he already have? I would suggest starting with something that you may see the fastest results. Build confidence. That is very important. I'm kinda in the same boat you are....my daughter's PANDAS begin very early- before age 2. It has drastically altered her early childhood development and all subsequent development. So, my judgement of treatment effectiveness will be, is she getting better-moving in the right direction. At this point (my daughter is 15 now) I don't expect normal, but I sure do expect that she will began to make some progress developmentally, to regain some functioning that was lost to her. Treatment will only remove or reduce the impairment...the development/learning will still need some help- therapy!

Good suggestion. They do this if you suspect your child might have chicken pox.

I have not done the Cunningham test yet. I did not find out about it until my son was already into recovery mode and thought it was best to wait until he ever had another exacerbation again. I hope I never have reason to get that test done. That would mean he's sick again. If you're in doubt about doing it, you could just keep it on hand an have it ready to go if his behaviors worsen. If you do it now, I would at least include in your history to Dr Cunningham that at the time of the test, you thought he was starting to do better. That way she can understand his results as well.

Hopefully, life will get easier for you soon. But the worrying never goes away.

With us, sudden onset of behaviors came first, then we did a strep test because the ped had read about PANDAS once. The culture was +. So, I don't think they saw a reason to ever test for Lyme. For us (I guess you can say) the connection was very much there. He also began to see slight improvements with antibiotics. We live in OH.

That's a great suggestion. get hard copies of test results sent to you. Honestly, if you ever have trouble w/ the neuro in the future, if you have all test results in your posession, you can cut all ties with her. Faint positive? Was that from a rapid? I wonder if the ped didn't do a good swab on him when you went a few weeks ago. Are they considering it a +, or they won't give that diagnosis (of strep) until the cuture comes back? I am not a "pro" on antibiotics. So I don't know if that's a good one. So, are you going to actually see the neuro or just talk to them on the phone?

She said that the antibiotics did not improve the OCD this time around. So has it improved it before? If steroids are out, can she try Ibruprofen?

I went to an ENT for my older son to see if his tonsils were too enlarged and causing speech problems. The ENT said the are only seen as a hinderance in speech when they are so big it sounds like the person is talking with marbles in their mouth. My older (non PANDAS son) still has his tonsils. My PANDAS son had his removed in Feb this year to try to prevent strep.

Do you do the basics like change toothbrushes, toothpaste,rinse and spit cups, etc when one had strep? We don't have a "community" rinse and spit cup anymore. Also, perhaps a child in one of their classrooms is the culprit. I wondered that a lot last school year. It was my son's first year in school...preschool. He started exhibiting behavior chnages about a week or so after starting. I bet one of the kids was a carrier or something and they didn't disnifect the classrooms enough. I do not plan on sending my younger daughter to that school. Too many bad memories.

For me, a lot is instinct. But, then, sadly, I have to get to know him all over agian and I don't know how much of his personality has just naturally changed over the course of the exacerbation. An example is just because he liked playing with Transformers prior to PANDAS resurfacing , doesn't mean that's an interest anymore just because it's normal for kids to chnage interests on a whim. Not all changes will be a result of PANDAS. For my son, the OCD fades away (except for exacerbation # 3...will explain in a minute), I "test" him with things that he wouldn't tolerate in an episode and he passes, he acts happier, smiles, runs aroung outside ewithout a care. Arms raised like an airplane and just....happy. Reasoning returns. He acts in a way that one may expect a child to act. One thing to remember is that some kids will aso have "pre-existing issues". Some may have had a sensory problem, some OCD, tics, etc in addition to whatever surfaced with PANDAS. I believe my son does have some slight sensory issues but I think it is "him". Luckily, it does not affcet or hinder daily life. They also were there prior to PANDAS first entering our lives. Same with a speech disorder he has. Now back to exacerbation # 3. That time, I could just tell he was recovered from PANDAS but OCD remained. All other problems were gone, but that pesky OCD. Once I realized that and came to grips that it wasn't just going to go away this time, but it was a residual problem, I approached it as OCD. Not OCD as a result of PANDAS. When I did that by weaning him off his rituals and routines. He shed the residual OCD rather quickly and I am VERY proud to say he has none left. Let me say, it wasn't easy and it was stressful, but we did it. Now someone in the family made the comment that they think my son had OCD anyway. What I explained to the was so many people may have traits of OCD. When you get that nagging feeling that you NEED to do something and it "drive you crazy", that may be slight OCD. So if my son gets bothered that something isn't the way he wants...that's ok. He doesn't have high anxiety over it, he can overcome it within a matter of a minute or so, I can reason with him and it doesn't hinder his life at all. I can go weeks without seeing something that one may consider OCD-ish. And when that happens, I do "test" him because I do want to make sure it isn't PANDAS again. That anxiety level and for how long they have it will tell you if it clinical OCD and needs therapy. Note...he did not ever go on SSRI's. I hope this has helped and I did not go on too much of a rant.

I like the "PANDAS for beginners" what to do list. Or frequently asked questions. I don't think many people refer to the pinned threads before asking things. I think Chemar will pin the thread for you. I believe it's an administrative function.

You're not the only one worried about jinxing things. You have no idea how often I actually look aroud the room for a table or something so I can "knock on wood". I also feel very guilty when I forget to to thank God at night for giving me my son back or if I forget to say a very quick prayer for health and happiness for my family.

I just wanted to add that even though you are seeing the top neuro in your area, don't take everything they say as God's word. I supposedly saw the top ped neuro in the my area, and after time, things crumbled and I will never see him again. There are also top neuro who don't even believe PANDAS exists! Go in with a good timeline since it's been 2 years since your last visit, a list of questions, and find out the best way to get in contact with the neuro directly. Perhaps he/she has an email too. ps. Make an appt to get family members swabbed for strep too. If rapids come back neg, get it cultured. Also, for some good current info, you can always mention www.pandasnetwork.org to them. We need to get business cards printed for that website so we can just hand it out!

Also, does the parent feel the child recovered from this PANDAS exacerbation? How long did full recovery take?

Will you be able to get into the reg dr tomorrow morning? If they determine he has the flu and that's what is causing the cough, she will probably pull him off steroids. I'm guessing she's waiting to see what the ped says.

I would think a positive throat culture would make thing a heck of a lot easier if the titers are low. Keep in mind, some kids do have setbacks when they are exposed to strep as well w/o being + themself. Out of curiosity, did you take your strep + child in because they were sick or just to rule out strep in the family?

My son only had positive throat cultures and antibiotics so I wouldn't be much help with adding info, sorry. But it's great idea! Also, for the parts w/ meds, maybe consider adding how long they were on them for. Or maybe I should say at what time of exacerbation/recovery are these number taken from?Just to make sure the data is taken consistently.