peglem

The doc who dx'd isn't able to treat it? I think most areas of the country have a shortage of physicians who treat PANDAS. While the East coast seems to have a wealth of them-there are really only a handful, so I guess its all relative. This forum is a bit slow over the holidays, but somebody should be along in the next few days who can help with doctors in your area. In the meantime, you might want to take a look at the "helpful threads" thread pinned at the top of the forum. It has a lot of info that may help you feel less stressed about it, and I think there is also a helpful docs list in that thread. Many of us on this forum had great difficulty even getting a dx, so you're blessed to at least know what it is you're dealing with.

Are you talking about testing for which abx will kill the bacteria?

I PM'd you.

No experience here either, but it seems to me the impact of the abx on intestinal flora would be minimized this way. Please let us know how it works out.

I feel that is not safe to have a child on ABx forever, or perhaps he will develop a resistance to drugs? I dunno, I just don't feel too comfortable with the situation. What would indicate that he is getting better, in blood? I don't know. We just look for symptom resolution, but my kid is one that has not ever had elevated ASO or Dnase. Her immune system is messed up though, and it looks as though we have multiple autoimmune reactions going on. My daughter is on long term zith prophylaxis and gets IVIG every 3 weeks. When she still has an episode, we switch up the abx and add prednisone. I guess its all relative, but if I could get symptom resolution w/ abx alone, I'd be happy with that. In your cousins case, I wonder if the diabetes or blood sugar management has an impact on immune function. He's definitely dealing with an extra variable there.

If the zith is successful at treating symptoms, why do you want him off of it? The ASO and antiDnase titers are indicators of an immune response to strep, but they are not the antibodies that are responsible for PANDAS symptoms, so lowering those will not change symptoms. Titers can rise from exposure alone- but not overnight. In my opinion, if he gets symptom resolution w/ abx alone- stay the course, and save the big guns for if abx fails to help.

Yes, I agree. The pediatrician has told me that he cannot rx this- it would put his license in jeopardy. He knows that I communicate w/ other PANDAS people and also knows that most treatment info is anecdotal at this point. He does have several PANDAS patients and is not afraid to give aggressive treatment, provided the treatment is relatively safe. He has and will continue to go to bat for Allie with specialists- and that's why he's requesting info if there is any, so he can determine the likelihood of success, but also to have info to share with the specialist. He has a good relationship with Allie's rheumy, but I think her position at the local children's hospital makes it difficult for her to step outside the box. We may have a chance w/ the immunologist or the neurologist. Anyway, I'm not even sure if this is something I want to try yet. I promise not to bump this up forever, but would like to make sure I've really gotten input from anybody who might have some info.

'nother bump

Bumping. Pediatrician wants me to find out what experience others have had with these kinds of drugs.

Our pediatrician IS wonderful and I'm so grateful that we have him. However, because he is a pediatrician, he will not be able to rx this stuff, but will go to bat with a specialist in trying to get it rx'd. Does all this stuff have to be injected, or are there pills? I don't think our rheumy will go for it, but the immunologist or the neurologist might. What he's thinking, w/ Allie's recent migraine history, is that she has vasculitis-or at least that could be argued to try the meds out. She's on so much NSAIDs (and I've tried reducing, but cannot) that he figures the risk of low dose methotrexate is at least not greater than the NSAIDs. It really bothers me that so many docs are willing to just let her suffer because she has so many neurological problems.

Thanks. I'll look that up. Anyone have some experience to share w/ cellcept?

Allie's pediatrician called me last night. He's been pondering Allie's situation w/ this recent flare. His thinking is that we are unable to eradicate the strep-it's too prevalent in the environment and the immune system reacts even to exposure, so he's wondering if we should look at decreasing her immune response with something like methotrexate instead. With her getting IVIG every 3 weeks, he feels she'll still be protected against illness and she's on a lot of NSAIDs for inflammation. He's asked me to look into the possibility. So...anyone with methotrexate experience?

PenV was the 1st prophylaxis my daughter tried. It did not work for her either. We've done better with Zith.

Well, last day of Clindamycin. Healthwise, Allie is much better. Hasn't had a migraine in over a week. But, PANDAS symptoms way up- the old "fascinated and stuck" on things that gives her a great deal of anxiety. We see her pediatrician tomorrow. I'll try to get her some prednisone.

Sure, but what happens when you search for "PANS"?

My opinion...PANDAS is very common in autistic kids, but the symptoms are frequently disregarded as autism characteristics. I also think that sexual compulsions/obsessions/tics are very common (although not talked about as frequently as nonsexual) especially around the time of puberty. In PANDAS sensory input/response often gets scrambled.

Thank you! This is so helpful! I feel better about the "letting it go" and just letting her get through the day as best she can. We've got unusual circumstances in that my child not only cannot have a conversation with me about what's going on, but she has almost no "normal" to go back to since she's had this since infancy. We do not always know when she's sick-but when she really loses it and CANNOT cooperate or fight the fear, we find out that she IS sick. When she's well (or a bit better, anyway) she can communicate better and interact somewhat, and is willing to fight the OCD, but even then it can get very overwhelming for her to fight it all the time, since its become so endemic in her life. Sometimes she just has to have a chance to relax (us too) and come back to the battle after she's had a break.

Could it be infection or exposure triggering something?

If you use S.Boulardii (Floraster) you can give it at the same time as the abx, because its a yeast so not killed by abx. For the bacterial probios (lacto, biff,etc.) give about 2 hours after abx dose-so there's time for the abx to be absorbed 1st.

peg -- i know you have been trying a lot of new things lately, right? not at all to suggest any certain infections for your dd -- just wanted to say my personal experience -- i've mentioned before my experience with migraines with aura. last year, while being treated for bartonella (with bart rash developed), i experienced some of the worst migraines of my life. the worst -- i think i slept for 3 days and was considering if i should go to the ER -- strangely after we had been trainspotting -- still wonder if it was the quick flashs of trains or the electrical fields that could have had something to do with triggering. a year later, knock on wood -- no migraine for about 6 mths. our integrative dr believes my migraine history is tied to infection and that increase is tied to treatment. i know you have to deal with all the immediate you are experiencing -- possilby could this be also some clearing of something for her? i do believe it was for me. good luck!! and i agree -- tpotter is a genius!! I have been thinking the migraines are infection related. I think this has been brewing for a long time and just finally came to a head. Probably the zith she was on kept it at bay- but ultimately the infection won out. I hope this is a turning point for her. As far as dosing for school. I have a unique situation in that she is in a small, self contained, private SPED school. There is no nurse and their policy is to give only prescribed meds that have to be given at the same time every day. However, the 2 people that work with Allie the most (almost exclusively) are her 1 on 1 assistant and the speech/behavior therapist. They have given ibuprofen after calling me directly and I've given them a dose of imitrex for the just in case- but this is w/o the office knowing about it. Her 1-1 was coming to our home for a week in the mornings to help w/ getting Allie on the bus and we had to do an imitrex dose on one of those mornings. When she saw how it helped and how Allie knew she needed it- the therapist asked on the phone if we could give some to the 1-1. So, I think I could get some help here "off the books" from them. I hate to have to do it that way, but these people really know my child and we communicate at least once a day about what is going on with Allie. Allie does not consistently eat anything at school. I send a large lunch w/ many things that she likes, but there is no telling what she'll decide to eat from one day to the next. If I lace something with probio or any other med, she will detect it and will never eat that food again. I think we can probably work something out w/ her school workers.

So, it turns out that the ER doc did order a port culture, but it had been listed as a peripheral blood draw. As of today, that is negative (48 hours out) but they are doing the full 72 hour culture, so not for sure negative until tomorrow. Went to a regular lab for a procalcitonin draw (not through the port). Started the clindamycin today, and she started doing MUCH better this afternoon- eating like crazy and not so much pain. We are supposed to give the clindamycin every 6 hours. Does that mean wake her in the middle of the night? And how do I get the probiotics into her w/ school? I guess I can use boulardii and give at the same time as the abx.

Thank you for your concern! We just got back from the NP. It was nice to hear the voice of sanity. She had reviewed Allie's chart before seeing us and has ordered a second procalcitonin measure, which is supposed to be done 24-30 hours after the 1st one to see if it is rising. Her concern is that Allie may have a port infection so we need to get a port culture, which we will do once the office calls back to tell us where we can get that done. She was surprised the ER doc had not done that. She did find that Allie has a sinus infection. If the port is infected, we'll have to go inpatient and have the port surgically removed and get IV abx. If it is not infected then we'll switch from amox to clindamycin.

Duh! Why didn't I think of that? I talked to her "person in charge" from school today, who said the same thing! You guys are geniuses! We see the nurse practitioner tomorrow morning. I think this is more than just strep throat. I don't think I've ever seen this child so ill or in so much pain. Vicoden and NSAIDS all day, she either slept or held her head and moaned all day. When awake, she doesn't open her eyes- just a slit to barely see something. Was able to get some food into her so the meds wouldn't hurt her tummy.

She did finally calm and go to sleep last night. Looking for the silver lining- does it mean anything that she actually had bona fide strep symptoms? I mean, is this a sign that her immune system is working better? One of the labs ran at the hospital was procalcitonin, which was elevated. Anybody know anything about that? Near as I can tell, its an indicator of sepsis. Could this be related to the tooth pulpectomy that was done at the beginning of November? Dental work always seems to kick off some kind of crap for her.

Well, I called the emergency room myself and talked to the charge nurse who heard my daughter crying and whining in the background. She called the pharmacy and we should be getting what we need soon. This is godawful seeing my child in so much pain. I think this is more than a simple strep infection- so much pain that will not go away!