peglem

I'm getting blanks on some pages, too. If I really want to read it I click on the person's profile and then posts and I can see it that way.

Thanks. I'm so baffled right now! I'll let you know if we figure anything out.

Well, I'll tell ya, Wilma. My daughter is nonverbal and has been "diagnosed" with autism since she was 3 years old. Until she was 10 (when we found my current pediatrician) I really couldn't get a doctor to check anything- everything was attributed to autism...illness just didn't exist in autism, I guess. She did, in spite of being sick with URIs almost constantly (was told its probably allergies because autistic kids get those a lot!), develop skills in reading and math, and even had quite a few (a hundred or so) verbal words that she used appropriately. Around 8yo, that was all lost and she degenerated into a mess of misery and self injury. But we were still seeing things through an autism filter and her OCD was called stims, stereotypies, and perseveration, etc. Around age 10, we had an insurance change and had to switch docs and stumbled upon her current pediatrician. At the same time, I was beginning to hear about PANDAS-the research was very new (was it really only 5 years ago?) and asked the new pediatrician to test for strep, even though she had no typical symptoms. She came up positive and we went through a couple of years of courses of abx whenever she tested positive for strep- which was whenever she was not on abx (well, there were a few negatives in there). She improved on abx every time and then when her behavior deteriorated, I'd bring her back in and she'd test positive and then we'd have another go round of abx. Getting the help of specialists locally was impossible. Her tonsils came out when she was 12. We thought that'd take care of the strep, so did not keep up the abx, and nobody wanted to swab a throat that was healing from tonsillectomy anyway. We had one of the worse flares ever after that. Bad, bad photophobia. Things that looked like seizures, but did not show up as seizure activity during the 8 day video eeg. Constant psychotic rages. After she healed the strep was back and she had bad vag. yeast as well. About eating and sleeping...was an issue her whole life- Until age 6 we kept her on bottles of strawberry protein diet shakes just so she'd get enough nutrition to stay alive- she would not eat solids and though she could drink from a cup, she would only drink water from a cup. Finally got rid of all the bottles when she was 6 and wouldn't drink them anymore because she was sick w/ a sore throat and it hurt to swallow. (that's what I think anyway- doctors did not check her throat because autistic kids have eating issues and the endless drooling is supposedly typical of autism as well). So we found a few things that she would eat- not great nutrition, but the best we could do. And between birth and age 10 when she started getting abx, I think she slept through the night maybe 10 times or so. I honestly do not remember much because I was so fricken sleep deprived myself! Anyway, with abx the sleep got better- somewhere in there we gave risperdal and other psych meds several tries. The risperdal did help her sleep...until it didn't anymore- but hey, it was a nice month! Still, when she has a PANDAS flare, sleep becomes an issue again and so does bedwetting. OCD gets in the way of sleep- she'll be just about drifting off then jumps up in a frenzy to perform whatever thing is OCD at that time, and has a terrible time getting it right. She wakes in the middle of the night to do the OCD, as well- could be she dreams OCD! The reason I said I'm not sure about PANDAS is because just recently she's had some extra stuff going on- looked like sydenham's chorea/lupus/hyperthyroid/diabetes insipidus/arthritis all mixed together. Then she tested positive on a rapid strep test while on 2 ABXs. So a course of clindamycin was administered and 2 days later she had a rapid positive again- but a swab was sent in for culturing and sensitivity testing. The culture came back negative for strep. So the "more than PANDAS" symptoms, together with the fact that we no longer know if any of her rapid strep positives were actually strep...I'm feeling sort of lost. Though her "other symptoms" are slowly improving, her PANDAS stuff (or what we thought was?) is definitely getting worse. In fact I had to take a break in the midst of writing this to deal with a twenty minute bout of SIBs and aggression. I can pretty much gauge how poorly she's doing by how beat up I am. I'm sorry this is so long, (and you're probably sorry you asked) but once i started it just all came pouring out. I hate this crap!

I think there's more to this story than what the news is reporting, probably because of confidentiality laws. When the mom says she doesn't understand why they say her daughter is psychotic because she can read and write....makes me wonder if CPS was involved in the decision to send her to public school, instead of homeschooling. Because it sounds like the mom is defending her homeschooling there and not the question of whether to medicate or not.

That has not been discussed. But, its something I'll ask her pediatrician about. She woke up this AM screaming in pain with her hands swollen and stiff. The naproxen worked in about 20 minutes to ease her discomfort. A sore erupted on the first knuckle of each hand during this-maybe from biting herself, but maybe we have a chicken and egg thing going on here- where the SIBs are triggered by something under her skin and we have been assuming the SIBs are causing the sores. She also has a sore on her forehead and the back of her head where she bangs. The sores on her hands healed pretty quickly with the clinda-even the one that hasn't really been fully healed in a coupla years. But still has the ones on her head. Last year her forehead was swabbed to culture for staph and came back negative. I think we need to try again to culture those sores.

I agree that normal titers do not rule out PANDAS. In fact, a LOT of PANDAS kids have negative titers. If you can find a doctor who will let you try a month of full dose zith or augmentin a positive response to abx would be a good indicator. You might try sort of bargaining w/ them- saying you'd like to try that before psych meds. I'm assuming you have already swabbed for strep? Many PANDAS kids also do not have typical strep symptoms (sore throat, fever, etc) so, if you haven't done so already-that's worth a try. One more thing that sometimes helps is ibuprofen. It has an anti-inflammatory effect that sometimes decreases PANDAS behaviors.

I have a similar situation. My daughter was on zith and keflex.. The keflex was added because of symptom increase on just the zith. Rapid strep test came up positive. Clinda was prescribed-10 day course to clear the strep and she was rechecked 2 days after clinda- positive rapid. But this time a swab was sent for culture and sensitivity testing. The culture was negative. So, we're on augmentin right now. I don't know what to do for treatment anymore. Physical symptoms are subsiding- they were not her usual PANDAS symptoms- she had/has fluid and swelling in her hand joints and swelling in her knees and serious chorea- could not use her hands at all. But the OCD is BAD in the aftermath. We've never sent positive rapids out for culture before, it was only sent this time to get sensitivity testing done. But this calls into question the validity of every rapid we've ever been positive on (A LOT of them)... Looking this up, some of the literature says that if a child is heavily colonized with staph aureus, the rapid can show a false positive, but of course, this is considered to be very rare.

We use ibuprofen before. Benedryl is not a good med for my child so we don't use it.

Oh, one more thing- I would not do steroids until after abx...if there is an infection the steroids decrease immune response which can increase virulence. Steroids are helpful in stopping the (auto)immune response once an infection is cleared.

Bipolar does not remit w/ antibiotics unless the symptoms (bipolar is just a description of symptoms, not an actual disease) are caused by bacteria. Scott Smith is right, Many, many PANDAS kids do not have elevated titers for strep. I'm curious, if she remitted on abx before, why hasn't abx been prescribed, at least to help with symptom flares?

My daughter gets IVIG at a pediatric outpatient center of a local hospital. The nurses are WONDERFUL! They had not worked with other PANDAS kids before (and my daughter has some added challenges as well), but they had a lot of experience with scared children and are very skilled with helping them in a compassionate, caring way. Hope you can find a doc to rx some sedative to help. Will the immunologist rx some, since he is the doc ordering the procedure?

Wilma, i have not only walked in your shoes, I've worn the soles clean off of them! Does your daughter understand that she is ill? Maybe you could postpone until she is feeling better? We did a trip to Disneyland (our last, probably ever) a few weeks before my daughter's tonsillectomy. I didn't want to go because i thought my daughter was too ill. Hub wanted to have a fun vacation before the surgery- he should have trusted my instincts. My daughter had a bad, bad, fright or flight episode right in the middle of the courtyard at Disney, while it was jammed packed with the shoulder to shoulder crowd awaiting fireworks. It was very scary and very difficult getting her out of there. I never thought this would happen. My daughter loves Disneyland and had already waited over an hour for the fireworks show...she really, really wanted to see it. It was the first time that I genuinely understood that she can't help the aggressive rages and hates that they take over her life. I'd rather deal w/ the meltdowns in the privacy of my own home. Just sharing this experience because unless you are sure she can hold it together there, you might end up, well, like me. If you do decide to go, I wish you the best and hope you and your family have a great time. Its tough when our kids are suffering and we want to give them some joy...but sometimes they just can't be joyful no matter how much they want to.

Well, my kid has abnormal EEGs, but no seizure activity. But, she's pretty messed up and at this point, I really don't have any idea what's going on. The only thing I know for sure is abx makes things better so there must be some bacterial agent causing those things that improve w/ abx.

I think they can culture for a staph infection. Kinda funny, because all along, her pediatrician has been saying it looks like her skin is colonized by staph (underlayers- not on top). I'll try looking at nojo, maybe I can find something.

Valium, we use it every single time, mostly to just get her past the elevators! She gets her IVIG through a port now which has made the needle problem a thing of the past. (at least w/ IVIG)

Many PANDAS kids are asymptomatic for strep (other than the neuro symptoms) so you really can't know that she hasn't had a strep infection unless you've tested for it. All I'm saying is that if you are looking for strep evidence that correlates to neuro symptoms, you are better off getting an actual positive strep test than trying to catch the titers as evidence because the titers and interpretation of them is not as solid. IMHO, the omegas and vitamin D likely helped by decreasing inflammation.

Allie's culture for strep (from Saturday's positive rapid) came back negative for strep. The only reason it was sent in was because they wanted a sensitivity test. I know there was somebody here awhile ago who continually got rapid positives w/ negative cultures. Looking back, Allie has NEVER had a positive culture, even when she's been PANDAS symptomatic. The only time culture was ordered was when rapid was neg. Her pediatrician suggested that it may be something cross reacting with the strep test (something has the same or a similar antigen that the tests looks for). So in researching, it seems that colonization w/ staph aureus may cause false positives on the rapid. I was wondering if the other person who was plagued with positive rapids/negative cultures ever got it figured out?

The titers may indicate a recent strep infection...and that's all. There is not a lab test for PANDAS. Its a clinical diagnosis. If she is having problems right now, it may be a good idea to get her swabbed. Establishing a temporal relationship between the neurological symptoms and strep is important. Redraw titers in a month or so- rising or decreasing titers will give you more information than just elevated titers. Rising titers would indicate that there is still strep activity present. But you cannot beat an actual positive strep test for evidence of strep. Improvement in neuropsychiatric symptoms from abx is also a good indicator that there is some kind of underlying bacterial infection at the root of those symptoms.

How does he feel about 1/2 eyebrows? And do you think you'll be able to maintain his current level of functioning with non IVIG treatments alone? I can see how you're conflicted on this...it would be nice to have the IVIG option waiting on the side lines. Our reality is that we can never trust that the "doing okay" times will last, and just when we start to get used to the "better", we get an unhappy reminder that our child is still ill. If you're feeling like you need a push to get this done, then you probably need to do it.

Have you had positive strep cultures or rapid tests? I don't know what tests your doc has run, but I suspect he's looking for titers (antibodies) to toxins that are excreted by groupA strep- ASO & AntiDnase. Those are blood tests that are generally run to confirm a recent strep infection. A positive result confirms that there was a recent infection. Unfortunately, a negative result DOES NOT rule out a recent strep infection, as many people do not have elevated titers even when it is certain that there has been an infection.(a positive throat culture) If you already have evidence of an infection via rapid strep test or culture...there really isn't a need to confirm with a blood test. There are many doctors who do not understand how to interpret the titers and that can sometimes cause problems for patients who are denied treatment based on negative titers. Dr. K will know how to interpret the tests, though. Are you seeing Dr.K, or just consulting? I don't know what other tests may have been ordered.

I don't think IVIG eradicates infections (it hasn't in my daughter's case anyway). Nobody is exactly sure why IVIG helps with autoimmune disease, but it is thought that by greatly increasing the body load of IgG, production of the body's own IgG is decreased (or halted), including the production of auto-antibodies. I think IVIG is a relatively safe procedure, but really, you have to trust your doctor and go with what you think is best. There doesn't seem to be any hard and fast rules to treating this disorder.

Thank you so much. I sometimes seriously wonder if demons can take the form of bacteria and what's really needed here is exorcism! I haven't acted on that thought in all these years, but every time it gets bad like this...the thought occurs to me.

I think technically a psychiatrist CAN prescribe abx, but their expertise is with psych meds. The pediatrician is the one with the abx expertise and I think the insurance company would be better w/ the ped rxing as well. The immunologist should be able to include recommendations to the ped in a report-and the pediatrician should be able to call and consult w/ them as well. The pediatrician is supposed to coordinate care and services, so that's what I'd do.

Yeah, just augmentin. I don't think its working...uber bed wetting last night. Saturday, when we had the strep test done-only nurse practitioners are in. Her pediatrician has suffered a good deal of grief w/in his office over the rifampin, so I didn't bring it up. But, he called me last night (from home, while cooking dinner for his kids) and we'll regroup after her rheumy appointment Thursday. He said he wondered what the ID docs would think of this situation, and I said they'll probably just say she's a carrier, so don't treat it. He said that's BS (only he didn't abbreviate), that he thinks she's colonized under her skin and he thinks that's why the rifampin works for her. So, we maybe headed for more rifampin, but one step at a time, I guess. She does seem to be slowly, slowly improving, or at least not getting worse. I'm wondering about diabetes insipidus right now- she's drinking a lot of water, and has been having some problems with daytime leakage before she can make it to the toilet.

Will your local pediatrician work with them and take direction from them? We don't really have a local PANDAS doc. But, we have a very good pediatrician, who works with whatever specialists we see.