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We have a dd8 who has PANDAS with restless leg syndrome. She is doing better thanks to abx. I am writing about her little brother, ds4 whose behavior has drastically changed in last few months. In September he had a terrible sounding cough, during which he became extremely irritable and aggressive. He would attack us and hide in dark places where he would stay for a long while. By the end of September, we got him on a gluten free diet (his father has Celiac) and on Penicillin, 250mg x2. Slowly, during October his situation improved. Gradually, he became no longer extremely irritable and aggressive, but neither one went away completely. Two days ago, after 30 days, we stopped abx. These were as bad two days as we know with him. We did a blood test back in September, checking for ASO, DNase, ANA, and so on, before we put him on abx and all results were fine. He is worst in the morning and around dinner-time and his mood and behavior can turn on a dime. We have no bi-polar disorder in the family but do have auto-immune stuff. After reading Explosive Child which was recommended here, we tried some of the strategies and had some results. But, he does not fit this category 100%. He seems to be seeking your “no” and doing everything in his power to get it. As far as we know, he has no history of strep. He was bitten by a tick but no lymes. We are not sure what direction to take with him? Any thoughts?

NIH and Yale study is still looking for a few more cases. you may want to contact them.

We don't have any experience with steroids but from other posts I know some have had quite good results. I am not sure if your tried them. You can also start a new tread and do a search on steroid tapers of this forum. just an idea.

This is only indirectly related to the original post: whatever I know about PANDAS I have learned on this forum. Second, I am our kids main doctor (although I am not a physician) because I am the one who spends time with them, who knows them better than anyone else, as well as the one who has high stakes in their well-being. Now, I want to plead once again and ask you all whose knowledge and experience seems more important than any other resource for all of our kids: could we, please, post our kids brief histories? Among the things I have learned is that there are kinds of PANDAS/Pans. Some come with Lyme, some don't. Some come with OCD, some don't. Some come with high titers, some don't. But, there also seems to be a correlation between kids who have similar behavioral and physical symptoms and what helps them. Put another way, my DD8 seems to be a combination of "momWithOCDSon" and "Hayley" kids -- you may know what I mean. Brief cases histories that would include symptoms, what you tried, and what the effect was would, I think, help us all very much.

thanks. our kids are DD8 who was diagnosed with Pandas and ds4 who may have pandas. i am especially interested in how to talk about PANDAS in respect to anger, irritability, certain kind of slowness in getting dressed, regression, and so on. (By the way, it seems striking how our PANDAS kids, though their PANDAS is manifesting differently, do seem to have very similar behavioral issues.)

I've seen good advice on how to talk to your child's teachers about PANDAS. But, how do you talk to your child who has PANDAS about his/her condition? thanks in advance for your thoughts.

we heard, mainly, from one person about the effects of camel's milk on their PANDAS/PANS kids. Could someone else who tried it speak as well, please?

we did not have as bad of an experience as the one described. At BCH we were treated by doctors, one neurologist and one psychiatrist, who were willfully ignorant. Neurologist's advised us to sit tight and wait. It will pass. Psychiatrists offered Prozak -- while we wait, I guess. Nine months later nothing changed for the better. Things got only worse. I would go so far as to call this denial of service and would wish for a lawyer to get involved, not only a reporter. There were many reporters after the publication of Sammy's story and not much have changed at BCH. Knowledge is out there and they are responsible to acquire it. They can have doubts (and we want them to have doubts since that would keep them searching to understand Pandas/Pans better), but they should not deny treatment.

thank you for your replies. We tried magnesium last night and it seemed to have had a positive effect. I hope it continues.

Mi smo imali nesto uspeha sa NAC (n-acetylcysteine), gluten-free dijetom, i ribljim uljem. sve najbolje! petar

For those of you who had experience with Restless Leg Syndrome (RLS) and Pandas -- what worked? what medication? what diet? what didn't work? My dd8 is now on penicillin and some of her Pandas symptoms have improved. But her RLS seems to have become worse. She has dry eyes and some anxiety going to sleep. We use melatonin 3mg to fall asleep. She is also on NAC 600mg in the morning.

to dc mom: there are many of us in this same boat, just beginning to cope with PANdas OCd, etc. you say that you can give some suggestions for parenting OCD child -- please, do. How exactly do you deal with a child that says no to everything, that can have a meltdown every five minutes? and so on. thanks in advance

A few days later: Dd9 is on 300mg in the morning and doing reasonably well for a while, until the afternoon. She is also taking now two iron pills for her RLS Another thing: we started our ds4.5 on 600mg. he never had strap but has been displaying the PANDAS kind of behavior (aggressive, irritable, etc.) that is out-of-character for a few months. His change, again, was immediate. He suddenly opened up, started looking us in the eyes, etc. Until the afternoon when he crashes. So, today I will give him 300mg in the morning and 300mg in the afternoon. we'll see how that works. thanks

thanks, Nancy, for your reply. RLS treated with dopamine antagonist that's how much I know but that is where my knowledge of bio-chemistry ends. NAC may or may not be a dopamine antagonist. Do you happen to know? That's a good idea to give her NAC twice a day -- thanks. NAC was the only thing she took that day.

I wonder if you can help me. I gave my DD8 600mg of NAC in the morning. The transformation was almost instant. Difficult child was gone and one wanting to please appeared. By afternoon she was a bit hyper. At bedtime, her restless leg came back after being gone for some time. RLS is related to dopamine levels. Do you happen to know if it possible that NAC caused RLS?

Yale study had turned us down. We haven't yet been able to see any of the individual doctors (Drs. B,K, L etc.) because of our insurance. A psychiatrist at Children's Hospital in Boston suggested Prozak, much like your dd was recommended Zoloft. Dr. Torres (associated with what he calls Boston PANDAS group) would treat her with antibiotics but only if her blood results were not normal as would another neurologist from Children's Hospital as would our PCP. We could not see Dr. Geller but in his private practice. and so on. Dr. K read our daughter's brief history and suggested that this might be PANDAS but no we did not have her yet diagnosed with PANDAS by a competent doctor. She has been on antibiotics three times for 10 days but not on PANDAS abx regiment. There are perhaps two significant differences between yours and our dd cases: 1) our dd had strep two months prior to the first onset of symptoms (and took abx for strep right away) and 2) she presented with restless leg syndrome-like leg problems which are, now 8 months later, gone for the most part. otherwise, the two cases seem remarkably similar, esp. chewing, dressing, remarkable improvement after meals,

Unfortunately, I don't cannot answer any of your questions. Our dd8 presented with much the same symptoms and we were turned down by Yale study. Their reason was not enough classical OCD symptoms. We are in a limbo, doctors who treat PANDAS/PANS don't consider our dd a bad enough case and most other doctors would treat her only if she her labs are not normal. I am not sure what our options are and would, actually, ask you to let us on the forum know what you have done. best wishes

A comment on the giddy: that is one of our dd8 symptoms. We know it is a symptom because she is not happy but giddy. Thank you. The GI had talked about downgrading as a possibility. You seem so knowledgable..mind if I shoot another question? . Dr. T has taken all 3 off of abx. He thinks they might have virals issues. I am awaiting a labslip from him. In the meantime, my dd 9, who has been on abx for a few years is now off. She is VERY happy. Most of her symptoms have disappeared except her anxiety. It hasn't gotten worse, but, is just still there. When I say she is happy, it's almost like she is giddy. I'm not sure if this is a normal happy little girl and just haven't seen it in years or it's a strange reaction. Any thoughts?

Does anyone have experience with Dr. Pasternack from Mass General Hospital? Can you recommend him?

Hi, if this meetings that take place in Massachusetts are announced a week or so in advance, I may be able to make it. thanks

If I can make another plea for more of case histories, please. They are among the most helpful sources for parents and doctors. The more we have publicly available, the better the case we will make.

Our child is an 8 year old girl. Symptoms started in December 2011, after an episode of strep in mid October which was treated (beginning 10/17 2011) with cefzil susp. 250/5cc 1 tsp po bid x 10 days. IVF child, nursed for 30 months. When 3 months old, sensitive to her mother drinking milk. Tummy pains and so on stopped when mother discontinued milk. At 2, right knee swollen for a week or so. X-ray showed nothing. Test for Lyme negative. Before 8th year, antibiotics only once when she was 2 and had pneumonia. Otherwise healthy, usual colds, etc. First symptoms were those of Restless Leg Syndrome, an involuntary movement of legs, especially in the evening, and insomnia as a result. Soon separation anxiety appeared, general moodiness, irritability, regressive behavior (wanting to be wiped after going to the toilet, sticking out her tongue, throwing tantrums, etc.). As symptoms worsened, they included the hands, which she also felt she had to stretch and move in strange ways. Within weeks, her gait was also changed, as she walked with her ankles pressed outward, and little hopping movements, in response to the feelings in her feet/legs. She has become easy to distract and very slow in doing basic functions (getting dressed, doing homework). She has a certain way of doing some things (like putting two pairs of socks on), walking with a stick, her hair has to be done a certain way, and so on. She began to insist that Mama wipe her after pooping, convinced that there was always some extra poop to be cleaned, which must be done by Mama. Very upset if told she should and could do it herself. She picks her nose until it bleeds and touches her mouth often. She has frequent headaches; nausea and loose stool sometimes. She often feels tired. Her math is not as good as it used to be. However, her drawing and writing seem to have remained the same. She is able to go to school though she does not perform at the same level. She also does not seem to be able to stop herself from saying certain things. Sometimes she is very sensitive to light and to being touched. She can be depressed or elated. Most often she is in a bad mood. (Often, after she eats her mood markedly changes, but the change may not last long.) Mid April 2012, she suddenly seemed fine for a day. Then had a bug, nausea and vomiting, no fever, during which she had all of her symptoms again. Then, few days after the bug was gone, she was again fine for three days, then symptoms returned in a mild form. In June, her condition is chaotic. One day she has many OCD symptoms – having to touch every object by which she walks, for instance – the next day she can walk down the street normally. Changes can happen in the matter of hours. We see no rule. Currently, we are in this mild symptoms phase. RLS seems to have disappeared entirely. She was seen at Children's Hospital in Boston, at neurology, on February 9, 2012, and diagnosed with post-strep RLS. She was taking 1mg of Clonazepam (after a gradual increase to that dose), for 6 months. We don’t know if it helped her. She has also been taking iron supplements, which may help with RLS. Her most recent levels indicate improvement: iron saturation was 10, and is now 37. Ferritin was 52, and is now 76. TIBC was 349, and is now 336. And iron was 35, and is now 129. In December ’11 and February ‘12, she was on an antibiotic for ten days. We did not see any changes in her symptoms while she was taking it, though on the first occasion it seemed that the antibiotic stopped her symptoms from getting worse.

Hi everyone, I am still new to PANDAS and am trying to figure out the basic stuff. So far the most helpful have been case histories. They, first, helped us identify symptoms, gave us some ideas of what remedies to try and how this thing might progress. PANDAS is highly individual as we know. So, I would like to make a suggestion: can we, please, devote one thread (among the, say, helpful threads) to case histories? I imagine that they would not be day by day histories, but month by month, including symptoms, medications tired, the effects, general progress, and so on. Such case histories would be very helpful not only to parents but also to doctors and scientists doing researchers on PANDAS and would establish, if nothing else, than a detailed description of this thing in its many variants. So, can I please urge you do it? I am not going to start with my daughter's history with PANDAS because it is short (6 months) and we still don't know what we are seeing, doing, etc. Thanks in advance.

thanks for your replies. We have HMO. I guess, that's the problem.

I wonder if you can help me with this. We have Harvard Pilgrim which has refused to cover a visit to Dr. B. Has anyone had this issue before with HP? Can you tell me what you did? HP is sending us to Drs Laurie Miller and Marc Natter from Tufts Floating Hospital. If you happen to know them, do you recommend them? thanks in advance