pr40

I agree with what was said and want to add the following. No one can actually tell you what it means. You have to figure out what it means for your child. We got two children both with both mutations. We don't know what other mutations they might have. At the moment, low doses of methylation supplements seem to be working. kids are also on gluten free and dairy free diet. I don't remember what their homocysteine levels were which means probably that they were not low. in general, my sense is that their immune system can easily get out of balance. it, however, does not have to be or remain out of balance.

we saw three different drs, an immunologist, dr Leckman at Yale, and dr b with similar blood test. neither of them suggested IVIG though we were leaning that way. all of them did suggest Abx. in case of our son, dr b also suggeted steroid taper because his behavior was much worse than dd's. in both cases, the ratinale for not going to IVIG is that abx had results. you may want to talk to falks who did IVIG since it too is not the cure. the only cure happns when organism "rights" itself. abx, steroids, IVIG might help that happen. can you tell us what your reasoning is to do IVIG?

it's good to see that our experience does not substantiate the relation btw pandas and vaccines. strep, flu and cold seasons seem to be the best explanation. thanks

someone just recommended a book infections behavior on the forum. it starts with an example of in utero effect on the fetus of infection mother had. it's on the first page. if that can happen, i see no reason why baby cannot be born with pandas alghouth that is probably rare since pandas is, in part, an auto-immune response and babies are not born with fully developed immune systems. also, some people trace back pandas symptoms to the so called "colic." regardless, treatment should be the same I would think.

ibuprofen, if i am correct, can damage the liver if taken too long so dr should monitor it. we are trying to be vigilant and give it only once a day, in the morning. and we follow the dosing on the bottle. steroid taper is given, if I understand that one, as it is in other cases of inflammation including, for instance, arthritis. if a child is in exacerbation, it means that there is an inflammation of some kind. for food sensitivity, like gluten and dairy, you got to stop it entirely for a longer period of time, 6 months or so, and can asses results only after it since it takes a while for the organism auto-immune response to stop.

I am sorry it is so hard for you. But if she does not start with abx, it will be worse and worse and then it will be even harder to do what you need to do. In case of our kids we had to convince them that this is for their own good. it one big battle of wills or whateveritis which you will have to start sooner or later. we also tried to explain what is going on and how abx can help in the way our kids can understand. smuggling medicine does not work with PANDAS kids since they have to take so much of it. dealing with the refusal is also a part of the process of healing. as Italians say, courage!

for dd9, she had a year long episode with terrible moments and somewhat better days. in all, the trajectory has been toward improvement. with ds4, similarly, a long episode with very gradual improvement and many exacerbations along the way.

names of PANDAS specialists are given in the heading of the forum. you will find other useful stuff there. i want to second dedee, perhaps the abx she named would work better. we had similar issues with aggression with our dd5. I am not a doctor and cannot give you an advice but can say that we would not do anti-depresents for our kids. you can also try ibuprofen and food elimination while you wait for your apt. with our kids, PANDAS meant cycling through different symptoms. then, on abx and after a steroid taper, they began to slowly disappear and our kids are slowly coming back. expect a process, a year or longer. we did not hear about killing people for weeks now.

did you do blood work, immune panel and vitamins and minerals? in our experience, food sensitivity (gluten, dairy) as well as impaired methylation could be the causes, not just viruses or bacteria.

i am sorry i don't know much about interactions. our dd9 has been taking 1.5mg for a while now and it helps her.

see if your pedi would put her on long term abx because of strep. strep has known and serious side effects. if she is on abx, change them. in our experience that is how PANDAS drs start treatment. do a blood test with immune panels. that, again, can be ordered by pedi and is a part of conscientious treatment of strep. we had a similar situation with our ds5. we managed to have hims seen at the same time by pandas dr as his sister. when one sibling has diagnosed PANDAS, it is easier to get the second diagnosis.

i am curious, how did you decide it is vitamin D?

in general we are averse to children on computers but screen is one of the things that makes our ds5 engrossed. now, if he did not have PANS, I would have no problem of getting an I-pad for him in hope that he would leave it in two and a half weeks. Unfortunately, I don't think we can expect that given his OCD tendencies. So, I want to ask about your experiences with electronic gadgets. do your kids benefit from them? and if so, what are your rules?

I've been meaning to note this for a while. I cannot run an actual statistical analysis of the forum but it seems that many of us have joined in January. I don't know what this means exactly. My theory is that most kids being born in January, most parents take them to annual physicals during which they get vaccines. Second theory has to do with the time of the year which is in the Northern hemisphere the time for most infections. third idea is that our kids get their flu vaccines in the fall and it takes a while for parents to find the forum. fourth theory is that this is just a coincidence.

l

abx is antibiotics. with supplements it is trial and error. Rule is go slowly and see if it works. Our dd9 is on melatonin, 1.5mg nightly. it helps her fall asleep. She's been on it for three months and we have not seen any bad effects. she was on valerian last year but I stopped that. Stabilizing mood for us has been a long process, after abx, better sleep, came CBT therapy because she seemed ready for it. so, over a long period of time, a year now, we have seen significant improvement and thinks he is ready for CBT ds is 5 and he is too young for therapy. we do, however, apply what we learned from our dd's therapy to him. He seems to be at the place now when we can try this. WHen in exacerbation, we try not to expect much of him. another thing we learned, and we leave in New England, is that parents need to become their children's doctor. This if for no other reason then because the condition is too complex and we have the best insight into what is going on.

at the same time, you may want to continue monitoring food sensitivities. In general, there are many things that can throw certain immune systems out of whack. Strep is only the most obvious of them. Once strep does it, then many of us found that viruses too can lead to an exacerbation. Then, we found that food sensitivity (gluten and dairy in our case), can be triggers. So, all of these "fronts" (strep, viruses, methylation, food, and environment such as mold) may need to be monitored. We got to address one by one after we started abx and kids calmed down -- on abx, after about a week, our son looked at us in the eyes for the first time in who knows how long. best of luck

our dd9 has intermittent stomach aches. they resolve after she goes to the bathroom and may not be as painful as those you describe. she is on a gluten free diet though she does not have celiac, her brother does. recently we put her on a dairy free diet as well and are waiting to see if stomach aches return. she is on a regular magnesium

we noticed our son get angry when he eats dairy. just an idea

there are many doctors that "believe" in PANDAS. you need a doctor willing to TREAT it and knowing how to do it. Bipolar is a description of symptoms, not the cause. if you dd has celiac, that means that she has a serious auto-immune issue which makes it likely that bipolar behavior might too be caused by auto-immune issues. with our ds5, it was not only celiac but also dairy sensitivity and sometimes even high-fructose. So, I would ALSO do food elimination diet. I don't know about giving psychotropic drugs to a child. There may be a shorter waiting list for Drs. K and T.

we tried anatabloc. quite expensive. no effect no sideeffect to report. independent research is not out yet. only company's own scientists find that it works. cbt is cognitive behavioral therapy.

thanks, allie. Yes, I did look at the website but could find only discrimination as the basis for complaint. I didn't get how discrimination applies in case of, basically, misdiagnosis and refusal of a different treatment. Malpractice? unfortunately, 180 day window has closed.

on strep and probiotics. one of the PANDAS Drs said that strep is different. he did not elaborate. i didn't ask for clarification. so, strep in probiotics could be ok

for inflammation we use ibuprofen, ds had a steroid taper as well. liver needs to be monitored for a longer term use. cbt seems to be very helpful for most kids. we find it not working DURING a flareup. you are lucky that you found a psychiatrist willing to treat with abx.

you may want to try ibuprofen and steroids and a longer course of abx. if kids develop OCD, they may be candidates for NIH study on PANDAS. take a look at the Pediatric Acute Neuropsychiatric Symptom Scale on this forum if you have not done it already. Best of luck