pr40

it's possible that you have an autoimmune problem at least somewhat like PANDAS. these things run in families and their symptoms might be different at a different age. You may want to start with a complete blood work and go from there if you haven't done that already. Courage! (as Italians say)

he must have meant it in a figurative sense. as in, the kid inherited this diastase and not as in this gene is the cause of PANDAS.

why call your kid's symptoms mild? sure there are much worse cases but your child has a variety of symptoms that are lasting a long time. put that together and they no longer look mild to me. some believe that PANDAS symptoms might get worse over time if untreated. we did not want to wait and see if that thinking is incorrect but went for abx

joybop, by the way, we are near Boston, in Portsmouth, NH. we haven't had any luck finding drs in Boston and are now working with dr B in CT. As far as we know, he is the closest PANDAS specialist. It seems logical that PANDAS kids have other autoimmune problems since PANDAS usually refers only to behavior and psychiatric symptoms like OCD, anxiety, and so on. I wish there were a database of all symptoms PANDAS kids have.

In general, there are only few pandas drs and they are listed in the pinned materials on this forum. They are our best resource. Do do a blood test, immune panel is most important, coinfections like Lyme matter as well. I never heard of a complete resolution of PANDAS after one short abx treatment. They might exit. Such cases, however, don't end up on the forum. there is not need. anti-inflamatories, IVIG, steroids, are an alternative to abx. but you'd be best served if you make an apt with one of the PANDAS drs at this point. what usually happens with abx is that they provide temporary, and when taken over longer periods of time, gradual improvement. I personally think that you should try to understand a bigger picture of how your kids immune systems work. obviously, there are issues in addition to PANDAS, like allergies you mention. More often then not, PANDAS is a part of a complex process that is not functioning well. best of luck

If I can sum what previous posts are suggesting: you are your kids best dr or, rather, you should teach yourself to become your kid's doctor. And then when you do that, you can set realistic goals and choose real drs that can get you there. There are prudent ways to proceed like check for co-infections, monitor myco (if that is what your kid has), see what other autoimmune ailments you have in your family, check for food and environmental sensitives, and so on. Put another way, I don't see any one dr out there yet for PANDAS/PANS

NIMH should do something about insurance coverage as well since insurance companies based their pay for procedures on diagnosis in DSM. THey are, unfortunately, going halfway.

if these are symptoms as they appear to be, treat them like symptoms. I am not sure why you would not go for IVIG. In the meantime, as a bandaid you can try NAC, said to help with rages. for us, getting of gluten and dairy helped somewhat, too. If you have not already, you can try to be extremely nice when she rages. give her compliments and redirect her mind to something else. it is difficult at first and then it gets easier gradually. participating in her rages is the worst (i am telling this to myself not just to you).

vitamin b12 methylcobalamin calms our kids down as does Ibprofen. you may want to try those.

It seems that the rule of thumb is about a month without flareups before you begin to think that the kid is out of the woods and that you should discontinuing abx.

it is not clear which test your child had or what the result was. PANS is a diagnosis when strep is NOT a trigger.

yes, you should seek a PANADAS/Pans dr and get yourself on a waiting list. it is encouraging that your ds went into remission so quickly. while you wait: Things you can do if there is a flareup: 1) start long term abx and/or a 2) steroid taper. Do a comprehensive blood test with all immune markers, vitamins, minerals, heavy metals Ib-profen sometimes works too esp with rages. We do melatonin for sleep. If others in your family have food or alegery issues, they can also be a part of your ds's problems. do a through search of this forum. check what others have done with similar symptoms -- not all PANDAS kids have all the same symptoms. And, yes, ask questions on the forum. In my exp, precise questions lead to more useful responses. Best of luck

I am not sure if what you are describing is a remission, TinyTreasures. Are you saying that the wet/dry raging episode ended and then for a while, like days or weeks, you did not see any other episode? With us, it changes by hour. He can be nice an sweet and then turn awful and back several times a day. the same with dd.

horrible change when abx are first given could be herxing. you may want to read more about it. i want also to reinforce what allie suggested -- pandas is a battle on many fronts not just infection. you need to figure out what else your daughter needs - in our case, it was food intolerance, methylation pathways, and possibly leaky gut. Until we started dealing with all of them, we did not see considerable improvement though we did see the kind of change you describe, finding out a person in your child you did not know was there due to Pans.

in place of dairy, if he is sensitive to casein, you can do peanut butter if he is not sensitive to it. there are many ways to get fat. fish oil, olive oil, avocado, nuts of all sorts -- I don't remember if you mantioned your child's age

usually, you see a herxing reaction before you see improvement. usually, too, augmentin is combined with zytromax and perhaps other abx. usually, months if not years of abx. once ds does not flare, you can take him of abx. but, at times, it is not that simple and abx alone do not aliviate all pandas symptoms.

we are strugling with the same issues related to aggressive talk. cbt drs want to treat it. thing is, however, that when he is OK, he is not aggressive at all. so, how you treat somethign that is only seldom there? I think that the answer is that you treat PANDAS not behavior. It may be different with behaviors or feelsings like anxiety that are there with more consistancy.

regular OCD? Living in PANDAS world for a year now, I am no longer sure there is such a thing as a regular OCD. I mean, alternative to PANDAS is a belief that our kids (who have not been physically or physically traumatized) have mental problems seems outgrageous. Developemnetnal issues, perhaps.

essay is not available. can you tell us what it says? thanks

our ds5's symptoms were very similar minus impetigo. get your support for a flareup in place before it happens. count on months of abx, combination, etc. do bloodtest of inflamatory markers, check vits and minerals, think of methylation. if it is pandas (and it does sound like it), get ready for a long fight, year, two, three, who knows. why 98% dariy free? why not 100%? and so on

dut -- that article should be among the pinned things on the forum. it's seems an important part of the PANDAS puzzle

did either of you try a diet change like gluten free? how about methylation intervention (mb12 and so on)?

could there be a more direct connection btw sugar and rage? not via strep or yeast. gut bacteria feed on it. is there something else? how about hypoglicemia? it would explain the rage.

just a quick reaction to something LLM said: it's easy to go GF CF. first step may not be that easy but you can get used to it quite quickly. We make our own bread, cook all of our meals, and so on. If you think your kids might be helped with that diet, I encourage you to do it. I can help with any culinary advice you might need. Remember that Middle Eastern, Indian (with some modifications), Chinese (with some modifications), Japanese, as well as some South American cooking is GFCF. We did see a tramendous change when we went GFDF -- our dd9 RLS has almost desiappeared, our dd5 has longer time btw exacerbation and ex don't last as long nor are as disturbing to him and us. GFCF is not a solution but it is a part of a solution for us.

one of pandas drs suggested three times a day the dosage written on the ibuprofen. so, our dd9 is taking 200mg 3 times a day. but be especially watchful for liver problems. we soon went to 1 a day bc dd had nosebleads and exacerbation was not as bad.