ajcire

I don't have much to add as I haven't had to deal with all of these tough decisions as my son presents so mildly but regarding the tonsils... I am certainly not suggesting it to anyone but we also had my son's removed.. The ENT was not familiar with pandas until I discussed it with him. He got his laptop out right then and there and "googled" it and told me he felt comfortable with my reason for doing it. My non pandas daughter had hers out because she fit the criteria of multiple strep throat within a certain period of time. My pandas ds had never had a sore throat in his life (or never told me about it) but did have positive cultures at times I asked him to be cultured based on pandas symptoms) as well as elevated titers... my ENT originally described ds's tonsils as small and they looked ok to him... when he took them out he said they were a shrivelled up infected mess and that in fact many small tonsils are really just that...That alone made me happy with my decision...whether or not it has helped my son I have no idea.. he was mild before and is mild now. So while I am not suggesting it at all, I think that small tonsils that look good don't really mean anything.

Kiera, my ds's sound exactly like yours... the frequent more pronounced blinking and a throat clearing.

I would also say sometimes anesthesia has an affect. My son had a reaction to the anesthesia that lasted a week... although it wasn't pandas symptoms, at least not his pandas symptoms.... but he was not himself, was expressionless, no appetite (not because of his throat hurting), severe night terrors, and just sad... It lasted one week exactly... and then it was like a switch and he was fine.. it was very scary though to see him that way.

Like Vickie, both my children ate chicken nuggets for dinner the day of the surgery. The ENT told us the same thing as vickie's. They had an easy recovery as far as pain went. Night time was the one time that was bad.. they would wake up in the middle of the night in pain from their throats being dry. I know that for our ENT the intravenous antibiotics during were standard, not just for pandas patients. He had agreed to give me a week of an antibiotic pre-surgery for my pandas ds at my request. It is standard to have antibiotics after the surgery for several days. My pandas ds reacted to the anesthesia.. he had no pain issues but he had terrible night terrors and just wasn't himself (not pandas symptoms, just had no appetite, was just out of it and seemed sad)

If you have a medical reason they have a separate entrance... it is where wheelchairs would access it as well. It is different from the fast pass... you don't have to go to certain rides at certain times... We don't need and could never justify it for the children but my dh happened to have broken his ankle shortly before our trip and was in a walking boot.. We didn't even think to get a pass but someone who works there actually stopped us while we were waiting on line and told us to go to guest services and get one.. We didn't wait more than 5 minutes for anything but we went in March at a time that was not very croweded to begin with... I felt a little guilty about it but they are the ones who sent us to get it. I can't even imagine the next time we go having to wait on lines because my kids got spoiled not waiting... I might have to break dh's foot first OOPS... I just realized this was a bumped post.. and that you have already probably gone

I'm not sure what you mean by nobody benefits in the long run from the tonsillectomy but we had constant strep in my house until last year when I had my 2 kids who kept getting it's tonsils out... it's been a year and we have not had any strep in the house since.

I would guess that there are many people being treated for lyme that don't actually have it... but I guess in the end it doesn't matter if the treatment helps whatever the symptoms are...I think that some people have clear cut lyme but that those that it's not so clear cut... maybe it's just that the antibiotic cocktail being used to treat the "lyme" happens to work for whatever the cause is which makes it appear to be lyme.

Honestly, that is insane. I know the argument is you are paying for that dr's time but really unless it warrents a full consult and not just a 10 minute followup call I would not even think about paying that. I would insist on a copy of the results and take it elsewhere. I don't know why just because these doctors are considered almighty pandas experts (assuming that I am correct in that you are seeing one of them) that they should get to do this. I have had bloodwork done before on myself or my children not pandas related and then called the dr. for the results... They don't charge for the results or run it through insurance and I don't get why this would be any different. I can understand if they call with the results and keep it brief and then say you need to make an appointment for farther consult but to get test results and their basic opinion of the results.. it's insane to expect $500.00.

First ped I asked about PANDAS too... "If you are wearing a red shirt and you fall out of a tree and break your arm.. it doesn't mean you broke your arm because you were wearing a red shirt" He then told me to try tough love.

It could be the anesthesia too... I know that my ds (mild pandas) who does not have any eating issues had a bad reaction and was just out of it, wouldn't eat lethargic, night terrors and the not eating had nothing to do with his throat hurting from the surgery.. but was from the anesthesia. They said it could take several weeks before he was himself again but fortunately exactly one week after the night terrors stopped and he was eating and just himself again.

My ds doesn't... but I have been diagnosed with both arthritis and mitro valve.. mitro valve has never been an issue besides antibiotics before surgery for me... I don't have pandas though.. but found it interesting that I have both things you mentioned...

Never had to discuss any of this with my son's school. They describe him as extremely bright and just a good good boy... I never mentioned pandas but have asked if they ever noticed his subtle tics... only last years teacher knew the eye blink I was talking about. None have noticed the throat clearing. His worst pandas time was when he was in 1st grade, he's now in 3rd and his first grade teacher never saw any concerns about him... They attributed any quirks he had to him just being a bright kid. What I had at home was a child who wouldn't sleep, who was having irrational meltdowns.... Totally different from the kid they saw at school.

When my son had his tonsils out he had a bad reaction to the anesthesia... Coming out of the anesthesia he was shaking and almost appeared seizure like... it scared the heck out of me because my daughter had hers out a few months prior to him and had no reaction at all. That was just when he was first coming out of it and the dr. said it was normal. Then he had a bad reaction for a week from it... was completely just out of it, no personality, no appetitie..not acting bad or anything, just looked drugged (and he wasn't on pain killers) and too mellow. He also had severe night terrors that he had never had before.. it lasted a week. The doctors said it was his reaction to the anesthesia and it could have lasted many weeks... thank goodness literally after one week he suddenly was fine.

The dr. told me to give my son 25mg of 5htp... when I told him I couldn't find that dose in the store he told me to go the 50, that I would end up there anyway... but my son was 6 at the time and small.... I noticed a difference several days into it with just one 50mg at bedtime although we don't use it anymore.

Ok, so this changes things a lot doesn't it? My son's camk was 141 which was done a little over a year ago. Dr. C. noted that this was in the mid pandas range... but now this would be considered low pandas range? My son whom I consider to be mild compared to what I read here did not have strep throat at the time of the blood draw but possibly prior to it. I guess more telling would be that all the antineural tests were elevated?

He could see strep just by looking up her nose?

If you think your child's frequent urination was a symptom of lyme, what is the explanation for if it comes and goes? Why would it stop without treatment and get better sometimes? OR did your child's not stop until he had treatment?

This really almost gave me a little bit of peace. While I understand what people are saying as to who are we to say that 90% is ok instead of 100% but when I look at my son who is affected mildly as of now, it does not impact school, social or family and I have decided that 90% is just fine for my son. I don't really think any of us are 100% There will always be something. We all have issues but if it's not impacting the quality of our life.... and I know you might say who am I to judge if it is impacting my son but at the same time who am I to say it is. He seems happy, has friends, is succeeding in school. He doesn't even know he has an eye blink tic. The throat clearing he does very seldemly doesn't bother him and he doesn't attribute his moods to being a problem... and while I feel confident that when he gets a bit irrational on things that it is pandas coming into play (I can tell the regular 8 year old nonsense versus not with him) I don't feel it warrants other treatment at the moment that might or might not alter his system in a way that might or might not make him better or worse. We have our moments with him and we had a very rough patch at one point several years ago but still nothing compared to some what so many others have gone through.... he was on antibiotics which he has now no longer been on for almost a year. I think that everyone handles different things differently... One child might not be bothered at all by a tic and another child might be devastated by a tic. I suspect that when Dr. K asks if it's interfering in those 3 categories that he is asking for how it is affecting that specific child in those 3 areas... some might need to go farther in treatment and others might not even with the same symptom. I am confused... There are more than 2 people on the boards who have seen Dr. K who now say they have lyme.. and some I believe who spoke with him after the lyme diagnosis... Something is being missed along the way.. either he is questioning some of those lyme diagnosis to not be accurate or people aren't going back and letting him know after they get it? this statement kinda concerns me....as we are the cusp of all this learning... and who is to deem what is acceptable for the childs future life other than 100% recovery.... that someone may say you are 90% and that is good enough.....i have a hard time with anyone making that decision for another human being... i am not saying that that was what exactly intended by the statement...but as i've said before...who can say that person who has tics can drive a car they are functioning...but they have continuous facial tics...that is ok...what kind of job can they expect..as humans are judgemental by nature...who is to say what a person can live with that and not feel bad about themselvs, when they know that maybe if they had the opportunity to try ivig or pex that they might have FULL recovery..... yet..lets go to a topic that was a little touchy... a woman has a mastecomy and gets recontructive surgery that is seen by no one but her and who she chooses.... sorry ....just being a little defensive!!!!!

I think if my son had a severe sudden onset I would not be against him reading it.. or me reading it with him. My son's pandas is more subtle and he would not see similarities between himself and Sammy.

UGH Tantrums. I am frustrated for you! I don't know on the olive leaf extract but when I read people mentioning it I assumed it was something from the health food/vitamin type store..

Tantrums, do you still do the gluten free diet with him? Did you notice any changes with it?

Tantrums... that's exactly something I would see with my son. And when it's over... it's as if nothing even happened... A lot of times my son will just keep screaming the same thing over and over.. he knows the answer.. but then it will be "Mommy, come here" or "Mommy I need you" and then if I do go, he will just start right over again with what it is that he can't do or have that set him off in the first place.....if I don't go he keeps calling for me, and if I do go it makes it worse.. kinda makes me damned if I do, damned if I don't. With my son if he had a meltdown over the juicebox his responses get ridiculous.. he would say things like "If you don't let me have another juicebox than I will never be able to drink again"...he did this once over wanting a chocolate pudding for breakfast.. something he never would even think of asking for but one weird day he did, I said no and he went into full meltdown that if he didn't have chocolate pudding for breakfast than he would never be able to eat again... but then it ends as quickly as it starts. He has no eating issues so he always just is saying those things, he doesn't not eat or drink after it. I find lately this has been random...not something that I can pinpoint to an illness because it can happen one day one time or one day all day and then not for a week.

Aww Tantrums... I know what you are talking about My son doesn't have rages.... but has meltdowns that sound like what you describe... I usually find if I leave him alone (because he's not destructive and doesn't hurt himself or anyone else) that he gets himself back together quicker. If I go in and try to talk to him it only starts it more. He now usually goes up screaming some rant about some irrational injustice and then goes under his covers... and comes back out when he's ready.. sometimes quicker than others.. Hang in there.

Thanks for all your input! Should an immunologist be able to look at my son's antineurol (or whatever they are called) results from the cunningham test and mazke sense out of it? If I make an appt and they ask why I am, what is my reason? Just having concerns about his immune system? He is not a kid who gets sick often (unless we count pandas)... I am not looking for ivig. I guess if an immunologist told me that for some other reason he needed it than I would obviously have to stop and think but I am not looking for it strictly on a pandas diagnosis. My son is very mild but yup, something is still not quite right. Also, should the antineurals catch the attention of the regular ped regardless of pandas or not? I can't even remember if I ever shared it with my ped. My ped is sympathetic to the pandas stuff, believes in it, says he knows strep can do some wonky things to a person, was happy to help me with doing the cunningham draw last year BUT he doesn't treat it..he feels it is out of his realm and I respect him for acknowledging that. I am too frustrated at the prospect of a neurologist again...I can not travel to see one.. have a great one local to me who confirmed pandas but for various reasons don't feel he is still an option for me. Guess I am just not sure what I should be pushing and not pushing.. I am soooo grateful my son is mild but because of that it makes deciding what to do a bit of a challenge..

The immunology post got me thinking.. should I be taking my son to an immunlogist? Is that something that you think should be automatically done with a pandas kid?