ajcire

I just had my ds's bloodwork done today... this is by far not the worst he has been in symptoms but just took me a month to get the dr. appt where it was prescribed to have the bloodwork done. Does it matter? Meaning, if this is pandas will the bloodwork still show high levels of strep if he is having only mild symptoms (still refusing to sleep alone, throat clearing) His last positive throat culture for strep was in june... but the sleep issues started the very beginning of sept.... 2 days after his sister tested positive for strep.

I had my appt today regarding my ds and trying to figure out if this is indeed pandas... The dr. ordered lab work which I went and had done right after. He said he suspects that the tests will show that strep is the cause here. He said we would talk more after the results were in, that he would call me but that if it is he will likely recommend 3 months of zithromax (I think he said a few weeks of it for 3 months or something like that) as well as a probiotic and he mentioned a few other things.. one being seletonin. Does this sound like an ok plan to those of you are have been there and done that? Is zithromax the right choice of an antibiotic? This dr. said he has seen a big increase of children with these problems in the last few years. He treats many kids with it which did make me feel some relief.

Wow Dedee, that is definitely interesting! Yes, his teacher told me that they were doing something and she said she wouldn't remember who had a turn and he raised his hand and said, "it's ok, I will" She said that when the class was getting to a warning on noise level she told them they were at yellow and he piped out with, "and if it gets to red that means..." I was concerned that this will be a big turn off to other children but she said so far the other children have not picked up on it too much. She said she tries to gently remind him whose in charge and that if she needs help she will ask him. I really like his teacher and she seems to understand ds. She agreed it was like a compulsion that he just had to do more than him misbehaving. In those ways he has always been on the mature end and loves adult attention, always wants to help... He didn't like soccer but I think it's because he was not very good at it. He is at karate right now with my dh.. of course he is only a yellow belt as he just started not that long ago. I think my ds is going to have problems when he does have group work too. His kindergarten teacher last year told me that there was one other boy who was very good with the math and when she asked a question geared for my ds and this boy they would race to raise their hands to answer... she always asked them how they got their answer. My ds has an interesting way of doing math and when this child would say how he did it my ds would insist it was not right even though they got the same answer. We are always trying to get him to understand that more than one person can be right... but he believes there is only one right way and it is his! I imagine that won't go over too well in group activities. I wonder if these are traits of bright kids or traits of pandas kids or sorta both.

Thanks Dedee, I had parent teacher conferences yesterday with my ds's teacher and she was shocked that I had any issues with him at home. She said she noticed he uses the bathroom a lot and that she has to remind him that he is not in charge in the classroom but other than that things were fine.. she said he will tell her if she is not doing the exact schedule or if someone breaks a rule and those are the things she just reminds him not to do. He must concentrate so hard to keep it all together at school... he does throat clearing but not at school too.

The sleep issues started 2 days after my daughter was diagnosed with strep. My ds never tested positive for it at that time though. I had him cultured. I understand that doesn't mean much though. He did have strep a lot this past year and it was the first year we had strep that I was aware of in our house. He gets fixated on ideas but seems to manage to hold it together more than some describe. He gets ideas in his head and it's near impossible to get him off it... like if he wants one thing to eat he will say he won't eat anything if he can't have that... or if he doesn't get to do something he will be VERY dramatic about it. I also noticed a huge increase in a whining almost a moaning about things when I say no.. he keeps going and going and going about it. I didn't know if it was just him being 6 or if it was related.

My ds has sooo many of the symptoms from sudden things like refusing to sleep alone, throat clearing, some eye blinking, frequent urination (although he seems to be actually going, not just the urge to go), he is definitely a bit ocd about washing his hands, pays way to close attention to time, always lets you know if you are off schedule, and these all got a bit more after exposure to strep (he didn't test positive) but my dd had it and he had it several times last year. That said, he has been a bit quick to react to things that shouldn't set him off so but it is nothing like what I have been reading about... his teacher sees absolutely none of it and most of it revolved around when we were trying to get him to sleep alone (I don't push it anymore realizing now that he can't seem to help it so I stay with him till he falls asleep)... that did send him into a scary rage when we wouldn't go into his room at night. So while he is a bit quick to whine and huff about things it is not significant compared to what others describe. Do all pandas children have a scary rage? I am still trying to decide if his symptoms are not severe enough for this to be that.

He didn't scratch a lot during this class yesterday... I don't know if he was trying not to since I had just mentioned it to him or if he just didn't need to. I thought about the possibility of them using something that was causing an allergic reaction but I just thought it seemed really unlikely as he has never had any issues with anything before.

I am in the process of trying to figure out if my 6 year old ds has pandas based on a sudden severe anxiety over sleeping alone at night that started 2 days after my dd was diagnosed with strep (he tested neg) and a past year that was full of strep in the house. Nobody that I know of has had it now since my dd had it at the end of the summer when the sleep issue started, throat clearing, eye blinking, quick temper over things that should not be setting him off so quick. He takes Karate and I noticed that he has been scratching like crazy when there.. I mean, all over his body as if he as itches everywhere. We are headed there in a little bit and he has been in his karate clothes all morning now... has not scratched once. Is it possible that he is just doing it at one place and that he is not really itchy? Could it be more like a tic or ocd (he has definite mild ocd behaviors) type thing? I asked him at karate if he was itchy and he said no. If I mention this to anyone here they will tell me I am just looking for things...which goodness, I am so NOT looking for things. I will be seeing a dr. on Friday for a consult who hopefully will shed some insight on if my ds might have pandas.

It is so hard isn't it! I am in the process of trying to determine if my 6 year old ds has pandas. In hindsight he had the throat clearing and eye blinking when he was younger and the dr's just said it was a common childhood tic.. no worries.. and sure enough they went away... Fast forward a few years until now this past august.. ds just randomly out of the blew freaked out about being left alone at bedtime. 2 months later he is still having issues with needing us to sit outside the door and to constantly check on him. When we thought it was just a behavior issue and tried to not stay with him at the start of all this he went crazy in a way I never saw him. He was always so mellow. Then I came got online and saw about pandas and it all clicked. We had strep in our house for the first time this past year... all of us had it, ds had it 2 times and wouldn't you know it... the sleep issue in August happened 2 days after my daughter was diagnosed with strep. I had my ds checked and he did not test positive for it. I kept reading and saw that often these children are bright, good at math and I started to really get worried as this described my ds who was a fluent reader by 4 and equally ahead in math... Then I noticed him using the bathroom a lot when home as well as 2 times at night. I then remembered he went through a time of hoarding garbage a few years ago that started suddenly and stopped just as suddenly... then I realized he is a bit compulsive on handwashing... not enough to effect his life but enough that I turned to my dh one day and said, "Goodness... he sure is compulsive about handwashing!"... By now I was on the computer researching like a madwoman. My dr... .one told me I was crazy and the other gave me the name of another dr. to see who I will be seeing in 2 weeks thank goodness! I like you am thinking he isn't as severe as so many of the children being described are but am terrified that this could just be the beginning of something. The thing striking me the most about what you said, probably because it is the thing that made me first start researching this is the sudden issues with being left alone.

Thanks, I will tuck that bit of info away as it's really only an hour from me if necessary.

What part of NJ is Dr. Trifiletti located?

I did the same thing... My ds got the first shot and they said they were out of it when it was time for the second and I confess I never called back again as I had changed my mind. I know they will try to talk me into it this year but now I am totally confused as to what to do. I am afraid to put anything in him at all in the way of vaccines now but at the same time want him to not get any sicknesses... This gives some pub med studies that help explain what they found when dosing with different strains. http://www.ncbi.nlm.nih.gov/sites/entrez?c...t_uids=16950948

Ok, so I am noticing some similar personality traits among some of our children. I noticed a lot of people describe their child as more mature, bit more serious, very bright... So now I am feeling a bit sad thinking, is this NOT really my son but more a result of whatever is going on medically. Is it that these children are more prone to it or are these personality traits the result of it? My son was however the way I described from what seemed to be from birth... So which came first, the illness or my son's personality ?

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed) - In hindsight I first took my ds to the dr. about constant eye blinking at the age of 2. I have not yet gotten a diagnosis yet of pandas but do believe that it is and am in process of getting it figured out. 2. At what age did your child begin to speak?- He signed practically in sentences by 11 months but he didn't really begin to speak until almost 2.. had a few words from 18 months until then. 3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? - He started drawing faces by 2. He was obsessive about wanting us to draw them when he was around 18 months. 4. Has your child had food allergies? To what? not that we know of 5. Does your child have changes in bowel function during a PANDAS exacerbation? No bowel issues... seems to have more frequent urination though. 6. Does your child have joint hypermobility, i.e. can he/she touch his/her thumb to the inside of his/her wrist (ok to pull on it to check, but not to the point of pain)? No 7. Do you have joint hypermobility? No 8. Are there any mental illnesses in family members (not necessarily immediate family)? What are they? Mother's side, or father's? None that I know of 9. Are there any autoimmune diseases in either the child or family members? (e.g. asthma, rhematoid arthritis, thyroiditis, eczema, psoriasis, ulcerative colitis, lupus, etc.) No 10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack? No 11a. Does your child have panic attacks? No 11b. Is your child, or has he/she been, very separation anxious? Yes at bedtime 12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? I don't know what this means so I will have to say no as he has not had any reactions to meds. 13. Does anyone in your family have mitral valve prolapse? Yes, I do. 14. Does your child have any particularly striking "gifts", talent-wise? He is extremely bright, has an incredible memory, excells in reading and math. 15. How would you describe your child's "regular" personality? He is on the more serious side, has always come off as mature. He is a rule follower and likes routine. He is quick to point out if someone is not following the rules or if you are not on schedule. He pays a lot of attention to time. I don't even know now what is regular personality and what is not him.

Thanks... glad I wasn't sounding crazy! I had not even thought about that they touch the brush to the toothbrush when they do their toothpaste!

I would love to know what dr. in NY or NJ you are seeing as I am in process of trying to determine if this is what my ds is suffering from. I have an appt with a ped. in oradell... my ped referred me there based just on him having another patient use him. My own dr's office said it was beyond them... and actually out of all the dr's in the practice I go to, only 1 believes in it and he is the one who referred me.

How often do you change your child's toothbrush? I am in process of trying to figure out if my ds has pandas and at the same time I got to thinking about ways to keep strep and other viruses away.... I was thinking that I needed to change his toothbrush and then got to wondering if I should be changing it way more often than I do. Probably a dumb question but figured I would see if anyone else had thought about this as a way that their child could be holding on to things...