reactive

This winter, a really good friend of mine told me a story about her dd. The family was getting ready for church. Their dd did not want to wear a coat, even though it was freezing outside. She did not think the coat would look right. They needed to leave. They told her to get the coat on. It turned into a fight, and their dd had a meltdown (she is 12), ran upstairs and screamed at all of them "you are ruining my life!' This daughter of theirs has no issues with OCD at all. They were very late to church, of course. But two issues come to mind: kids like ours with issues can have a harder time than their peers without issues, and second, some issues can be normal behavior and it can be hard to tell what really is OCD or just being normal...I mean, it does sound like your dd was having an OCD moment, but it also sounds like it was started by normal girl stuff...wanting to look good and getting upset and moody Can I just say, I am glad I have two boys!!! I am sure I will feel different when they want to start driving....

[/quote ] Wanted to add, may not be related, but my son could not walk either and had joint pain at his worst at age four. Since his strep was negative, I never knew why the joint pain. I keep going back and forth from he had strep and we missed it on the test to maybe it was viral. Just thought it would be good to say this in case others have a hard time tracking down the strep sometimes...as Johnsmom has such clear evidence of strep here...I feel like some others have a harder time making the link with every flare of symptoms. Johnsmom...glad you are seeing Dr. K. This case seems so clear cut to me, although I am the farthest thing from an expert...

Hi there. Just wanted to say that although my son's ASO titers were only elevated a few times, and never had an elevated antiDNase B titer, my son's history is very similar to yours. Sensory integration issues young. Our ped thought he had autism at age 3, but we took him to a developmental ped and they said no, not PDD. Looks like autism, aspergers, but isn't. I've had him to developmental 3 times. But he does have that quirkyness. And there was always that SOMETHING you could not put your finger on. He talked late too. We did speech at age 3. Of course, if you can pull up any if my other posts you will see he had an exposion around age four that took many months to resolve. PANDAS was mentioned but at that PARTICULAR incident the strep was negative. My son also seems now to react to some viruses. He reacted to H1N1 this past fall. At age 6 he required tonsillectomy after approx 9 strep tonsillitis infections in a row. He did seem to improve some after that surgery. I never made this link before, but my son did have very severe bouts of a weird diaper rash at age 2. I kind of dealt with it at home, but it was so severe that cream would not stay on...I had to use a medicated powder. I thought it was due to eating things like noodles that had egg when I did not realize egg was in it as he had an egg allergy. Now I wonder if it could have been strep. I have my son's old records from the ped office from birth to current. One thing I do notice is that if he was ever sick, which was a lot, they never checked him for strep until he was older. I know kids under one generally don' get strep, but he was never checked at age 2 and maybe once or so at age 3. So, I do think PANDAS could be missed...at least in out case we did not even check him for strep until age 3. He may have had it before.

I am far away and cannot see this child but I am still worried about his head!!!!

I am so glad he can leave the hospital. I know you are relieved. But, per the threads above the hospital dropped the ball on this one...my opinion.

I have to say, colleenrn is correct. You are your son's advocate, not the doctors or nurses. I would also be concerned about a head injury. You also do not have to leave until you are satisified. If they try to make you leave by threatening security on you to escort you out, then you need legal action asap. Just always try to appear as calm as you can, even if you are freaking out inside. Go up the chain of command. Every hospital has a chain of command. If the regular psychiatrist does not help, go above him to the the department chair or chief. They have already screwed up by leaving him in there to bang his head like that, and that needs addressed. ASAP.

Sorry in advance as there is no short way to answer. When my ds9 was at his 3 year checkup on peds office, our ped was concered he had autism as he was not answering her or paying attention to her. I was totally freaked out. We were referred to the developmental ped. The ped saw no signs of autism, felt he was fine, and ordered the speech and hearing eval. The hearing was normal but he was diagnosed with a mild to moderate RECEPTIVE (not expressive) speech delay. He did two months of therapy and they basically told us to stop coming they were just taking our money. I left it at that. Fast forward to age four and severe flare of possible PANDAS. We were back again at developmental ped, same guy (really nice) who says to me "autism does not appear overnight" That was good insight on his part, I guess. I asked him about Aspergers, he said that ds was a little overly intellectual, but we will wait and see. He reassures us again. Over the last few years since then, we have dealt with the possible PANDAS in our ds the best way we know how. He thrived and did well in Kindergarten, reading well above average. In first grade, he also read above average and did well. Model student. In second grade his reading fell to average. I was concered, but thought maybe he just had a summer loss. Now that ds is in third grade I am seeing more issues. We ended up at speech again this year because I got his IOWA scores back from the test he took at the end of his second grade year. He was below for reading. His score for the "listening" component of reading was only a 4 out of 100!!! This is the part of the test the kid has to hear a story read by the proctor and answer questions about it. Yes, the speech therapist at our school did assess him and found no deficits. But she also wanted him to have a full eval due to the prior diagnosis of receptive delay at age 3. The speech lady at the hospital recommende the therapy, as I mentioned. Before setting it up, she wanted me to have him eval again for Aspergers by developmental. So again we are back to see the developmental ped, and he again says no, ds is fine, no Aspergers. He is a really nice doc, very calm and realistic. He told me since he had all A's and B's on the report card not to worry about it. He looked at his handwriting and said, have him learn to type this summer. Made sense to me. Now I realize it is more than just a speech thing. I got his scores from his state reading assesment test and he failed for 3rd grade reading. This is a kid who got a B in reading both times this year so far. He got a B in math the first time and a C the second report card...he is not picking up on the new math concepts. He got A's in all his other subjects. We have a website, study island where you can give the kids a practice test that mocks their state tests. I had him do 2 10 question reading tests this weekend and he got 6 out of 10 right. I had him do 2 10 question math tests and he got 2 out of 10 right on each of those. I am basically watching my son's reading and math skills slip away before my very eyes. That is why I am on this forum.

Hi there... I'm not sure this helps at all in your situation. But, I work as an NP in OBGYN. In our patients (who are teens or adults, the youngest pt I had was a pregnant 11 year old) we do a lot of urine cultures. Not sure how this works in a 11 month old, but a definition of a positive urine culture for infection for us is at least 100,000 colonies. We usually do not treat for less than that unless there is some clinical suspicion for UTI or if pt is pregnant. In our pregnant patients we treat for at least 50,000 colonies. There is another, earlier thread on here about group B strep. I replied to some of those comments. I would assume that group B strep can be harbored in the area of the rectum, vagina ect of kids as it can be in adults. With the low count of 25,000 I find it hard to believe that could haved caused a high fever (disclaimer: I do not work in pediatrics so I could be wrong). We see GBS all the time in urine cultures, if it is >100,000 I treat, if lower I ignore it unless the pt is pregnant and even then I do not treat the pregnant pt unless it is in the UTI range...I just note it for when she is in labor. It would be hard to determine back or flank pain, or pain with urination in an 11 month old. But, if he had an untreated UTI that was causing a high fever, (aka probable kidney infection), you would have known then is my guess. So, I'm not surprised your doc didn;t do anything about it. Sorry...just wanted to add...I've never seen a + throat culture on my kids for group B strep; I don't know much about that. Now I want to look it up.

Hi there... I'm not sure this helps at all in your situation. But, I work as an NP in OBGYN. In our patients (who are teens or adults, the youngest pt I had was a pregnant 11 year old) we do a lot of urine cultures. Not sure how this works in a 11 month old, but a definition of a positive urine culture for infection for us is at least 100,000 colonies. We usually do not treat for less than that unless there is some clinical suspicion for UTI or if pt is pregnant. In our pregnant patients we treat for at least 50,000 colonies. There is another, earlier thread on here about group B strep. I replied to some of those comments. I would assume that group B strep can be harbored in the area of the rectum, vagina ect of kids as it can be in adults. With the low count of 25,000 I find it hard to believe that could haved caused a high fever (disclaimer: I do not work in pediatrics so I could be wrong). We see GBS all the time in urine cultures, if it is >100,000 I treat, if lower I ignore it unless the pt is pregnant and even then I do not treat the pregnant pt unless it is in the UTI range...I just note it for when she is in labor. It would be hard to determine back or flank pain, or pain with urination in an 11 month old. But, if he had an untreated UTI that was causing a high fever, (aka probable kidney infection), you would have known then is my guess. So, I'm not surprised your doc didn;t do anything about it.

thanks for posting that Vickie yes, our developmental pediatrician payments were more in that area and yes, county health departments are the way to go when income is low and no other financial resources some states also have special healthcare plans for lower income families who are above the medicaid threashold. here in Florida it is called KidCare and parents pay on a sliding scale based on income unfortunately, many people dont even know about it and not all doctors take it I have pretty good insurance, but we get denied for anything that smells of "developmental delay" and have to pay ourselves. My son has had to see our PCP four times, an allergist, and neurologist since New Years. Just yesterday he had to have a visit with the ENT. Before X mas he saw developmetal peds and had a speech eval. Breakdown for visits in last 2 months alone: PCP visits $150 each X4 so $600 Allergist : $300 Neurologist: $377 (he spent 20 min with us and gave us a rx for risperdal that was not needed or wanted) Speech eval: $648 Developmental ped $171 ENT visit was yesterday, don't know the cost Also, allergist ordered many many blood tests and did back allergy testing, not sure yet of those costs Also, we did sinus Xray 2 weeks ago to confirm sinus problem that won't go away He is on round four of antibiotic currently He also has other prescriptions Since my insurance is pretty good, I have $15 copay to PCP and $25 to specialists. I don't have to pay for any tests. The developmental ped $171 was denied, but to me that was a good deal as he told me not to start weekly speech therapy on my ds that would have cost us $80 per week plus our time. Just giving an example how how things can quickly add up. Plus, my other nonpandas ds5 had to go to the ER last week; he had croup but began to have trouble breathing. We almost called 911 but got him to the ER, where he had a breathing treatment and Decadron. I'm sure that will be pretty expensive, but will gladly pay my $50 ER copay...the kid was in respiratory distress...hot steam and taking outside did not help... And...as I've mentioned before my ds9 who is probable PANDAS is mild compared to other stories I have seen. The hard part is, though, that until this all gets "hashed out" PANDAS or not, exists or not, people like me and people like many others with more severe kids just have to keep searching. I did not even set out on this PANDAS path again until this past December when I found pandasnetwork.org. This is where I learned so MANY of my sons issues could be PANDAS. Thanks for letting me vent a little...

I replied to faith's ENT post about this also. May not be related. My ds9 had his tonsillectomy in 2007. I was looking through old records, and my ds was seen in urgent care in 2008 for sore throat, high fever, ect with worsening symptoms. He was dx with pneumonia, and put on abx ( I forget which one). I asked the doc to do a throat culture due to increase sx of PANDAS and it was neg for strep but pos for the H flu no type specified as above.

Hi Faith: This may not be related to your tonsil issue, but per my ds9's old records, he was seen in urgent care in 2008 for pneumonia and was placed on antibiotics. The doc did a throat culure because I asked him to (I always do) and it was positve for h flu as above no type specified. He had already had a tonsillectomy about a year and a half before that happened.

Faith (and others): I have mentioned this before, and although I am not 100% sure we are PANDAS vs TS vs autoimmune (PITANDS or other), I have noticed that getting my son on antibiotics right away did not stop the PANDAS symptoms with strep any sooner. He has not had strep (documented) since late last summer. But, when + for strep he will have major increase in tics the day his strep starts with mild sore throat and low grad fever, I have rushed in only to have a neg strep test and have to go back the next day and he would be +. With my son it really is like the infection triggers the symptoms and then we have to wait for it to die down, no matter how soon we diagnose the strep. I have calmed down a bit...but any time he may have strep I tend to rush in. you bring up two really good points.

If you do buy any, I suggest the OSOM rapid strep A test by Genzyme. That is the brand my pediatrician and family doc use. I had 2 sample boxes of 5 each from a rep (they bring us OBGYN stuff). But I did look online and a box of 25 tests is $50-$70 or a box of 50 for about $90-$100. The instructions and Qtip things are in the test. It really is not hard to figure out. Most all of you have seen it done on your kids so many times!!

I replied on another recent post where this kind of came up too. The problem we have had recently is that there is a girl in my ds 3rd grade class who has had strep 3 times in the last 2 months. And, her tonsils are already out! I only know about this girl as her mom and I were helping plan the class Valentine party and she was telling me...she does not know about ds and possible PANDAS. Our school does not notify of strep in the class so I have no idea who else...but since Dec ds symptoms are way up...but I always do notice a trend from Dec to Mar each year... And I agree...3rd grade is a huge year...

Sometimes I feel drained from trying to find the strep. My ds9 used to have LOTS of strep. He doesn't get it as much the last three years after tonsillectomy. He did have the strep smell thing I wrote about in January, and it went away after omnicef, but the smell came back last week, so his doc gave him a z-pack and ordered a sinus x-ray. The x-ray was negative and the smell went away again. Curious to see if it will come back (the smell). I had a antiDNase B done on him few weeks ago preparing to see Dr.K as he said do one and it was negative. During this time his tics are worse. So, sometimes we get a lot of strep and sometimes we don't. We haven't had documented strep in several months. But my ds9 has a girl in his class who was + for strep 3 times in the last two months. Also, I would like to add, that in our case my ds symptoms will be triggered with strep or some but not all viruses. If strep triggers his symptoms, I do not notice that getting him on antibiotics right away decreases the symptoms. With my son it is like the strep "triggers" something and once it is triggered it has to take its course. We have not done long term antibiotics though.

I wonder if this study of his is the same one Buster told us about on an earlier post? If it is, Buster noted quite a few problems with Kurlan's study. It sounded like old news to me as I listened last night (yawn) but I could be wrong. It is not clear to me that any of his so called PANDAS kids had the severe, debilitating abrupt onset thing...

My DS9 had allergy testing on his back the other week and we was positive for some molds.

I am fairly new here but I'll take a stab at it...I read on this forum as well as other sources that the theory is that strep triggers something to cause inflammation of the basal ganglia of the brain...and the basal gangia is the part of the brain assoc. with movement, emotion, ect so that is why you get OCD and TIC symtpoms...

OK...I feel like I need to comment here and I do not want to offend ANYONE BUT... If there is no ICD9 code for PANDAS yet and therefore it is not a "real" and recognized clinical entity YET...and I know my ds9 is PANDAS (or PITANDS?) and I personally know it exists...however... I have a problem with a large setting such as this hospital (Mass Gen) and/or other organizations making a "foundation" for something that cannot be coded as a real diagnosis yet and the research is not all in...and collecting money for same...heck until January when I found this forum I had no idea of the complex workings of PANDAS (a la Buster). To me this is more than "strep-abnormal symptoms-get on daily antibiotics and you are cured.... Everyone is desperate and wants to get the word out...and per Diana P it sounds like there has been loads of progress...but to me this PANDAS foundation seems like the cart before the horse. MY OPINION only... My husband tells me I can get hot headed...sorry everyone...

Good luck next week and best wishes. Please let us know the results whether positive or negative for basal ganglia inflammation; this is interesting.

If your kid would not have been OK that hospital would have been HUGELY liable. If they could not have accomodated you, then they should have transferred you to another facility, even a teaching facility that could have. Water under the bridge now, I know, but what a close call. I just can't fathom something like that can happen in this day and age.

You are lucky to have an understanding day care. My ds9 was four when he had his worst flare. He had constant spitting. We had to keep him home for about six weeks, and when he did go back to day care, he was still spitting, so the day care just let him spit in the trash can; they kept it by him. I think all parents, including you in this case, need to weigh the pros and cons of being in day care or not. Not sure how old your ds is, but he could benefit a lot from being in this setting and the structure it provides. As hard as it is to get out the door, believe me I know, I am glad now I kept him in "school". I also have a very understanding boss; I am hardly ever on time to work.

Click on the tab "meet us" and then click on "task force members" Swedo's name is on the task force list.