ajcire

I am trying to figure out what cunningham's test is, what it will tell me and how I get it done... and of course how much it will cost. I know this sounds terrible but dh refused to go with me last year the one time I saw the dr. who does indeed believe in pandas and put him on the antibiotics. Unfortunately he was with me when my regular pediatrician (not anymore for ds) told me I was crazy and that it didn't exist. He was not with me when the other dr. in the practice told me I was not crazy but it was just out of his realm and referred me over to this dr. I saw. I know how it sounds... but it's not like that... for some reason this is just not clicking for him.

It is a good idea but unfortunately I don't think he is doubting that this exists but is doubting it is what is our ds's issue. It's because with our ds if you take the behaviors and concerns I have and isolate them, they can be seen as typical... but when I piece everything together I see the big picture. He thinks I am looking too much into it but to me it all seems so clear. My ds is 7 now. I can go back to when he was 2 and we brought him to the dr. for eye blinking... told it was common childhood tic.... same at age 4 when he was clearing his throat... that year was also the first year I had strep, dd had strep and ds had strep... it was also when he started hoarding garbage (wouldn't let us throw out wrappers, we found clothes tags hidden in his room)... seemed almost comical at the time.. and seemed to just pass on it's own in time. Handwashing.. went through handwashing that didn't affect his life but was noticeable to me that he was doing it way more often and adament about the need to if he washed before eating but then touched something before he actually ate he was off to wash again. That too seemed to go away. Then last year my dd had strep. 2 days before we knew it was strep my ds started to freak out at bedtime that we had to check on him. He wouldn't sleep without me sitting next to his bed. It was totally out of the blue. I then realized that he was constantly needing the bathroom too. Throat clearing picked up again. He was also having rages. He was just plain cruel to his sister and to me. He would be set off by anything and then it would just be over as if it never happened. I started researching at this point because the sleep issue was so causing major stress in our house. That was when I came across pandas and had a major AHA moment. It described my son. He is extremely bright, very good at math, looks for patterns in things, thrives on routine, perfectionist.. the only thing is he does have very good fine motor skills that were never an issue.. I see it is for many children. I always just described him as quirky. I know I am rambling.. just no longer knowing what to do with what seems so clear to me. I am going to talk to the dr. about getting him on antibiotics regardless of dh's thoughts but it would be so helpful if I could find a way to get him on board.

I am struggling here again with the battle of my dh not quite getting this whole thing. What tests would be the most concrete evidence if my ds is currently having some symptoms (symptoms that are just not clear cut to being this or him just being a kid... but as his mom... I know). Last time I had bloodwork done was last november and while I don't have the results my dr. at the time said that the strep things all came back within normal range... but he felt that based on symptoms and the timing of it all (there was strep in the house) that the bloodwork didn't prove it wasn't this... he had put him on 3 months of antibiotics. I noticed a difference as well as my parents who spend a lot of time with him. My dh... he won't admit it but at the time, he noticed it too. I want him back on antibiotics now. Dh needs something concrete to convince him. I so wish there was a test like a pregnancy test... positive or negative and no guess work. It's mild in ds but enough that it is making me crazy and likely he isn't feeling so good about it either even though he isn't expressing it. It's not affecting school. I know I need to go get him a rapid strep test and culture to rule out that he has it at the moment. School just started 2 weeks ago. This was the same time we had problems last year. I do not believe it has anything to do with school other than what he is being exposed to. His teachers indicate no problems at all. Besides for behaviorial at home, he has started throat clearing as well... but not at school.

Thank you both for your reply. I think my concern is that this is just not clear cut enough for me. I know this sounds absolutely crazy but I almost wish some of his stronger symptoms came back so that I could confirm that this is that. I have only met with this pediatrician that I was referred to 1 time and spoken to him a few on the phone. I was so relieved when I met with him that he didn't call me crazy that I burst into tears in his office just because he believed me that something was not right with my son. I know I should call him back but it's very hard I feel like things are just at a standstill...no major things going on.. just my mommy gut telling me that he is not himself again. I have been to this forum before and asked questions at the time he was on the zithromax and I understood from that that most people felt my dr had him on way too low a dose. He was on 250mg 2 times a week for 3 months. He is about to turn 7... not sure of his exact weight but I would say at the time he was probably 45 lbs.. I don't know what was the 5htp and what was the antibiotics because for some reason my dr had me do both starting at the same time but his sleep anxiety got much better...now he can just tell me if he is feeling scared that he needs me to check on him an extra time and that is only every now and then. His throat clearing had stopped, his general mood was better, calmer.. he wasn't irrational like he gets sometimes, he wasn't over reacting to things. He was not so unkind to his sister and me. I took a big brunt of it but he has gotten much better with me.. his younger sister still takes a lot. He is very kind and good to his little brother. He is not having extreme outbursts or anything... just something about his shortness, his tone, his mood. I had asked the dr. if it was bad if I didn't treat it when I was in debate over the long term antibiotics. He had said that if it was minor, not affecting his daily living.. that it was ok.. but I can see that might not be accurate. He told me though that he felt that the treatment of the 3 months for my son was better than not treating him. He felt that if we could just give his immune system a chance to catch up being that he was constantly being exposed to strep that maybe it would just work itself out after the antibiotics. My dh is a great guy but yes, this has been a huge problem at our house... he doesn't see what I am seeing.

My son is about to turn 7. A year ago was when I first started to suspect pandas (because I hadn't heard of it until then) Quick history: Age 2 - an eye blink type tic that the dr. said was just a common childhood tic, no worries... said it would likely come and go and it did. Age 4 - the eye blink still sometimes, a throat clearing that the dr. once again was not concerned about.. said to ignore it, handwashing... not obsessive where it took over but noticeable to me that he was washing his hands a lot more than necessary, hoarding of garbage... this lasted about a month and I confess that mostly we chuckled at it.. I kept finding things I threw out (like clothing tags and wrappers bunched up in his room. He would get panicked if I tried to throw them out again. He also stood out very early on as very bright, extremely early reader, very mathematical... he was always inquiring about time, very aware of routines... patterns... as a special ed teacher I paid close attention to some of this but was reassured by several professionals that he was just a bright child with some quirks. I definitely call him quirky. It is definitely not aspergers. Just about a year ago he started freaking out at bedtime... he was terrified and he needed someone to sit with him until he fell asleep.. if we didn't he would turn into a child I had never seen before... crazy outbursts. I mean bedtime was pure chaos and it came right out of the blue... but 1 day after it started my daughter was diagnosed with strep throat.... at the moment I thought nothing of it. He also had a short short fuse over nonsense stuff and then would be fine in the blink of an eye as if nothing had happened. He also had been using the bathroom a lot. When I asked his teacher (it was the beginning of the school year when this was at it's worst) if she noticed anything noteworthy about his behavior she said nothing at all.. just that he used the bathroom often.. He didn't appear tired but was not sleeping more than 4-5 hours a night because he would wake up constantly needing someone there. I started researching at that point... googled something about sudden fear of sleeping alone and up popped pandas. I had such a light bulb moment while I was reading.. Went in armed with my new knowledge to my pediatrician who informed me that I was crazy... I then asked another ped in the practice who told me I was not crazy but it was out of his realm. He found me the name of a dr. that he had referred another patient to for the same thing... another pediatrician who he felt could help. I finally got in to see him in November but the major issues had subsided at this point. Bloodwork did not make him think it was pandas and he suggested trying 5htp for my son. A while after seeing him though my son started with the sleep again and just seemed so angry..... turned out that my daughter had strep again. My son tested positive too but with no symptoms. The dr. put him on 3 months of zithromax and said that he did believe it was pandas and that the bloodwork really didn't mean as much as what I was telling him. This brought us into the month of March. Also by time the bloodwork was done his symptoms had already calmed down.. not sure what would have happened if we had the bloodwork right away when we were in the mist of the crisis. So basically he hasn't been on anything since March.. during this whole time strep was rampant at his school. Every now and then he will simply tell me at bedtime that he is feeling scared and ask me to check on him but no major sleep set back but his attitude, anger toward his sister (just a meanness that I saw the most during his episode) is still back.. a quick temper with things... its all manageable but it's all things I saw go away while he was on the antibiotics. My mother had commented at how much more mellow he was during the treatment period. I hate having him on the antibiotics especially when people think I am crazy and tell me all kids can be mean to their sibling (I totally know this but it's different) and that it's just his personality... I dont even know if the dr. would recommend anything at this point but do you think it's dangerous to just leave him alone if it actually is pandas related? I guess my question is, if it's not definitely impacting his life is it dangerous to not treat it? I wish it was more clear cut if this is what it was for him because then my husband wouldn't think I was just crazy and I wouldn't feel like I am just crazy. It seems so mild and has not affected school. Socially he has some trouble but no idea if that is related to this or just who he is.

Yes, my ds completely controls it at school. Even when his throat clearing was at it's worst his teacher said she didn't notice it at school. If he was doing it at school like he was at home, she would have definitely noticed as it would have driven her insane! He also never had any behavior issues or rages at school... the only thing he does at school is tell her if she is not on schedule or doing things "right"... he thinks he knows everything.. not sure if that's the pandas or his personality though.

Peggy, that's a really good point about perhaps just the parents making it to him are the ones with the access to the research. It really makes sense. I really believe there are a lot more children out there with this than anyone knows. I have a feeling it's not nearly as rare as people think. Maybe some have more subtle symptoms, some are probably being written off as difficult children, and others as children with a tic disorder or just some ocd. I too like to think I am really intelligent but I don't know if we fit the phenotype. My dh does.. he is a CPA, very mathematical but so not into organization, being on a schedule or time, or things like that. I am a special ed teacher... math was actually always one of my weaker areas, English, written language is my strong point.

Thanks! I hope that your exposure to the strep doesn't turn into anything more. Last night he had no issues going to sleep, phew. I was kinda anticipating a long drawn out bedtime ritual. I hope you are right... I was worried that it was sorta all or nothing with this stuff... like if I started seeing signs that it meant it was here and in him and to just brace myself. My son is 6 and I just started having him keep a journal. I snuck a peek at it this morning and saw that yesterday he wrote, "I was not talking nice to my sister and got sent to my room". It broke my heart but was glad that he did know what he did... usually he gets defensive and he thinks he did nothing wrong. My mom and husband keep reminding me that he is still a 6 year old and some of the things he does is just what a 6 year old does but like you said, I know. I am his mother and I can see the difference between his normal 6 year old behaviors versus the other. I wish I could get my husband to get this. I think he sorta does because if he didn't believe it at all he would not have agreed to the antibiotics without a fight. It is so much easier to accept when you can physically see there is a problem. It doesn't help that the one dr. appt I chose to take him to was the one where my pediatrician told me I was crazy. My mom keeps asking me... if this is pandas... then what? Does it just go away eventually. I keep reading and reading and reading but I can't figure out the answer to that question. I feel almost guilty coming here with my frustrations when I see some of you having such bigger things going on. It's just hard because there is nobody in real life here who has a clue what I am talking about. Hi erica, Without a doubt YOU KNOW if there is a change in your child, like you said, a switch was pulled. Unfortunately we all too well know that feeling. I don't know if I can answer your questions as to what the best line of action is, but I will tell you what I would do... at least for a couple of days I would ride it out and see if it gets any worse or better. The reason I say that is because perhaps you will start to see other symptoms that might clue you in that it is possibly something other than strep (maybe viral?) causing the change. Also, sometimes I think that when that has happened to my dd, it seems like things might get a little better if she has a chance to get away from the offending carrier (for example if someone in class has strep, then gets treated)...she would sometimes not get worse. Does that make sense? Anyway, YES, from my experience, it is possible, that symptoms can come on from exposure alone....and I've heard from several docs that this is not uncommon in an autoimmune illness. I don't know if he can actually get strep with the antibiotics onboard, but I suspect it is possible too...although doubtful that it would show on culture. Have any doses been missed? I know also that others have had only short term improvements with the various antibiotics that have been tried and so go on to try something else. But I don't know that I'd jump to that just yet. The change was noticed yesterday? I'd vote to wait just a bit longer... If you can. For sure, start looking in siblings and your own throats and maybe think about getting the household strep cultured. I know what you mean about wanting to put them in a bubble. My child just started back to school recently and this has been my biggest fear. I've seen mild symptom relapse just since dd's going back to school and coming down with minor illnesses and this is AFTER IVIg and on prophylactic dose of Augmentin. In fact I could kick myself. Just this past weekend, I had a 'get away' to visit my sister and her children. My dd did not go. So, since I went to visit my sister, I have felt kind of crummy. I contacted her yesterday and asked if anyone was sick and wouldn't you know that 2 of them have strep. So, I was exposed all last weekend. I have felt rotten, but no fever, no sore throat, etc. My pandas dd, just tonight has huge pupils again and is acting a little 'off' (nothing like before) but boy does it have me in a twit about it all. So I am kind of in the same boat. I'm going to wait a few days and see what happens. Any other changes and I will be on the phone to her pediatrician and I will probably go in myself for a strep check tomorrow morning. Good luck to us all!

My ds has what I would call mild symptoms compared to many of the children I am reading about but that said, it's still a problem. He's been on zithromax 2 times a week for a month and a half now. He also takes 50 mg 5htp a day as well. He's been doing well. Other people have noticed the changes as well... he is not as jumpy, not as nasty, not as oppositional, just much more mellow about things, and the anxiety about sleeping alone stopped... his eye blinking and throat clearing a bit better as well. Yesterday it was like a switch was pulled on him. He had the same nasty tone he used to have with his sister, had a meltdown for me about something that should not have triggered one and at bedtime he started with wanting me to snuggle and reminding me over and over to check on him the way he used to. He also used to always say the opposite of what he knew I said.. if I told his sister not to do something, he told her to.. if I said to go upstairs, he said to go down. He used to do that all the time... then it stopped this past month... and as of yesterday it's back. I know for sure that children in his class just had strep, one girl who sits right at his table at school. I was cringing when I ran into her mother and she told me her daughter had been out sick with strep.. my husband told me to stop worrying because he's on the antibiotic (and because he thinks I am crazy anyway... and doesn't seem to think all the changes in our son are anything more than him being a kid... I think he does know but is in sorta denial about it) .... What do I do? Just ride it out? Unfortunately the dr. who put him on the zithromax is a dr. I only saw one time, and spoke to 2 times on the phone... Should I be on the phone with him or just waiting? Can he get strep and the dose of antibiotics not be enough to get rid of it or will he likely not have strep, just symptoms from exposure? My mom keeps telling me that there is nothing I can do short of putting him in a bubble. I am thinking about it!

pmorena, I don't know much about it but I do know that you shouldn't mix the 5htp with some medications. My ds is on the 5htp but is on nothing else other than zithromax.

I totally feel for you on the school situation although as a special ed teacher I can see the dilemna that the teacher is presented with. It's all so hard! With the zithromax... my ds is on 250mg 2 times a week for 3 months.. He is on his second month. He started 5htp at the same time. He is a different kid but the last few days the throat clearing started and some of his tone in how he talks, his quick reactions came back.. not terribly though... I found out yesterday that 2 kids were out from his class with strep. Is it possible that my ds can get strep and then this dose not be enough to stop it but now it makes it worse? I don't even know if what I am asking makes sense. it's making sense in my head. It's hard because I have my regular ped who I can get in touch with easy.. but my other dr. who I saw only once and talked with on the phone a few times. Someone mentioned the 5htp.. my mom keeps telling me she can't believe how mellow ds has gotten with things that used to set him off... I think it is the 5htp. She keep saying it's almost eerie how he responds calmer to things now. His sleep issue as disappeared although the 5htp does not make him drowsy at all as the dr said it might.

I wish all doctors were on board the same with this stuff. Diane, I know you have talked to me about the dose as well.. my ds is only on 250 twice a week. I don't think his dr. will go daily because our symptoms are really mild compared to what I read about. Something is different in him though.. but I started the antibiotics and 5htp at the same time. I believe it is the 5htp that is helping with his mood. He still clears his throat sometimes... his sleep has been MUCH better. He doesn't even always ask me to check on him.

Thanks! I am taking him to the regular ped at 11.. I normally wouldn't have rushed him in for this but I don't want to refill the medicine if I shouldn't be giving it to him. He's not really covered in it... it's more his neck, chest/belly and it's not patchy hives. My luck it will have disappeared by time I get to the dr. so that they think I am crazy. At least the appt is with the dr. who at least didn't laugh at me over the pandas.

My 6 year old ds has been on zithromax for almost a month now. He takes it 2 times a week. Yesterday before school I gave it to him. He came home with an itchy rash (not little bumps, just red patches). He woke up and says it's not itchy but he's covered even more. I will call my dr. but of course am torn on if I call my ped or the ped I saw for the pandas who put him on the antibiotic.. he is not as local.. way bigger pain to just pop in the car to see. Has anyone's child gotten a rash from the zithromax and if so does this mean I can't use it? I was so happy to have him on it.

Thanks, my ds won't swallow them so making up smaller ones won't help. I am using the 50 like the dr. said I could but just once a day at night. Honestly, I am not seeing anything and it most definitely is not making him drowsy like the dr. said it might.

Where did you find the 5htp in 25mg?

I don't know the answer to your other questions but my dr. just started my son on 5hpt. He is 6 years old. He had told me to use 25mg but I couldn't find it any smaller than 50mg. When I called to ask he told me to go to the 50 as he usually ends up upping it anyway. I have a feeling that the 50 is not doing much for my son right now but I am going to hold at it. He told me to give it to him one time a day before bedtime. He said to just keep an eye out for grogginess but my son is not affected at all. One reason I was putting him on it was to help with anxiety he has about going to bed. Some things imply I can be upping it safely a lot but others contradict it so I don't know what is safe. I do know that when my daughter has strep, the exposure to it affects my son. He gets strep but with no standard symptoms, just a positive culture.

So they simply outgrow it eventually?

Dedee, thank you for that. We have decided that the risk of not trying this is worse than the risk of him being on the antibiotics. Of course my mother asked me a question that I had no idea of the answer to... What happens after the 3 months on it.. then what.... do I just pray he doesn't get near any strep or we start from scratch or is it possible it will no longer be an issue.

Thank you for your quick reply!! Right now my ds is not on any of those medications so I feel better

My ds has possible pandas and his dr. recommended 5hpt. He said it was safe. He is on no other medications except antibiotics for a current strep infection and then will be on a few months of zithromax antibiotic. I see you say there could be dangerous side effects... that made me nervous as I started it last night. What kind of side effects? The dr. told me to just watch for too much sleepiness but I only give it to him once before bed. He said that other than that to not worry about it. What should I be looking for? He recommended it for mood and mild tics and some sleep issues that we believe to be associated with pandas issues.

To answer the question of the dose it is 200mg.... so it sounds lower than what some are saying.

Thank you for your input. Both my dd and my ds are currently on a 10 antibiotic, decifer or something like that.. it's not in front of me. I will be continuing that until it is done before starting the 2 times a week of the zith. My ds weighs about 45 lbs I think. He is 6. I don't know the dose as I havent' picked it up from the pharmacy yet.. I will be getting it later. I won't be starting it for over a week as he needs to finish the other antibiotic for the active strep. The dr. told me to get a probiotic to use during the treatment. I also agree about not starting the 5hpt at the same time but he said he often uses it simultaneously with the antibiotic. I don't know.. I could just wait on that and use it after. I agree that I won't know which is really working. To the best of my knowledge neither of my kids are carriers. They have both had negative cultures. My dd always has symptoms when she has strep.. usually a high fever and sore throat, one time just a tummy ache that lasted a while so they cultured her, and this time just a sore throat but symptoms none the less. My ds is the one that doesn't show the symptoms but he has had negative cultures many times. It seems my dd gets strep relatively often in that this is her 4th time this year. I can't help thinking it's just a cruel thing to have a child who is prone to strep and a child who reacts to it... I consider myself very lucky that my ds seems mild and my heart just goes out to those of you whose children have more extreme cases. I just keep holding my breath though waiting for my ds to show more symptoms. You guys are so patient and great and answering questions while I talk this think out in my head!! It's hard when you have nobody in real life to bounce this off of because they just don't get it.

I haven't picked up the script yet so I honestly don't know but I will be picking it up later. I will let you know what the dose is. It sounds like my dr. is doing more of the every 3 days.. he basically told me to pick 2 days a week.. like monday and Thursday. He told me to pick up a probiotic too although he said it likely won't be a problem on his stomach.