gemcitygirl

Hello, I joined and posted back in November, when my then 4 and half year old son had a severe episode of OCD type behavior and a movement disorder associated with 2 positive rapid strep tests. Before this he had two previous bouts of emotional liability and hyperactivity, I believe these episodes were strep related- but we had no tests done at the time, so I can't be certain. When I took him to an infectious disease doctor in November, he thought this sounded like PANDAS, he sent me a few papers on it and gave me his pager number with instructions to call him again if my son has another episode. Back in late October, I had also made a neurologist appointment for my son, but it was for January. I kept this appointment because while my sons behavior was completely back to normal, his teachers began hounding me about his poor muscle tone. At the beginning of the school year (before the strep) the occupational therapist that works with his class observed my son because he held his writing utensils incorrectly. She said he was perfectly fine and normal, and that this is more typical for boys- nothing to worry about. Post strep episode around December, she observed him again at his teachers request, and suddenly he exhibited fine and gross motor problems that would likely make him qualify for State paid for occupational therapy. We are having him tested BTW.... But anyway, I brought this up as my chief concern with the neuro, I didn't think it had to do with PANDAS. He told me it was sydenham chorea, the spiderbite type bumps he had on his wrist in October were likely subcutaneous nodules caused by ARF. In fact, when I took him to the doctor when we had the first positive rapid strep last fall- I showed him my son's wrist and he told me "that can be a sign of ARF, but don't worry that is very unlikely". I do know that he had strep for a while before he got really sick, because he had complained to me that his neck hurt in the weeks before, but he felt fine. He had no fever or other symptoms until the weekend I took him to the doctor. The OCD behavior started first then there were a few occasions when I saw full blown chorea, once when he was running in front of me after school, he looked like a puppet. His gait looked so wild and strange that I screamed for him to stop, and then I asked him to do it again. He couldn't recreate it, and I had no idea what could have caused it. I told his pediatrician about it, but I was most concerned about his mental health when I insisted that we see a specialist. After all of this, he began improving so much in school these past few months,with his muscle tone and motor skills that everyone suddenly no longer thought my son would qualify for OT. But of course, he got sick again about 3 weeks ago. I had it week before, it was like a very strange stomach virus, I went to the doctor and that is what he called it. My son got it a week later and was sick for 5 days, he was acting fine- just sick. Then he was much better, up playing for a few days, went back to school. When I picked him up from school he was running in the hall and completely wiped out, I noticed he was clumsy at home that day, and by the evening he was an emotional mess. I didn't see any OCD or anything, but I felt like something was going on. SO, I looked in his throat and saw it. I called the ID doctor immediately and he told me to have him tested and the let him know what happens. The rapid strep just barely came back positive, the nurse told me it was negative and was about to throw it away, then she saw the line begin to appear and grow stronger. So the neuro that diagnosed my son with sydenham's, did not tell the ID Doctor, or send a note to him. The neuro did not prescribe prophylaxis, but wanted him to have it before dental work (why?). So here we are again, every time he gets strep he has a reoccurrence- he had a second positive rapid strep 4 days ago. The ID doctor sent him to a cardiologist who ruled out heart involvement- but he said my son has been lucky so far, and one of these times the luck would run out. He sent a note out to all doctors involved that he needs his tonsils out and he must go on long term prophylaxis ASAP. I agree with both of those courses of action. I do believe the neuro is correct this is Sydenham chorea. The cardiologist definitely thought it was rheumatic chorea as well. But PANDAS still concerns me, because of his past blips with possible strep(?) the year before. Can a child have early tremors before ARF? I know he has had repeated episodes of strep since he was 18 months old. My son does not have a tic, or identifiable OCD in his normal state, so I'm not sure if he currently meets the diagnostic criteria for it. But I did see OCD in October and November, the behavior vanished- but the movement disorder, although minor, did not. I've read conflicting studies about tonsillectomy and GAS infections regarding ARF and PANDAS- but it seems this is the reason my son keeps getting infected and then has trouble getting rid of it. Any thoughts on this? Or experiences with prophylaxis and tonsillectomy? I will say that he complained that his throat hurt (there was no behavior) at the end of January and his rapid strep came back negative, so he is not a carrier. I really want to make the right decision on this, and I'm wondering if I should get him with a neuropsychologist now, just in case OCD would become a problem in the future. Thanks for reading this!

Kari- impetigo looks crusty, typically honey colored. It can also look like pimples, and it's most common in youngsters in the diaper area. I think most of the time they don't even test it unless they think it's MRSA. Normally they just look at it and then prescribe oral and/or topical anitbiotics. What happened here was I finished a zpack early this week for sinuses and then yesterday it came back with a vengence. I ended up paging my family doctor and he called in another zpack w/ a refill and mupirocin to apply inside my nose. I'm seeing him tomorrow so he can see it first hand,but hopefully the zpack will start working. I was miserable last night. I'm thinking it must be strep related- because of my son's recent positive rapid strep tests. Also if you can catch it early on triple antibiotic ointment and a bandage should do the trick. If not get into the doc. Often people with recurring impetigo carry staph or strep in thier nostrils and need to treat that area as well.

Happy Thanksgiving! Thank you to everyone who posted in my thread before/PMed me. I've been sick and overwhelmed lately- so friends who took the time, I thank you! Here is the thread from before- http://www.latitudes.org/forums/index.php?showtopic=10927&st=0&p=92321&hl=misunderstandings&fromsearch=1entry92321 So.... after the two strep infections- my son's pediatrician referred ds to a ID specialist. The pediatrician, however, did not send any medical records or the results from the positive rapid strep tests & he ordered the wrong tests. Anyway, I told the ID Dr. about the behavior episodes, I had a copy of all his illnesses with me- ear infections, pneumonia and the two strep infections. I did not mention PANDAS, I wanted to see what he could come up with. And he thought PANDAS- it's the only explanation for this reappearing and disappearing behavior with illness. Our plan now is two-fold. I have his contact info, so I will call/page him if ds gets sick plus or/displays OCD/ADHD/frequent urination or others PANDAS symptoms. He'll get him in that day and treat him with antibiotics and do a rapid strep test or culture and check his ASO titers and then again in a few weeks just so we can solidify the diagnoses. I realize that ASO doesn't always show the extent of the problem. However, this doctor made the call (although I already knew), so he'll work with us. Here's the good and bad news. Owen is much, much better. He is his normal easy going self. He just finished antibiotics a few days ago. The bad news? I (mom) have impetigo. I have no clue how this happened. First of all I had a sinus infection, laryngitis and a cough. So I was put on Azithromycin about a week ago, but I've had this itchy sore nose thing for months! And it hasn't gone away. Ugh. So I had some dry skin going on from colder weather and using retinal- and I got what I thought were pimples... no I've had this a few times since September- it comes and goes. But this time it's bad, I have lymph nodes on my neck.... SO. I have some altabax prescription ointment for staph and strep- this was from some nursing incident when ds was a baby. I'm think though maybe I should go to the urgent care tonight. BOOO!!! I look awful and am seeing my entire family tomorrow. I'm also afraid that ds will get Strep AGAIN. This just STINKS.

Thank you again guys! Owen seems better as of yesterday, as in no tantrums and very little OCD behavior. HOWEVER- he still raspberries at me, he seems confused a lot. We often play a game where I say a word then he tells me what letter it starts with- he was very good at this before the strep. On the way to preschool I asked him what letter "mom" started with and he was like "k!" then he just randomly went through letters and had no clue. Also before the strep we had been working on his pencil grip- he still uses the palmar grasp. I about had him broke of it, but now he simply can't even try to hold his crayon right. In fact it's like his dexterity is messed up- he keeps dropping his legos and puzzle pieces, and yet it doesn't seem to bother him one bit. But on a good note, he had been seeing "flies and spiders" in his room at night causing him to get in bed with us. I searched his room in front of him before bed last night and told him that there were no flies or spiders or monsters in his room; and if he sees any it's just his imagination being silly. I told him he can kick the monsters butt and tell the bugs to shoo. He seemed to understand and actually stayed in his room all night and didn't give us any grief before bed- that is major. And he told me this morning I was the worlds best mommy, :) I haven't heard that in almost a month! I've missed him so much! But I want to say- hearing these stories about these doctors and pediatricians makes me angry. I'm a force to be reckoned with- my sons doctor told me straight up he won't discuss his behavior until he goes to a neurologist- he insists that PANDAS is a TS only disorder. I was like you need to read up on this- because you're wrong. The doctor recognized and observed my son's OCD behavior and his confusion (not knowing what to call his hands). I mean holy crap is that not enough?? And let me tell you guys, I worked in a large pediatricians practice in medical coding. I sat in break rooms at lunch with the doctors and we had great doctors- but it seems that male doctors in particular have disdain for mothers (and dads at times) sometimes. And really we did have some moms that were pretty ridiculous- so I get it. But, it's like a few of them lack empathy or intuition- the ability to see the child apart from the mothers emotions. There is one doctor there at my old work that may work with us- I left a message for him- he was a real book worm and he's young and likes challenging patients. But I just can't believe the ignorance on this. If a young child wakes up in this condition it should be addressed RIGHT away. I'm furious right now! If this is what my son has- and I'm sure it is- I'm going to work my butt off to make sure people know about this. Even his preschool teachers don't get it, indeed it's very odd sounding- but I'll be printing some stuff off for them and am scheduling a conference with them to discuss this. At the very least they must tell me when a kid comes down with strep so I can closely watch my son. I'm going to get the numbers of the folks who offered. I would love to talk to you all- I think I can get PMs, and I'll PM or email all of you my number. Thanks again!

You guys are awesome! I'm so grateful for all these offers of help I could cry. I will take you guys up on it, and come back tomorrow to sort through your messages and reply. Tonight, I had to get out of the house, while I still could. Owen seems better than his worst last month but he's still having tantrums, OCD symptoms and sleeping issues. The huge difference is (for the time being) I can somewhat reason with him. But with his just having started antibiotics on Thursday- I know the pattern. It seems like it takes a week and a few days after the illness starts for him to hit bottom. The thing is, I knew something was very wrong last fall, but I feel terrible for not recognizing the bathroom issues and nap thing as OCD in the beginning. I guess I thought it to be "oppositional behavior", rather than fear. The nap thing is new this time, and I fought back hard against him- we don't spank here, but we had timeouts. He would howl and howl until he fell asleep on the couch. I did this because I thought that his behavior in part was from exhaustion. But then he would wake up screaming- so I wondered if it was nightmares that he was afraid of. I should have seen it though, I was OCD as a child, and mine seemed to come and go also. I know there were times when my own mom couldn't reason with me, and having heard about and witnessed Owen's behavior patterns over the last year- she's worried that he's going to suffer what I suffered- esp in school. My disorder was a bit different from the norm, a lot of magical thinking and silly rituals. I was afraid of tornadoes in February one year.... Even now I'm still somewhat OCD as an adult- door checking - it's mostly hormonal I think, and it doesn't really interfere with my life. BUT I have the ability to combat it with tools I learned in cognitive therapy, Owen does not- though I'm working with him when he is calm enough to take in information. OCD doesn't affect my self esteem anymore- but Owen thinks he is "bad". I thought I was bad also as a little girl. That breaks my heart. I'm trying to walk the fine line of not allowing him to reinforce his behavior lest it becomes acceptable (like hitting and kicking), while trying to relay to him that I understand. And I know this is only a small part of it. But for the time being, I guess it's all I got! Oh and Colleen he is on Cefdinir 250MG, 1 tsp a day for 10 days started on the 11th. He's still coughing and he sounds very congested. And the face raspberries were attempted kisses! how strange, I'm guess that's what you guys were referring too. Although he laughs and continues to do it until I get upset or he thinks I have- then he'll scream "I won't be bad! Don't make me take a nap! Pleeeeaaaase!" However, sometimes I can hear him do it in his room, if I tell him no he does it. Sometimes he just walks around doing it- during his October mega bad week he did it a lot for an hour or more. If I manage to make him laugh and he'll stop, but its boredom or anxiety over naps maybe? His teacher has not seen this one time- I called her on Friday. The doctor believed it was a ritual or compulsion when he witnessed it this morning. But this doc has his head up his butt when it comes to this so who knows. Having said that, I have some questions about doctors so I'll be back tomorrow. Thank you again guys!

Thank you, and I bet you're right. We have a family history of OCD and ADD, so I'm sure that is part of it. We are in the Dayton, Ohio area. If anyone knows of anyone, that would be great. Thanks again for your reply!

I'm very frustrated right now, but I'm happy to have found this board. I have one child, he'll be five in February. My son is normally very sweet, sensitive, "laid back", artistic and imaginative. He mostly stayed at home with me until he started preschool last year. He had his first sick visit when he was 18 months old. He had strep throat and a double ear infection. Other than it being the first time he was ever very ill, I remember little regarding his behavior. Then last fall he got an upper respiratory infection, was put on penicillin. He became very hyperactive, VERY hyperactive after few days of treatment. He also started having bathroom issues after months of progress on toilet training- we went back to square one. After a about two weeks he seemed much better and eventually acted like himself again. Until he got another respiratory infection a few months later- same thing. Then in the spring again- same thing. Then in June he got pneumonia, and he became extremely hyperactive starting peeing constantly, visiting the bathroom up to 8 times in an hour. He had a daycare provider who knew him quite well, and she called me at work several times expressing concern about his constant urinating and bathroom visits, and his inability to stop moving. He also seemed agitated and tearful, and not at all like himself. At his recheck I mention all of this to the doctor, and he just sort of shrugged- just like he did at the previous episodes. Anyway, he finally got better- my daycare provider and I hypothised that it must have been the yellow Popsicles she was giving him, and it was food dyes causing this insane behavior of his. We ceased all food dyes and he seemed much better, a week after that he seemed fine (this was a week or so post finishing antibiotics). All summer was uneventful, until about a month ago, he had a rash. It looked like spider bites, and he said his neck hurt. He was also coughing, and with great dread I took him to the doctor. He tested positive on the rapid strep, had pneumonia and the doctor said the rash was strep also. He was put on cephalexin, and I made my son sit out in the area outside the room we were in, and tried to explain the issues with behavior that I knew were coming. I had no idea about PANDAS at this point, never heard of it. I thought it was penicillin type drugs that caused the behavior.... I asked him to consider Azithromycin- he had been on it in the spring and had very little behavior disorders after 2 days on the drug. The doctor blew off my concerns and said Zithromax was not a good drug for all strains of Strep. So four days after starting Cephalexin my son turned into a monster. This time it's OCD, hyperactivity, night terrors, separation anxiety and tantrums. For example- he woke me up the first morning of this episode and began asking me about when he had to take a nap. I told him after lunch, and he wanted to know when that was. No answer would suffice. He followed me around the house asking WHEN WHEN WHEN? Then eventually he had a total meltdown and was screaming he was sorry. I went ahead and kept him out of school that day. The entire day was a nightmare. The next day he went to preschool and he was fine there- but as we were leaving the parking lot he began throwing fits over naps again. Kicking my seat punching the ceiling. I had to pull over and le stand outside the car while he tantrumed for 20 minutes. This goes on for most day, particularly from noon on- he tries to pick fights, he blows raspberries in my face and walks around doing it for an hour straight. He keeps falling and hurting himself. Yet his teacher says he is acting fine in school- although he suddenly seems unable to sit up straight on the bikes there and falls out of chairs. I found this disorder after he became sick yet again this past week. Positive strep test on Thursday, with another round of antibotics. I found out about PANDAS by googling his pattern on behaviors. I called one of the doctors (the one who examined him that day) immediately upon stumbling upon this information. this doctor acted like I was overreacting- not a single child in that large practice has that disorder. He must have a tic to be considered to have PANDAS. I ended up taking Owen in this morning because he began coughing and wheezing yesterday- I was afraid the pneumonia was back. Same doctor was there today, I sent Owen out with my mom, we began talking about Owen's behavior and the doctor acted annoyed. Then right around noon, Owen started into the hyperactivity. He was making his hands fight each other, bumping into chairs and walls, interrupting us expressing concerns over naps, and blowing raspberries as we discussed his chest xray. The doctor then set him up with a neurologist. He also ordered blood work for immunoglobin and igg subclass. I have no idea if this is a good start. I really hate that there is something wrong, and it has to be this unusual and rare... I feel helpless. If they look for a tic disorder, they won't find one. I just don't know where else to go, or what to do at this point. I'm dreading the peak that will hit in a day or so after this next strep... I just hope we can see something noteworthy on the blood work that will point us in the right direction. Thanks for reading my vent, you may see me around.