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  1. My son is similar. He has broken an arm, a toe and a tooth along with other injuries. He breaks something in the house every day and scares the life out of me riding his bike, skateboard, etc... He's so reckless! I would say it has been his worst symptom for the past 6 months or so.
  2. Be on the lookout for serum sickness too. It can begin anywhere from a few hours to a couple of weeks after ABX. My son started with just some odd swelling and hives. Gave benadryl and nothing happened. Wound up at the ER a couple of days later. They said it was an allergic reaction and gave him steroids and epi. It went away. Next time we tried another ABX, it was the same but worse with painful joint swelling and he was unable to walk. Third time, he turned completely black and blue from vasculitis. SCARY!
  3. My son presented like this initially. His symptoms did not ALL come on overnight. The seperation anxiety did. Then a few days later, the OCD thoughts, then the tics. All within the course of a couple weeks, but it was one symptom at a time. I wouldn't automatically think PANDAS in a 6 year old with seperation anxiety only. Something could have happened at school, something he saw in the news, etc...
  4. I found the info on the CHOP doctor - Jennifer McGuire. But apparently she is no longer there.
  5. My son cannot take ANY antibiotics, which is the problem. He escalated with each episode of serum sickness to swelling and vasculitis. They say the next response could be anaphalaxis and they gave us an epi pen. Just out of curiosity, what IS the reasoning behind antifungals? Wondering bc he happened to get severe foot fungus and was put on the oral antifungal for that. Imentioned to the doctor that I had heard they are used but neither of us knew the reasoning. Wonder if that is actually helping him too?
  6. Oh Okay - I'm sorry! Like I said I haven't been here in a while and am out of the loop Good point because if I were non verbal, I would be freaking out in pain too! I misunderstood and thought it was for behavior, which seemed odd. Naproxin is not likely to help a migraine. Only triptans will truly help. I hope it works well!
  7. I have chronic migraines from Chiari Malformation myself. In fact, just took imitrex an hour ago. That said, it worries me that the doc prescribed it off label. Did you ask why? It can be a very dangerous drug with nasty side effects. It also will lose effectiveness if used more than a few times a month and cause rebound issues (with headaches anyway). My son has started to have some migraines and I would be terrified to give him imitrex. Luckily, motrin works for him.
  8. Hi all, I haven't been here in quite a while. I'm just finding my way back. Hope everyone is finding some success with their children! After getting excluded from the IVIG study and trying every route I can think of to get it, we have hit the wall. Our insurance actually has PANDAS as a clear exclusion for IVIG. We just went to a developmental pediatrician who was probably the 8th doctor to insist he needs it, but not be able to get it. She did recommend a doctor at CHOP who is now doing IVIG for PANDAS with success. I did get Medicaid for my son so am trying now to see if they will approve it. We live in PA and CHOP is covered Whooohooo! We went there a long time ago and got nowhere. She DID clarify this is NOT Dr. Elia and said not to waste our time with her (LOL). Does anyone know about this? I called CHOP directly and they were no help routing me to this mystery doctor. In the meantime, we have somewhat adjusted to this being our life. My son is for the most part, functional most of the time. ADHD is his worst, consistent symptom and has been for some time. He is downright dangerous. He has broken an arm, a toe, chipped a tooth and had other more minor injuries. We tried STrattera last year and it was a DISASTER! He had a plan to kill himself with a knife while we were sleeping. He was SEVEN! I have never been so scared in my life. Needless to say, the Strattera was ended. We took several months to consider even trying something again. We tried Intuniv. Not quite as bad as the STrattera, but increased just about all of his symptoms. So now we are trying Concerta, which seems to have some positive effects. The Developmental Pediatrician we went to (Dr. Senf from Good Shepherd in case anyone is familiar) is wonderful! She said he clearly needs an ADHD med but did warn us that they are very tricky for PANDAS, as one will increase anxiety, another will increase tics, etc... Has anyone had success with Concerta? What others have you tried that helped without increasing other symptoms?
  9. My son was on steroids and that was not a problem. He made it all the way through the preliminary and his info with Yale and his info was sent to NIH and I was told he was in. Then he was excluded as we were researching places to stay down there! He was ultimately excluded because he has serum sickness now to every single class of antibiotics and they didn't feel safe trying any more abx with him Best of luck to anyone that DOES get in!!!
  10. It was hard for me to choose between constantly sick with infections and normal childhood illnesses. My son is now 8 and has had PANDAS for exactly two years. He didn't have infections except for two ear infections, yet he developed "glue ear" at 3 and had to have his adnoids out and tubes put in. He had strep twice and we only discovered it by chance. He had chronic chronic croup though... OMG I swear he was on steroids more than he was off of them for the first 6 years of his life. He was DX with croup 10 times in one year and lived with "that cough" for probably 90% of the year. Anytime he would get the simplest cold, it would turn into croup. WHen he got H1N1 which was the precipitator for PANDAS, it was the FIRST time ever something did not develop into croup. I was so excited for a week or so, then he developed PANDAS. Our allergist said it was kindof a trade off. His immune system changed so it was now his instead of croup. I told her I want the croup back! He has always been very small though. Born at 5 pounds and wasn't ever even ON a chart until this year when he touched the bottom.
  11. Don't feel bad! I did that too initially but have realized he can't help it and now we grind our teeth and bear it. I barely notice it now unless it's interfering with something I'm trying to hear. I do notice though, if I turn the TV up louder, he gets louder too. But I can tell it's not intentional.
  12. I just got home from work - late night. And surprise!!! He didn't bring home this mystery reading assignment! He also told me he can't have recess because he isn't bringing it in. If she took the time to email me and ask me to do it, y ou'd think she'd have the common sense to make sure he put it in his book bag! UGH! Need to chill out before I answer her. I am going to CC the counselor and also ask for the meeting.
  13. So I took the passive, do nothing approach for a couple of days. We didn't do any of the sent home work yet because it's been hard enough to get homework done. I think they are trying to make up for all the snow days because there has generally been more than usual. I just got an email from the teacher asking me to please do some timed reading thing with him - that he hasn't been bringing it back and forth and hasn't had it in three days. I have NEVER seen this and have no idea what she is talking about. I went through his assignment book again last night to double check things and there is no mention of it. He is smart enough not to write it in there if he doesn't want to do it. But I also think asking kids to write their own assignments due in a day runner type book is ridiculous! Time to contact her and I think ask for a meeting because this all needs to be addressed. Since there are NO provisions for homework or missed classwork in the 504 I think it needs to be.
  14. That is our one consistent tic. The volume and frequency can change, but it's been constant for probably 6-7 months now. That is the only one the doctors see, but it's obvious enough that they notice now. It can be so bad, if I'm sitting next to him trying to watch TV (which I usually am bc he has to be physically touching me most of the time), I can't even hear the TV
  15. All I've heard since I can remember in the media is the overuse of antibiotics harming our children. So what are we to think? Although the idea of NOT getting an antibiotic for an ear infection makes me shudder! Luckily I never had a doctor that wouldn't prescribe them. I deal day to day with parent guilt and what if's (social worker for developmental disabilities). It won't do any good except cause you MORE stress. You did the best you could with what you knew. We all made real bona fide mistakes with our kids and nothing I see you writing there even sounds concerning to me (and I USED to be a CPS investigator ). You got treatment when you felt it necessary and followed doctors advice. What else could you do? If I didn't have the job I do - I probably would not have learned about PANDAS quickly either. And learning quickly didn't help much. I have spent the last year flip flopping with my own opinions on what treatment to take - at several points taking him off ABX because I didn't want him to be on them forever. Now I wonder if that made him as bad as he is now - if I had just left him on them initially, would he be all better now? I once forgot to put the baby gate at the bottom of the stairs when he was 9 months old. Found him 2 minutes later teetering on the top step. I took the whole flight in one leap I swear and got him but I cried for an hour! I once left my purse with my little pill box on the table and he was chewing excedrin 2 minutes later. I closed the car door on his foot. I fed him a frozen meatball with onions in it (our only food allergy). I forced him to wear shoes that were too small bc I thought he was just being fussy about them. Now THOSE are seriously stupid screw ups that made me cry! You can't blame yourself for PANDAS
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