tantrums

We have a WONDERFUL immunologist. She was one of the first to diagnose. But she refers to Dr. T and took his info from us to refer other people to him. She is willing to do anything she can to help. So not sure how helpful it would necessarily be.

Sadly, we didn't get titers done right away. By the time we did them, he had 6 months of ABX down. But then, they were still over 200 so I'd LOVE to know what they were during the initial presentation! Of course, since hearing a psychiatrist insist he has Aspergers and our ped say he may be right... I've been in a frantic state of mind to try and stop it from happening! I think my main fear is that he is perceived as Aspergers. I mean, if he had Aspergers fine! Really, I'd deal with it and I'm certainly not prejudiced against ASD in any way But I just know in my heart it's not right. And if a kid can "develop" Aspergers within one year of an illness, what can happen in the next year? Or five? Terrifying really!

I finally emailed Kathy Alvarez because I couldn't take it anymore. She said our CAM Kinase is 169. That's not all that high from what I've read other people say here, right? HOwever, when I look at it on the scattergraph she tells me to compare it too - it does seem pretty high there. So - this confirms PANDAS, right? Dammit! I was actually hoping at this point is was Tourettes. Just seemed slightly more clear cut - especially since he isn't responding to PANDAS treatments

Reading this as I'm sitting at my desk at work - at the Division of Developmental Disabilities I have had more than one doctor request I do some "sould searching" and rethink my statements about my son. My statement has been this... Had I NOT known this child the first 6 years of his life - yes I would say he has Aspergers. However, since I do the work I do I KNOW he did not have Aspergers before getting H1N1 and then PANDAS/TS and I KNOW that kids do not suddenly develop Aspergers at age 6. That said - I DID soul search. I questioned. Of course I did And I questioned more people here at work than you can imagine. I talked to our Division psychologist, our nurses, our Developmental Specialists and our intake workers. NO ONE has had anyone come through this Division who developed ASD at age 6. My son is PRESENTING with Aspergers at this point. I don't doubt that. I also know the system and am not above using that DX to get services he needs at this point. Funny because I admittedly rolled my eyes many a time going to visit a family and seeing a child I did not believe had ASD at all - I still say ASD is over diagnosed in its true form and there should be clearer diagnostic critera. I also believe services should be expanded to other DX and disorders of course

I can't help with the IVIG aspect, but my son has had seriously disturbed sleep all of his life I think I'll sleep when he's an adult and moves out Night terrors started before age 1. And those were TERRIFYING until we became used to them. They phased out for the most part but happen once in a blue moon now. He still talks in his sleep, thrashes around, sweats profusely and has to be changed often AND sleep walks. My DS is 7 and I just got rid of the baby gate in the hall last year. I have been known to build lego towers in the hall though If you can - try not to talk. It doesn't help and may only add to the confusion. Although I know they catch you off guard and sometimes you can't tell right away that they are asleep. My son is very "jerky", like you said shivering, when he does it, so I can usually tell. Just lead back to bed and tuck back in. Make sure your doors are locked well. When I was a CPS worker I had several calls for kids wandering in the night and they were usually sleep walkers

Wow! So sorry about your DH! Carter is sleeping now - very soundly it seems. Melatonin was given as usual but he was up until nearly 10 anyway so not a very good sign I decided to try him in his bed tonight for the sake of acting as if everything is fine and see how it goes. My DH watched the kids while my neighbor and I drank much needed wine and decompressed ourselves while the kids couldn't hear us talk about it. So funny to hear her 5 year olds version as opposed to my 7 year olds. Her son was screaming crying and telling everyone he saw the boy under the bus and all of the blood. My son told everyone he saw nothing. The same school guidance counselor spoke to both of them, knew they were both right next to each other through the whole thing and told me "carter says he's fine and didn't see anything". He does NOT get it! This is why I go to the school pscyh who is WONDERFUL!!! As soon as Carter came home though, I saw the increased tics, he wanted to go watch the news crews and to watch the news, check online, etc... He was drawing pictures of school buses tonight. Several of them as drawing is one of his obsessions. I will say - none had anything disturbing which is nice. But they all had HUGE bright red stop signs in front of them. Neighbor and I are going to take the boys together in her car to the stop in the morning. We're more worried about others discussing the boy "jumping" in front of the bus in front of the children than anything else. They were told it was an accident and we don't want them hearing any other version. I'm still so shaken and it's been well over 12 hours! I think I'm still waiting for the other shoe to drop with my son. Maybe I'll be lucky though and he really WILL weather this well. I hope...

OMG - I'd NEVER tell him the boy did it on purpose! there was actually just a statement from the family on the news and they confirmed that How incredibly sad! My son would witness something happening, like me breaking my toe and then ask reassurance questions for long periods afterwards if HE had a broken bone. If he did ___, would he break a bone, etc. THAT is exactly what my DH does! I picked him up a little early. Not from school, but aftercare. My neighbor and I both went. We couldn't take it. I was useless at work anyway. There are newscrews all over the neighborhood, which only made it more dramatic for the kids. My neighbors son and DH's best friend is 5 and he's just outright hysterical crying over it all. Mine is just clingy and overly quiet. But he is ticcing like a firestorm here - ones I've never seen before. And he was very huggy, but then insisted he wanted to go to his friends house to play, so I let him. Meanwhile, neighbors and I are all chilling wine

I am definitely freaked out! Still shaken and this happened like 6 hours ago! Actually my neighbor and I are both leaving work and going to get them a little early. School will be over but they normally go to aftercare. We can't take it anymore!!! We're also going together instead of our usual carpool. I should have mentioned - it looks like the boy will be okay. He has serious head injuries but at this point is expected to recover.

This was absolutely a horrific morning in my neighborhood. First of all, it was raining and my neighbor offered to just take my son to the bus stop in her car. I said OK and my DS, who is 7, was upset that I wasn't going with him. I kindof hurried him along - he's been VERY clingy lately and I'm trying to minimize that. About 5 minutes later - I heard tires screeching, a thud and blood curdling screams! I also heard my neighbor yell my sons name. I've NEVER run so fast in all of my life! Turns out she only yelled his name bc he had started to run towards the "accident" and she was yelling at him to get back in her car. A 16 year old troubled boy had intentionally run in front of a school bus about 3 houses down from our stop. It was all visible from where we were. My neighbor and I had to make a quick call, along with the other parents still at our stop (one - a nurse and a couple others had gone over to help) to put our children on their bus or not. Their bus came about 3 minutes later and we made them get on it. Figured it will only be harder tomorrow and the next day if they didn't. Well we werent expecting what happened next! Their bus got sandwiched between police cars and told they couldn't leave the scene! They also wouldn't let us take our kids off. They sat there looking at it for nearly 45 minutes! My DS just looked like he was in a state of shock, which is typical for him. There will be ramifications later. I'm anticipating not much sleep for at least a week or two. So my question is... given the anxiety and OCD with our kids, what would you do? I've already fought back all urges to go pick him up from school today. The psych already let me know she is with him (and others that were on the buses involved). She is REALLY good so I felt it was best for him to be at school today. If you had an average child - you wouldn't hesitate to hold them closer, right? Probably let them sleep with you for a couple days... But if I let him do that - he's likely to only want more and more of it, right? My son's biggest obsessive thoughts are death/dying and severe injuries And this is the first day I didn't go to the bus stop with him!

Interesting... I have heard of Dr. Amen (and seen him on Celebrity Rehab LOL) and wondered what his take was. I'm with Phasmid. My sons handwriting completely went out the window last year with his first episode. Also, his drawing. My son is very artistic and can draw well beyond his years. He was reduced to scribbled stick figures. He is also obsessive about his drawing, so he would end up scribbling, screaming and ripping up the pages. Then asking US to draw what he wanted. It was really awful Despite what phase he is in now, his handwriting has been quite good. But I see his drawing taking a nosedive again. And he is very very clingy - even refusing to go to friends houses to play. So I am watching his handwriting like a hawk to see what happens.

I don't know, but I hope you don't mind my selfish question - When did you send yours in? It's been exactly one month today since they got the bloodwork and I'm obsessively checking emails and anxious to get home to check the mail!

I mentioned this before and found out several here have dealt with Molluskum Contagiosum. When I first discovered it, several months ago, my DS7 only had ONE spot. The doctor knew right away what it was and was amazed he only had one. She mentioned the treatments and said NO WAY would she want to do any of the options with him. My DS is obsessed with illness, pain and dying. Well, during the past couple of weeks, he has developed about 20 of them I discovered the initial one is gone, but it left a small crater on his belly. Most are on his belly, but he know has some on his arms as well. I'm worried about these continuing to multiply and potential scaring. Has anyone done any of the treatments to remove these? Everything I read says they are painful And it's not even a one shot deal - they have to do each one individually so it sounds torturous for my DS at the time. Someone please tell me the treatments aren't that bad

Will do!

We waited 8 weeks after the steroids to be safe. She had advised us to wait at least 6 when we first contacted her. My insurance says absolutely NO WAY IN ###### to IVIG so I don't know if Dr. B or L would be of much help at this point. Dr. T has been working the abx with us, but after 4 of them with little progress (except they do minimize tics), I'm just frustrated and honestly AM questioning the TS diagnosis. Hoping with all hope the Cunningham test will clear that up. What I'm most concerned about is the test showing he has both, which it feels like to me and what CHOP rheum. said. Since steroids made him so much worse and ABX only help minimally, it would seem that the two work against each other

We're in Eastern PA (lehigh valley). It's about a 4-5 hour drive depending on traffic and I'm not sure exactly where it is, just a vague idea as we go to Maine frequently. I do believe it was Leckman that the CHOP doctor recommended. I was going to contact them first anyway and explain the situation. Tired of wasting time and effort, not to mention money... They don't say PANDAS on their website anywhere.

I am anxiously awaiting my sons Cunningham test before I decide my next move. But I'm thinking the CHOP doctors suggestion of the Yale Child Study Center may be our best bet. UMDNJ was a total waste of time - as predicted. The doctor actually said to me "I don't treat PANDAS" and cancelled the appointment. To make it even worse, she went out and reemed the staff for scheduling a PANDAS patient. She suggested I go to Mayo in Florida. May as well go to Yale if I'm going to travel - I can actually get there in a days drive. But wondering if anyone else has gone to them? I'm concerned most about follow up. They indicate on their website that they do a lot of follow up. Driving with my DS in the car is NOT something I enjoy at the moment Although... those steamed cheeseburgers in Meridin - YUM!

Wow! I'm so sorry! I must've gotten in there RIGHT under the wire! It hasn't even been 2 weeks since DS' blood draw! They are really good with communication. I'm sure they'll let you know as soon as possible.

Hang in there Cindy! Get the Cunningham test. I held off for a long time because I though we were doing well with the doctors we have been seeing. Not that our doctors aren't doing their best, but I'm still beyond frustrated and finally contacted Dr. C. She responds herself, puts you in touch with a lab rep and they send you the kit. It's VERY easy! I know some have had trouble with their labs but I was lucky and had no issue. The communication is wonderful and they make it as easy a process as possible. I'm waiting myself now for the results...

Hello all! I'm actually quite excited. I just got back from Fed EX where I mailed off the Cunningham test. I was surprised. NO problem with our lab doing it. They did have to make a couple calls to their headquarters though bc they weren't sure they could hand me back the blood. I had to go back out to the car and bring them all the paperwork so they could see it and see I had the Fedex label and it was all ready to go. So a heads up to anyone else going to do that - just bring all of your paperwork and stuff inside with you. Now how long are they running on getting results back to you?

My son is DX with both PANDAS and TS by several doctors. I understand the predisposition and in my son's case, it was definitely started with an illness. And of course that can happen with either. My biggest problem right now is, you treat one and it aggravates the other - as in steroids.

I do agree that kids presenting with TS should be tested for any of the infections that can cause pandas. For us personally though, I can't help but wonder if we've gone backwards with my son. Diagnosed PANDAS when he really has TS. It is wonderful and I'm sure there is a HUGE percentage of kids that have treatable infections.

Sounds to me like a curious nearly 3 year old with maybe a touch of OCD brought in. The behavior at that age initself is normal. But the perseverating and asking over and over would be OCD coming into play.

Yep - that one too and all was fine.

Yes, he was given a strep culture in December and it was postive. Later on, titers were drawn and they were high. So there was evidence of strep. Probably a secondary infection after H1N1. He had a steroid burst and it was AWFUL!! We were planning on doing that prior to attempting to get IVIG. But both tics and behavior were unbelievable after the burst for quite some time and then it only calmed down to his "normal" level - no better.

You must've been posting the same time as me Kim. We've had ALL that bloodwork testing done. Every single thing has been checked out. The allergist did skin, found nothing and then went to blood. Poor kid! Dr. T did one huge bloodwork order - 8 vials! And when that showed nothing did another, which was also fine. The doctor at CHOP recommended YALE. Has anyone gone there? My only issue, aside from the fact that car rides are ###### with this child and it's about 6 hours away, is from looking at their site, they are all about follow up and follow through. I can't be going there every month. I do periodically look into it. UMDNJ is my last local shot I think - have that appt in three weeks. He had his tonsils out when he was 3 so thats not an option here either.