tantrums

Another idea for anyone planning on doing a flex spending account - make sure you look into the details! I've had them in the past and they were very liberal. I signed up again this year without reading. TOO many changes and I may have a hard time getting my money back out of it All of a sudden, they want doctors prescriptions for anything - even OTC or supplements, which in previous years went unquestioned. I was hoping to use this for supplements and the naturalist.

I know it can be used as a charity donation tax deduction and they did send us the receipt. What I'm wondering is, since we are probably close on the medical percentage, could we use it INSTEAD for medical expense. I'll ask the accountant after I tally up medical and see if it would put us over the edge. If it doesn't, then it's not worth asking.

That IS a hard one. I was just talking to a friend who has a 3 year old. He suddenly has to sleep with the light on and is creeping into their bed in the middle of the night. 3 is the age my healthy at the time child started developing real fears and doing similiar things. At 3, they start to figure out the world and that there are things that can actually hurt them and those they love. Throw pandas in at the same time and I can't imagine trying to figure out which is which

I did set up the flex spending this year - that will help. We have never made the 7.5% income cut off to claim the medical expenses. Although I wonder if I put mileage in there this time... That is something for people to think about I'm sure! Question too - if you did cunningham and it's a tax deduction as a donation - you cannot also claim it as an expense, correct? Can you choose WHICH to claim it as? If that $400 put us into being able to claim medical expenses I would prefer to do that.

Thank you! I cannot tell you how sorry I am that I "wasted" so much money on seeking treatment for myself for chiari the past few years. That is a dream of the past as I move toward throwing all available money at my son. It's very similar in the expenses and current medical thinking as PANDAS. My father even gives us money periodically and it always goes towards whatever I can think of that would help my son. And I admittedly have a good job - in social work for people with disabilities no less - and good health insurance. I cannot imagine the difficulties that others face. Actually I can and I have all new perspective as I work all day trying to find help for people and then continue working for my own child the rest of the time. If anyone has a child with any sort of developmental diagnosis as well and lives in NJ - I may be able to find a creative resource for you so feel free to ask! Sadly I live in PA and it's a whole different world there.

I'd say he was in exacerbation when we did the draw - not severe but it was starting up. He has no other identifiable infection. He has a subclass deficiency. Just confused why everything else would be okay yet the Cam K high?

I got the rest of my Cunningham test results today. The CAM K was 169 which I understand, but not so sure I understand the rest. Looks like - bottom line - it's all normal? Draw date 9/27/2010 Anti-neuronal Antibody Titers Anti-Lysoganglioside 2 hours patient 80 positive control >1280 negative control 80 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 250 positive control 16000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 1000 positive control 16000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 2000 positive control 32000 negative control 2000 normal range 2000-16000 normal mean 6000

That is absolutely wonderful!! Thank you for doing that!

This has been bugging me for a couple of weeks now. My DS7 has not been doing well in general. He is again off of all ABX due to serum sickness. We've had several doctors now say IVIG and I am working on it. Insurance has been difficult, but the casemanager there is also on board with the appeal. All year - DS has been writing beautifully. Even when he had little phases of behaviors and tics, his handwritting actually remained quite good. It was a huge problem last year! Now all of a sudden, the letters are getting very big again, and very sloppy. But more confusing to me is he is spelling his name wrong! WTH is this? He is 7 and has known how to write his name for 4 years. But it's always the same - he omits one letter. His name is Carter. He is writing it as cater. In the past, if he accidentally made an error in writing his name, he would pitch a FIT and have to redo the entire paper. Now he doesn't care - just shrugs when I ask about it. Also - our dogs name is Elton. He refuses to call him anything but Elt and gets infuriated when the dog gets confused and doesn't respond the way he wants. Elton is 14 years old!! He's confused on a good day Any thoughts on what this is? Is it some form of OCD or is it just a manifestation of the ADHD, which has been growing steadily worse all year since his initial diagnosis.

Don't feel bad about not knowing how to open the wine! I seriously just started drinking 6 months ago. Just never liked the taste much. HOwever, after a rage attack about 6 months ago, my neighbor gave me a bottle of wine (she opened it LOL) and it's been downhill since Suddenly, wine tastes GREAT!!!!! I frequently mess up opening them bc I got one of those air pump openers. Don't work if the cork isn't natural and how the heck am I supposed to know when they have wax on top??? I have been known to stand in the middle of the house and announce "I have a garbage bag and I'm using it in 10 minutes!!!" Suddenly I get help cleaning stuff up I feel like ALL I do when I'm home is follow people around picking up their crap! If I ask DS to do it - I have to ask three times and then he gets irritated bc he was GOING TO. Keep in mind, I just had a spinal fusion less than a year ago and the bending isn't a great activity for me. My favorite saying right now is "I have a screw loose!" because literally I do. A screw is broken in my spine and I don't have the time to deal with it! People are amazed that I can joke about it, but what else CAN I do at this point??? I'm looking forward to having brain surgery next year so I get some time off! I try my best to maintain calm with DS. I've found that helps him stay calmer of course. But I have been known to turn into a huffing, garbage bag weilding beast just cause I stepped on one too many legos! He has a puzzle taking up my entire kitchen table that he has been working on for weeks now and I "accidentally" spilled water all over it. It's still there. Throwing it out wasn't an option. It cannot leave until it's finished but he is so busy running from one activity to the next that he can't focus on the puzzle and get it out of my sight! It's a 2500 piece puzzle! I don't want to look at it anymore. I want it off my table!!!

I took doxy myeslf after some dental work a couple of years ago. I developed a TERRIBLE rash on my face. I thought it was so weird - I googled to check and then went back to my doctor. There is a HUGE instance of doxy causing facial rash. It can take weeks/months to go away after you stop the med. Not saying not to try it, you guys may be fine, but just keep an eye out and if there is a rash developing, talk to the doctor.

My DS has them. He started a year ago with just ONE on his belly. Finally after nearly a year that one spot vanished, but left a really large crater in his belly. Then suddenly, nearly overnight, about 40 popped up. We just went to the dermatologist last week and he did the freeze thing. It was only bad that night when we had to wipe it off (the skin comes off with it). He was very freaked off, but overall not too bad and he is willing to go get the others done the same way.

My son seemed to feel a HUGE sense of relief when I got the DVD of "I have Tourette's but Tourette's doesnt' have me" and let him watch it. In fact, he watched it repeatedly. It opened up a lot of discussion and he let me know a lot of what he was feeling. Of course, I had to explain TS wasn't exactly what he had, but he seemed so relieved to see other kids with tics and to have it explained to him in "kid terms". I highly recommend that!

I think it's hard for me to judge since my DS is only 7 and has major fears around things he sees happening to him. I myself, cried hysterically from fear through reading that - thinking that was our future. I'd never let my DS read it. I think it completely depends on your child and if you think she can handle it. Obviously, if she can get to the positive ending, it shows things will improve

I added her to the helpful doctors list. Hope I did it correctly! Working on responding/PMing people. Having HUGE issues with it, so if I didn't respond to you - can you send me a message so you don't get lost? My computer is crashing because I was uploading photos for ebay auctions earlier today. Problems with my video card. I'll get to fixing that SOME DAY!

Dr. Boosara Ratanawongsa - pediatric neurologist at Lehigh Valley HOspital in Bethlehem PA 2545 Schoenersville Road Bethlehem PA 18017 484-884-3333 Really wonderful personality, open to all parental input and great with children. Great to offer assistance in referalls to other helpful physicians and steering away from those who will not be open to helping. Knows who is studying PANDAS and who isn't in this area.

I will be making an appt with the ped rheumatologist as well. What I love about this network is that they DO all work together. Plus the computer system IS really good - they can all access one anothers notes. For myself, I have seen my regular neuro in the AM, then my neurosurgeon in the PM and he knows what went on. It's great! These doctors all really seem to know each other even though it's a pretty big network. I will work on PMing everyone that asked. DS is NOT in a good way lately and extremely clingy, so bear with me...

Just got back from our local peds neuro. She was wonderful!!! I was hesitant bc we had seen the other one in her group earlier this year and he was a putz! I had gotten a letter that he left so figured I'd give her a try. Dr. T had also recommended her. She spent well over an hour with us, took every little detail into account and seemed very interested in my son. She was very personable and very considerate. She gave a lot of helpful advice and opinions and referrals to doctors within our network who she feels will be helpful - and who will all work together! She is sending a very long write up (which she did write then and there and gave to me before we left) to the rheumatologist and psychiatrist. She said the peds rheumatologist did grand rounds for Pandas. Lehigh Valley Hospital - Muhlenberg Bethlehem PA Dr. Boosara Ratanawongsa - everyone calls her Dr. Boo

When you get on the automatic defense when friends on facebook post quizes and links about mental illness and make light of it. I deleted someone for that Actually she referred to my post that DS diagnosis was definite that that MUST be what caused her OCD. GONE!!!! When you go out and buy 20 bags of beef jerky, packs of silly bandz, glue sticks, etc... whatever your kids current obsession is just so you don't have to go through the horror of him running out! When you hear a child screaming in the neighborhood and automatically assume it's yours. Seriously - my neighbors will text me first now to say it's NOT him...

An oral challenge for ABX would do us no good. His reactions have varied from 2 - 7 days after exposure. I was supposed to do it for shellfish, but quite honestly with everything else we have been dealing with - it wasn't on the top of the list. Not like a lobster is going to accidentally get into a 7 year olds mouth I'm getting increasingly concerned, he started doing the oddest thing today and I HOPE it's not a new tic. Simply because if it is - it's pretty severe. He clenches his whole body goes stiff as a board and kindof screams. Now, it started when we were trying to work on the 12 sheets of make up school work he has, so I took it as frustration. But then he continued it the rest of the night We have an appointment with our immunologist on December 27th. I know from experience I won't get in there any sooner. She is WONDERFUL but crazy busy. I may get in with the PA but last time, she wasn't much help. The immuno totally "gets" this whole thing. As long as nothing gets terribly worse, I hope it can wait. We do have the new neuro next monday. I've heard she is very good. We shall see...

I had the strangest epiphany this morning while laying in bed before I got up. He was on Omnicef when we were on vacation. And we actually ended it during the trip because we'd decided to do the Cunningham test. I was really leaning towards TS at that point. Then he wasn't on ABX for a couple of months until recently. I wonder if he wasn't reacting to the shellfish at all, but to the OMnicef then?! I will ask the immunologist though about the IgE blood test for shellfish. She did order blood testing and it was negative but not sure what type.

I am waiting for the other results. It's just shy of 2 months. I asked about 2 weeks ago and they sent me the Cam K score. Still waiting on the rest.

that is interesting. Especially considering the chronic croup he always had prior to PANDAS. Luckily he never did develop asthma but his (what we thought were seasonal) allergies have gotten worse over time. I have been racking my brain trying to connect these. Seriously - the shellfish reaction was the same as this antibiotic reaction yet he tested negative for all of them AND has eaten everything except lobster before.

When it was shellfish it took about 3-4 days from the first bite, but he was eating it every day. Two weeks ago, Azithromiacin was quick - like 2 days for the hives but then swelling came later. This time it took longer, 4 days but was much more severe each of the last 3 days.

I'm so sorry! I was in your shoes just about this time last year. My son's first presentation was scary obsessive thoughts along with major separation anxiety. We did have a positive culture and then high titers so I guess it was a bit more "clear cut" for us. Doesn't make it any easier I'm sure Hang in there and just keep learning all you can and advocating for you daughter.