JoyBop

Here it is https://mychart.nyulmc.org/mychart/ Make an account and as soon as your test results have been reviewed they will be posted for you to see and print.

So they have a patient portal? Most hospitals do now to comply with new federal laws. Its great bc once you have an account you have access to all of your test results. You also see diagnosis codes and bills but not actual doctors notes or progress notes.

That's a great idea t Anna. I will have our psychiatrist request them. They respect here and have answered every call and email. However. My therapist called 6 times and never got a response. That's what kind if games they play. You guys are totally getting it! My goal is to preserve what I can of his self esteem and get him into a smaller, more supportive and nurturing place. I just have to make sure he won't be overwhelmed academically and that they are ok with him missing 3 or more days a month for doctors appointments. Public school never made him make up missed assignments with do toes notes. If he had double or triple homework some days I'm not sure we would survive! I understand missed concepts and info would have to be gone over, but I want to make sure we aren't biting off more than he can chew. They do accommodate a few students there that are on the spectrum. That's a great sign!!

If it were me if rather not have to travel. Also, if you ever needed it done again everything would be in place. What's rate do you live in? Would your insurance even cover a procedure out of state? Honestly, if you had a great dr like Dr T guiding and educating your child's local doctor, that is gold!!

Thank you! It was the worst experience for him by far. I would describe his behavior as manic. It got very ugly. He attacked one if his older brother out of nowhere and almost broke his nose and damaged his new glasses. ($500!!!!) his brother became enraged and struck him back. It was a horrible disaster. If anyone has ever been on the fence about trying a stimulant, be very careful!! I would never tell anyone to take or not take a medication their doctor prescribed, but this was seriously the scariest thing I have ever seen.

What state do you live in? Every state is different. In MA you need a doctor to send notes and fill out forms. It's very difficult to get awarded and you have to prove many hospitalizations and Inability to work. I understand other states are easy as pie so it really depends. I would recommend finding an advocacy group to help you through the system. There are free ones and they can be very helpful. I would start with a phone call to medicade to get all of the forms. But make sure you get help filling them out or your application may just sit on someone's desk for months. For example, in MA they ask for the head of household info. Most "moms" would fill out dads info if they are the bread winner. When in fact, they are asking for the person who is available by phone during business hours and whom they will be dealing with. If Dad works and can't pick up the phone, or doesn't have the info right in front of him, they will not speak to anyone other than "head of the house". Now I'm not implying that moms can't be head of the house or that dads wouldn't have the info, I'm just giving you examples of how tricky these applications can be. A social worker in a medicad clinic can also be very helpful. In my office, I have helped many full out these applications. If you were in MA I could help.

I have to say, I disagree and don't know where they are coming from. Are they saying when you take out the tonsils. And all other sinus and nose tissue pandas goes away? Kids can get pandas with or without their tonsils. My kids have both had their tonsils out since developing pandas and they still have flares. There is no doctor that would consider taking out the "nose and sinus tissue" as well. Maybe I am misunderstanding?

Stratera is an NSRI which can have similar effects as SSRIS. in fact, it's commonly prescribed for those with adhd and anxiety for that reason. Our doctors have warned us not to try stratera because the SSRIS were so disastrous. We can now add stimulants to that list! So you are correct. It's not an SSRI. But it can have a similar effects, especially for those that have had bad reactions to SSRIs. Meanwhile, WE ARE IN RIDILIN HECK!!! or maybe pandas HECK!!! The dose should have been long worn off by now but his symptoms are ramping up. Grimacing faces, agitation, temper tantrums. Baby talk, rage, karate chopping us. I know it's not his fault. We were doing SO well. I can only hope he wakes up tomorrow and this is all over with. Lord help us!!

What is alcat testing? My son is obsessed with food now and using it as an escape. He eats everything under the sun and has no recollection of doing it. Working with therapist on that one. We will be tackling diet issues after his scope next month.

DS was diagnosed with PANDAS PLUS by Dr. Swedo and the team without a doubt. He was never adhd before pandas. I have 4 children and only 1 one of them has adhd. There is no question as to wether or not my child has pandas. We had also tried intunive and clonidine that weren't helpful. I thought trying the stimulant was a reasonable trial considering our family history. Especially since the adhd symptoms don't go away between flares. Other symptoms such as OCD and anxiety don't go away completely either but he is able to hide those symptoms whereas the hyperactivity is impossible to ignore. . We decided against stratera bc SSRIS made DS suicidal and we don't want to revisit any of that. Ridilin was the shortest acting safest drug to try and I'm glad we did. But unfortunately it wasnt a hit!

Sure. My son is 80lbs, 8 yrs old and is on 500 mg Keflex BiD. Some kids just don't make the anti d nase. No one knows if that's an immunologic deficiency or a normal finding. I throw out there that my healthy child (pandas but seldom Sick with bugs) also was deficient on protective titers on all of the pnuemo strep titres he received vaccine for. I'm not sure if there is a connection but you could always ask for the bloodwork. My follow up is t til feb but I'm guessing they will want to revs dinars him and test again.

It was recommended to my son at the NIH to trial a stimulant, with out doctors blessing, of course. Today we tried our 80 lb 8yo son on 10 mg of short acting ridilin. What a disaster!! All I can say is, thank goodness its the short acting dose!!! Oh well, it was certainly worth a try!! I supposed that is proof that it's not typical adhd as stimulants stimulate the frontal line where adhd patients lack stimulation. The way I understand it, pandas patients experience adhd like symptoms due to excess chemicals in ither parts if the brain. I totally understand why they recommended it though as we do have another child with classic, severe adhd, and we had our oandas son worked up for it several times preceding the big onset. Perhaps indicating that he could have classic adhd on top of everything else. But in all honesty, I think the onset if ADHD came in with the mild pandas symptoms with the previous strep infection that occurred 8 months before the overnight severe onset. Does anyone here have any luck with stimulants?

I think its all relative and we all have our own pet words for symptoms. I also call a flare any upheaval of pandas symptoms. I use the teen popcorn flare the same way you do as well, a period of less than a day, but typically minutes to hours of symptoms and then they are gone. There are different degrees of flares so I might refer to one as a major or minor flare. But I'm sure we all have our own terminology. I call the serious overnight onset a crisis!!

I realize what you are saying, but I think it might be valuable to see where he is educationally and how testing results might have changed since the onset a year ago when We had him privately tested. With that said, his IQ was in the gifted range and there were no real deficits. Still, the testing was done so I might as well have the results but I don't know what my rights are.

There are so many causes for a rash so I would definitely consult with your doctor. My concern was an allergic reaction. My kids are all allergic to penicillin. The rash for 3 of them began on the arms at about day 5-8. It then spread to the trunk and worked its way up to his face and eventually caused lip swelling. That's when it for serious. I just mentioned it because for older kids, it's easier to miss the belly and back when you no longer are bathing or helping them get dressed. Particularly if there are no complaints of itching, ect. Of course it could also be contact dermatitis, exema, or countless other things. 80% of the time a reason can't be discovered for chronic hives or rashes. Still, its best to ask a doctor.

We have chosen not to give it to our boys. I have an 11 and 14 year old boys. Neither have pandas. I'm not one to normally pass on vaccines for healthy children, but I see no need for this one. I personally don't buy all the hype that this vaccine is killing kids (couldn't help but see it all over Facebook) but this one doesn't seen to have much purpose for our boys.

It's been a really tough decision but I think I've finally made it. After months of trying to get our sons school to do anything at all to help our child, I've finally decided that at this point, its a loosing battle. Our dr wanted an appointment ASAP to help make a plan. The meeting was repeatedly put off until finally, they cancelled it altogether asking her just to attent the IEP eligibility meeting. (Which by the way was requested in Nocember and there is still no meeting in sight) they haven't even finished their testing on him. I met with a school in our town that has only 12 3rd graders and 80 students overall. DS spent the day there today and he begged to be able to stay. He said the kids were actually nice to him and the teachers paid attention to him. The teacher loved him and said that he would fit right in. They wholeheartedly invited him to enroll and are willing to help him in anyway. They didn't blink an eyelash when I explained pandas, only offered support. I have many friends who have sent kids there past sand present and have faith that its going to be the best decision we e ever made. Here's my question to you sped gurus. The testing for IEP has been ongoing. I'm thinking of just going for it and withdrawing him from the school before the IEP date is even set. After all, I had another child in that school on an IEP and it was never followed. So I have very little faith that anything would come of it. Here's my question...am I still entitled to those results even if I withdraw my child? I read online that even private schooled kids can request an eval by the district. It's not that I care so much about the results but they would be interesting to see , and I might as well get the last of my tax dollars out of the deal. If it were you, how would you proceed? Call off the dogs before the meeting if you knew you were already gone? Or would you sit and wait and see what comes? Do you send a certified letter? Anyone know how to deal?

I think it really depends on the amount of inflammation.

I just wanted to let you know that we have a very similar story. My child does not ever have an elevated anti d nase, even with the rise and fall if ASO and positive cultures. It's very important to get a good swab, and a proper overnight culture should be sent out if the rapid is negative. My child was and still is on Keflex. It took a good 14 days to see improvement. Hang in there!! I think you are in the right track! You are very fortunate that the doc ordered the ASO. That is evidence of a recent/current infection even without the d nase. My child's d nase never changes even from one lab to another.

jferinga, did dr swedo say there was a choice? I was told to stay on abx long term either with or without the IV Ig. Perhaps every case is different.

I agree it could be an allergic reaction. But warm I touch makes me think infection so a trip to doc is warranted. However it would be rare to have a bilateral infection. (The rash is in both arms ) keep an eye our for rash on belly also. Definitely call the doctor.

They are definitely decreasing! That's a great sign. Its interesting that they just give you a pos or neg on the ASO. Most labs will give a number with a reference range. Keep in mind that the anti d base can remain high for a year or more, but should keep coming down at least little by little. It's also important to use the same lab for consistency.

T. Anna, thats so wonderful that he is ready to do some work!! At the NIH I heard about highschoolers that missed 2 years of school, but as soon as PANDAS was under control they snapped right back into place and graduated at the top of their class. HE CAN DO IT!! MEanwhile, after a few days of torturous homework with DS I am realizing I wouldnt survive a DAY of home schooling!! What a challenge! Im interviewing tomorrow with a small, affordable private school nearby. They have class sizes of as little as 5-8. I was disappointed to hear that there are 12 in the third grade. Do you all think that going from 20 students to 13 in a smaller environment with more hands on curriculum would make a difference? His behavior is sucha challenge right now that Im not even sure they would take him. They said, they dont take "behavior problems" but they do accommodate all kinds of learning problems. That made me a little nervous. But they do honor IEPs and said that every child has an individualized plan to suit their own learning style. I just dont want to have him kicked out!!

Can someone drive with you? Is was also going to suggest the train. Also, are the docs willing to work remotely and have the tests done in your local hospitals given the severity if your situation? It can't hurt to ask.

Thanks Janny! Is that a public Ed program? It private? If so, what does it cost? Rachel. Thanks for the input. I'm relieved as I don't even have 6 he's between the time I drop my last kid off and pick my first up. I'm wondering if I can even do this??