melanie

Excellent! Who do you have for insurance? Angela BCBSnj

I got the approval at 7 pm from the insurance company..I will call the mD tomorrow and hopefully schedule this.Thank you Dr T his persistance with my insurance company pushed them over .I just got the best christmas present ever ever!! Melanie

Danny main tic is cursing coperalia(sp) when he hears you speak if you stammer he tics either curses or moves his feet like sammy does in the videos( I was so I hate to say happy when I saw sammy cause I never saw anyone except danny do the feet thing)No one seems to have the cursing tic .I know its neurological PANDAS is a neurological thing but why does his psyc want to give him antipsyh.

So did the insurance cover it? Tell us what insurance company you have and what the dx was for your son Im soooo happy for you I would go to colorado I would go to freaking the south pole If I had to . Please let me know how hes doing and if you wouldnt mind the info I would be greatful Melanie

I agree I spoke with Dr T he said we could try the Advil if we wanted to.He didnt tell us to use it I think he heard it from a parent too.Im still fighting the stupid insurace company I hate that they make you wait so long.I guess theres a lesson of patience I need to learn.But meanwhile the insurance company said his levels of Igg arent low enough and a stupid medical director is reviewing it again and they will call me later today.Well its 5:30 and no phone call again.This happens every monday and by thursday I start freaking out.Its been 2 months I think they are jerking me around until I get so frustrated that I give up.Well insurance company I will never NEVER give up so there.(I feel better whoo).

TRY this https://www.unitedhealthcareonline.com/b2c/...ulin_(IVIG).htm or this https://www.unitedhealthcareonline.com/b2c/...ulin_(IVIG).htm

TRY this https://www.unitedhealthcareonline.com/b2c/...ulin_(IVIG).htm

This is a little tricky to answer, so perhaps other parents could help here on what would be useful for the FAQ. It's hard to balance accuracy with understandability. See if this makes sense. Within the scope of PANDAS, CaM Kinase II test is a measure of whether antibodies in the blood would cause signaling of neuronal tissue if the blood brain barrier were open. In many patients, the blood-brain barrier will be closed and so the test only indicates that there is a potential for neuronal signalling as opposed to any being actually caused by antibodies. CaM Kinase II activation of neuronal cells has been shown to be elevated in children with Sydenham Chorea and in children with PANDAS. Cam Kinase II acts to convert the amino acid tyrosine into L-dopa that later becomes dopamine. The antibody seems to interfere with the regulation of dopamine and creates symptoms similar to tyrosine hydroxylase deficiency (THD). How about where can you get these tests done how do you ask your md to do this?

good luck keep us posted melanie

Heehee- IVIG= IntraVenous ImmunoGallo! wait Im in ! Im sure the insurance will cover that hey they will give you as much antipsychiotics as you want all kinds of drugs not antibiotics you can only have 10 days of those . Im sure if they can prove that red wine would make the kids shut up and do as they are told they would approve it. Melanie

Hes in level 2 appeals with BCBS I now have a case manager and will speak with her tomorrow she seems loke she really wants to help.Today was a good day and I had running around to do when I came home he was doing all his HW and 2 were math simple math but hey Ill take it He was using a calculator but well..Hes happy for today I wish everyones child is happy .They deserve to be happy.\ Melanie

Ok so today was a great day He recieved an letter from the mayor who read his paper on WW11 at acouncil meeting came home and started his hw and wrote 2 papers on sponge bob(oh well Ill take it) Ill never get this stuff.Still waiting for the insurace company to approve the IV Please dr T call them!! Melanie

Kids are mean My son doesnt have many friends either Quite frankly I dont know if I would want to hang with him either hes not always nice.Im a middleschool teacher and some kids are really nice You should call school and see what kinds of groups there are for her to participate in .Rebel or games even aftercare is a good way for them to make friends She soundslike a wonderful kid Melanie

Thanks everyone for the thoughts and prayers he taking 150 clindimicin 2x a day he was ok for 2 weeks but things are turning well today was terrible I spoke witht he insurance company and they are waiting for dr T to speak with them I know they called him tonight,I have a case manager now and she seemd very eager to help. He needs the iv to get well I need the mds to make the phone calls .Im tired of this just want him to be well melanie

where is gama located? Is it a suppliment

i cant open this

Im not hearing as much ticcing but danny hit a teacher today he also kicked and flipped a chair .He is complaining about some bad story going on over and over in his head.Hes having a hard time getting this out of his head(poor guy).He doesnt seem sick at all he said his throat doesnt hurt and his eyes seem clear. He slept alot this weekend and his skin is spotty .Does this ever end? I dont think any medication is ever going to work. I thought it was (antibiotic) but well this isnt good ,I want my kid back the kid I had 3 years ago the sweet nice un infected kid...Why id this not getting better..I think I may have to look into some serious behavioral therapy for him.Is there theripists that understand pandas? Does it matter.What kindof therapist would work with him.He just told me its ronald mcdonald that he thinking about.I wonder if like a antilepic med would help these repetitve thoughts.Risperadal isnt doing anything . thanks for listening again melanie

Ok so if advil works so well anyes we do use it dailt 400 mg in the AM what other antinflamatrys are there ? What meds target the basil gaglia? Also how much advil is to much is 400 mg a day to much or to little hes 138lbs Melanie

VERY VERY WELL said !! I have tried several antipsych meds with danny I had to,His behaviors were ..well ..not easy to handle.My question to all is what has helped aside from antibiotics? Risperadal helped for about 1 month Every SSRI has been a disaster A freaking nightmare. has anyone had any medication that has been successful? If the basil Gaglia is swollen is there a antiswelling medication I know the steriods help but anything long term,aside from IVIG(still waiting for that) I guess what Im asking is what medications work on that area of the brain? Just want things to be ok I guess Have a good day Melanie

whats intrav?

danny takes 150 mg 2x per day we are awaiting IV treatments but its just an untill thing but its helping him melanie

HI my son is also 15 hes taking clindimicin hes allergic to penicillin and tried azith a while ago I definitly see improvements so maybe that will help keep us posted melanie

is he an immunologist?

my son kindof shuffles like.Sammy from saving sammy does the same thing it was creepy.Dr T will know melanie