mandyknowles

We are having it done in Plano..and I am a shelter insurance agent and I have FMH insurance. I am not sure what the code is that he used, but the diagnosis he used was hypogammaimmuglonemia(sp)..she had two tests show her IgG was low so he said that qualified for approval. and it did!!

Thank Ya!!

I got the call today!! yay!! Sucky part is they cant fit us in until Aug 17th and 18th, so it will be after school starts...But its not like she went last year anyway!

my daughters was 19 i think

Thats awesome that it went good today...sorry i missed you; would loved to have met you, but i am sure i will get the chance again. let us know how it goes tomorrow I left around 10:45- Did you see where they do the IVIG? Sorry I missed you too! We were really pleased with how they handle it and Cindy was GREAT! Brandy no i didnt see where they do it...i am realy glad they were good with yall...

Thats awesome that it went good today...sorry i missed you; would loved to have met you, but i am sure i will get the chance again. let us know how it goes tomorrow

I know right? It's sad that we have to be excited for that crap because the medical community dont believe in our kids....really ticks me off

So, we went for our dr appt in plano today....he of course said he can't diagnose just PANDAS, but we already knew that...so, he did find an IgG deficiency in her bloodwork from the last two times its been drawn. so, now i am waiting to hear from them to see if the insurance will cover the IVIG, which he says they really can't not approve it because of the actual diagnosis he gave her. All in all I was really pleased with this visit! We are on the road to maybe recovery...ya'll pray they call me with the approval!!

i tried to call you tonight..we will be there tomorrow too!! sux i wont get to meet you, but gosh i am so glad this is working for you!

My daughter missed her entire 5th grade year of school because she had such horrible neuro issues. Our school was wonderful and set her up on a homebound internet program...might be something to look at if your child still has problems. my daughter is ready to go back to school but i will have to go with her because she has chest spasms to where she stops breathing and i just cant let her go back without me, still doing this. i hope this helps

WOW that is awesome!!

He said it can cause the tics yes, but not ocd.

I suppose you could consider Lauren Johnson's sneezing to be continuous tics. But, I've NEVER heard of "continuous tics" being a requirement of PANDAS. My dd's tics were not continuous. I'm guessing most kids aren't. And heck, you don't even have to have tics at all to have PANDAS. I'm glad you told him he was crazy. Thanks! And, yea he told me that it might be west nile? omg!

I sent you a PM! Hey it doesnt show i have a PM..Resend it plz

My daughter has them bad at times. She talks mainly to people that have died in the family...Sometimes she cries when someone new comes. but she talks to them and figures out who they are...But then, it goes away after a few days

Ok, so we went to the new dr today in Fort Worth, Tx...He said she doesnt have lyme and she doesnt have Pandas and its anxiety...Told me to take her off her abx and that was that...I told him he was crazy! My husband looked at me funny, but o well! He said because her tics werent continuous that it wasnt pandas. I told him I was not sending her to school in the fall if she was still having breathing and jerking spells and he had the nerve to ask me WHY @?#$##$@$#!!! Does anyones children have continuous tics? I mean, yea she is getting better but this man, who has "took seminars" told me to take my child off of something that she has been on and apparently has helped her. ...grrr! I am calling Dr K in the morning to set up a phone appt because this man has lost his mind!

That is AWESOME!

o and no i havent checked any of us for strep but that is my next step when we get back from Ft Worth Monday..

She is on Minocycline and Azithromicin. She has been on those since December though, so maybe they just arent working. I will be so glad when we get this under control and she can resume normal activities..

I faxed down there and requested them, and no note at all with them when they faxed them back. So, yea I am pretty upset about what i found on the damn internet!! I know i shouldnt have even went searching but i did. dang me. I am gonna call Bonnie and have her explain it to me.

Where is this Dr. Murphy at?

Ok, I got the results from the May bloodwork Dr J did in Connecticut. Like her Immuniglobin G is low, and her strep of course is positive again, a few lyme bands that tested positive again, her white blood cell count is low, her absolute neutrophils(i have no idea what this is) is way low, PTT LA screen is High(i have no idea what this is either), her c3d immune complex is way high(again i have no idea), her lymphocyte subset panel they did(i have no idea what this is either) some was low and some was high.... Does anyone know what any of these are and means? I mean, i get she still has infection, but my goodness, all these diff things are confusing.

I'm sorry, but if a dr told me that, i would tell them SEE YA! It doesnt matter to me how respected they are, as long as they try their best to work with other drs helping you. My daughter still has hallucinations and she has seen several psychatrists, whom say it is the illness. I refuse to put her on any medication for this, because it's stupid when it wont help.

Don't feel too bad...My grandma sided with the nut house people, and not me when i refused to put my daughter in a hospital for that. Me and her have went round and round over this.

My daughter would shout obsenities for like two months. and now, she has multiple personalities, so the different voices could be part of it. She has been on antibiotics for 7 months now and is just now getting to where she doesnt do these things as badly as before. She has chest spasms which makes her stop breathing. It's awful! I hope things get better for you. Mandy