melanie

Thats relly great advise I will ask him melanie

Im so sorry to hear you say that you must care for yourself If you dont you cant take care of your son god bless you..I hate the insurance company!!

We appealed it with some help from my union it doesnt matter its just not going to work.My whole family are lawyers they all would help the insurance clearly says not covered for pandas .Even though they did pay for the 1st iv. Melanie We have the same insurance. We did IVIG in July, and now they are saying that they will not cover! I wish I knew what to say. Is it outpatient or Inpatient? I am so sorry. I too have read their website. Thinking of you! I think Dr Sultan wanted to do inpatient thats what he did the 1st time .I have no idea what dr T would do probably outpatient I will pay for it but cant seem to get anywhere .Have you used drK?

We appealed it with some help from my union it doesnt matter its just not going to work.My whole family are lawyers they all would help the insurance clearly says not covered for pandas .Even though they did pay for the 1st iv. Melanie

I am not sure what they denied? Will try to help once I know. Brooke They denied the appeal for IV i think the neurologist who di dthe 1st IV has given up

I thought i was on the right track now I feel like Im going backwards Im so tired of this .Does this ever end? Insurance company denied 1st appeal .Now what ? Melanie

\ Good luck Dr T me and danny are wishing you luck dont forget us now that you are famous

I heard that Dr T will also be appearing on the show Go Dr T hope he doesnt forget about us though

WONDERFUL with a capital W Ok why did you do the pex instead of the IVIG again? How and who did this ? Was he immune comprimised? Melanie

I think Dr T uses repferin(sp)I saw on his site Im glad things are good Danny is on the spectrum too.Its a double wammy.Sometimes Im not sure which is what.When you say itchy do you mean just Vaginal itch obviously danny doesnt have that but he does seem a little itchy.I thought it was just the dry skin but maybe he has some yeast build up .Is there Any natural products that help that? I think Im going crazy sometimes!!! Melanie

Thanks thats great

Hi we were watching fox last night about 6pm and accross the bottom of the screen that ticker thing ,come a discription of PANDAS symptoms I didnt see the whole thing(Im not sure if a story was attached )but wow I was inspired.My sisters bestest friend in the world is a big producer on FOX I called her last night to see if she would ask her to get Gretta or someone over there inerested in this.I know there having lunch today hopefully someone will be interestd,seems like maybe they already are.Did anyone else see it? Melanie

thanks buster

Thanks

Its about time

Does anyone have a chart on what levels of pandas kids levels are and or immune deficient people (15 yr old)should be im curious melanie

Hi Got his blood levels back from Dr.T and he definitly has IgG issues So I guess he is immune deficient!! Kindof happy maybe the insurace will allow us to get the IV again his levels have gone down from October to November.Thanks Dr.T for helping us hope this is what we need to get him well . Melanie

who ever this person is should understand that this board is a lifeline for many struggling moms and dads and not the place for this!

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I was also wondering how she was.We see pretty much the same stuff you see.Dan had iv in sept and is way better but not as good as 2 1/2 weeks post IV.Anger is definitly better but still there.Are you planning to do the IV again?What is your plan? Melanie

I think something like that really helps. The UHC site shows 1st off that IVIG is covered for immune deficiency, with at least one infection attributed to the deficiency. Right now, I'm trying to get approval from UHC for our upcoming Latimer visit (not til 1/8/10). I know she doesn't take insurance, but since we were referred to her by the rheumatologist who declined to treat her because he doesn't have the expertise, we may be able to get reimbursement under a "gap exception", since they don't have any closer, in network providers with the necessary expertise. Then my daughter has secondary insurance(state provided), APIPA, which is supposed to cover any additional expenses over what primary pays. The fun fact here, is that APIPA is a subsidiary of UHC! This is amazingly complicated, but I think we really have a good shot at getting this covered. They both say, though, that you have to show that there is not a in network provider who has the expertise to treat her....well golly, how in the world does one do that? Is Cinga better I think you just have to go through their list of "approved providers"...call them and see if they have the expertise/availability to treat your dd...then you have to call UHC and say "look I spoke to these 20 doctors on this list of yours and none are willing or qualified to treat so you need to cover this one who is". If you ask a doctor what their experience is with treating PANDAS with PEX/IVIG and they answer "none"...then that's an easy strike off the list IMO. Maybe dh (Buster) can explain this better. We went through something similar with our HMO when dd first got sick. There were no psychiatrists qualified (by their own admission) to treat a 7 year old with anorexia nervosa....so we were thus able to get coverage for our out-of network OCD specialist child psychiatrist. This is definitely something I am going to have to look into. Cigna as been good at reimbursing 70% of out-of-network providers, but seeing that we have a long road ahead of us, I am going to look into having them cover more if there is no qualified in-network specialists... Thanks for the wisdom! Isabel

My son is 15 un dxed for 10 years at least He is also dxed with ASD.Probably is because well he is.Our main issue is his behaviors,tics ,anxiety etc.He has had 1 IVIG in sept this year did well but needs more probably monthly.Hes on antibiotics with Dr T.Does good one day not so good the next,I think its just our journey now to have this ,Hopefully the insurance company will step up and see our son needs the monthly dosages.We are awaiting some blood work STILL to see if he is compromised in any if anyone is wrth it you know its you kid!!They need us I just wish It wasnt so diffucult,and I wish I knew then 10 nyrs ago what I know now. Have a great day Melanie. Keep your head up and dont give up

I know the Aetna plan I currently have specifically says it will not cover IVIG for PANDAS. How can 1 insuance comp say yhey use iv for PaNDAS and another say its experimental?

I can change insurance soon either bcbs,aetna or cigna which is beter?

I think I can switch insurance companies.Is it true that United Health Care covers IVIG according to the link it says it does Does anyone know for sure