I dont know if I can help you but my husband had MG and he was always getting IVIG's and he didnt always have breathing problem's if he had the slightest problem pretaing to MG they would put him in the hospital and he was given IVIG'S and usually it would be a total of 3,- 1 a day he had Medicare ,but he also had Mutual of omaha, I will admit the are very costly, we had also been told that IVIG's should be given at least 1 a month , but again your daughter is so young im not sure I can give you any good advice, we are in Dallas Tx and the best hospital for MG is South West Medical University, they treat MG there , My husband wasn't diagnosed till age 65 and we just lost him in Jan at the age of 69, your daughter is young and stick with your Drs and there is all kind of info on the internet but dont give up and ask them every thing you can think of get you a note book and keep up with every thing that is being done for her , if you have to tell them she is having trouble breathing do it, put your foot down and contact the Administor of the hospital , Id do every thing i could to get her what she needs, i know there are other drugs but I dont know at her age what they would give her . I wish you all the best for her , God bless you.

So sorry about your husband's passing. It sounds like you got him the best of care. Don't worry about my daughter. She ended up improving on her own. The muscle weakness passed relatively quickly (about 1 week) but the fatigue just recently fully receded. I do keep an extensive notebook. We would just pay out of pocket for the IVIg if we had to, but I am trying to get some sort of preapproval to avoid that expense. Thank you for the advice. Sarah100

Sarah100, Just for future reference in case you need it...I used to work in ER and outpatient services at a hospital where test such as IVIG was a procedure that was performed. Sometimes the patient would not be approved for the test so we would call their physician and have them put a different diagnosis on the order to help the test pass for precert or have them call the insurance company and get the precert then call us back. It's actually the doctors office responsibility to get a precert when they order a test but they don't always do it. Remind them to do that for you, especially before the day of the test. Obtaining a precert can take a week or longer,,sometimes you can get one the day it's requested it just depends. If they don't do it, you can try going through the facility where the test will be performed, if not at the physician's office. This can hold things up though. It's easier to have people in the medical field to obtain precertification than for you to try and fight them. The insurance companies know you, as the parent, are going to tell them whatever you need to to get the test for your child. When a doctor or medical person does it, the insurance companies will usually go along with their expertise if the doctor stresses the importance of the test. It's their job not yours to tell the insurance company the medical condition of a patient. This is just from my experience working where I had to actually do this everyday for patients. This is in the state of Ky so I'm not sure if this policy would be different in other states but that's the way it's done here. Just tell the doctor that your insurance will not approve it unless they put a diagnosis that will support getting the IVIG.

Thanks for this response. Part of the problem was that my daughter was trying to have the IVIg at Stanford which is a teaching hospital so a resident under my daughter's MG doctor was in charge of trying to obtain the approval. For the immediate future we can have her pediatric neurologist (who is affliated with a nonteaching hospital) order the IVIg, but that hospital will only provide it inpatient. And, eventually, we will just be dealing with Stanford where I'm sure the ease of the approval process will vary upon the skill of the resident of the moment. Fortunately, a study was just completed supporting IVIg as a first line treatment in children and teens with MG. (I found it on PubMed.) However, for the meantime I will keep in mind that we can always use the pediatric doctor to obtain approval. Thanks. Sarah100

I would get a letter from one or more doctors saying that it's medically necessary, and stating why they won't have her try the steroids and immunosuppressants. Have a copy on hand for yourself for the future, maybe for every future Dr to submit again to the insurance company so it doesn't get an automatic denial?

Think is right. You need a letter from the doctor stating that steroids and immunosuppressants are "contraindicated" for your daughter and that IVIG is medically necessary. I have been through this game with a few different insurance companies now and it is always the same game. They deny the precertification for IVIG when you first request it. Then, you send them something from the doctor, and eventually they give in.

It is important to keep in mind that "MG crisis" is actually fairly broad. If your daughter ever has trouble swallowing, breathing, or if she is at risk of falling, that counts as "crisis". Insurance companies know that in the end it is way cheaper to pay for IVIG than it is to pay for a hospital stay. But they will delay as long as they can.

An interesting point: While the insurance companies actually request more detailed information, my doctor's last letter said only "I deem IVIG medically necessary for this patient". It worked.

Thanks for the responses. I'll follow your advice. I did not know that "risk of falling" a factor for crisis. My daughter has not had any breathing issues even at her worst. She has had some slight swallowing issues. However, with the last virus she had, her muscle weakness was so significant that she couldn't walk to the bathroom without leaning on someone for support so good to know. Thanks again. Sarah100

I am having a problem with United Health Care as they are trying to claim my IVIG is maintanence. Well I found this site and it looks like it will be my answer. http://www.advocacyforpatients.org/index.html I will start my appeal process tomorrow. I will let everyone know the results.
Dale

I have United Healthcare as my administrator for Empire and they never gave me any grief. I also had many rounds of PLEX with nary a squeak.

Isn't it interesting that I've never seen a single one of the previous posters before and I've been around for a year-and-a-half?

Curt

Dear fkatt45, so sorry to hear about your husbands death. I know this must be a very difficult time for you. I did not know this, and can't remember seeing you post. It is good to meet you and I am glad you are here. Take care till next time love , carla

Do you have a case worker? They advocate for you. They work for you but are paid for by your insurance company for chronic cases. Mine has helped so much.

When I was having an increase in IVIG needed and the doc was stuck, she found out the infusion company had not sent in the proper work and my neuro's orders. She got it approved right away and avoided a 2nd hospitalization in 3 weeks. Look into it!

debra

If you notice this was an old post. I went all the way through the appeals process with Blue Shield and, then, appealed to California's office of managed care. Based on an independent medical review, the department ordered Blue Sheild to provide a permanent authorization number for IVIg. However, this doesn't mean Leah has used it. She hates needles so my appeals process with her has been less successful.