szcasey

Gah! Hit send too soon. Below is a link for the different IVIG brands available. I'm on my cell... Hoping it's the most current list. http://www.medprorx.com/forms/MedProRx_IVIg_chart.pdf Again, good luck!

Check out this article (re one of the IVIG brands, Privigen). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2697917/#!po=10.7843 I'm sure you can find something in the article re IgG numbers that justifies IVIG therapy. Find out which IVIG therapy is offered by the doctor and research it backward and forward. I'm certain you'll find a nugget to help your fight.

Here's Anthem's IVIG policy. Compare coverage with the reason for denial. https://www.anthem.com/medicalguidelines/va/f3/s9/t0/pw_ad081049.pdf Also check with the billing department at your doctor's office to see how they can help. I fought this year's ago... Went through appeals process and lost. Ended up going to the CT Insurance Commissioner and won. It was a long process and I had help from the doctor's office. A lot has changed since we were denied coverage. If I had to fight it now, I'd fight for coverage for IVIG for PANDAS (CIGNA's IVIG policy specifically mentions PANDAS as a non covered illness). I'd also question why there isn't a consistent IVIG policy for each insurance company. I'd also question why Anthem covers IVIG for Toxic Shock Syndrome (caused by strep)... Yet there's no mention of PANDAS (which means it isn't covered). Check out how other insurance companies handle IVIG - all post them online - Google X company IVIG policy. Document every conversation you have with the doctor's office and the insurance company. Good luck.

My son has had 13 IVIGs. He did much better on gammagard than Octagam. He only had three Octagam treatments. Hope this helps: http://www.phscorporation.com/IVIGComparison.pdf

Try Googling your insurance company's IVIG policy (e.g., CIGNA IVIG coverage policy). There are exceptions... It's a start... You will at least know what isn't covered. Good luck.

I have not... Who is Dr. L and where is s/he located? Thanks! Good luck!!

Thanks for posting, Lauren. I'm going to try this for our entire family. Sarah

Thanks! We currently see Dr. B. He is dropping CIGNA as of 9/15 ( according to CIGNA as his contract is good for another 3 years; his office says otherwise). New infusion company will begin soon, apparently CIGNA approves their immunology therapy. But office visits won't be covered by CIGNA. We just can't afford more out of pocket expenses. I'm looking for another MD who takes insurance and provides IVIG. Not easy... Thanks for your response.

Thanks so much for your response! $700 is steep. I'm trying to rein in the costs. What doctor do you see for Pandas? Thanks again! Best, Sarah

Hi, Does anyone have experience with Dr. Leckman at Yale New Haven, CT? Does he take insurance? Does he provide IVIG? Please feel free to pm me. Thanks!!

Thanks, everyone for your replies!

Hi! I'm so sorry if I haven't responded to you... Am I missing a message? I'm working off my cell and I don't have any other PMs from you. :/. What am I missing? I'm glad to share stories and support. I love this site and everyone is so amazing. So my apologies for whatever I have missed. Help! Sarah

Mold is a horrible thing; can cause so many health issues. In my opinion, it's worth testing for. It's hard to get rid of... Good luck!

Thanks for posting. We saw huge improvement after the 2nd IVIG. I agree, each child responds differently. I hope your DS only needs one. Best wishes!!

He gets IVIG every 8 weeks. The headaches are debilitating. And his symptoms are getting worse. No illnesses. Only change is Octagam.

Bump

My 10yo DS has had 11 IVIG treatments at Dr. B's office. We saw huge gains after IVIG #2. I'd say DS was 95% better but IgG levels were only slowly improving. During this time, October through December we'd see/hear mild vocal/motor tics but nothing like onset at 4 years of age. Since 1/2013, we've seen a slow but steady decline. I'm wondering if it's due to switching from Gammagard to Octagam. I'd love to hear experiences of others who have made the change from Gammagard to Octagam. Thanks!

I've attached a copy of UHC's IVIG policy. Hope this helps. https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Policies%20and%20Protocols/Medical%20Policies/Drug%20Policies/IVIG_policy.pdf Good luck. Hope the response isn't too late.

I'm pretty sure Dr. B has Saturday hours... Maybe open until noon. Try emailing and calling.

We had our kids start swallowing little bits of over cooked ziti. 1/4 of a cooked one... Told them not to chew. They learn how easy it is. then move up to 1/3 of a cooked ziti pasta. Eventually, we could put the supplement in the pasta - has to be cold or the supplement falls apart. After one week of doing this, they wanted to try the supplements without the pasta. Prednisone is a hard one for kids (well anyone) as it has a horrible taste! Good luck.

I would love a copy, too. szcasey@yahoo.com. Thanks so much! Sarah

I was able to get their answering service on Friday and was told that they are without phones and Internet. They told me to try again on Monday. Good luck!