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IVIG at Coram Infusion Services


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Hello, I wanted to take a poll to see who on the forum has received IVIG services from Coram Infusion Services. They are a division of Apria Healthcare. They are nationwide and they did my son's 2nd IVIG for 1/4 of the cost that we had to pay at Denver Children's Hospital.

 

Could people let me know if they have used them, if they are going to use them?

 

I spoke to one of the sales reps for the company, Colin Ruepelle, and I am going to negotiate with him to see if he could offer an additional discount to PANDAS families or possibly set up some type of a grant program, for families that are struggling and cannot get IVIG covered.

 

Has anyone been able to get it covered? He told me that one family in either New Mexico or Arizona? Was able to get it covered by CIGNA. I thought that is wonderful....

 

My son is doing very well after second IVIG. He still continues to struggle with OCD, but he is 80% better. Not raging like he was. He was competely incapacitated before the IVIG's. Still on high dose Zith 500 mg. He has lost 10 pounds too... He is 12.

 

Thank you,

 

Judy...

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there is a center near atlanta....

we were denied ivig...we are waiting at the moment to see other docs....

...it kinda makes sense the hospital maybe over charged.....if thats the case

i think the dan we use in fl is reasonable..and if we go ivig we may just do with him at least firs go round...expecting we will need 2-3...

but if the price diff was significant..i may reconsider do the first one in area.......but....again..i would pay a little extra to do with someone who knows protocal for pandas well...

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We are looking at doing IVIG at Choram in Nevada. We met with the neurologist on Monday. I gave her Chorams info which is right around the corner from her office. She has agreed to do the IVIG. She is deciding between Choram or the local hospital. I have spoken with our local Choram on the phone a few times. They sound great. They do require an in state doctor to prescribe the IVIG. We will likely do the IVIG at one of the places next week (Hopefully next week!).

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They told me when I called that they would accept an out of state prescription.?

 

I made it a point to make sure. They told me they would get back to me after I asked. After a day, they called me and told me that they would accept out of state orders.

Edited by P.Mom
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We also used Crescent one time (they are an infusion center chain like a Coram), and they were really, really great. We get it covered by insurance for immune deficiency, but I did note that the total bill was less than $2000 per child, all in (and didn't seem to depend much on dose). (For comparison, at Dr. B's, the bill had been $7800 per child.) And Crescent negotiates, too. Not sure how far they go with that but we ran into an insurance tangle where we expected only to pay a $40 copay based on previous experience, but it turned out that the insurance only covered 80% since they weren't seen by a doctor during the infusion. When I whined about it a bit, they immediately jumped to letting me know that they had a program to forgive a portion of costs in cases of financial challenge to help people afford IVIG. We don't qualify so I don't know how far they go with that, but maybe that will be useful info to someone out there.

 

They also had the best nurses and most comfortable setting we've encountered. My kids still wish they could go back there since the nurse was so good at the IVIG insertion, she made them so comfortable, gave them presents, bought them McDonalds for lunch, etc.- but for us, it's 10x more expensive than getting it done at a doctor's office.

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We used Coram in Lansing, MI last month for my son's IVIG. Was not covered by our insurance (grrh...) They were great regarding cost. They sold us the drug at wholesale, and then discounted the 2 days of nursing services to just $90 a day for us. In total, it was $17,000 cheaper than what I was quoted by 2 hospital infusion centers. We were their first PANDAS case. The nurse had received a printout on PANDAS before our infusion to educate herself. Things got a little dicey the 2nd day of infusion when my son developed symptoms of migraine, vomiting and fever that the nurse had not seen before (is this unique to PANDAS? or high dose?) as she had never done a 2 day infusion and was very nervous to proceed. But, in the end, she was really a great advocate, stayed with us for 8 hours and was SO nice to my son that he wanted me to buy her flowers afterwards. We will definitely return there is we need to do another IVIG.

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We used Coram in Lansing, MI last month for my son's IVIG. Was not covered by our insurance (grrh...) They were great regarding cost. They sold us the drug at wholesale, and then discounted the 2 days of nursing services to just $90 a day for us. In total, it was $17,000 cheaper than what I was quoted by 2 hospital infusion centers. We were their first PANDAS case. The nurse had received a printout on PANDAS before our infusion to educate herself. Things got a little dicey the 2nd day of infusion when my son developed symptoms of migraine, vomiting and fever that the nurse had not seen before (is this unique to PANDAS? or high dose?) as she had never done a 2 day infusion and was very nervous to proceed. But, in the end, she was really a great advocate, stayed with us for 8 hours and was SO nice to my son that he wanted me to buy her flowers afterwards. We will definitely return there is we need to do another IVIG.

 

My son had an infusion last Wed at Coram. They did a one day 2 gram dose. It took 6.5 hrs. My son tolerated it great but the next day was really bad. I was so glad we did not have to go back. Initially I asked my doctor to spread out the dose but he said it was better to do one day and his patients experience the best results with a one day high dose. Now that it is over, I guess I can agree with him. One day of infusion,one day of migraines and vomit then we are done.

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tapiash - that's really interesting. When I spoke with the nurses at Coram pre-IVIG, they said they would never do such a high dose (and ours was just 1.5) in one day, and actually wanted to spread it out over 3 or 4. I asked for 2 back to back, just because it seems to be the most "known" way to do it, and they acquiessed. Glad your son is doing better after the one day of side effects.

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It was very interesting. It was a very slow drip. They seemed to know what they were doing at Coram. They were so caring. Our pandas doctor also mentioned that children can handle larger single doses better than young adults.I believe he has 2 children with autism so he is very sincere and empathic. He wouldn't recommended anything to patients he wouldnt be willing to use with is own children. This gave me a sense of trust and security but I was still a little concerned with the single dose.

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