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Looking for experienced advocates for IVIG.

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Guest

Someone was very kind enough to give me some names for ivig advocates from this forum, thank-you, however I have not heard back from them after emailing (they may be booked, busy).

 

Thought I'd ask and see what other names might be suggested. I have read some on the jennifer jaff center but they don't seem to do advocacy just give information.

 

Right now the diagnosis is clinical encephalitis with primary auto-immunity, along with secondary immunodeficiency, POTS, IC, etc; severe psychiatric problems that are resistant to both medication and ECT. We have not received results back from LP yet, I think the results will be helpful if we can identify which auto-immune disease it is.

 

We have definitive proof of neuro-inflammation.

 

However, I'm getting sicker and sicker, ocd and psych problems including depression are getting worse and worse. I don't have it in me to put up a fight. Insurance has denied the first appeal very quickly.

 

Said they will only cover for: ITP and PID.

 

We have no other path to take, literally tried everything except this, and we trust Dr. C....... We can show that I've tried everything else possible, it's been over 10 years of going to mayo, shands, surgeries, many psychiatrists, alternative therapies, you name it - I've done it.......... don't know if this will hold any weight, but I have no other options.

 

Thanks.

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Hi Ophelia,

 

Have you tried a personal letter to whomever the final decision lies? I myself, when I left it up to doctor's notes, and case workers got nowhere....I finally wrote a personal letter to the person/doc whom was weighing in heavily on the decision. Miraculously, it was then that they had a complete change of heart. I believe that the human element/touch is still not lost on some....

 

If you want, If you pm me, I will send you a copy of the letter I sent. My doctor felt it was what turned the decision around...

 

Q

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Guest

Hi Ophelia,

 

Have you tried a personal letter to whomever the final decision lies? I myself, when I left it up to doctor's notes, and case workers got nowhere....I finally wrote a personal letter to the person/doc whom was weighing in heavily on the decision. Miraculously, it was then that they had a complete change of heart. I believe that the human element/touch is still not lost on some....

 

If you want, If you pm me, I will send you a copy of the letter I sent. My doctor felt it was what turned the decision around...

 

Q

Well when they told me IVIG was cancelled and we were all set to go, I couldn't contain my frustration and began to sob on the phone hysterically. This phone call was passed to the higher ups and most of them at the insurance which is local heard it. At that point they called my mother in for a meeting and I've been in close contact with an RN there who took special interest and felt really bad after hearing the phone call. Even with her help insurance still does not want to cover and have told her I need to find "another path". She has been putting in the appeals and I have been able to talk to her personally telling her I've tried everything a single human being can try to get help, my words exactly, and that after 10 years I'm getting too disabled to leave my bed and never leave my house, etc. Even with all that, there is still much reluctancy.

 

But a copy of the letter wouldn't hurt, thanks.

 

I still think having an advocate detail everything would help, I have other diagnoses that would also call for ivig and that were not mentioned by Dr. C because they aren't his diagnoses: treatment resistant and very severe: IC, dysautonomia, complex regional pain syndrome, CFS.

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Guest

I actually got a-hold of someone @hrosenkrantz recommended and I like her, thanks for that. So this may work out.

 

@qannie47 - I spoke with the RN who works for my insurance and she seems to really want to help and gave me some info. on what to do next. She is a good person to have in my corner. Thanks.

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Ophelia-I am so sorry you are having such a battle with your insurance company. I can't believe that they won't approve the treatment considering it is being recommended by such a reputable hospital and physician. Did Dr. C say he often has difficulty getting the treatments covered, or does he think this is unusual? I hope and pray you will be able to get the help you need. Also, I'm not sure where you live in Florida, but I also live in Florida. My son has been receiving outpatient IVIG treatments at our local hospital in West Palm Beach, FL for almost a year. If you have success in getting insurance to pay for the treatments, I wonder if you could find an outpatient facility closer to where to live so that you wouldn't have to fly to New York for the IVIG treatments each time? Has Dr. C recommended this as a possible option for you? You are always in my thoughts.

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