I'm tired and sad tonight

[memom]

I am getting tired. I feel more and more like a salmon loosing the battle to get upstream. The rushing constant river of Pandas has been pushing me further and further down. I have been trying to go against the tide for years now. Pandas is winning. We have tried everything everyone has suggested, antibiotics, ssri's, steroids, surgery, dietary supplements, nutritional changes, and a year of cbt. Now the final step after many failures and partial successes, is IVIG (per Dr. K. and Dr. B.). I got the letter from the BCBS appeals today refusing coverage again. I have not yet been able to speak to Dr. B.'s office (closed today). I just want to cry. At 17 years old (18 next month), we may need more than one dose with some suggestion of limited likelyhood of cure/remission. We repeated her pneumotiter titers and she only passed 4 of the 23 serotypes yet because she has only had chronic asthma, allergies, throat infections and respiratory infections, there is not enough efidence to cover IVIG. They were very clear that IVIG is not approved for PANDAS as there is no proof of effectiveness. So now, where to go. I have 2 kids struggling right now. My heart is broken. My spirit is spent. My fight is weak. I am tired.......Can I afford maybe as much at $30,000 for 2 rounds of IVIG for only one of my 2 struggling kids.....I don't have the answer right now.

 

I know I am not alone. There are so many of us in the same place. I am jealous for those families like Sammy's where it was as simple as antibiotics. Two years ago I was so hopeful. I am now loosing hope that I will ever have a normal family again, that my kids will feel good again and be able to live a normal young adult life. The stress on my 28 year marriage is hard. The burdon of being the only adult to hold the torch for these kids has become overwhelming.

 

Sorry for the downer words, but there was no more room for these feelings inside, I needed to let them out.

 

memom

[JuliaFaith]

I am getting tired. I feel more and more like a salmon loosing the battle to get upstream. The rushing constant river of Pandas has been pushing me further and further down. I have been trying to go against the tide for years now. Pandas is winning. We have tried everything everyone has suggested, antibiotics, ssri's, steroids, surgery, dietary supplements, nutritional changes, and a year of cbt. Now the final step after many failures and partial successes, is IVIG (per Dr. K. and Dr. B.). I got the letter from the BCBS appeals today refusing coverage again. I have not yet been able to speak to Dr. B.'s office (closed today). I just want to cry. At 17 years old (18 next month), we may need more than one dose with some suggestion of limited likelyhood of cure/remission. We repeated her pneumotiter titers and she only passed 4 of the 23 serotypes yet because she has only had chronic asthma, allergies, throat infections and respiratory infections, there is not enough efidence to cover IVIG. They were very clear that IVIG is not approved for PANDAS as there is no proof of effectiveness. So now, where to go. I have 2 kids struggling right now. My heart is broken. My spirit is spent. My fight is weak. I am tired.......Can I afford maybe as much at $30,000 for 2 rounds of IVIG for only one of my 2 struggling kids.....I don't have the answer right now.

 

I know I am not alone. There are so many of us in the same place. I am jealous for those families like Sammy's where it was as simple as antibiotics. Two years ago I was so hopeful. I am now loosing hope that I will ever have a normal family again, that my kids will feel good again and be able to live a normal young adult life. The stress on my 28 year marriage is hard. The burdon of being the only adult to hold the torch for these kids has become overwhelming.

 

Sorry for the downer words, but there was no more room for these feelings inside, I needed to let them out.

 

memom

 

So sorry to hear your struggles! My heart goes out to you. Another possible choice are centers that do IVIG in the home so it is not as expensive. They are called "Coram Infusion Centers" and they have several places. There just happen to have one where I live in Washington State. I do not know anything about the company except that they do IVIG so hopefully, that will give you at least another option to look at. Best wishes.

 

We are trying everything too and have not had any luck yet, so we may be looking at IVIG for my ds12. Take care.

[tired mom]

I am so sorry. I wish I had the right words to say to make you feel better. I understand your pain and how this consumes our life. I wish I had answers but I too am searching. Somehow we get the strength to stand tall again and keep fighting..It is such a bizarre ordeal that we go through but for some reason we were chosen to become the parents of these children so that makes you special. Keep the faith and give yourself credit for being such a caring mom. Take care.....

[Iowadawn]

Memom-

 

I will PM you. We have BCBS, was in your exact situation. 24hrs after we went another route we were approved--not only for the last one we had, but for any others he needed until 1 year after the first one. Maybe I can help. Will try.

 

Dawn

[pathfinder]

memom

I hear your pain and broken heart and my heart goes out to you and your family.

I have 16yrs old son on the same boat as yours and with pretty much same history as yours. My son had blood test May 27th ( one day after my mother passed away but I still kept my appt at the medical center ) It was my son's ped trying to find a way to have insurance cover my son's IVIG, I think.

I have not heard from the medical center since then and therefore I assume that there is not going to be any IVIG soon. ( But I still send my many thanks to my son's ped for believing in pandas and going out of his way to fight for my son.)

I still think we are the lucky ones regardless our struggles at the moment for we know what is wrong with our kids and that in itself is comfort as we have a road map in front of us instead of blankness. ( I went through so much just to find out what was going on with my son last 8 years)

Let's not lose our hopes and believe in tomorrow.

My heart is with you all the way

Michelle

[tpotter]

If IowaDawn doesn't have the answer for you, try writing a letter to your State Insurance Commission. When insurance companies get letters from them (even though the commission says that you have to appeal it, again), the insurance company usually caves (they don't feel like messing with the insurance commission (I've done it twice for other things, and it worked like a charm.) It might be worth a try.

 

I so feel your heartache. My boys are older, too (14 and 17), and we, too have been on this path a very long time, and only recently found out what was wrong. I will keep you in my prayers that you find a quick way out of this mire. These children deserve so much more, and it's just not fair that we have to fight so hard. Hopefully, we can find faith in the fact that we are paving the way for future parents of these kids, and in another 5 - 10 years, PANDAS will be treated quickly, easily, and by many, many doctors with no fight from insurance! That's what I keep telling myself as I fight to get tx for my children.

[saidie10]

I am getting tired. I feel more and more like a salmon loosing the battle to get upstream. The rushing constant river of Pandas has been pushing me further and further down. I have been trying to go against the tide for years now. Pandas is winning. We have tried everything everyone has suggested, antibiotics, ssri's, steroids, surgery, dietary supplements, nutritional changes, and a year of cbt. Now the final step after many failures and partial successes, is IVIG (per Dr. K. and Dr. B.). I got the letter from the BCBS appeals today refusing coverage again. I have not yet been able to speak to Dr. B.'s office (closed today). I just want to cry. At 17 years old (18 next month), we may need more than one dose with some suggestion of limited likelyhood of cure/remission. We repeated her pneumotiter titers and she only passed 4 of the 23 serotypes yet because she has only had chronic asthma, allergies, throat infections and respiratory infections, there is not enough efidence to cover IVIG. They were very clear that IVIG is not approved for PANDAS as there is no proof of effectiveness. So now, where to go. I have 2 kids struggling right now. My heart is broken. My spirit is spent. My fight is weak. I am tired.......Can I afford maybe as much at $30,000 for 2 rounds of IVIG for only one of my 2 struggling kids.....I don't have the answer right now.

 

I know I am not alone. There are so many of us in the same place. I am jealous for those families like Sammy's where it was as simple as antibiotics. Two years ago I was so hopeful. I am now loosing hope that I will ever have a normal family again, that my kids will feel good again and be able to live a normal young adult life. The stress on my 28 year marriage is hard. The burdon of being the only adult to hold the torch for these kids has become overwhelming.

 

Sorry for the downer words, but there was no more room for these feelings inside, I needed to let them out.

 

memom

 

I have never yet you, yet I sit hear shedding a tear for you. This is truly shameful what you guys are going through. I hope you can find the strength to continue fighting and remember, those children are SO BLESSED to have you. Sending prayers your way...

[memom]

Thank you all for your kind words. I guess today is a new day and I have more energy to continue the fight.

 

I am greatful for the support and wisdom in this board.

 

Ellie

[wornoutmom]

Ellie:

 

I have been in your shoes and think its ok to take a few days to grieve all this unfairness. We shouldn't have to fight for our children's health. In my mind, if a doctor prescribes, insurance should cover - period. Do they think a doctor is going to prescribe IVIG lightly???!! You will find the strength to rally again. Keep appealing. Check out the Coram centers to see if there is one near you. They sold us the drug at wholesale and only charged us only $180 for what turned out to be almost 14 hours of nursing care. And they let us use our credit card to pay. They do this out of compassion for self pay clients. Also, our ped has made an attempt to the insurance to cover the drug cost, rather than the IVIG infusion, which apparently is a whole other set of forms, so we'll see how that flies. Contact your HR dept. Ours offerred to get involved once the appeals have been exhausted.

[melanie]

Ellie

 

I have BCBS too.They turned us down too.Then I contacted a sennior specialist of pediatrics at BCBS.She was so helpful.Ask for a account specialist, she got us approved and danny is 16.

 

Melanie