Must VENT

[amyjoy]

Gosh, got a letter yesterday from our insurance Anthem BC, saying they are referring us back to California Children's Services for my DS IVIG, which were the ones who referred us to Anthem in the first place as he does not qualify for services under CCS. Another circle and delay. Unfortunately my DS happened to be the one opening the letter as he saw it was from BC and he knows we are waiting for an OK from them since every single day he says mom when am i getting my IVIG and i say soon, sweetest darling child i'm working on it. So he sat on the floor in the kitchen and sobbed and said "why doesn't anyone love me enough to help me?" i felt like dying on the spot. i am a single mom, have spent my entire life savings on his care these 5-6 years, and now that we have a diagnosis and even a treatment we no longer have the funds. This is just wrong, it is wrong. I have done everything i know to raise enough $ but our credit isn't good enough anymore to borrow it. So my DS said that he / we must write a letter to my ex-inlaws, his grandparents and aunt and uncles, all of means but who have not been willing to help us becuase i think they are angry at my son's dad for leaving us, to ask them if we can borrow the money. His plan is to write the letter when he gets back from school today, to remind them that "love is a verb".

 

Meanwhile i did talk with anthem this morning and the person managing my DS case was very kind and understanding that we've been turned down twice already for CCS but thinks we still have to go through the process. But it did sound like she was going to go to bat for us.

 

Its like, life just stops for these moments. I want to cure my son, your children, all of our children my DS. Once we get him treated, i'm going to start a treatment fund for all of our children and take it to the highest possible levels, i want to rock this lazy crazy dollar driven world...I guess i sound pretty angry right now, and I am, and thank you i know someone out there will understand and help me feel less crazy and less alone.

 

amy

[Priscilla]

I am sorry you are going thru this, it is hard enough without thinking about the financial strain. I will join in your effort to start a fund for these children. PM me if you want to talk more.

[Sylvia]

I know your son is not on the autism spectrum, but there are several groups of parents that are really good at obtaining fair treatment from insurance companies that may be able to give you some tips. The one that pops into my head first is:

http://www.insurancehelpforautism.com/index.html

 

Someone there may be able to help, and show you how to speed up the process. That site deals mostly with ABA and speech therapy denials, but I think they may be able to help in getting other therapies through the appeals process. There are also some good links in the links section.

 

I am so sorry this is happening, and how this is affecting your son. No child should have to go through this.

 

 

Gosh, got a letter yesterday from our insurance Anthem BC, saying they are referring us back to California Children's Services for my DS IVIG, which were the ones who referred us to Anthem in the first place as he does not qualify for services under CCS. Another circle and delay. Unfortunately my DS happened to be the one opening the letter as he saw it was from BC and he knows we are waiting for an OK from them since every single day he says mom when am i getting my IVIG and i say soon, sweetest darling child i'm working on it. So he sat on the floor in the kitchen and sobbed and said "why doesn't anyone love me enough to help me?" i felt like dying on the spot. i am a single mom, have spent my entire life savings on his care these 5-6 years, and now that we have a diagnosis and even a treatment we no longer have the funds. This is just wrong, it is wrong. I have done everything i know to raise enough $ but our credit isn't good enough anymore to borrow it. So my DS said that he / we must write a letter to my ex-inlaws, his grandparents and aunt and uncles, all of means but who have not been willing to help us becuase i think they are angry at my son's dad for leaving us, to ask them if we can borrow the money. His plan is to write the letter when he gets back from school today, to remind them that "love is a verb".

 

Meanwhile i did talk with anthem this morning and the person managing my DS case was very kind and understanding that we've been turned down twice already for CCS but thinks we still have to go through the process. But it did sound like she was going to go to bat for us.

 

Its like, life just stops for these moments. I want to cure my son, your children, all of our children my DS. Once we get him treated, i'm going to start a treatment fund for all of our children and take it to the highest possible levels, i want to rock this lazy crazy dollar driven world...I guess i sound pretty angry right now, and I am, and thank you i know someone out there will understand and help me feel less crazy and less alone.

 

amy

[thereishope]

I have so many family stories I can share. Not only with my child and PANDAS, but just what I experienced as a child with my dad's side of the family post divorce. Some families will use money, gifts, etc as a bargaining tool or as a sense of power. Your son is a strong person to write to them and ask. Family shouldn't have to ask, if they know the circumstances. I'm proud of him!

 

Yes, I agree, it's an awful feeling to know that it may be money that stands in the way of a child getting better. It's sad that it's part of our messed up lives and society.

 

 

Gosh, got a letter yesterday from our insurance Anthem BC, saying they are referring us back to California Children's Services for my DS IVIG, which were the ones who referred us to Anthem in the first place as he does not qualify for services under CCS. Another circle and delay. Unfortunately my DS happened to be the one opening the letter as he saw it was from BC and he knows we are waiting for an OK from them since every single day he says mom when am i getting my IVIG and i say soon, sweetest darling child i'm working on it. So he sat on the floor in the kitchen and sobbed and said "why doesn't anyone love me enough to help me?" i felt like dying on the spot. i am a single mom, have spent my entire life savings on his care these 5-6 years, and now that we have a diagnosis and even a treatment we no longer have the funds. This is just wrong, it is wrong. I have done everything i know to raise enough $ but our credit isn't good enough anymore to borrow it. So my DS said that he / we must write a letter to my ex-inlaws, his grandparents and aunt and uncles, all of means but who have not been willing to help us becuase i think they are angry at my son's dad for leaving us, to ask them if we can borrow the money. His plan is to write the letter when he gets back from school today, to remind them that "love is a verb".

 

Meanwhile i did talk with anthem this morning and the person managing my DS case was very kind and understanding that we've been turned down twice already for CCS but thinks we still have to go through the process. But it did sound like she was going to go to bat for us.

 

Its like, life just stops for these moments. I want to cure my son, your children, all of our children my DS. Once we get him treated, i'm going to start a treatment fund for all of our children and take it to the highest possible levels, i want to rock this lazy crazy dollar driven world...I guess i sound pretty angry right now, and I am, and thank you i know someone out there will understand and help me feel less crazy and less alone.

 

amy

[tpotter]

Oh how I totally agree with what you're saying. We've been through denial after denial for the past 4 months (but should have actually gotten tx 6 months ago. I am so frustrated and sad. I have even started crying on the telephone when talking with these people. I think I've figured out that they deny just because they know they can get away with it in the long run unless you have the money and time to fight them through the court system (our State Insurance Commission told me I should hire a lawyer. When I told her that I had spent $30K on a lawyer to fight the school district for 3 years, and didn't have any money left, she just repeated that I should hire a lawyer...I really don't think she wants to go to the effort.) Our insurance company just upheld the denial on a 2nd level appeal, even though Dr. B. is trying to treat for an immune deficiency (they're still claiming that it's "experimental,"...there's no way that IVIG for immune deficiency is "experimental", and they know it.)

 

I give your child an awful lot of credit. My son wrote a letter to his dr the other day asking for help. It takes a lot for these kids to feel as awful as they do, but still say and write as beautifully as they do. No one should have to suffer as much as they have been suffering.

 

I think we should all keep each other in our prayers, and just keep fighting this. I can't wait until the IVIG trial is over with the NIMH, because that will open everything up (unless insurance comes up with something else!)

[EmersonAilidh]

AmyJoy ~ Your story makes my heart ache, but just remember that's what meant to be will be!!! Is DS verbal or open about his P.A.N.D.A.S.? I'm one of three patients (that I've seen) on this forum, & I talk to kiddos pretty often if they're willing.

Edited September 26, 2010 by EmersonAilidh