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Old 11-30-2012, 08:23 PM   #11
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Re: Well, it's official...

Good luck mama! An autism diagnosis should open the door for OT, which you could spend part of the sessions doing feeding therapy, and part doing other therapies.

New diagnoses are scary, but they are just a label. At the end of the day, he's still the same kid he was before the label. My son has a ton of labels, and I have to literally remind myself that 6 months ago, he didn't have any of them, and he was just Ledger. The label shouldn't change how I feel about him. I struggle with that sometimes, though.

Also, an autism diagnosis may lead to him being able to qualify for disability medicaid, which would cover your therapy.

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Old 12-01-2012, 11:02 PM   #12
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Re: Well, it's official...

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I have been following your story and I am so, so sorry for what you have been going through. I believe we were in the same due date club. Anyways, I can't imagine how frustrating that is, but I hope you get some answers and help soon
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No suggestions, just sending prayers and hugs. Can't imagine how hard that is, and it shouldn't be.
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Thank you. It's nice just to have people who will listen. It's hard going through this (what seems like) all alone.

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Good luck mama! An autism diagnosis should open the door for OT, which you could spend part of the sessions doing feeding therapy, and part doing other therapies.

New diagnoses are scary, but they are just a label. At the end of the day, he's still the same kid he was before the label. My son has a ton of labels, and I have to literally remind myself that 6 months ago, he didn't have any of them, and he was just Ledger. The label shouldn't change how I feel about him. I struggle with that sometimes, though.

Also, an autism diagnosis may lead to him being able to qualify for disability medicaid, which would cover your therapy.
I'm not scared of the label myself, just what it means for him. He already has a lot on his plate, health-wise...this is just one more thing and it's overwhelming. If he is, he is - there is nothing I can or would change about it. But label chasing is a tough business and has left us confused and frustrated already, I just hate to put him through more of that. Does that make sense?
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Old 12-05-2012, 12:19 PM   #13
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Re: Well, it's official...

Update: DS's therapist is resubmitting her request, along with info from Owen's pediatrician, to see if they can overturn the insurance company's decision. But the saddest part is that I've come to the realization that even if they DO decide to cover it, we can't afford the copays anyway.

I will cross my fingers and toes that DSCC is able to step in somehow, otherwise my son is going to just fall off the radar I guess.
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Old 12-10-2012, 05:41 PM   #14
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How old is he? Are you working with EI in your state? Have you looked into supplemental programs in your state? What heart defect does your son have? I saw someone else say they have followed your story but i have not seen it. My oldest has a Chd, and I am pretty active in the heart community, so I can ask around for info if you would like.

We recently Had an issue with our supplemental insurance not covering pt, speech and OT. I sent in a letter of appeal along with many articles I had found that said heart kids can have developmental delays due to their treatment. I also included letters from his cardio, pedi and drs from the clinic he has his surgeries at.
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Old 12-12-2012, 12:02 AM   #15
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How old is he? Are you working with EI in your state? Have you looked into supplemental programs in your state? What heart defect does your son have? I saw someone else say they have followed your story but i have not seen it. My oldest has a Chd, and I am pretty active in the heart community, so I can ask around for info if you would like.

We recently Had an issue with our supplemental insurance not covering pt, speech and OT. I sent in a letter of appeal along with many articles I had found that said heart kids can have developmental delays due to their treatment. I also included letters from his cardio, pedi and drs from the clinic he has his surgeries at.
He just turned 3 last month, so that's when his EI services ended as well. The EI coordinator is the person who contacted DSCC for me...I'm still hoping like heck that they pull through but they are still waiting on some paperwork before sending it for approval. I don't know of any other supplemental programs here in IL that he qualifies for aside from them - part of the problem is the complexity of his situation.

My son has a right aortic arch, which is what is the root cause of his inability to eat solid foods (basically, his aorta is where his esophagus should be). He also has a bicuspid aortic valve, and a small VSD, along with some airway abnormalities as well (there is a link in my siggy if you want to read more about him!). DSCC has NO problem providing us coverage for anything heart-related - which is great! - but they refused coverage for his OT/SLP therapy because they don't understand the connection between his heart and his eating difficulties. The first round of papers we submitted were denied, so we had his cardiologist and his therapists send in everything they've got and now we are just playing the waiting game... Same with our primary insurance, except that is more complicated yet because they feel as though my son's therapy is now merely maintenance and that he is no longer progressing, so we are trying to figure out how to prove that he is making progress so they will open up benefits again.

If you can think of any other resources I'm missing out on in the CHD community, please please let me know - I'm all ears! (er, eyes?)
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Old 12-12-2012, 04:38 AM   #16
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Update: DS's therapist is resubmitting her request, along with info from Owen's pediatrician, to see if they can overturn the insurance company's decision. But the saddest part is that I've come to the realization that even if they DO decide to cover it, we can't afford the copays anyway.

I will cross my fingers and toes that DSCC is able to step in somehow, otherwise my son is going to just fall off the radar I guess.
Does one of your employers offer a flex spending account? That really helps me with our medical bills
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Old 01-30-2013, 07:15 PM   #17
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Re: Well, it's official...

big UGHH I feel sick for you. My son, aspergers 5yr old, has severe sensory eating issues. My insurance refuses to pay anything ASD coded. He is tiny for his age and the pediatrician sent him to an endocrinologist. The endo said his bone age is that of a 3 year old- there were definite periods of prolonged time with no growth. All that and his hormones tested all normal- so no treatment.

I know that it is nutritional related! Yet my insurance still refuses to cover OT becuase somehow this connection is not being made. Its so frustrating...
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Old 01-31-2013, 07:47 AM   #18
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Re: Well, it's official...

We go through many 'peer reviews' with our insurance company. The doctor ordering has to get on the phone and explain why xyz is medically necessary, etc. It is a pain and so horrible to have to fight this fight when you are already dealing with an ill child. But, if your boy has a diagnosis of 'failure to thrive' or the like, I can't see how any insurance company can reject the claims. I am not familiar with the agency you talk about... I don't have that in our state or any state I have lived in but wouldn't the heart doctor be able to write a letter to this agency explaining the issue with feeding and that it is medically necessary to treat?! Children are supposed to be growing so anything termed 'maintenance' in regard to a child's eating is simply wrong. Call the heart doctors! They should be more then willing to do a peer review with your insurance company and put something in writing for the state program. Unfortunately, many things don't fall into place without a fight. So sorry you have this to worry about too.
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Old 01-31-2013, 09:43 AM   #19
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Re: Well, it's official...

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I am not familiar with the agency you talk about... I don't have that in our state or any state I have lived in but wouldn't the heart doctor be able to write a letter to this agency explaining the issue with feeding and that it is medically necessary to treat?!
The supplemental state health program is part of a federal initiative called Title V. Here is some info about it. Every state has their own version. I'm in Alabama also and our state version is called Children's Rehabilitation Services. In Alabama the child has to have a qualifying medical condition and either be below family income limit or be a Medicaid recipient. When I lived in Florida their program was called Children's Medical Services.
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Old 01-31-2013, 10:54 AM   #20
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Re: Well, it's official...

We used CMS when we lived in Florida and we use CRS now. CRS will provide a case manager even if they do not supplement the intervention. Florida was much better, in my opinion.
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