I started a disability claim for my 2 daughter's in January.
I just received a request for them to visit their doctor's. For Physical exams, Respiratory tests & lab tests. Has anyone else had to go through mulitiple exams for a claim?

My daughter's have a rare genetic condition called Alagille Syndrome. It caused them to have multi-systemic disease. They have complex Heart Defects, lung & liver disease & characteristic facial features.
My 5 yr old daughter has endured 13 heart operations in 5 years. She's had donor valves replaced twice & a tricuspid valve repair. She's had bi-pass and circulatory arrest twice to repair her TOF/PA. (the name of her heart defect- Tetralogy of fallot w/ Pulmonary atresia) There are no doctors locally that can treat her- we travel out of state for surgeries. She has a limited life expectancy & delay's due to her health situation. This is a life-long condition that will require more surgeries. She gets speech services at her special education preschool. She did not walk or talk until after age 2. She has been addicted to the pain medications they gave her after open-heart surgeries, Requiring Methdone weans. She is on heart & liver medications daily. She has limited exercise tolerance. She has had her 2 front teeth removed due to damage from frequent intubations. This is the very short version!
My younger daughter has had 2 heart operations, and has just been scheduled another.

Anyone know what to expect from these exams, and do they tend to be favorable or unfavorable. (or neutral)??
I am upset about having to put the children through yet even more testing and appts. since they deal with so much already. They are very afraid of medical procedures since they have been through so much.
I am also concerned about how much understanding this MD will have about my daughters rare & complex disease........are they qualified to make medical determinations about children with a genetic syndrome if they have never heard of it? (that has been our experience with most general Doctors)

I feel like I have given them so much information from world class specialists & I'm unclear as to why they need more from a doctor who has no idea about Congenital Heart defects. (he's not even a pediatrician)?

I have even given reports from an in home evaluation by a state psychologist who came into our home to approve them for the medicaid waiver (they were approved- but there is a wait list of 5-7 yrs.) Plus, 2 school evaluations from 2 separate school districts- All confirming delays..........

Are these MD exams standard??? We didn't get a psych evaluation, just the medical exams. (3 appts)
Any help or advice is much appreciated!

:)

I started a disability claim for my 2 daughter's in January.
I just received a request for them to visit their doctor's. For Physical exams, Respiratory tests & lab tests. Has anyone else had to go through mulitiple exams for a claim?

I feel like I have given them so much information from world class specialists & I'm unclear as to why they need more from a doctor who has no idea about Congenital Heart defects. (he's not even a pediatrician)?


Are these MD exams standard??? We didn't get a psych evaluation, just the medical exams. (3 appts)
Any help or advice is much appreciated!

:)

My son just had an appointment with a government physician who hadn't a clue about my son's disability but we got a favorable report anyway. But, what I did was supply him with all of the information I thought he should have so that he could review it. My son said that he was reading it while he was examining my son (the physician was a psychiatrist). I spoke with my son's adjudicator and he said that my son might need to see another one of their physicians too.

In your situation, it almost seems like a no brainer that the examining physician is not going to give you an unfavorable report if what you say is true. This sounds definitely like you are eligible. I wouldn't worry too much about it (easy for me to say, I know).

Good luck.

Bobi

HI Miracle,
Just read your post and I am so sorry that you have to go thru so much to get help. I know my nephew has down syndrom and my sister has fought tooth and nail to get help and she always gets the run around, like there is no money for this, we dont deal with downs etc. I know it is very hard what you are going thru, my prayers are with you and your children, just remember you are their voice, so dont ever give up.
best of luck
cookie

Thank-you for the support & for sharing your experiences.

Bobi, My friends son who has the same heart defect (we met on an online support group) had to go to an evaluation w/ a child psychologist also & he did get approved for SSI. He did not have to go to Medical exams though. I was halfway prepared to talk w/ the psychologist & we've done so before with a favorable result- but we don't see the psychologist @ all. Then the person reviewing the case called and said we would need this medical exam. So, I was thinking an exam- But they have us scheduled at the hospital from 9:30 am till 1:45 pm, seeing several doctors & having tests. I would just think the information they need is already in their hands- but I have no idea what is going on & why they need so many more tests. One test they are asking for- A spirometry test is not generally given to children under 6. (mine are 5 and 1) I don't know.... I guess I have no choice but to go do the testing, but I am kind of upset that my children have to be put through tests that they will be scared of and that they will be exposed to all the germs in the hospital enviornment all day. (they are medically fragile and catch respiratory infections very easily. We avoid MANY public places for this reason) I just hope they can get some help- because so far, because of waiting lists- They haven't had assistance of any kind & I take them out of state for treatment on a regular basis & it's a strain financially. I am very glad your child got approved & there is a little bit of help in caring for his special concerns. ( I am correct in saying he got SSI- or just a favorable report from the pyschologist?) I hope it's the claim.

Cookie,
Thank-you also, for your kind words. I hope for good things for your sister & nephew.
I'm sure what you say is correct & they have been through a lot. I understand completely what you are saying & I couldn't agree more. I have been their voice and advocate & I will never stop fighting for them in every aspect. They are everything to me & I am so lucky to have them each day that I do....

Thanks very much!