Saturday, May 8, 2010

The kidney is connected to the....

So, I think in my lapse in blogging I didn't post the latest with Nate's health.  If you are a newer reader and don't know about Nate's Kidney problems, I invite you to brush up on the Dr's appointment that threw us for a loop HERE.  Prior to that Nate had developed Excessive thirst and urination (Polydipsia and Polyuria respectively) and went through tests to rule out various common problems with these symptoms.

So in March our 6th month recheck came up.  We repeated the ultrasound, repeated labs, and saw Dr. H.  Sadly instead of getting a BETTER idea as to what his problem is, we got a worse idea.

In good but shocking news his kidney size caught up to near normal!  However his urine still doesn't concentrate and the polyuria/polydipsia haven't resolved.  Dr H basically said that we are undoubtedly dealing with SOME primary renal disease, but he hasn't a CLUE what it is.  And that means we don't have a clue what his prognosis is at this point.  He said he was going to petition our insurance to let him do genetic testing since he's almost certain with my family history of having a grandmother with renal disease, myself having renal disease that there's some genetic link here, and if he can find it maybe he can figure Nathan out.  He was also going to consult some Dr in Michigan who is doing a study on disease of the cilia (tiny hairs in various organs that help things flow) and see what he thought.  Apparently he still thinks that somehow Nate's kidney and eye problems are related.

Well friends.  That was two months ago.  And I haven't heard a word from him since.

We have been bringing Nate to an ophthamologist in Minnesota for his eye care and I think we'll be taking his kidney care over there as well at this point.  However it's been a battle each time to beg our insurance to pay, since these docs are out of network.  At this point with the eyes we know he will need surgery probably around the end of the year, and we will probably end up paying for that out of pocket.  Can we pay for extensive renal care out of pocket too?  2016 can't come soon enough people.  I don't care what side of the healthcare debate you are on, have a kid who is chronically ill and then talk to me eh?


Heather B said...

You are in my thoughts...

I wanted to share with you, in the hopes that maybe it would help...

I live/work in Ohio and am a developmental specialist. I assist many families with dealing with insurance companies, appeals, medicaid, etc. I don't know if you are income eligible for SSI or not. If you are, I encourage you to apply. It would make things so much easier! If not, the other thing you can check into is a supplemental insurance through the state. In Ohio we have the Bureau for Children with Medical Handicaps - it goes up to age 21.

I wish you all the best of luck with your son's care.

Just a smalltown girl said...

Thank you for your input Heather. We have not looked into SSI at this point because kidney wise since we dont' have a diagnosis we are kind of at a standstill, I'm told SSI will want to determine his current level of disability before they would consider him, which at the moment is nil. His polydipsia polyuria don't really interfere with his life and his sodium wasting has never caused him to be all that ill. He's been fortunate to avoid illness that would make him dehydrated- that's when things will get icky for him but on a day to day basis we would consider him to be living a normal uninhibited life. Eye wise he's legally blind in one eye and would have to be in BOTH eyes to qualify.

Down the road we will definitely pursue whatever options he may qualify for, if for nothing else to make sure he can always have access to the medical care he needs.

Thanks again! Any info is helpful!