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I don't wanna go!

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littletingoddess

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I'm waiting on my husband to get home, then the three of us, husband, daughter and I are off on a 3 hour drive to lovely Detroit. I don't wanna go.

 

A little background... my daughter was born with a rare metabolic disorder called Maple Syrup Urine Disease.

It was diagnosed through newborn screening. From when she was a week old to about a year ago, her specialized care was through a clinic at U of Michigan. She had the same neurologist, same dietitians, for 7 years of her life, and they literally saved her life more than once. I totally trusted and liked them, and we had a very good relationship.

 

In comes the mighty state of Michigan... because of money, and basic governmental bullshit, they decided to change EVERYTHING. They decide that all patients who are seen for diseases caught by newborn screening have to go to a clinic at Detroit Children's Hospital. All new doctors, staff, everything. And they haven't been treating MSUD patients as long as the previous doctor.

 

Could we still go to the doctors at U of M? Sure... but the state wouldn't provide the medical formula that my daughter needs to live if we do. And that would be 1/5th of our income!

 

So...I'm begrudingly making the trek down to a hospital I've never visited, to see doctors I don't know, and somehow trust them to know what's best for my daughter.

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As an update... even though the drive was not fun... the new staff we're dealing with were all very nice and very well informed. So... I guess my fears are put to rest. Thank goodness!

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Let us know more... I'm glad things went well, and I'm hoping that things are still working out well. How old is your little girl? That is so sad when the wee ones have health conditions. It must be difficult as hell, being the parent.

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Thanks, valentina.

 

She's 8, 9 in July. The metabolic disorder she has, Maple Syrup Urine Disease, is really rare, one in 225.000 births. Basically, she can't metabolize protein, and if too much of a certain amino acid builds up in her body, her brain swells, and it can be fatal. So she has to follow a low protein diet (she can have about 8 gm of protein a day) and has a medical formula she has to drink. You would have no idea of any of this by just looking at her. She's just as active as any other kid. But, she does have learning disabilities and speech impairment from brain damage she incurred in the first week of life.

 

Her life was saved by newborn screening. Every baby, at 24 hours old, gets a prick in the heel, and that blood is tested for various disease, like PKU, etc. When she was born, on 21 states were even screening for MSUD. Thank God and every other diety out there that we live in Michigan, a state that was! By the time she was a week old, and was diagnosed, she was comatose and had lost the suck/swallow reflex.

 

I think I was so nervous because I really am a momma bear when it comes to my little "cub". I'm such a passive person, but when it comes to her, I could probably take on just about anyone. LOL It's hard to trust people you don't know with your child's life. But, I have much more confidence in the new clinic now.

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