adjusting

Megan - posted on 01/04/2009 ( 3 moms have responded )

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i am having a very hard time accepting and adjusting to having a baby with special needs. Em came right home after delivery and i thought i had a perfectly normal baby only to find out two weeks later that she had a whole bunch of troubles. we spent quite a bit of time in the hospital. this was very hard on my entire family. i also have a 5 yr old and i basically vanished one night and didn't come back for a month. she totally freaked out and started wetting her pants and everything. i could use any suggestions on how to cope as a family and as the primary caregiver for Em.

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Iridescent - posted on 01/05/2009

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They do now. She had to see several specialists to diagnose it, and once it was they realized it was very serious. She has OTC (ornithine transcarbamylase) Deficiency with hypoglycemia. She was fine immediately after birth, but had low blood sugar. As soon as they started formula feeds with her she was projectile vomiting everything so they thought she had a severe milk allergy. They changed to soy and she was still vomiting 75%. She was also aspirating and refluxing in the hospital. At the end of the first day she was screaming in pain, by the second she was unable to get the strength to cry, was having problems breathing and was on O2, and her heart rate was way high. They did lots of tests and scans and found nothing.



At 4 weeks she still wasn't holding down over 75% of her formula (she got 25%). We started Zantac and switched to Nutramigen (she held down 50%). She was developing ok. At 3 months she stopped being able to hold up her head and roll over, was eating even less (down to a total of 4 ounces intake per day). She was sleeping 22 hours per day. She was visibly gasping to breathe often and couldn't move her arms or legs. We saw several doctors over the next few months, most thought it was just benign congenital hypotonia. I asked for more testing so we saw another specialist that checked metabolic diseases. Her labs came back so off the should have been comatose if even alive and she was sent to Mayo Clinic urgent. It took another 6 weeks to diagnose - two of the possibilities were terminal, one was grim. She has the grim one - she may live, provided we watch her closely, she doesn't get too sick or hurt, etc.



It took a long time to finally get the diagnosis, and now that we have it we know she's a unique case. The two diseases she has almost never go together. They can't find the gene that we have that is abnormal, but they know it is there. She has testing every 3 months for about a week at a time, and usually a surgery at every one of those. When she's sick it's the hospital for a week to a month or more at a time. We're up front with the kids' teachers about it, (my oldest had a teacher last year that punished him for us not signing papers, but we were GONE!!! and she knew!) and we expect the school to work with us. None of us can control this. We tell the boys as much as they can understand without harming them (your sister is very sick, we don't know when we'll be back, we'll call every day).

Megan - posted on 01/05/2009

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one of the big things is that they can't seem to diagnose Em. do they know what is causing your daughters issues?

Iridescent - posted on 01/04/2009

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It's hard. That happened to us too, and there are weeks/months we are gone to care for our youngest while we have 4 others with friends. We ended up calling social services here and requesting a home health services evaluation and now my daughter gets nursing hours at home since she's not ever going to be healthy enough for day care. We make a point to explain what is going on with our older children so they know we are gone but will be back, call home every night, and explain we would do as much for them if they were sick instead. They have attitude changes but the person they stay with when we are gone is consistent with what we do when we are home as far as rules, and it helps.

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