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Another Diagnosis

Maggs - 08:47pm Apr 5, 2009 EST
My Beautiful and Spunky Nicole (27 weeker, 1lb 6 ozs)

Hi Moms, I just need to vent and maybe pick up some advice on how to deal with yet another diagnosis. I've been doing pretty well the last few months despite juggling my daughter's many health issues, including a long winter that included a hospitalization for RSV/pneumonia followed by stomach flu and cold after cold. Almost 3 years later, and we are still dealing with BPD, reflux, constipation and possibly malabsorption, sensory issues, developmental delays, food allergies, and other things. Somehow I got to a point where I could handle most of it and was starting to accept where we were and the fact that I just had to give her time to grow out of things. Then I noticed a strange bald spot on her head and figured out she is developing alopecia areata. It has really thrown me for a loop. I found a few more, and every day I see the little bald spots growing and her very thin hair growing thinner in certain areas. It is not that noticable yet, and I hope it won't get too bad, but it is hitting me like a ton of bricks. It is an autoimmune disease so of course I'm wondering what I could have done--too many steroids? too many meds? too many supplements? It just doesn't seem possilbe that we could be thrown another whammy right now when we have as much as we can handle. I just don't know how to process one more diagnosis into my brain. It scares me that there will always be another one lurking around the corner. I so badly want to be moving forward. Being stuck with many of the health issues was hard enough. But this makes me feel like we are going backwards. Any thoughts or advice?

Thanks!

Maggs

(older msg: 5)

esg1 - Apr 14, 2009 1:19 pm (#6 Total: 7)

Abigail's Mom (29 weeks, 3/21/05)

Hi Maggs,

There are some storybooks about kids with differneces written by a pediatrician, I can look for the name. We found some about a boy with Asthma b/c my daughter takes nebulizer treatments at daycare every day and was fighting it. The nutritionist told us about one or two for food allergies, I think one was called, "why can't I eat that". I remember there was a swimmer in the Olympics (I think '96 but I could be off) Stacy something who had alopecia and never wore a wig etc. She might have a website now. That is all I have for now, except support. It sounds like you could really use a weekend away but I can't answer that for you.

Take care and we are here for you.
Ellen

Dr_Stabone - Apr 28, 2009 9:05 am (#7 Total: 7)

talking about "differences"

Hi Maggs,

My daughter doesn't have the same issues as yours, but she has CP and is nearly 4 and does not walk yet. She has AFOs, a walker, crutches, and when she started school she had a speech delay/impediment. Her eyes were also crossed.
I was very worried about teasing...I wanted to find a way to help my daughter have a high self-esteem at a young age, but I didn't know how. Besides being encouraging, good parent, open and honest, etc.
I try not to tell my daughter that there is something "wrong" with her. I do tell her that she moves differently and with hard work she will get faster/stronger/more able to do "x". She responds well to that. We are also fortunate to have landed ourselves in a great pre-K program at public school--her teacher is fantastic. I was worried about the other kids, but ALL OF THEM (3-5) treat my daughter just like any other kid. I was amazed that actually happened, but it was true. These kids come from all sorts of different families, but the result was universal--her peers were great to her and their differences really didn't matter much. In my experience, most of the painful interactions actually come from ADULTS saying the wrong thing.

As for keeping yourself together...oh boy. When my daughter was 9 months old and the bad news kept pouring in, I told myself that I'd probably get bad news from every doctor visit for at least a year. I was right. Luckily for us, my husband and I fell apart at different times, so we could be a rock for each other. I also have mental health counseling at work--if you have access to that, TAKE IT.

My best to you and your family,
Amy
www.elenadoodle.blogspot.com

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