Wednesday, February 29, 2012

Rare Disease Day - Feb 29th

Today, February 29th is Rare Disease Day.  It's been really humbling to read all the information running across my facebook news feed about the thousands of rare diseases that afflict so many people.  Makes  me feel lucky that Cutie Pie is only dealing with food issues.  It sometimes seems like an insurmountable battle for her, but in reality we are surviving and surviving well. 

It's pretty fitting that we received a letter in the mail from Cutie Pie's allergist today.  He sent us a copy of the letter he was sending to our pediatrician so we can all be on the same page with her medical care.  It was very spelled out about what his findings were (most likely has FPIES) and why and our plan of action.  However, it does say on there that we would hold off introducing any solids until she was a year old and that's not what we talked about at his office.  But with taking 2 weeks to trial each new food, at this rate if she passes each food between now and her birthday she would have a whopping 9 safe foods.  That's not a lot. 

Tomorrow we are seeing a chiropractor for the first time.  I found a pediatric certified chiropractor about 30 minutes from home.  My husband thinks it's kinda wacky and doesn't think they are going to do anything to actually help except collect a $20 co-pay but I'm optimistic.  I'm more on the holistic/crunchy side of medical beliefs so since "normal" modern medicine can't do anything for her, maybe a non-traditional approach will help.  I've read lots of success stories about chiropractic care helping with digestive issues and auto-immune disorders, so why not.  I'm not expecting a cure, but if they can help her little body accept at least ONE safe food I would be incredibly grateful. 

Speaking of safe foods, I think we are going to start food trails again later next week.  It's been almost a month since Cutie Pie has had anything other than breastmilk.  She has started waking up hungry(?) in the middle of the night and she'd put every little crumb of anything she can find in her mouth if I let her.  I've picked out avocado to try first - it has a lot of good fats and nutrients in it and I feel like it gives a little more of a punch than say green beans.  Avocado was the first food we ever tried with her back when she was 4 months old.  She didn't have any major reactions to it, so I hope we are at least safe from a full blown vomiting attack.  Plus, if it is a pass then she can start having it as finger foods!  Now THAT would be exciting!

No comments:

Post a Comment