Hopkins report

It took me 1 hr 45 minutes to get to the doctor's at Johns Hopkins and 2 hours to get back... not to mention the looong wait there before we even got to see the doctor. Iit's been a looong day.

The doctor was great though, and really helped to put my mind at ease. He said that Ryan will need to stay on formula for most, if not all, of his second year (instead of stopping in a month and switching to milk, be it soy, rice, whatever). He has some patients that are 3 and even 7 that still take formula as part of their nutrition, but that's rare. He said that it may be hard to transition him from the bottle at the "normal age" and he may not give it up until he's through with the formula as his main nutrition.

Ryan had his blood drawn to get more accurate results to the allergy test since skin tests are contraindicated for patients with eczema (who knew?! we had a skin test last time even though his skin was sooooo bad). So we should know in 2 weeks what he is REALLY allergic too and, hopefully, be able to start introducing new foods - other than the 6 he eats right now. The plebotomist was awful. For most of the time my head was turned so I couldn't/wouldn't see but I looked over from time to time and saw that she stuck the needle in and was then fishing around for the vein while it was in my poor baby's arm. Then since she couldn't find it in his left arm she went fishing again in his right. He was SCREAMING at the top of his lungs. And at the end of it all he was so pale and then blotchy red and sweaty. What a tough day he had! I gave him extra hugs and kisses when it was all over.

The doctor wasn't worried about his limited food texture tolerance... he said it's quite normal for patients with reflux and severe food allergies to have problems with textures in food up until they're 3 so I may need to be carrying around baby food with me for a long time to come... and to go on a food strike (which we've had over the past few days). Since reflux/allergy kids have such a negative association with foods they often protest.

So this is more than you probably needed or wanted to know about this whole thing (except for you, Mom!). And we get to go back in a year for re-testing to see if he's outgrown any of it. I'll keep my fingers crossed.


Blogger Carrie Stephens said...

WOW lisa, what an experience for such a little guy to have to go through! I hope that he outgrows it, i can imagine that it is pretty tough for both of you!

3:03 PM  
Blogger Di said...

Awwwww.....he's such a precious little guy! So sorry this is his (and your) portion for now, but it sure sounds like he has an extra special mommie!

6:07 PM  
Blogger Jenn said...

Lisa, wow! I'm glad to know more of his story. My sister is an asthmatic since birth and had horrible excema and food allergies as well. It's interesting how far medicine has come.

About the phlebotomist, yikes!!! As a mother that is so hard to take. My daughter has a condition that requires blood draws frequently--she's four and you would think that going through this since birth would make it less traumatic...uh...not so far. Painful every darn time. I'm sending you a ((hug)) and hoping you get some helpful answers soon.

1:15 AM  

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