Monday, September 29, 2008

Just struggling

Look at this old picture I found!!!

I am so overwhelmed today as I think about omitting any milk or milk product from Sam's diet. Do you realize how much milk is in everything!?!?!?! I am also feeling quite guilty that I didn't think about this before and he had to have the scopes done and go through so much. If I would have been more on top of things then maybe we wouldn't have had to go through so much with him.
Yesterday was Matt and my sixth anniversary! I can't even believe it has been that long. Looking back over the last six years, is a constant reminder to me that even through the struggles God has ALWAYS been there. We have had so much to deal with these first few years, and now with Sam it is proving to continue. I know HE is with us, but sometimes I just feel so defeated in this situation.
We see the nutritionist this week and I am praying that we get some answers and that Sam will tolerate this whole dairy free diet.
Plesae say some prayers for my friend. She has three chronically ill children and her husband just left her! Pray for strength, hope, joy, a better financial situation and for her kids health. Thanks

2 comments:

abby said...

HI Sammy's Mommy,

Thanks for stopping by Hallie's blog...I haven't had a chance to read through your blog yet (was pretty busy chasing an active toddler today) but from what you said, it does sound like a milk protein problem to me. We figured out that Hallie had food allergies--in her case, lots of them--pretty much through a process of elimination. At first she was diagnosed with reflux, but the reflux meds were not helping much. Then she was diagnosed with a motility (stomach emptying) disorder (slowness of emptying) and put on more drugs. Those didn't help much either. She kept vomiting, retching, and not sleeping well. She also had allergy shiners, ongoing ear infections and was food averse and getting worse. Her vomiting hit the worst stage when we ran out of breast milk, which we were mixing with Enfamil AR (which is a reflux formula). She was on straight pediasure, and then nutren jr. and easily vomiting 2-5 times per day. She wouldn't eat solids at all, and when we finally did start solids, she couldn't keep them down most of the time. We were at wit's end and had tested her for obstructions and everything else under the sun. That was when we took her off of a milk based formula (we had tried the more broken down kinds like nutramigen early on with no improvement) and decided to try out goat milk. Within a few days things were much improved. Then when we got rid of dairy altogether, things got even better. But were not yet perfect. We then took Hallie to an allergist at the Children's Hospital of Philadelphia who diagnosed her with non IgE mediated food allergies (so they don't show up on regular blood and scratch tests). She suggested an elimination diet and adding in one food at a time VERY slowly to see if she tolerated it. That's what we're doing now, and she rarely vomits unless we trial her on a food that is unsafe for her (which has turned out to be most foods. She is allergic to soy, egg, wheat, barley, rice, buckwheat, beef and we've not checked out much else other than her safe foods of pear, apple, plum, prune, goat milk stuff, potatoes and probably bananas). It's a maddening process but she is SOOOO much better---she is growing better, sleeping more soundly, never sick, and happy and hitting milestones on her new restricted diet. We don't know whether this is a temporary or forever kind of thing and how many foods she'll be able to eat later on. She still has eating issues---she never transitioned to textured foods and so is mostly on baby food still at age 28 months. But she is much much better than she's been.

I'd suggest clicking on the link to POFAK on our blog, getting a copy of Scott Sicherer's excellent book on food allergies (forget the name right now, but just google him at Amazon), and seeing a very good allergist. If you are dealing with non IGE mediated allergies, you want someone who has specialized in these. POFAK may have some recommendations in your area (there are parents from all over the place). And feel free to have Steph give you my email if you have any questions and want to touch base with me directly.

Good luck with this---it totally sucks but at least you are getting to the bottom of Sammy's issues, and that's what counts!

abby said...

When they scoped Sammy, did they test his colon (and rest of his GI tract) for eosinophils? There's a class of diseases called Eosiniphilic disorders (esophagitis, colitis, gastritis) where the body attacks food as if it is a poison. This is an immune related problem (they think there is T-cell interaction...I am not a scientist so I only understand part of this equation) and it can present with blood in the stool, failure to thrive, stomach aches, etc. What you described sounds to me consistent with this, as does Sammy's marked preference for some foods over others. This is a pretty new class of diseases (only diagnosed as such over the past 10 years). We've gone back and forth on whether to pursue whether Hallie has something along this line. She had a clean scope of the esophagus (we think! we never saw a biopsy report and have less than full faith in her GI), and right now we're managing things okay so we're not pushing it. But I'd definitely ask an allergist and/or GI about this.