Tuesday, April 20, 2010

Carson update

We've had two big meetings for Carson this week (whew, and it's only Tuesday).
1. ECI came for the formal evaluation. There were two therapists: a speech therapist and a developmental therapist. Based on the evaluation (3.5 hours!) they've decided that Carson will receive developmental therapy once a week and speech therapy twice a month. Additionally, they have requested for an occupational therapist to come and do an evaluation because they believe he has Sensory Integration Disorder (Alex had this as well). As a mom, I have very mixed feelings. I am so incredibly thankful and blessed to have an agency that is willing to come and help us! They are coming to our home (so I don't have to expose Carson in childcare environments) and for the first six months, we will not pay for anything. WOW! The hard part for me was answering 350 questions about my son, and not liking my answers. Ultimately, the fact that he is receiving so much help shows just how much help he needs. Of course, that is a hard pill to swallow. It's scary to hear "delays and disorders"...but again, I am just grateful for the help. Bring it on!

2. Carson went back to the Gonino clinic today to review the test results from four weeks ago. An exciting report: he is absorbing almost all of the essential vitamins needed for proper development! The first time we tested him (prior to the diet change and adding the supplements), he was not absorbing ANY vitamins at all. This time his scores were outstanding. There were only two vitamin deficiencies and we are able to add those to our regime (after giving eight rounds of meds in the morning...what is two more, really?!) So that is good news!
The frustrating news....his IgE tests results left us with more questions and no answers. Basically, we learned that Carson doesn't have TRUE food allergies (he reacts poorly to so many foods b/c he has leaky gut-- which is a food intolerance) but his overall allergy score was "reactive." So the doctor said we know he is allergic to something, but just don't know what that is or why he is yet. So that means more testing. AHHH! They want to do a full environmental blood test on him next. That's fine, I just wanted an answer today. Grr.
He also wants to run a blood test to see if he has the gene that is linked to Celiac disease. It is $750 and not covered by insurance! I really want to have this test done because it would tell us a lot for his future....if he does have the gene, we know that we can never expose him to gluten. We aren't doing that now, and will continue to keep him off gluten. But, we are healing his gut, and the hope is that he will "outgrow" the food intolerance. If he has Celiac and it goes undiagnosed, it will undo all of the healing we are working so hard to achieve. He also said it is highly genetic and we could assume Alex has it too and we would know to eliminate gluten for all of us. Easier said than done :)
Just say a prayer that we are able to have this test conducted at some point. It would give me peace to know either way.

He said Carson's pancreas and A1C levels (indicators of diabetes) look great. Yeah! So not a whole lot is changing. This is the current plan:
1. Kill the fungus and mold (check)
2. Cleanse (we are starting him on a vitamin C cleanse)
3. Starve the bacteria (we've done this by cleaning out his diet entirely)
4. Recede (using probiotics)
5. Restore (using digestive enzymes to heal the gut)

We are on track to healing our little guy...it's just going to take longer and more blood tests than I had hoped. But again, my PLAN has nothing to do with God's big picture. I do hope and believe that between the therapy sessions and diet change and supplements, we will have a "healthy and normal" child....someday!
Thank you to all who are reading this, praying for us and care so much about our family. I love you all!

5 comments:

Nicole Fields said...

Praying hard for you guys. Yeah that the change in diet is working and he is absorbing the nutrients he needs! I will be praying that the celiac test comes back negative. Doesn't that just irritate the crud out of you that insurance doesn't cover that?! Arrrg! Love ya'll!

shannon houlihan said...

I will also pray that the celiac test comes back negative! love you Mel!!

Ebes said...

Had a friend who used eci for therapy for her son on walking. They were great and had him walking in 3 months. Praying for you and the upcoming tests. And Carson is "normal" (and getting healthy) The rest of us are just a little off. :) hugs to the man and to you!!

Lori Leigh said...

Mel! We will be praying for you guys! You are being amazing parents and I know that God is going to bless that!

Sally said...

wow!!!! you are getting there mel!!! Praise god for some more answers...and we'll continue to pray over more answers to come, specifically, what exactly he's allergic to!!! Love you!!!