What a journey it has been for this family and getting my Parker back to the real Parker he is; who he has been struggling to be at his fullest for the last few years. I've learned so much from so many different Doctors,
dietitians, authors,
bloggers and research. It's all started to mold together and take hold. We have finally broken major ground in the medical mystery of the Parks, most recently from a very
knowledgeable dietitian. We've gone from "fixing" one problem to the next with this poor kid. First applying the "
band aid" of extra iron to a very fatigued, and medically depleted
ferritin/iron level. Saw results, then
flat lined. Uncovering the
celiac disease was HUGE, but only the beginning of getting him healed and back in the game of life. Along the way, we have struggled to make the diet right, safe enough for him, we've hit some snags, uncovered many sources of hidden gluten and were puzzled at why his symptoms seemed to be spiraling. We have a team of Dr.'s, ranging from the Sleep Medicine Dr. who treats him for his severe restless leg syndrome and regulates his much needed iron (compliments of the
celiac not absorbing it) and then we have our
Gastroenterologist who is overseeing his
celiac progress, plus our
ENT that treats him for allergies/tubes in the ears and all that nonsense.
After months of being on the new gluten free diet, he was worsening. Our gastro doc. ran a sensitive celiac screening blood test again, showing his levels were elevated (proof that he had been getting gluten.) I can't tell you how frustrating, upsetting that is to find out. To feel so left in the dark on this journey of all these "gray areas" and wondering all the time , "is this ok, or that"? Researching until your eyeballs nearly burn out of your head, only to uncover conflicting advice and reports, and then the biggest whammy..you see in the blood work- it's not working!
I was left to comb through EVERYTHING we had in the fridge, call the manufacturers themselves and really get to the root of it. On top of this, this poor fellow's coming unglued daily, several times a day actually, sending the whole family into a nervous wreck!
I really thought this would be a 1,2,3 fix..he has celiac..go on the diet- bam! results..
After being on this "diet" since November, we have FINALLY unlocked I believe the FINAL piece that fits the puzzle completely and closed the gap.
It all boils down to simplicity of not regulating his blood sugar properly. He seems to be a kid that is extremely sensitive or susceptible to blood sugar spikes and then dramatic drops afterwards; resulting in the most alarming, random freak outs! My favorite freak outs would happen right at pick up from 1/2 day kindergarten..such a wonderful time for your child to go ape on you! ( We previously saw an endocrinologist for this and "tortured" the poor kid with those awful finger pricks and it was so traumatic, I refused to do more and more readings. I saw enough and observed enough from my kid and figured it out for myself! His blood sugars were close enough to borderline for me- thanks, lady!- she was a real help too- another story!:)
It was back to the basics..back- to- school- for -Mommy time. Time to reorganize the diet yet, AGAIN! Not only to remove gluten from everything, (including prescription and over the counter medications- don't get me started on that tangent!!) but now, to incorporate protein & carb balanced meals and snacks! Back to the fundamentals- but with a twist. Instead of a lovely muffin, pancakes or just cereal for breakfast- here, kid..have a steak or some nuts- you need protein!
After explaining to me the reason for the "crashes" from the dietitian, wrapping my mind around the fact that sending him with just a pack of raisins or throwing him an apple for a snack was like handing him a ticking time bomb!
I had to balance that healthy stuff with a source of protein to keep him steady...and whallah! It really is working! What a difference a week makes on a protein & carb balanced diet AND a gluten free diet!
I won't bore you with any more medical details, but the research is coming in..supporting the connection of celiac & low blood sugar and how it's easy to fall in that category. Since most "whole grains" are on the outs of the gluten free diet, and the ones allowed have sometimes the most disturbing of tastes, (you have to get used to them!=), the carbs are primarily starches which has proved a disaster for him. While more tasty and "similar" to the old glutinous crackers, and breads..the truth of rice flour and potato starches is that it doesn't quite sustain you the way the ol' whole grains used to, and definately doesn't keep a steady blood sugar level for a kiddo who's yo yo ing!
There's so many hitches with this and so much to learn everyday, but this I know is true....I have pushed and pushed and not given up until I have gotten answers from Dr's. and help that I know my kid desperately needed..we ALL needed for peace of mind here! It is true, you will do anything for your kid and I won't give up.
Enjoying my kiddo smiling, an extra zing in his step, hugs and kisses and affectionately hand drawn pictures from one very sickly dude most recently, is more than enough fuel to keep me going on this path.
Nuts and other protein for breakfast is enough to fuel him...his love & happiness and improvement is enough to fuel me!
