Monday, October 18, 2010

On the Road Again

I take Grayson to see a specialist tomorrow at the Diagnostic Clinic at Children's Hospital. It was recommended that we take Gray to see this "jack of all trades" about a year and half ago by our ENT and then confirmed by the GI specialist. The collective reasoning was to see if there was an underlining diagnosis that would explain all the many health problems he has, something like a chromosomal thing.

At the time, Brian and I decided not to take him. We had just finished 6 months of various exams and tests that were hard on Gray (and me) and very expensive. All coming out normal. At the time, we did not feel we were getting anywhere on the traditional medical road so that was when we decided to put all our efforts into nutrition and diet changes.

We have been on the GAPS protocol for a year now (I plan to write a post on reflections of this year soon). Grayson has greatly improved but still experiences many of the same symptoms that we have no explanation for. A few weeks ago, he started a new (probably unrelated) symptom of frequent urination. REALLY frequent! Our doctor decided to test him for diabetes. After a very, very long week of waiting for test results, we found out the tests came back negative.

I'm so thankful for those results and I'm not too worried about the high amounts of urination. I do wonder about God's sense of humor sometimes. I have said for a while now that the majority of my work and chaos of daily life revolves mostly around bodily fluids and that my life would seem much calmer if everyone could keep their fluids inside their body or in the appropriate waste receptacle. At the season of my life when I think I might be able to potty train my youngest and burn the diaper champ, we now are buying more (bigger) diapers and the bodily fluids have increased! Ha, ha...

The week of not knowing was very difficult. I just hate not knowing what is wrong with my babies! I pray a lot for wisdom and guidance. Everyone has an idea, a pill, a method, a test, a treatment. There are so many options, all of which are expensive and may lead you to a dead end. We've been on so many roads and I'm not sure sometimes if we've even moved from where we've started. How do I know when to try a new road, to persevere down the one we're on, or if I'm even following all the directions?

All of this to say: I'm going down this medical road...again...for a while. I'm sure this doc will order many tests, which, because of our sucky insurance, will cost us greatly and may not give us any answers. He may diagnose him with something that makes no difference to his treatment or how we love him. He may also provide a piece to the puzzle. He may be able to tell me one small instruction. I've decided either way, its worth a journey down this road.

What I feel like God has pressed on my heart this past two weeks is that it is good and right and part of how he made me to fight for my kids. I feel crazy sometimes, and sometimes I am. But other times I am deeply in love with a God who is deeply in love with me and my kids. And when I remember how deeply he loves them I remember that if I never have answers I can still find rest while continuing on the road.

Here is a summary of Grayson's road that I had to type up for the specialist appointment tomorrow:

Birth:

  • low body temperature, taken to special care nursery in warmer, temperature did not change, taken to PICU temp raised (all lasting about 12-16 hours, formula given in PICU)
  • cried the most of the hospital stay. Difficulty sleeping even when held. Difficulty nursing
  • Nursing at home, continued to have sleeping difficulties. Cried at all times of day and at all times of being awake. Could not sleep for more than 10-15 minutes without waking up with a piercing cry and body wincing. Appeared to be in pain most of the time.

Infancy

  • Started Prevacid, made little change in temperament
  • Eliminated Dairy in mothers diet which helped some
  • Mom did a elimination diet (Dr. Sears) for 2 weeks
  • Challenged dairy with noticeable negative reaction
  • Colic type behavior continued until 4 months then much better
  • Continued to have reflux “burps” with the sound of food coming up and going back down, frequent hiccups
  • Soy and Dairy avoided by mom
  • Ear infections started around 4 months and were continuous (around 6 in 4 months)
  • High amounts of drooling
  • Frequent illnesses
  • Developmental milestones met WNL with noted Hypotonia

December -January 08 (9 months)

  • Tube surgery after multiple ear infections
  • Mother became pregnant which eliminated breast milk
  • Started on predigested dairy formula…eczema, increase in reflux burps and diarrhea started
  • Switched to soy formula and seemed to do great with formed bowel movements
  • Continued to have large amounts of drool, open mouth breathing and gagging with solid food (not initial pureed food but later chewable foods)

March 08 (11 months)

  • Frequent diarrhea returns (10-12 large, loose or mushy stools a day with a very foul odor) Stools often not held by the diaper due to consistency and/or volume. Food particles and mucus in stool
  • Continued to have multiple ear infections after tube surgery
  • Frequent illnesses
  • Continued high amounts of drool and open mouth breathing

June 08 (14 months)

  • Fitted by Physical Therapist at St. John’s hospital for orthodics due to hypotonia and late stage walking
  • Switched to rice milk at a year
  • IgA blood and skin testing done at SL Children’s Hospital-negative results
  • Celiac blood test-negative
  • IgG blood testing with following results:
    • 3+ reaction to garlic
    • 2+ reaction to peanut
    • 2+ reaction to soy
    • 1+ reaction to rice
    • Very Low reaction to almond, cane sugar, cow’s milk, goat’s milk, lentil, pineapple, tuna, beef, cheddar cheese, egg white, grape, oat, sweet potato, turkey, buckwheat, cod, egg yolk, grapefruit, orange, sesame, zucchini, cabbage, cottage cheese, gluten, lamb, pea, string bean
  • Attempted cow’s milk with strong negative reaction (intense stomach pains and listlessness).
  • Stools remain same (10-12 large, loose, food and mucous), reflux burps continue, drooling continues, gagging with food continues, eczema continues

August 08 (16 months)

  • Dietician consultation. Barb Lindeman advises to stay away from 3+ and 2+ foods but not to try to avoid 1+ or Very Low reaction foods. Increase fat, Carbohydrates, Vitamin D, and calcium
  • Gastroenterologist visit. Dr. Elizabeth Utterson orders Upper GI and small bowel follow through—done at SLCH—results normal
  • Start probiotic
  • Reflux burps improve
  • Diarrhea decreases in frequency 2-4/day. Not as loose.

December 08

  • Digestive Stool Analysis done-increased cholesterol in stool, no Lactobacilli noted

January 09

  • Soft Neck Tissue Xray at St. John’s notes adenoid enlargement

March 09

  • Adenoid and Tonsils removed
  • Drooling and open mouth breathing improve
  • Stools continue at 2-3/day large, mushy, food and mucous in stool
  • Continues to need orthodics due to hypotonia
  • Congestion continues
  • Eczema continues

September 09

  • Begin strict diet with elimination of sugar, grains, dairy, soy. Diet high in meats, vegetables and good fats.
  • Increase EFAs and add cultured vegetables and digestive enzymes
  • Skin turns orange in color for months
  • Catches a virus that caused vomiting and resulting dehydration-hospitalized for 3 days because he continued to be listless and often unresponsive. White blood cell count high enough to cause concern. Discharged when his count lowered and he would eat a couple bites of food.

April 10

  • Stools start to improve. Move to 1-2/day. Begin to see some formed stool with intermittent soft/mushy and intermittent diarrhea. Continue to see undigested food and mucous. Stool floats and is oily and dark in color.
  • Eczema eliminated

May 10

  • Anitbiotic started due to ear infection
  • Stools improve greatly. Start to see formed stools the majority of the time.

October 10

  • Begin urinating with high frequency (4-8 times an hour) with increase in thirst
  • Blood test for diabetes-negative
  • Stool continues to be soft, mush with intermittent formed stools. Undigested food continues to be seen in stool at much lesser degree and not as often. Mucous noted occasionally when stool is looser and more foul smelling. Occasionally looses stool when passing gas or throughout the day.
  • Distended belly gets larger through the day.
  • Has a large appetite and can be insatiable even after large amounts of nutrient dense food.

2 comments:

  1. you may be at that appointment right now... i'm praying, and i love you & your family very much!

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  2. so sorry to see the heartache you and your family must be suffering!
    i may be a little confused with the time-line, but are you keeping him off of dairy right now? many of his symptoms sound to me like malabsorbtion from lactose intolerance. i had many of these problems myself as an adult.
    good luck!

    ReplyDelete