We went to San Francisco to visit the pediatric GI doctor today. You can tell he is a very smart man and probably excellent at his procedures, but his bedside manner wasn't the best we've ever seen. He was good with Cameron, which is the most important, but we left without many answers and a general goal to get him to gain weight. He told us that lactose intolerance was unlikely to be the only problem, yet didn't give us answers as to what other problems it might be. Since Cameron is a baby, the doctor said it is very rare to have lactose intolerance since all babies drink milk. He then went on to tell us to give him a very high-fat diet - including pediasure or carnation instant breakfasts in his milk. After thinking it over I told he doctor I was very uncomfortable going back to lactose foods since taking lactose out was the only thing that helped him. We agreed to keep him lactose free and to give him as much fat and calories in his diet as possible. I just prepared him a sippy cup of full-fat lactaid milk with a scoop of soy formula mixed in - so he's getting double the calories. It's rare to hear a doctor tell you to feed your son fried chicken, but that's what he said!
The doctor also suggested it could be celiac disease (wheat allergy). When we told him Cameron tested negative for celiac the doctor said the blood tests are often inconclusive. Great. There is a procedure that can be done where the intestine is biopsied to find out if he has it, but we're not going there yet.
The good news of the day: As we were on the elevator up to the GI doctor, the CF doctor called us and told us Cameron was negative for the genetic testing for CF. Hooray!
2 weeks ago
2 comments:
:) Baby Steps... baby steps. I am confident that a true diagnoses will come shortly. And with that, a treatment. Keep up with the posts.
side note - happy belated B-day to Doug!!! Looks like you guys had a GREAT time in Vegas!!!!
Yea! Not CF. I am so happy for you on that front. AND so thrilled you had a fun vacation. Best of luck as you continue to search for the right paths to help Cam continue to stay happy, healthy and thriving. (Which he truly is! I love being around his energy!) He's lucky to have such great parents.
love, Kelly and Fam
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