Most of my readers (are there more than one of you out there??) know Jackson has had a hard time gaining weight from the beginning. First it was the severe reflux that got him a lovely feeding tube in his nose for several months. That was finally properly diagnosed and he got the right medicines and BOOM he started eating. BTW I was the one who went out seeking answers as to why he was not eating. My Nephrologist (kidney doctor) and his staff just kept checking weights and raised the possibility of him getting a G-tube (feeding tube in his tummy, permanent instead of temporary nose tube). I pulled a "momma bear" and started asking anyone I could think of for help. I was led by a strong feeling to contact an old coworker whose husband is a doctor who Just Happened to know a WONDERFUL GI doctor who diagnosed Jackson and helped us get the right meds. I am convinced the Spirit pushed me to contact these people and get answers.
***The Picture at the top is Jackson at his Christmas program. He is DARLING in his little suit but you can see how much shorter he is than any of his classmates.***
Forward to the present when Jackson is now 5 and his 2-year-old brother is almost as tall as him and weighs only 3 pounds less. I have always thought my Nephrology office was on top of this (what was I thinking, see previous paragraph). Last visit in February I told his dietician to remind me why he wasn't gaining weight. Was it is his Stage 2/3 Chronic kidney disease (only has 1 kidney) that made it happen or what? She says "Well most kids with his stage of kidney disease don't have this problem. We don't really know why he is not gaining weight." WHAT!!!!! I was so, excuse my language, pissed at this statement. I have been basically begging them for 3 years to start growth hormones on the recomendation of his awesome pediatrician and was always shrugged off. This time I told them I had gone over them and made an Endocrinology appointment on my own to get another opinion. All of thesudden they are tripping over themselves to get me info, referrals, scans to get growth hormones. Jackson had a bone scan done to determine if his growth is just slower and nope it is right on track.
So the point of this long post is to ask anyone to give me opinions, ideas, names to contact, people who have done the growth hormone and might want to talk to me or if you can tell me their experience. My Endocrinology appointment is next Monday and I fully intend to keep it and get another opinion. Watch out, Momma Bear is on the loose and she don't take no prisoners!!
3 comments:
Kyle was on growth hormones briefly (but I think he was in jr. high). Other than that, I don't have any ideas or suggestions.
I talked to Kyle and he mentioned his cousin's son who was really premature- he's the same size as his younger brother. From all the preemies I've seen, they are generally smaller than other kids. Is there any way to see if he's smaller than other kids who were born prematurely?
That's not to say you shouldn't do what you can to help him grow more, but maybe a little comforting if it is in fact pretty normal for him to be small.
Glad you are on top of things. Trust your instincts! I think making your own appointment was the right thing to do. You can go from there after endocrinologist sees Jackson. I am replying to your Facebook message with my cousin-in-law's contact info. Their 8-year-old daughter just started growth hormones. She is a twin, and I believe they were born four weeks prematurely (which is not AS premature where twins are concerned). Her twin brother is of normal size, but she is barely bigger than the brother five years younger.
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