So Elizabeth has a couple appointments coming up in the next 2 months. The first one is June 29th with her gastrointerologist, Dr. Cloney. Typically it's just a normal check up and not much is really done. However as of late I have had a lot of questions come to mind about Elizabeth's volume sensitivity. Elizabeth will be 6 in 5 months and she can barely tolerate 5 ounces of food and 5 ounces of liquid per meal, 5 times a day. Which total is only 50 ounces of food and drink combined. Now think about that real well for just a minute......Most adults are told to have 64 ounces of water alone a day to stay hydrated. Most babies will drink an 8 ounce bottle of milk and then eat another 7 ounce jar of baby food about 5 times a day. Most toddlers drink 6 to 8 ounces of fluid a meal and eat another 8 to 10 ounces of food with that same meal, 5 times a day. It really begins to make you wonder. I know that calorie wise and hydration wise she is relatively okay. She is followed closely by dietitians.
However, if Elizabeth has even a spoon more then the total of 10 ounces per meal, she becomes very uncomfortable. I know a few people who have had gastric bypass and they say if they eat too much, even a bite too much, they feel sick and uncomfortable and just plain miserable and want to throw that up. If E eats too much, yes even a bite, she starts to gag and retch and dry heave. She will tell me her tummy hurts and like clock work, with in 10 minutes she will be in the bathroom "dumping". So we know that the people with gastric bypass have had their stomach shrunk and it cannot expand properly. Therefor it leads me to believe something is going on in Elizabeth's stomach that makes it to where her little tummy doesn't expand properly. She has had many surgeries in her abdominal area, starting at 7 months old with her pyloral plasty, fundoplication and nissen and g-tube placement. Then at 15 months old she had to have her nissen redone and a diaphragmatic hernia repaired. I also know she has GERD still and BPD which both cause abdominal issues. All these being said, my aunt I have begun to wonder if there isn't scar tissue in her abdomen causing issues. Elizabeth scars horribly bad. It was scarring that caused her to have no air way and need a tracheotomy at 5 months old. So it makes me wonder if this is a problem we can't see.
Even in the feeding program we knew she was volume sensitive and it would take some time to get her volumes up to where they should be, however we have been at this same amount for 6 months and still can't move forward. In fact there are days she can't even handle the 10 ounces a meal with out some problems or feeling uncomfortable afterwards. I of all people really don't want to have to put her through more testing, but I'm at a total loss here and the only thing I can think of now to find the answers are the following: upper g.i., emptying study, or some other exploratory surgery. I really hope that Dr. Cloney is ready for me on the 29th. I really have a lot of questions I want answered!!
The other important appointment she has coming up is July 22nd with her new pediatric endocrinologist. For as far back as I can remember, Elizabeth has had very fine, light colored pubic hair. I brought it to her peds attention when she was younger, but her ped said it wasn't anything to worry about, cause is wasn't dark, course, or kinky. Well now it is dark, course, and kinky and there is quite a bit of it. Along with that Elizabeth has body odor when she is warm. So she has been referred to the endocrinologist. I have been doing some research on this and I have found some very interesting things. One, no I don't think it's precouis puberty, as she doesn't have any breast buds forming. However I think it may be premature adrenarche. The real interesting thing with this is that it says if this is what she has, she could develop thyroid problems when she is older as well as polycystic ovarian syndrome, which as most know, I have!!!! Also in some studies it has been noted that children with this problem also have behavior issues....hmmmm, now that sounds like Elizabeth.
Most of the tests the dr will want to do have already been performed, he just needs to go over them zs well as her medical history and family history. I am really wanting to know what this doctor figures out, especially since I have PCOS and there is so much debate out there as to whether PCOS is hereditary or not. I actually hope with all my hear that she doesn't develop PCOS as an adolescent or adult, because it's not fun to deal with.
So the next 2 months I am hoping to have some answers to a lot of questions that are floating through my head on a daily basis. I sure wish that I had "normal" everyday kid things to worry about and not all this medical bullshit.......if only............
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