Medical Mysteries Support Group

Ok this is going to confuse most people but I am really starting to get worried. Mind you I have not been worried until lately about my daughter. My pregnancy was uneventful The only problem was that I developed Gestational Diabetes. No big deal it was diet controlled. But also meant that I was then considered high risk and was unable to have her at the birthing center like I wanted. She was induced 3 days early. Perfectly health and weighed 7.5 lbs. I decided to breastfeed. No problems she plumped up and grew normally. However she wanted to nurse constantly. When we were at home it was every 2 hours. Even at 4 months old she was still nursing every 2 hours. If we had to go somewhere we would have to stop at least once each way. At her 4 month check up she weighed 18.8 lbs. She was fat. All that nursing did it. She also noticed that her tear ducts were not clearing up as she had hopped. I talked to her Dr about starting some cereal and she agreed that once a day would be OK for her. Then she only nursed every 3-4 hours. Big relief on my part. And by her 6 month check up she weighed 19.8 lbs. This is when all the problems started. Since she had only gained 1 pound in 2 months her Dr wanted to watch her weight. At the same time she sent us to an eye Dr to check on why her tear ducts were still clogged. At first he thought that they were covered by a flap of skin and that was preventing them from draining. So he said that he could fix this with a very simple procedure. So that was scheduled. At her 7 month weight check she had not gained any weight. And by this time she was constipated. So off to the GI DR. When she went in for her eye procedure it took longer then expected. When he was done he explained that on her right eye it was what we had expected and it just needed to have the skin cut to unblock the tube. However on the left eye the tube was missing. So he had to create one for her. He had also told me that he checked her eye focus. And her right eye was extremely far sided. So she would have to be fitted with glasses. But that was the end of that he would see us in 6 months for a recheck. So for months no weight change. She caught rotavirus when she was 9 months old despite having the vaccine. and lost 1 pound over the weekend. She did slowly regain that pound back. But that took a whole month. The GI Dr tested her for celiac and cystic fibrosis tested her elasticities. He insisted that is was celiac even though he retested every month and every time it came back normal. He had me give her 2 tsp of Miralax twice a day and 1 tsp of Mineral Oil once a day. This helped a little but not much. Then we saw a nutritionalist and she said there was nothing wrong with what she was eating. She put her on a high calorie diet. She was eating 3 meals, 3 snacks a day. Along with 3 Pediasure a day. This was all when she was 10 months old. Did I mention she was still nursing every 4 hours. And still at least once at night. When she was 11 months old she was sent to have a feeding evaluation and an occupational therapist. She had what they said was sensory issues. She would scream when you changed her clothes or bathed her. They gave me this brush and showed me how to use it. It helped a little. She still has issues with her hands being dirty. And will cry until you clean them. So by her 12 month check up she was still at 19.8. By this time I was frustrated with all of these Dr's. Her primary informed us that we should find another Dr since this was beyond what they had knowledge of. They were out of options to do. She saw the GI one more time and I had them run some other tests on her thyroid, Hormones, and run a Hemoglobin A12. They did all of these at my request. But when these were all back everything was normal. And they too stated that they had no other options to seek. Despite everything she had not gained weight. And they noticed that her hight was tapering off as well. This was never an issue. Then they suggested that I try the gluten free diet and start to ween her off the Miralax and Mineral Oil just to see if this would help. They felt that the meds were helping with the constipation but effecting her weight and now her height. So we tried this diet and started taking her off the meds. The next visit 6 weeks later her weight had not changed at all. And her constipation had not come back. At this point they were completely out of options as well and told us this. So we went to another Dr for her 15 month check. No real worries there. But during this time is when I started noticing some weird things going on. We had just moved into our home and in the kitchen I had a glass lid to a pot in the cabinet. I was in the living room and she was in the kitchen with her dad. She pulled this lid out and was banging it on the floor. It shattered and she got up started to walk into the other room and cut her foot. She cut it sideways and her dad looked down and saw blood ion the floor picked her up and brought her to me. This was a 2 inch sideways cut. She acted like nothing happened. Not a tear or even a whimper. But went frantic when I put a towel on it and held her foot to stop the bleeding. A few weeks later she put her hand on the glass part of the oven door when it was on at 450 degrees and just left it there. She did not pull it back or even cry. She cried when I pulled her hand off and yelled at her that it was hot and now she does not touch it. She has also become very sensitive and cries if she is being told no or if her sister is being punished for something. Well on her last well visit she had seen a new Dr and they detected a heart murmur so she wanted us to get it checked out. It was nothing and just an innocent murmur. But this was her 16 month old check up which should have been done at 15 months old. But since I had to find a new Dr AGAIN she was late. She just had her 18 month check up and she is exactly 20 lbs. Ok mommy is getting scared and worried now. She has dropped off of the chart. And she eats more than anyone in my house. I need advise on where do I go from here. The first 15 month visit she did not get her shots because they had not received her records by then. So they were given to her on the next Dr visit. The reason for changing this time was because we changed insurances.
Posted on 06/15/08, 10:06 pm