Irritable Bowel Syndrome

Question by Pretty Girl:
Doctors Can’t Explain What is Wrong with My Baby?
I have a 6 month old baby girl that is just constantly ill. Since the day she was born she has had trouble nursing and can’t swallow very well at all. The physicians at the hospital where she was born just said it was dysphagia, which is not an answer, but they did not seem all that worried about it. They had to put a feeding tube in her and it is totally is heart breaking. When she was about a month old she stopped crying much and stopped really reacting towards anything. I called her pediatrician and took her in the next day. They did not seem concerned either. She was about 2-3 months old when her belly started getting really bloated and she was diagnosed with irritable bowel syndrome. They had to switch her to a special formula, but she still has a feeding tube. A few weeks later she started sweating like crazy! I rushed her to the hospital and everything was fine, her temperature was normal and everything. They could not explain it so they sent us home. It was when she was about 4 months old when she just was not reaching her milestones. She still could not life her head, she could not follow objects with her eyes, she never smiled, no vocalizations, no laughs, can’t hold cannot bear weight on her legs, doesn’t seem to recognize my face, not one squeal or sound, can’t roll over, never coos when I speak to her, can’t grasp toys, and can’t imitate any sounds! I took her to her pediatrician who diagnosed her with encephalomyelitis most likely caused by a viral infection. They put her on corticosteroids at first, I think it was methylprednisolone. Nothing changed. The physicians could not figure it out at all and did a bunch of tests, including an HIV test, which came back positive. I told them that is was impossible and she could not have HIV. I do not have HIV. I had myself tested and I was clear. It did not make any sense to me! Last month her joints have become very stiff and she can’t move much without pain. I took her back to the pediatrician and they sent us to a specialist who told us she did not have HIV or encephalomyelitis, but she has Adhesive arachnoiditis, which is incurable. They put her on a pain killer. By now I am totally overwhelmed. I took her to several more doctors, one telling me she has Myalgic Encephalomyelitis and just told me to keep her calm and have her rest and it should go away on its own. Another physician told me it was Lyme Nueroborreliosis and they put her on antibiotics. There has been no change and I can’t get a definate answer. I am so frustrated and just want somebody to help my baby!

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