Discussions By Condition: Medical Stories

frustrated mom

Posted In: Medical Stories 1 Replies
  • Posted By: Anonymous
  • May 30, 2007
  • 11:40 PM

I am at a loss for what to do anymore. No one seems to want to listen. My daughter, Kayla, is twelve. She has had health problems all of her life. When she was a baby, it was skin sensitivity, constant ear and upper respiratory infections. Kayla has been diagnosed with neurofibromatosis type 1 that has caused a plexiform neurofibroms to become completely wrapped around her liver and it's main arteries, a neurofibroma on her chest wall, and a few other small ones in minor places. Kayla also has migraines, moderate persistent asthma, and she has problems with her immunity that still remain undiagnosed. She received IVIG for three years and began to get better, she went to school, she had friends and started to do normal things. The doctor wanted to try taking the summer off of IVIG at this point. We did. It did not go well. Kayla has been sick over half of the school year, feels distant from her peers and has few friends. She was even put on homebound schooling for a marking period. She restarted her IVIG in October but now the doctor wants to take the summer off again!!! I told him that I did not agree and he told me all that I had to do was get a referral from Kayla's primary care doctor. I did that and when it came time for Kayla's next IVIG, I got a call the day before cancelling it because he said I would have to make an appointment and actually talk to Kayla's primary care. So, it's been about 5 weeks since her last IVIG and I have an appointment tomorrow with the primary care. I also have health problems and I am going in for surgery at the end of June. I want everything to be resolved by then but I'm not sure that it will be. I can't help but feel that if I could get a diagnosis for Kayla's immune problems, I could get her accurate treatment but no one seems to know what the problem is and they tell me it is not related to any of her existing conditions. My mother also has dementia and is in a nursing home about an hour away from our home and I go to see her twice a week. My husband has NF1 also and just had surgery. I am exhausted and frustrated and at a loss for where to go or who to contact. Can someone please help my family?? My health problems involve type 1 diabetes for 25 years, asthma, migraines, neuropathy, allergies, arthritis, fibromyalgia and some problems with my female parts which is why I'm going for surgery. I am 35 years old and desperate!

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  • Unfortunatley I cannot help. I just posted a message about my 16 mo daughter who is constantly getting viral infections with normal blood tests. She had the rotavirus when she was 9months old and since then has had 10 round of steroids dut to respiratory virus (now virally-induced asthma), herpangina twice (hand foot mouth) erythema mutliforme and now has a fever of 100.6-101 every night for the past three weeks. Is this something like what your daughter has been going through? Please let me know ASAP and what the IVIG is and how it works. THank you so much!!!! nrh24@Hotmail.com
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