My daughter was diagnosed with SMA in December of 2015. We had a consult appointment with Dr. Alverdy in Chicago in January. Personally, I would not choose him as a surgeon. He only gave us a 50/50 chance of the surgery to correct her SMA to work. He left the room during our appointment to discuss my daughter’s case with her GI doctor at UofC. It was then decided that my daughter would be put on TPN for a period of time. I did not like his personality and his staff is rude. Not something you want to go through when your child is so sick.
We aren’t getting much satisfaction from her GI at UofC either. I don’t feel that the team is taking my daughter’s symptoms very seriously. Her doctors are hard to get a hold of and they never call back. My daughter had an episode of vomiting for 3+ hours a day for 5 days straight. She was so weak she couldn’t get out of bed. I e-mailed her GI 3 times in one day, then the next day and the next day. It took the doctor 2 weeks to get back to me about my concerns. Everything is “hurry up and wait” here. It takes months to get a test taken, and then another month to see the doctor to get the results; it’s ridiculous. She had a PICC line inserted and she is on TPN. At first she gained 7 pounds, but then lost 6 when she was so sick for 5 days. She is still on TPN, and has gained a little weight, but her pain, nausea and vomiting have not gone away.
Our to sheer frustration, I went on line and made an appointment request for Mayo Clinic in MH. My daughter’s appointment is April 4. I hope I get better results with Mayo Clinic than I have with the UofC in Chicago.