My 2 1/2 year old son was just diagnosed with ALPs syndrome this week after a year of testing and monitoring. I'm relieved to finally have a diagnosis! I had a splenectomy when I was 4 (1989) due to an enlarged spleen and they never found what was wrong with me. Obviously, with this being genetic, I also have ALPs. The test for this disorder wasn't even developed until 1995! I'm not so much worried about him long term, since I have been living with this my whole life, but just wondered if anyone else out there has a child with this? What have your experiences been so far? We talk with his hematologist next week about what's next for him. Thanks in advance for any information! via /r/Parenting http://ift.tt/29raVyu
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