My 8 Year Old Son

My 8 year old son was diagonsed with hereditary spherocytosis this weekend. He had some complications and was jaundice and slightly dehydrated and we were informed he had an enlarged spleen. This is his first complication, but we were told he is considered moderate to severe. We have been trying to read up on it on-line, but still feel clueless. Can he live normal life or play sports? Will we be in the hospital frequently? Will he be tired all of the time? We are worried and stressed about his future and we are not sure how to explain it to him. We have more follow-up appointments and are making a list of questions for the hematologist. My husband, younger son, and myself were all tested and do not have the disorder nor does anyone in our family. Many blogs on-line are upsetting and you read a lot of horror stories. I am hoping to hear some postive information, but I also need to be realistic regarding his future. Any information from anyone with this disorder would be much appreciated.
kbywall kbywall
36-40, F
4 Responses Jan 17, 2013

Don't fear our son too who is 8 also has HS and is anemic. We've been seeing a hemotologist on a regular basis at Sick Kids for the past 3 years. His symptoms varie such as he's tired, jaundice, mood swings, discolouration in his urine, slightly enlarged spleen at times etc. His red blood cells are at 95 there suppose to be at 120. Doctors recommend a partial splenectomy operation which will increase his rbcs to over 100. We are going through with it but first our son has a series of immunizations to get first. Right now he has one more to get.

I was diagnosed in 1983 with Type 1 Diabetes & the next year when doing blood work they discovered the Spherocytosis (had my spleen removed). The only problem I have had in all these years in Anemia when my Red Blood Cells change but otherwise I am very healthy. I wish you and your son my best.

Hi your son has spontaneous spherocytosis when this is not passed on from parents but he may pass on to his children, once he has his spleen removed you will see a big difference and growth spurt, both myth daughters had their spleens out at 5 and are now 19 and 23 and are fit, my granddaughter is 4 had many transfusions and spleen enlarges a lot, we are expecting her to have her spleen removed in the next year, it's worrying times but when I went to hospital each time it mad me eat humble pie to see sicker children who are ill continuos for many years worse than mine knowing that once the spleen was removed they would be fine so feel lucky x

My name is Angela and I have Hereditary Spherocytosis. I'm 35 now and after seeing your post I wanted to reach out and offer you hope. My case was severe but I am a fit, healthy adult now. I had two hemolytic crisis when I was younger that resulted in blood transfusions. Then at 17 I had the worst one and was forced to undergo more transfusions and an emergency splenectomy. Not long after this I felt better than ever, really started taking good care of my body and have had a healthy lifestyle without major issues since... There are signs of trouble which I am sure your physicians have made you aware of. I went to the doctor more than all of my friends but had plenty of time to make up for missing aggressive athletics later in life. I'd be happy to speak to you.