Need More Information about SCT

[clovercupey]

My son has sickle SCT and tires so easily, has frequent indigestion problems and stomach pain and is always thirsty and only drinks water. His primary doctor ruled out absorption or bilirubin illness. He dehydrates during illness incredibly quick, last time he got sick after vomiting a few times almost went into a metabolic acidosis, even after he was already at the hospital getting treatment. Sometimes he can see well sometimes he can't, even the optometrist doesn't understand he has even been evaluated in a a study by doctor instructors of a university school of optometry. I pick him up from after school and 80% of the time he is asleep. Where can I find more up to date information on SCT, or is my son one of them rare cases? Please Help

[SCSZoe Partner Sickle Cell Society]

Sickle cell trait is still not very well understood. Some people who carry the trait have no symptoms whatsoever, while other people experience symptoms like your son. Dehydration and acidosis are some of the more frequent complications of sickle cell trait.

With sickle cell trait, some red blood cells might form sickles sometimes, which can cause complications. Drinking lots of water will help counter this, as will being careful during exercise and at altitude. It's really important he makes sure he stays hydrated at all times!

The trait is also linked to vision problems including glaucoma (increased pressure in the eyes) and hyphema (pooling of blood in the eyes). This 2010 article lists some of the health problems that sickle cell trait is linked to ncbi.nlm.nih.gov/pmc/articl...

It sounds like you're working hard to make sure your son's doctors are aware he has sickle cell trait, which does help, because it means they can investigate possible links. Is your son seeing a haematologist as well as specialists for his medical complaints? A haematologist may be able to help identify how much of the problem is linked to the trait, or otherwise.

[SCTUSF]

Dear Clover: I want to apologize for taking so long to reply. I check more often my facebook page, but I will try to come back here more often. I am sorry your son is having so many issues, but I am really glad that he drinks lots of water. He may not know it but he is really doing the most important thing he can do to prevent crises and to keep himself well. You are describing symptoms (including the eye issue) that are sickle-cell disease like. I do think he is one of those rare cases in which he is expressing symptoms even though all doctors learn that SCT is a benign condition. I would be very careful about him in sports, certainly be very careful about him going to high altitude places and certainly I would warn him NOT to fly in un-pressurized airplanes. It seems that he could have a crisis easily. I think in your situation, the best thing is to prevent by maintaining hydration and by avoiding known triggers as I noted above. I understand your frustration and I wish I could be of more help. We have found interesting results, and I hope our publication will have an impact. Finally, may we use your message, without any name associated, for a future publication? Thank you, I wish you and your son the best.