child with sickle cell thalassemia
hello community, is there any parents with a children with sickle cell thalassemia? me (dad) caries the sickle cell trait and mom carries the thalassemia trait if we understood correct from the hospital few years back.
currently have 2 kids one 3 year old who has sickle cell thalassemia disease and one 1 year old who is normal. My son who has the disease takes medication every day, few ml of penicillin and 1 pill of folic acid and so far he's been on that since 6 months old till now and per doctors this will continue until 5 years old. I would consider him absolutely normal hes hyper, super smart even the doctors stay shocks with his conversations at 3 years of age, loves sports and riding his bicycle , he has a huge huge huge pain resistance since small, nothing seems to hurt him he walks it off and continues like nothing no matter how hard the fall is.
has far has crisis the only pain he suffers from would be leg pain during bed time here and there sometimes 3 times weekly or sometimes nothing at all for weeks. My way of treating this from the beginning has been with really potent (MG) CBD 'muscle freeze lotion' (3 different brands depending on stock) by massaging it to his crisis area and after 2 minutes he normally lets me know he’s s good to go and falls back asleep.
anyone in this community dealing with something similar and if you are what has worked for you during crisis episode or does it get worse depending on age?
Posted Nov 8, 2021, 4:45 PM UTC
No children myself yet, however, I am a child of parents with sickle cell trait and thalassemia trait. I have sickle beta zero thalassemia, which is equivalent in severity to SS sickle cell disease. With that being said, I do not believe my case has been anywhere near as severe as those with SS. By that I mean I might only experience 1 or 2 crises a year (sometimes not at all and sometimes a few more than 1 or 2), and have lived a fairly normal life. I might not have the frequent pain crises, but I have still suffered from nearly every major complication such as acute chest syndrome, enlarged spleen (and removal), avascular necrosis which lead to a hip replacement, etc.
Making sure your child stays well hydrated, especially in crisis, should be a top priority. I believe as a kid, my parents mostly gave me over the counter NSAID type pain relievers, unless it was too severe and then they would take me to the ER. Heat was also a big help for my pain (if you don’t know- stay away from ice or any sort of cold as that can trigger a pain crisis).
As far as pain getting worse with age, I would say that is true, at least it is for me. When I was younger my pain was generally located in either my knees or elbows. My pain has transitioned as I’ve aged with phases where pain would be isolated in different areas of my body. I’m now 31, and when I get pain it takes over multiple joints. Lately my pain will be in my shoulders, down my spine, and in my hips.
Not sure if any of this information was helpful, but if you have any other questions I would be glad to answer them for you.
Did the hip replacement help with the pain?
Yes, the hip replacement completely cured my pain from the avascular necrosis. 9.5 years later and still pain free
Thank you for the reply. My fiancé will be having a replacement soon and he’s very nervous. And worried about the after surgery pain. It’s comforting to know that he could experience no pain
The after surgery pain was pretty intense for me, but I was also on A LOT of pain medicine beforehand due to how bad my condition had become. I was basically bed ridden for 10 days prior to my surgery and had seen a pain management doctor who gave me Vicodin, fentanyl, and another non-narcotic pain reliever. But after the surgery I was on very little pain medicine so it wasn’t enough to meet the tolerance I had built up with all the drugs I was on before surgery. So with that being said, I would definitely recommend him to take little to no pain medication before surgery as possible so that way what he’s given post surgery will help manage his pain better. Overall though, whatever pain he experienced post surgery will be worth being pain free once he’s healed up