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So here is my journey so far with regards to my twin girls who where diagnosed with Hbe/Beta Thalassemia in July 2019, they are 6 years old turning 7 in April. When they first go diagnosed my wife and I did not know what to expect and how this would change our ordinary lives. The hematologist ordered so many tests to be done, that I did not know whether I was comming or going. They did an electrophoresis test, FBC, LFT, Endocrinology test, Heart Echo, Ultra sound of the spleen and liver etc. So after everything was done the hematologist sat us down and started to explain the disease in detail and started to work on a treatment plan going forward. Their Hb was 7.2 and 7.4 on their first visit (10 July 2019). After transfusion their Hb was 11.9 and 10.6 (11 July 2019.) We did a blood test after 4.5 weeks (13 Aug 2019) and their Hb had dropped to 8.5 and 7.4 so another blood transfusion was administered. On the 04th Sept 2019 we did another blood test and their Hb was 9.6 and 8.8. At this point our Hematologist decided to start treating them with Hydrea 3ml daily plus blood tranfusions. 02 Oct 2019 their Hb was 8.5 and 9.1. At this point I was wondering whether this drug is doing anything at all. I guess I expected instant positive results straight away but after discussing my concerns with the hematologists they said results will only start to show between 3 - 6 months if any. I was told some thalassemia intermedia's may respond positively while some may not, it's a trial and error approach for now to see what works. So the next visit 06 Nov 2019 their Hb was 9.6 and 10.1 (blood transfusion was still administered at this stage), so we started to see an improvement and I felt at ease with the treatment thus far. Moving forward 29 Nov 2019 twin 1 was very pale and her eyes went extremely yellow an she was in a lot of pain, Hb for twin1 was 10.3 and twin 2 was 10.9, the hematologist suspected it was gallstones so they did an ultrasound and got the gastroenterologist involved, 2 Dec 2019 blood transfusions was done for both twins, The gastroenterologist did a MRCP scan and found gallstones lodged in one of the bile ducts. 5 Dec 2019 he did an ERCP and flushed out the stones from the bile duct. At this point we stopped Hydrea for both twins as they were being vacinated for a possible splenectomy and gall bladder removal in early Jan 2020. After consulting with the hematologist and their team of specialists we decided to not go ahead with the operations just yet. As a parent I wanted the surgeon to go ahead with the gall bladder operation as I did not want my girls to have to go through that pain again, but we decided to wait a bit. 20 Jan 2020 twin1 Hb is at 8.3 and s-ferretin is at 819, twin 2 Hb is at 9.7 and s-ferretin is at 1095 , blood transfusions was done. At this point the hematologist was discussing possible iron chelation with us, but before making a decision they wanted to do a ferri-scan. I did some research on iron chelation and found some herbal treatments which could be effective, I started making them a smoothie with grapes, almonds, a bit of tumeric and honey. I tried this for a week and stopped due to twin 1 getting sick, but my wife found tumeric cream in a spice shop and so she applied the cream daily for them on their bodies. 4 Feb 2020 twin1 Hb is at 8 and s-ferritin is at 645, twin 2 Hb is at 7.7 and s-ferretin is at 790, blood transfusions was done and we went home. As you can see there has been a significant drop in their Hb and some improvement in the s-ferretin, not sure if the tumeric cream had been having an effect, but their s-ferritin has been comming down from where it was. 12 Feb 2020 ferri-scan done and results show no deposits of iron in the organs. We were quiet relieved that no damage to the organs had been done, but my wife and I felt that we need to do something to keep their iron in balance and we started doing more research on natural iron chelators. 5 Mar 2020 twin1 Hb is at 7.4 and s-ferretin is at 861, twin2 Hb is at 6.5 and s-ferritin is at 544.
At this point the hematologist decided that we should start Hydrea again and increased the dosage from 3ml to 4ml, blood transfusions were done and we went home. 12 Mar 2020 I started my girls on a concoction that I make daily for them, it consists of wheatgrass powder, red grapes, almonds, honey and a bit of tumeric, thereafter I give them 2 drops of cannabis oil. So on the cannabis oil side I've been in contact with a company that makes the oils for specific conditions, I explained my kids condition to them an asked them to do research and come up with strain of oil that is an Hbf inducer. For now they gave me an oil that has been used to treat a leukemia patient. I'll update this thread on the cannabis oil once I get feedback from them.
23 Mar 2020 twin1 Hb is at 8.1 and s-ferritin is at 578, twin2 Hb is at 7.6 and s-ferritin is at 442. So based on the results thus far I think the concoction I'm making for girls is having a positive effect on their iron overload. So that's my journey so far with my girls, Your'll are most welcome to comment and tell me if I'm heading in the right direction with their treatment plan.