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55244 Posts in 5897 Topics by 6188 Members
Latest Member: jcemanuele

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 1 
 on: March 30, 2020, 04:42:36 PM 
Started by BashX - Last post by BashX
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.

 2 
 on: March 30, 2020, 02:18:39 PM 
Started by Md. Abdul Hakim - Last post by Md. Abdul Hakim
Dear Andy
I don't get L-Methail Folate but have got only methaile Folate instead of L- Methaile Folate .
Could I use Methaile Folate for my two years baby? 
Is L-Methail Folate and Methail Folate same?


Regarding
Md. Abdul Hakim
 

 3 
 on: March 30, 2020, 04:02:58 AM 
Started by dennis1106 - Last post by Melontan
Both of my children are on sublingual methylcobalamin as well as l-methylfolate. My daughter has a mood disorder too which makes it even tougher.

 4 
 on: March 30, 2020, 03:59:46 AM 
Started by himynameishuman - Last post by Melontan
I have HbE trait and am allergic to Bactrim

 5 
 on: March 30, 2020, 12:21:14 AM 
Started by chickenisgood - Last post by chickenisgood
So my wbc count comes normal but on the lower end(4.85E3/uL). It seems this lower number is coming from low neutrophil count(1.88E3/uL)

Is the supression of wbc production a side effect of the increased RBCs the marrow has to make up for? It makes sense that would happen but Im not sure. What are your guys WBC counts?

 6 
 on: March 27, 2020, 04:01:42 PM 
Started by Andy Battaglia - Last post by zahra
Happy Birthday Lisa!
Your ideas have helped so many people.
May God bless you in heaven.

 7 
 on: March 25, 2020, 07:06:15 PM 
Started by himynameishuman - Last post by himynameishuman
http://cooleysanemia.org/updates/HemHEnglish.pdf

This has ithe medications to avoid.

 8 
 on: March 23, 2020, 06:14:08 PM 
Started by AstonDialo - Last post by Andy Battaglia
Nice to see you here.

 9 
 on: March 23, 2020, 09:41:11 AM 
Started by Andy Battaglia - Last post by JV
Happy birthday Lisa...

 10 
 on: March 23, 2020, 09:35:19 AM 
Started by Andy Battaglia - Last post by Andy Battaglia
Happy Birthday to Lisa, the founder of this group, which is the longest running thalassemia forum on earth. Lisa Cammilleri would have turned 50 years old today.

It's not a happy time on earth, Lisa. At times like this, I realize how much I miss your way of making everyone laugh and forget everything for a minute. It's something we could all use right now, as we're faced with a serious crisis on earth. You'd probably joke about being the lucky one who doesn't have to go through this mess. At times like this, we realize that without friendship, we humans have very little. Your friendship has stuck with me all these years, guiding me and helping me carry on your dream.

And even after 16 years, I still cannot talk about you without crying. I so miss my little sis.
Happy Birthday in heaven, Lisa. Send us a blessing. We need one.

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