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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





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Author Topic: Twins with Hbe/Beta Thalassemia  (Read 1177 times)
BashX
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« on: March 30, 2020, 04:42:36 PM »

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.
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Andy Battaglia
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« Reply #1 on: April 22, 2020, 01:01:07 PM »

Some supplements that should be considered, along with hydrea.

L-methylfolate. 2-5 mg daily. I consider this as necessary.
L-carnitine or L-arginine. 500 mg daily.

Hydrea works better when complementary supplements are used along with it.
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Andy

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BashX
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« Reply #2 on: April 23, 2020, 04:27:52 AM »

Thanks so much for the feedback. I'll definitely start them on that.
They are due for a transfusion. If there are bloods available they will probably go in tomorrow and i'll update this thread with their pre and post transfusion results.
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BashX
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« Reply #3 on: April 28, 2020, 08:57:06 AM »

24th April 2020 - Pre Transfusion Results :

* H - Indicates High
* L - Indicates Low

Twin 1 :

RBC                    - 3.42 L
HB                      - 9.2  L
HAEMATOCRIT     - 0.29 L
MCV                    - 85.4
MCH                    - 26.9
MCHC                  - 31.8
RDW                   - 21.1 H
PLATELETS          - 31 L ** This is very very low ** Doctor advised to stop the Hydrea due to very low platelet count
S-IRON                - 28.9 H
S-TRANSFERRIN   - 14.6 L
S-%SATURATION - 100 H
S-FERRITIN         - 584 H


Twin 2 :

RBC                    -  3.19 L
HB                      -  8.9 L
HAEMATOCRIT     -  0.28 L
MCV                    -  86.6
MCH                    -  27.9
MCHC                  -  32.1
RDW                   -  21.3 H
PLATELETS          -  139 L
S-IRON                -  30.6 H
S-TRANSFERRIN   -  15.7 L
S-%SATURATION -  99 H
S-FERRITIN         -   419


My question is can the Hydrea alone cause the platelet count to drop so drastically??
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Andy Battaglia
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« Reply #4 on: May 14, 2020, 10:52:12 AM »

It may be the hydroxyurea that caused the platelet drop. Usually, the drug will be stopped until the platelets rise to normal and then it should be re-challeneged to see if the platelets can stay stable.
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Andy

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BashX
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« Reply #5 on: May 24, 2020, 01:49:04 PM »

Blood test done after 19 days to see if twin 1 platelets have picked up, see below blood test results.

13th May 2020 - Blood Test Results :

* H - Indicates High
* L - Indicates Low

Twin 1 :

RBC                    - 3.57 L
HB                      - 9.8  L
HAEMATOCRIT     - 0.29 L
MCV                    - 81
MCH                    - 27.5
MCHC                  - 31.8
RDW                   - 16.3 H
PLATELETS          - 180  * Platelets are now adequate and is between the threshold.


Twin 2 :

RBC                    -  3.36 L
HB                      -  9.8 L
HAEMATOCRIT     -  0.28 L
MCV                    -  84.2
MCH                    -  29.2
MCHC                  -  34.6
RDW                   -  17.2 H
PLATELETS          -  152

Notice how the RDW in both twins has dropped drastically, it's almost with the threshold. Could it be that the herbal treatment that I initiated them on is having a positive effect in managing their treatment? It's been just under 2 months since I started them with this concoction of mine. Andy what do you make of their blood results so far? We'll do an iron profile next when go in for blood transfusion during the course of next week. I'll be really interested to see those results as i've been concentrating more on trying to bring down their iron count.

P.S Twin 1 is still off Hydrea while Twin 2 is still continuing with it.

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Andy Battaglia
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« Reply #6 on: June 08, 2020, 07:10:51 PM »

Yes, the herbal treatment can have a positive effect. It may be helping with the platelets and with the dropping RDW, it may be helping iron to be more bio-available. Platelets can be raised by eating papaya and also from papaya leaves. I imagine there are many substances that can help restore platelets. The Hb has also risen. There are many natural foods and herbs that have a positive effect on Hb and which can add to the effect of hydrea. Wheatgrass is mentioned most often, but herbs like turmeric and others have great value.
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Andy

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BashX
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« Reply #7 on: June 09, 2020, 11:22:44 AM »

Thanks as always for your feedback Andy. I really do appreciate it.
I've learnt so much on this forum as how to treat my kids condition, it's truly amazing.
This forum is truly a blessing and having people like you who are so knowledgeable with regards to thalassemia is a bonus to us all.
I value you input greatly and I'm glad I've found someone like you to walk this journey with me.
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BashX
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« Reply #8 on: June 09, 2020, 11:33:58 AM »

27th May 2020 - Pre Transfusion Results :

* H - Indicates High
* L - Indicates Low

Twin 1 :

RBC                    - 3.15 L
HB                      - 8.5  L
HAEMATOCRIT     - 0.26 L
MCV                    - 81.3
MCH                    - 27
MCHC                  - 33.2
RDW                   - 18.5 H
PLATELETS          - 254  ** Platelet count has increased quiet a bit from previous results
S-IRON                - 29.2 H
S-TRANSFERRIN   - 15.7 L
S-%SATURATION - 93 H
S-FERRITIN         - 561 H


Twin 2 :

RBC                    -  3.14 L
HB                      -  9.1 L
HAEMATOCRIT     -  0.27 L
MCV                    -  86.3
MCH                    -  29
MCHC                  -  33.6
RDW                   -  18.6 H
PLATELETS          -  197
S-IRON                -  25 H
S-TRANSFERRIN   -  13.4 L
S-%SATURATION -  93.3 H
S-FERRITIN         -   432

There are slight differences and changes in their FBC's and Iron profiles. Their iron seems to be stabilizing around the current values.
Since the last 3 months the s-ferritin has not changed by much.
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BashX
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« Reply #9 on: June 17, 2020, 01:32:03 PM »

For those who may be interested in trying out the herbal treatment that I have started my twins on please read below. My kids have been on it for roughly 3 months and I've seen some improvements in their overall health. It's no magic bullet, but it may alleviate some of the symptoms of thalassemia.

Basically I make a smoothie for them, so you will need either a nutri-bullet or something similar if you cannot get all the items in powdered form.

1. 1 Glass Water.
2. 20-23 Almonds.
 
Put the Almonds and the glass of water in the nutri-bullet, leave it to grind for about 2 mins. Once done add :

3. 1 Teaspoon of Wheatgrass powder (make sure it's organic).
4. 1/4 teaspoon of Tumeric.
5. 1/2 teaspoon  Nigella Sativa (Kalongi seed) powder.
6. 1 Tablespoon of Raw Honey.

Mix it all up and drink.

I have read somewhere that goji berries are also quiet good and may help with treating thalassemia.
I would like to try it but I need more information before taking that step, if anyone can share some information on it, it would be most welcome.



 
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BashX
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« Reply #10 on: June 25, 2020, 01:35:48 PM »

22 June 2020 - Pre Transfusion Results :

* H - Indicates High
* L - Indicates Low

Twin 1 :

RBC                    - 3.35 L
HB                      - 8.6  L
HAEMATOCRIT     - 0.26 L
MCV                    - 77.3
MCH                    - 25.7
MCHC                  - 33.2
RDW                   - 18.5 H
PLATELETS          - 255


Twin 2 :

RBC                    -  3.38 L
HB                      -  9.7 L
HAEMATOCRIT     -  0.29 L
MCV                    -  84.3
MCH                    -  28.7
MCHC                  -  34
RDW                   -  18.4 H
PLATELETS          -  159

Twin1 has slight improvements with regards to her FBC.
Twin2 HB has improved significantly from the previous Blood Transfusion done in May.

PS Twin2 is on Hydroxyurea.

The doctor forgot to do and iron count for them and since I did not want them to get poked again we decided to leave it for next months transfusion.

I have read an article on the interwebs where it stipulates that tumeric can lower your HB, but the positives are that it is a good natural iron chelator.
So with this in mind I decided to give them tumeric for only 2 weeks after each blood transfusion and the other 2 weeks without it.

I also started to include goji berries to their smoothie, so hopefully this will also have a positive impact on their health.
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Andy Battaglia
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« Reply #11 on: July 06, 2020, 01:36:15 PM »

The herbal treatment is a very nice and nutritious formula.
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Andy

All we are saying is give thals a chance.
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