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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55292 Posts in 5909 Topics by 6204 Members
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 1 
 on: May 24, 2020, 01:49:04 PM 
Started by BashX - Last post by BashX
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.


 2 
 on: May 20, 2020, 02:46:19 AM 
Started by Lingonskrutt - Last post by Lingonskrutt
Thank you so much! I will try with folate 

 3 
 on: May 19, 2020, 04:59:16 AM 
Started by Legopot - Last post by Legopot
Hi,

I'm from Malaysia. Through electrophoresis tests, my husband is beta carrier while I'm unaffected.

However, my 12 month old baby's hbf reading is 8.8% which makes a delta-beta diagnosis. I was told that it's considered beta intermedia because it's not major by definition but also doesn't fall into the classic trait readings.


Please help me out but sharing with me what to expect, how bad can it get, and what to look out for.  I'm advised to ignore, live life as per normal but to go back for another reading at 1.5 years old.

I feel terribly lost as I always thought unaffected + trait will result in a carrier ar most. Im feeling terribly overwhelmed seeing delta beta can be as severe as major thalassemia. Any info at all, will be helpful.
 

 4 
 on: May 18, 2020, 02:02:34 PM 
Started by vampirebaby - Last post by Andy Battaglia
The standard dose is 20–40 mg/kg/day for children. That should only be exceeded by a doctor's orders.

I would suggest trying a low dose of deferiprone to see if it can be tolerated.

 5 
 on: May 15, 2020, 08:22:32 PM 
Started by vampirebaby - Last post by vampirebaby
Andi, Eva was on exjade for 2 years. It ended up giving her a duodenal ulcer which perforated. Her LFTs were completely out & excretion of calcium increased. She just didn’t agree with exjade. So it’s no longer an option for her.

The only other option is deferriprone.

Would it no longer help give her a months break from desferal and then resume on a lower dose?

Do you know what the maximum dose of desferal is for kids?

 6 
 on: May 14, 2020, 11:16:37 AM 
Started by vampirebaby - Last post by Andy Battaglia
You would be best to take a long break from desferal. I have heard doctors say that patients are better off if they do not use the same chelation drugs for years, due to the cumulative side effects (hearing loss being one of them) that patients can experience over many years. It may be time to try one of the Exjade drugs. I would not rule out desferal for the future, but a good break is called for.

 7 
 on: May 14, 2020, 11:14:05 AM 
Started by thalbmum - Last post by Andy Battaglia
Yes, thal minors often have low blood pressure and may be deficient in B-12 and Folate. Due to the higher need for these vitamins to produce red blood cells, I always recommend both sublingual B-12 and Folate (not folic acid).

 8 
 on: May 14, 2020, 11:12:23 AM 
Started by himynameishuman - Last post by Andy Battaglia
Sulfur drugs can cause a breakdown of red blood cells in thalassemics. Sulfur should be avoided whenever possible.

 9 
 on: May 14, 2020, 11:11:16 AM 
Started by venkata - Last post by Andy Battaglia
The high bilirubin in thalassemics is caused by the overproduction of defective red blood cells, which are filtered out of the blood, usually by the spleen. This process causes bilirubin to be produced, which can eventually lead to gallstones or more likely, sludge in the gallbladder that is not always noticed in scans. Quite often, the patient eventually will need to have the gallbladder removed. This will not cause the thalassemia to become a worse type of thal.

 10 
 on: May 14, 2020, 11:08:23 AM 
Started by thalbmum - Last post by Andy Battaglia
Thal minor does cause a lower oxygen level in the body and this can cause asthma like issues. It's not that there is actually any lung problem interfering with breathing. It's just lower oxygen concentration. Relaxing and doing slow deep breathing can help when this occurs. Many people tend to hold their breath when stressed, when they should be focusing on breathing. Watch for any sign that she is breathing shallow and try to help her relax and breathe.  Most thal minors will learn they have physical limits and learn to recognize when rest is needed. I know next to nothing about teaching autistic children, so I can't give any advice on how to do so, but anything you can do to help her learn to relax and breathe will help.

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