Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: TKDgirl7 on January 26, 2020, 07:07:32 PM



Title: Just how it is?
Post by: TKDgirl7 on January 26, 2020, 07:07:32 PM
Hi again,
Posting again about my son, now 5.  He's again feeling quite fatigued, he's falling asleep around 5:30-6:00pm and sleeping until we wake him at 7am for school, this happens 2-3 times per week.  Weekends are better.  I just had his ferritin checked and he's still in the low normal range.  I'm waiting on a new CBC, but he has been ranging 9.5-10 for Hb.  We are going to see a dietician and he is scheduled for another visit with with the hematologist in March, which will include an ultrasound of his spleen.  Is this level of fatigue just what I should expect, or are there other things I should look into?  We've already been to the GI and everything came out fine, no bleeding, no celiac disease.  Is there anything else we should check?  Anyone else have thal minor kids with a lot of fatigue?  I know school takes a lot out of him, it's just hard because essentially he gets up goes to school and then is sleeping until school again:(. 


Title: Re: Just how it is?
Post by: Andy Battaglia on January 30, 2020, 05:50:50 PM
The Hb is a little on the low side. Is he eating well? Iron rich foods and folate containing foods may help. Sublingual B-12 may also help. Have you tried having him take a nap earlier in the afternoon, to see if he can be awake again until early evening? Many thal minors tell me naps are extremely helpful. I imagine going to school has to be very fatiguing.


Title: Re: Just how it is?
Post by: TKDgirl7 on January 30, 2020, 10:01:51 PM
Hi Andy!
I did add a sublingual B12 about a month ago and I also have him taking 400mg of folate.  His Hb came back at 9.8, which seems low to me too.  At school they have rest time, but I never know if he actually napped, and he is offered snack every two hours.  His diet still isn’t great, that’s where I’m hoping the dietician can help me.  His weight is okay, he’s slender but not losing weight.  I agree naps are so helpful, I wish I could take an early afternoon nap everyday!  Is there any chance this is more like intermedia even though he would have a heterozygous inheritance of beta thal? As far as I know my husband doesn’t have any hemoglobin abnormalities.  My other son has a Hb of 10.9 both times he was checked, which is right in range with my Hb.

Thanks,
Crissy


Title: Re: Just how it is?
Post by: TKDgirl7 on February 01, 2020, 10:57:51 PM
Hi Andy,
Could you also review his most recent CBC? 
White blood cell count    5.91K/uL    5.5-15.5K/uL
Red blood cell count       5.05M/uL.   4.00-5.20M/uL
Hemoglobin.                    9.8g/dl.       11.5-15.5g/dL
Hematocrit.                      30.9%.         35-47%
MCV.                                61.2fL.         77-95.0fL
MCH.                                19.4 pg.       25-35.0 pg
MCHC.                              31.7 g/dL.    32.0-36.0 g/dL
RDW.                                 32.8 fL         37.0-50.0 fL
Platelet count.                    337K/uL.     150-440k/uL

Reticulocyte Count Percent.  1.8%.        .5-2.0%
Reticulocyte Count absolute.  .090 M/uL  .026-.095 M/uL
Immature Reticulocyte Fraction. 11.1%.   2.3-13.4%
Reticulocyte Hemoglobin.           21.8 pg.  24.1-35.8 pg
 
Thanks!
Crissy


Title: Re: Just how it is?
Post by: Andy Battaglia on February 07, 2020, 03:52:37 PM
Hi Crissy,

It does not look like intermedia. The Hb would be lower and other physical problems might be present. I do think the MCV and MCH are low enough where iron might also be a factor. Hopefully, this will improve as his diet improves.
Has he been DNA tested? I am curious if he might carry a beta zero thal minor mutation.


Title: Re: Just how it is?
Post by: TKDgirl7 on February 09, 2020, 01:33:06 PM
Hi Andy,
Yes, we are beta thal zero.
His ferritin is 45 now so it’s dropped from 65 after his first infusion.  Last year around this time he dropped from the 40’s range to below 20 in a month so he’s hard predict.  He doesn’t respond to oral iron either.  He goes in again in March so we’ll see if he needs another iron infusion.

Thanks,
Crissy