Thalassemia Patients and Friends

Discussion Forums => Miscellaneous Questions => Topic started by: sumit_thal on April 17, 2013, 04:19:28 PM

Title: thal minor and autism
Post by: sumit_thal on April 17, 2013, 04:19:28 PM

Hello all,

My 18-month old toddler is diagnosed with Autism. he is thal-minor too. As we ramp-up on the difficult journey of therapies, biomedical changes, diet changes, anti-fungal/anti-viral biomedical treatments, I was hoping to ask a few questions:

- Are there other folks with thal minor who have dealt with Autism ?
- Are there any supplements we should stay away from due to his thal-minor status ? One of the recommendation is high Vit-C dosage. Would that harm him in any way ?
- His latest blood work shows:
    RBC : 5.4
    Hb : 9.5
    Hematocrit: 30.8
    MCV : 57
    RDW : 21
    MCH : 17.6
    MCHC : 30.8
    Vit-D : 19 (very low)
- His iron report is as follows:
    Ferritin : 8  (7-150)
    Iron, Serum : 99 (20-158)
    Unsaturated IBC : 320 (155-300)
   Total IBC : 419 (250-450)
   Iron Sat  : 24 (20-50)

We are starting on GFCF diet, multi-vitamins, Omega-3, Vit-D etc. And many more supplements I need to figure out.

- Does anything in the blood work show Iron deficiency ? Anything else jumps out ?


Thanks a lot!











   

Title: Re: thal minor and autism
Post by: Andy Battaglia on April 18, 2013, 01:52:16 AM

The serum iron and TIBC are both very normal. Ferritin is on the low end, but is not a reliable measure of iron deficiency. There is no limit on vitamin C intake for thal minors. Please be informed that vitamin D deficiency can only be corrected by large doses. I took 2000 IU daily for 2 years and my level only reached 19. A year of 5000 IU daily got my level up into the mid 30's. Doses as high as 50,000-60,000 weekly are often used to correct deficiency more quickly.

And again I want to recommend that parents always ask for preservative-free vaccines for their children.

Title: Re: thal minor and autism
Post by: sumit_thal on April 23, 2013, 04:06:59 AM

Thanks Andy. Would it be safe to give dosages as high as 5000-10000 IU for such a small toddler ? A little worried about too much Vit-D. Can that be toxic ? For now, I'm keeping him on 1000 IU, but if safe, I can bump it higher.

Also, would it hemaglobin of 9.5 for 18-month thal minor bother you ? He is quite active, lots of energy. Takes one nap in the afternoon.

Title: Re: thal minor and autism
Post by: SamanthaDawn on April 23, 2013, 04:27:03 AM

my daughter did fine at that level when she was that age, anything over 9 was good for her but each child is different

Title: Re: thal minor and autism
Post by: Andy Battaglia on April 23, 2013, 02:54:34 PM

Sumit, is the child taking folic acid? 9.5 can be normal for a thal minor, but folic acid is always a must.

Title: Re: thal minor and autism
Post by: sumit_thal on April 25, 2013, 02:43:26 AM

Hi Andy, his multi-vitamin has 200mg of folinic acid. Is that the same as folic acid ? Is that dose ok for 18-month old thal minor ?

Title: Re: thal minor and autism
Post by: sumit_thal on April 25, 2013, 02:47:02 AM

Found some relevant information:
  http://www.autismcanada.org/treatments/biomed/folicacid.html

Title: Re: thal minor and autism
Post by: Andy Battaglia on April 25, 2013, 03:16:37 AM

Yes, and in addition to its value in thalassemia, there is much research into its value in autism.

Title: Re: thal minor and autism
Post by: sumit_thal on April 25, 2013, 03:42:02 AM

Hi Andy, any opinions on dosage of folinic acid ?

Title: Re: thal minor and autism
Post by: Andy Battaglia on April 25, 2013, 04:07:48 AM

Is it mg or mcg?

Title: Re: thal minor and autism
Post by: sumit_thal on April 25, 2013, 12:12:00 PM

My bad. It is 400mcg.

Title: Re: thal minor and autism
Post by: Andy Battaglia on April 25, 2013, 01:34:40 PM

It's an acceptable dose.