More pieces of the puzzle (updated)

I decided to find a holistic physician that works with children to help us sort out what is going on with my son the past few months. While things change with puberty onset, I see things that tell me this is more than just puberty. I wanted to rule out nutritional deficiency and make sure this thyroid was working. I also wanted to see she could help us figure out this mysterious sensory thing.

I’ve noticed he became very tired the past few months even though he was sleeping sometimes 10-11 hours. He isn’t sleeping like he used too either. He’s up until past midnight, wide awake but his eyes are blood-shot (he is tired, but wired). He says his brain is too busy to sleep. Then of course good luck getting him up in the morning if he went to sleep somewhere between 12:40am and 3am. Worse yet, if he was sleeping before midnight, he was waking up sometime after 3am and unable to sleep. Plus..he just looks pale to me.

We spent over an hour with the new doctor going over everything from birth to now. I had to fill out a very extensive list of questions about everything from my pregnancy, his birth, his development, what he eats, his sleep schedule, his mood…etc. I was already impressed because any doctor we have seen in the past has never really looked at the full picture and history.

These are the labs the doctor ordered:

  • Comp Metabolic Panel
  • Ferritin
  • Free T3
  • Insulin
  • Fasting glucose
  • DHEA sulfate
  • Fibrinogen
  • Reverse T3
  • Pregnenolone
  • MTHFR
  • RBC Magnesium
  • Candida IgA/IgG/IgE auto-antibodies
  • 96 Delayed Food Allergy panel.

These are the labs I brought from the primary care doctor: TSH, Free T4, iron, Vitamin D, HCT, cholesterol/HDL.  This is about all they would check for us.  I was told the labs were normal, I got a copy and  he had low iron and low vitamin D. So..NOT normal.

What the extensive testing revealed:

  • He is homozygous (two copies) for MTHFR C677T
  • His adrenals are in wired/tired stage and need more support
  • He needs methylated B vitamins BADLY
  • He needs Phosphatidylserine at night
  • His DHEA is low
  • His Pregnenolone is also low
  • His fibrinogen is low
  • His Free T3 could be a bit higher
  • He has low ferritin and iron
  • He is low in Vitamin D
  • His glucose and insulin are elevated.
  • He needs a higher dose of MB12 than what he is on.

What supplements were recommended:

  • DHA
  • Methylcobalmin-B12
  • Methylated B complex
  • Phosphatidylserine
  • D3- 10,000 IU per day
  • Iron
  • Buffered vitamin C
  • Probiotic
  • Betain with meals or ACV
  • Adrenal Cortex in the morning
  • L-Theanine
  • Pregnenolone
  • A multivitamin with B’s, iodine
  • Selenium
  • Zinc
  • Protein
  • Chromium with meals* (my recommendation to help with managing the blood sugar issue)

He was already taking Adrenal cortex glandular, MB12 (non-GMO source), vitamin D, probiotics and iron. We need to continue these but raise the doses.

It seems from everything we discussed at the follow-up appointment that much of the issues we are seeing with low hormones, and deficiencies are related to MTHFR which led to low vitamin levels and adrenal function. She was also very pleased that I had done so much already and that we had already done so much chelation. I found out I had one copy of MTHFR only last year, so I suspected he had at least one. I didn’t suspect it would be two copies though which puts him at a 30% methylation rate. Sigh….

We have begun adding in the new supplements slowly. We do have a problem with tolerating fish oil, so I’m sorting out how to get DHA that won’t cause him to be nauseous. For years he took cod liver oil without issue, but about a year ago it began making him nauseous. I cannot get betaine or ACV into him, due to taste or unavailability in chewable form.

Now if only there was a palatable methylB complex for kids that can’t take capsules…….oh there I go dreaming that again!**

Update: Just a few weeks into adding in these changes and he is falling asleep by 11pm and sleeping the entire night!

Update: January 25, 2017: We discontinued pregnenolone and only supplemented at 5mg which was well below what the doctor recommended. I noticed he felt better on it for several weeks but then we began noticing it was causing anger so we stopped. (I had the same reaction to this supplement even though labs warrant its use). I did find a chewable methylated B that we like by **Jarrow Methyl B12 and Folate. We are also using Smarty Pants for Omega’s and additional B’s. While the dose is far less than the amount of DHA he probably needs, I’m happy to find something he will take so he can get some which is better than none. Perhaps in the future we will find a DHA supplement that doesn’t cause nausea for him.

 

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2 thoughts on “More pieces of the puzzle (updated)

  1. Pingback: Round 186…. | The Edge of Autism

  2. Pingback: Viruses? Still? | The Edge of Autism

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