Category Archives: Post Appointment Review

Post appointment Summary – May 2011

Sorry, I should have done this a week ago.

Our Dr had the results of the barrage of blood tests we had done.  Some of the results they returned included confirming the thoughts of low vitamin A and zinc, high copper and a double blockage at the MeTHFR position on his methylation cycle (once I get my head around it, I will do a post about this to explain to both of us) .  Celiac disease was also  ruled out.  Our doctor was surprised that he had vitamin D levels within the normal range.  I’m sure there were more but I can’t think of them right now.

Once we had reviewed these blood tests we moved onto the areas that I felt needed help.  Fortunately, I’d thought about this in advance and made a list to take with me.  The areas that I had written downs were;

  • bedwetting,
  • not going to bed until late ( just wanting to go go go and not wind down),
  • eczema flare up badly around the backs of knees, elbows and neck,
  • task focussing (Kinder mentioned that its difficult to get him to stay focussed on a task such as cutting out)
  • pencil grip (although he can manipulate lego with quite a lot of ease),
  • lolling, leaning and laying about ( he is always leaning on things and prefers to lay on the floor than sit. As a baby when asleep we called him our ‘floppy baby’.  Now I think about it maybe this is also tied into his not sitting, crawling an walking until much later than most babies at -I think- 9,11 and 13 months respectively)
  • speech (much improved already but a long way to go)
I do love how our Dr conducts our appointments by writing down notes as we speak and then copies them so we each have a copy.  This makes it so much easier to review the notes later.  So how are we addressing each of these issues?
One of the first things is to remove soy and corn from his diet in addition to gluten and dairy. As he also seems to have an issue with the digestion of nuts (a few seems to be ok but lots will cause diarrhoea).  This may all be linked to sensitivity to oxylates, which is something to investigate later on.
So going in the same order as above;
  • bedwetting – magnesium brought up to 400mg per day
  • not going to bed until late – increase Cod Liver Oil to 6mL per day
  • eczema flare up – change zinc sulfate supplement to  picolinate  as a compounded 1/2 strength primer which also contains vitamin B6 and P5P
  • task focussing – add the amino acid Tyrosine 500mg per day
That leave the last 3 areas
  • pencil grip
  • lolling, leaning and laying about
  • speech
As our son has a double blockage at MeTHFR, the usual protocol is to supplement with methyl B12 injections. This will help his speech and pencil grip as (I believe) it helps regenerate the nerves. There has been research though that in some patients, methyl folate has a better result. The absence or presence of chemical markers in a urine test will show the best supplement to use.  This organic acid profile will also show any markers which may also point to problems with mitochondrial function. Its the mitochondrial function which is behind fine motor skills and energy levels.  The mitochondrial are the power stations of the body within each cell. Additionally it will show markers indicating gut bacteria which has an impact on cognition.  Expensive little test at $Au400 but very much worth it.
Once his vitamin A levels improve, there is also Bethanacol which also acts on the speech pathways with some kids going from low language to speaking in sentences in an hour.  It just goes to show that its not lack of ability or intelligence in many kids but just lack of the complete bio chemical pathways.
So right now we have implemented the changes as noted above and are waiting on these results and hoping they are back before our next appointment.  As our son hasn’t replaced milk with another calcium drink, we have also supplemented in calcium at 600mg per day.
I really want to move onto the methyl b12/folate supplementation as from what I read, this is the thing that really makes a huge difference.
We have already seen changes in the last week and a half.  His eczema is clearing, his speech is better.  He is able to express his thoughts.  He is coming out with multiple sentences up to 10 words long.  He has come such a long way in such a short time.  4 months ago, we were lucky to get a disjointed 6 word sentence in reply to a leading question.  That was the best language he could express.  Now you can hear his thoughts coming out.  The night before last I was sitting in bed with him and using our new netbook.  He looked at me and said “We have 4 computers”, in a tone that really expressed that he had been thinking about it. He is expressing observation, feelings, putting concepts together. I wonder if his speech therapist will notice any difference at our next appointment on Friday. Its just so encouraging so see how far he has come already and how much potential is just under the surface but needing the right help to get it out.
So in summary, our current protocol is;
  • gluten,dairy, soy,corn free
  • CLO 6mL/day
  • Ca 600mg/day
  • Probiotic (SacroB) 1/day
  • Magnesium gycinate 400mg/day
  • 1/2 strength primer 1/day
  • tyrosine 500mg/day
CLO in medicine cup
Probiotic, magnesium, primer in apple juice
Calcium as a soft chewable capsule
Tyrosine mixed into margarine on a rice cake.  I do want to find a better ‘treat’ to mix this into such as coconut ice.
Once again, this is a medical protocol prescribed for our sons specific medical condition.  This is not generic advice and should not be taken as medical advice.  Please consult your doctor or go to the Interesting Links page to find a Bio Medicine practitioner.

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