Monday, 22 July 2013


I am crying uncle.....

OK, first of all, I want to let you know that I recognize and appreciate that my child is not suffering from a life-threatening illness.  I am so grateful that the supplements we are instructed to give him are to improve his life, not save it.  However, the picture above is of all of the supplements Nate needs to be taking right now, at least orally.  The shots and creams are not included.  The omega bottle is 2 tbsp a day, the red bottle, 9 tsp a day, and then the three powders, and 10 pills.  Nate of course cannot swallow pills so all capsules have to be opened up and hidden in drink/food.  Almost all of the pills are parts of the "mitochondrial cocktail" he was prescribed by the developmental pediatrician last week. 
Here is a bit more information on this:

This is all well and good.  I am enthusiastic about trying this with Nathan, and possibly Jack in the future.  Both of them had lab values that indicated this could be helpful for them.  But I have come to the conclusion that with the current supplements we have, getting all of this into Nathan is just not possible.  I have hidden things in his drinks (which I have been doing for years), I have tried mixing them with spoonfuls of maple syrup, almond butter, jam, and chocolate syrup. I have tried tucking the powder inside a fish stick, inside a chicken nugget.  I even tried in his fish oil (it's mango flavored).  Not gonna happen.  Now- in the past, (soon after diagnosis) he didn't notice or care about the odd tastes or gritty textures of the supplements.  I would bake calcium, vitamin c, and a multivitamin into his almond bread and he would gobble it right up.  So, his increased awareness is obviously a good thing, however, in terms of giving him supplements, I am screwed. 

I started doing some research on Saturday night because I figured there are lots of people confronted with this issue. 
I found this:

A compounding pharmacy assists mitochondrial disease patients by providing vitamins and supplements in a compounded capsule or liquid form depending on the needs of the adult or child patient.  There are many benefits to working with a compounding pharmacist.  Primarily, a compounding pharmacy can combine the vitamins/supplements in order to minimize the number of vitamins and supplements required, as well as to make the medication more patient more palatable in liquid or capsule form. They work closely with the patient's physician and take into consideration the patient's diet and diet restrictions as well as the overall medication plan.  A compounded medication is then developed which is unique for each patient and his/her specific treatment plan or prescription . The formulas are based on multiple variables, including the prescription, the patient's symptoms, the patient's diagnosis, weight, allergies, physician recommendations, etc. The goal is to work with the physician, patient and pharmacy in order to develop an ideal mix  (or "compound") of these vitamins and supplements that offers the patient the most ease and the least side effects.

We have been working with a compounding pharmacy for about two years now (, they provide the boy's methylcobalamin shots, and we order most of our supplements from their sister company (  To give you an idea of how useful compounding pharmacies can be- they ensure medications are gluten and casein free, they use very "pure" formulations, and they individualize medications as needed.  For instance, when we all had influenza A last winter, tamiflu in liquid form was out of stock everywhere.  We have a local compounding pharmacy, right below our pediatrician's office, and when I took the script there after trying all of the traditional pharmacies who couldn't help me, they said, yeah we're out of the liquid.  That's why we are opening the capsules up, re suspending them, and adding flavor.  I mean really- this is not that difficult.  How many kids could have benefited from this last winter if only they had known this was available? 

So I went to the Lee Silsby website and typed in mitochondrial.  Under the list of "medications we carry", lo and behold was-
  • Mitochondrial Formula Suspension

  • I emailed them immediately and heard back from them this morning.  They are going to consult with our pediatrician and work on a suspension that will be much easier for us to give to Nathan.  Thank goodness for this, keep your fingers crossed that it works out!

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