Why oh Why No meds,,

[mitoman]

This is an email I recieved from a friend of mine who"s grandchild has Mitochondrial Myopathy,, It never ceases to amaze me How the NHS passes the buck. as if its Another countries fault there are no resources for the very people who need it most, just take a look at this message and imagine this is your own baby in need..Bearing in mind the infant is fed through a tube,, first of all you have to know a little about what MITO is,,

from my friend- IM TRYING TO SOURCE CO-ENZYME Q10 IN LIQUID FORM WHICH GRACE TAKES BUT HOSPITAL JUST GIVEN IT IN CAPSULE FORM - THEY SAY THAT THEY GET THE LIQUID FROM THE STATES BUT AT PRESENT THE CUSTOMS ARE BEING DIFFICULT IN LETTING THIS INTO THE COUNTRY - BULLSHIT I SAY.ALSO ASKED ON MITO SITE FOR ANY INFO ON CHAIRS AS GRACE BECAUSE SHE CANT SIT UP, NEEDS A FIRM CHAIR. I SOMETIMES FEEL THAT THE MESSAGES ON THE CLIMB SITE ARE NOT VERY GOOD - THERE SEEMS TO BE NO CONNECTIONS OR FEEDBACK FROM WHAT PEOPLE SAY AND ASK. ALSO DAWN ( the mother ) SAID SHE WAS ARRANGING TO PUT ME IN TOUCH WITH ANOTHER FAMILY WITH A YOUNG BABY WITH GRACE'S CONDITON BUT TO DATE NOTHING.

TAKE CARE AND HAVE A GOOD WEEKEND
Can anyone help,,???

[craigwalsh]

Hi ---

Welcome to this new forum. I'm glad you persisted with the registration process, and look forward to reading your postings in the days and weeks ahead.

I just did a Google search for "Coenzyme Q10 liquid" and found dozens of websites in the States (as you said) that sell this in liquid form. Several vendors in the States said they would ship overseas --- click here (http://www.healthleadsuk.com/main.php?p=p&id=102). Would that work?

I use a mail forwarding service in the States. This allows me to order items from vendors in the States and have the items sent to the mail forwarding service in Florida. They, in turn, consolidate the shipments and send them to me in the UK. The folks in Florida are experts at international customs documentation, etc. --- they mostly deal with yachts that are overseas and need parts, etc., from the States. Please e-mail (craig@nhs-sucks.com) me if I can help in this regard.

I found a couple of UK websites that sell a Q10 hydrosoluble powder --- click here (http://lemonburst.co.uk/acatalog/Lemonburst_Tishcon_Corp_46.html). The "Lemonburst" product apparently dissolves fully in water. They also have a chewable tablet.

Have you seen the Mitochondrial Myopathy websites in the States, most notably the MDA site (http://www.mdausa.org/disease/mito.html) with its numerous links?

[Mike]

I would think that Great Ormond Street Hospital (GOSH) might have some useful information.

The Children's Hospital Of Pennsylvania (CHOP) is another font of useful information.