08/22/03

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Spring arrives at last.

Log Pile Still a bit cool - Rebecca playing by the log pile.	Lazy Cat Found a place under the coffe table to have a nap!
Green Appearing ...on the trees in the back yard.	First Cut ...of the year. Mandy about to get the tractor stuck!
Pond Side The trees coming into blossom.	Bloom A close up of the fresh colours now evident all around.
Glass Pond A still evening looking over the pond.	Free Stamp Rebecca stood next to the larger than life stamp - Lake Side, Cleveland.
For Alison A gift - the picture, not the car - sorry!	Mall The biggest mall we have found around here - Cleveland!
Rare Me A picture of me in the mall with Rebecca - thanks for the picture Mandy!	Birthday Girl The delights of being 6 and opening all those presents!

News Update (21st April, 2002)

MRI scans of Rebecca and Mandy's brains came back clear a couple of days ago.  An April page has now opened with a few pictures taken in the last couple of weeks.  Spring is in the air!!

News Update (4th April, 2002)

A lot has happened this week following our initial contact with Yale AVM Center.

We have spoken several times with the world guru of AVM and HHT treatments, Dr. Robert White and are already in the process of making plans for Rebecca to be seen in Connecticut in the second week of May.  Not only that, but Mandy is suspected of having HHT, the condition that is likely to have produced the PAVM's on Rebecca.  She too will undergo tests at Yale.

There are several things to sort out before we can make the 550 mile trip to New Haven, not least of which is clearing everything with the medical insurance.  Rebecca and Mandy will both have MRI brain scans in advance of the Yale tests (check for AVMs on the brain).  These can be performed 'locally' at Columbus or Akron.

This is the provisional plan for Yale: -

As you can see, from having no plan, we now have some clear direction from an organization that are anxious to help.  In return, Yale will hopefully gain more experience with this very rare childhood condition.

For the inquisitive amongst you, you can read a paper co-written by Dr. White entitled "Diffuse Pulmonary Arteriovenous Malformations - Characteristics and Prognosis".  It describes exactly what Rebecca has and gives the following conclusions: -

"Patients with diffuse pulmonary AVMs have a fairly good prognosis and can lead productive lives.  In a select group of these patients, small improvements in oxygenation can be obtained by PFR (pulmonary flow redistribution).  However, patients with diffuse pulmonary AVMs are at increased risk for neurological complications;  therefore antibiotic prophylaxis and TCE (transcatheter embolotherapy) of the larger AVMs is of utmost importance."

The broader plan is to first characterize Rebecca's PAVM's, then occlude the larger ones that present a risk for strokes and brain abscess.  Looking a little into the future, the hospital will no doubt examine whether PFR is likely to benefit Rebecca.

A recommendation from Dr. White is that all the family members on Mandy's side be checked out for HHT.  HHT is a genetic disorder passed down from generation to generation.  If this could affect you, and you haven't already read the HHT page, I suggest you go there and learn.  To give an indication of how it can be passed down, Mandy spoke to a member of the HHT Foundation who has liver AVM's - the mother has GI bleeding and the son has PAVM's.

The bad news is that the only hope of a meaningful check-up would involve a referral to Hammersmith.  This is where many of the specialists at the Yale AVM Center have been trained.

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