:)Hi folks,

As promised, here is the feedback on Lydia's appointment with her consultant paediatrician. I decided to be prepared so emailed in advance all my questions and concerns.

Lydia is considered to be middle risk, her scans are showing that her brain is forming lots of new blood cells and she has not had a stroke like incident in over 2 years.The medication she is on is called flunarazine and is very much favoured by the Japenese as it dramatically slows down the narrowing of the artery and allos the brain to form healthy blood cells that create a natural bypass.If she were to have the operation there would be a 10% risk of stroke, so its a matter of weighing up wether she needs the operation at this time as her medication is working.

However, Lydia  has been referred to Great Ormand Street Hospital for an assesment at the revasculisation clinic and she will be seen by Professor Faraneh Vargha-Khadem who is a leading expert in MoyaMoya in brackets is a brief desciption of the clinics role.

(This clinic at GOSH is to assess and follow up children who may require revascularisation of the brain, because they have a disorder that affects the blood vessels there. This type of condition is known as cerebrovascular disease.

Many of the children seen in the clinic have a rare condition called moyamoya syndrome, in which the main arteries that supply blood to the brain become blocked. When this happens, the brain receives its blood via alternative vessels or “collaterals”. In some cases these cannot supply enough blood, so the brain does not function normally. The child may suffer mini strokes (also known as transient ischaemic attacks.

In order to decide whether an operation could help a child with moyamoya or another form of cerebrovascular disease, the team in the clinic will carry out a number of assessments)


So hoping to get an appt soon and will post back on the site with the outcome.

Speak to you soon folks
Louise xxx

Louise,

That is an excellent email!  I hope you get your appointment soon, and get the guidance you need.  Thanks for sharing :)

The medication you mentioned in your post, flunarazine, really struck my interest... I never heard of that used to help slow down the progression of moyamoya.  The reason I'm so interested is that I  recently read a study on the drug about its use in the type of seizure disorder that my daughter has (infantile spasms).  The study showed that the drug might prevent the cognitive deterioration associated with infantile spasms.

If you have any more information on this drug's use in moyamoya, I would really be interested!!

Thanks,
Jenny

Hi Louise...

...interesting email...re: a drug that slows progression...I did ask my doctor one time if there was anything that would delay the narrowing of the arteries in Cara's brain when she was first diagnosed and he said something like...we aren't sure if she actually has MM or if it is something else..so I never got an answer but I'm sure we would have known about it by now unless it is something new that just came out.  

Keep us posted.

Thanks,  CarasMOM

louise_and_Lydia wrote on Jul 20^th, 2005 at 6:26pm:

:)The medication she is on is called flunarazine and is very much favoured by the Japenese as it dramatically slows down the narrowing of the artery and allos the brain to form healthy blood cells that create a natural bypass.

Great post, Louise - Hang in there!  You'll get the answers you're searching for!

Does anyone know if this drug "Flunarazine" is approved in the United States?  Is anyone else on it on this board??  Just curious...

-Shari

Hi Folks,
Thanks for your responses, I am going to try and find out as much as I can about Flunarazine and will post info back onto the web site.
I will also explore its benifits via the revasculisation clinic once I secure an appt and get their feedback on the drug. I think a lot of the Japenese sites may have a lot of info as they have been favouring this medication for some time .

Speak soon

Lou xx :)

I found one article mentioning this drug for the treatment of some types of headaches, but it stated the drug was not available in the US.

Sorry...I'm a rookie at the cutting and pasting thing to get articles over here!  I searched the drug on WebMD and got a hit but there was literally no more infortmation than what I stated above.  We'll look forward to what you find our for us, Louise!  I'm thinking of you and Lydia and hope that you get a good report from the clinic!!

Hugs~Chelsie

Hi ,update so far
some info on its availability as follows
Flunarizine (trade name Sibelium) a calcium channel blocker
Not commercially available in the U.S so your right in that fact chelsie!
known as Sibelium in Canada and can obtain without perscription it seems

drug info found at following url;
http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202107.html#SXX35


but will update more specifics re how drug helps moyamoya once known

Lou :)