tuknits wrote on May 13th, 2010 at 8:26pm:Dan & Amalie,
Welcome to the Moyamoya forum. I am sorry to hear about your son. As a parent, there is nothing more frightening than to have a sick child. It can be even more scary when it is a disease that the doctors still have so much to learn about. Fortunately, there is some very good information here on the moyamoya site, some great people with lots of personal experience who are always willing to share, and as Mark (Luca's Dad) mentioned - a few excellent doctors in the US with moyamoya experience.
Again as Mark mentioned, the first step is definitely getting your son's scans into the hands of one of these doctors to address the best course of action for him.
As to the issue of heredity, I don't know the exact percentage in literature right now, but I think the last time I read the studies, they were estimating that approximately 10% of the cases of moyamoya were hereditary. They have some ongoing studies in this area and have identified some genes that are linked to moyamoya.
I know you are very worried about your daughter. As a parent, it is hard not to immediately have those thoughts. It was the first thing I thought of when I got my diagnosis - what about my children? do they have this too? So here are some thoughts/questions about that -
1. I don't know what the health care system is like in Denmark, but would the doctors give your daughter an MRA (magnetic resonance angiogram) - like an MRI - same scan but they are injecting dye to look at the blood vessels of the brain or a CTA (same thing CT angiogram looking at blood vessels)? These would not be definitive tests for moyamoya (that would be a cerebral angiogram) but they are non-invasive and would give a good indication as to whether any further testing is needed.
2. You mentioned earlier that your daughter had an epileptic seizure when she was younger. Did she have just that one or does she continue to have seizures?
3. You talked about your daughter's APD. I am a speech language pathology assistant and I am familiar with APD. While it is certainly possible that it could be linked to something like a stroke, it is also entirely possible that it is not and that it simply occurred on it's own. As you know, within the autistic spectrum, it is not uncommon for there to be a number of issues with things such as processing and planning (auditory, sensory, motor, etc.) Working with strategies to aid with communication, organization and structure can be challenging. It sounds like you are doing a great job in helping her to meet her needs. I would not necessarily see her APD as a sign that she has moyamoya.
Lastly, I would like say that this journey is not same for any of us. All that any of us can relate is our own experience and there are a lot of factors that contribute to the outcomes of our individual situations. While it is true that some people have not had good outcomes, it is also important to know that there are many who have done miraculously well - who are not just surviving but thriving- living wonderful and amazing lives.
Find out as much as you can about moyamoya.
Be the best advocate you can for your son.
Stay positive.
Tracey
Hi Tracy.
We know that APD does not mean that our daughter has Moya Moya but we can not help fearing if she is sick with the same disease.
She has had epilepsy since she was a baby. She had her last attack when she was 9 years. She is 15 years today. She stopped the medicine for about 1-2 years ago.
The reason that we suspect her to have Moya Moya, is because she is not like other girls. Sometimes we may well believe that she lives in a different world, and not perceive the world as we do. Sometimes I have often thought that she has a brain injury. It's like she has "holes" in behavior.
She has no friends, and she does not feel a need to be social with other people. We have tried for many years to help her make friends, but never succeeds. She is 15 years and has no interest in boys or clothes despite the fact that she is a very beautiful girl. She has no interest in the things normal girls otherwise use all their time.
Her memory is amazing, and incredibly bad at the same time. She can not remember little things. Hearing her a new song, she can sing it after one listening. The same with movies. She has a fantastic memory in some areas.
But we ask her a glass of water she goes into the kitchen and forget what she had to fetch!
Written messages work much better than saying it to her.
By making various measures like written instructions work she reasonably normal in our home.
But when she is with other people, she stands out markedly from other children her own age.
We have always believed that she had a mild degree of autism because she was not functioning socially with other children.
In Denmark we have the world's highest tax rate. So we have free medical care.
I talked with our doctor this morning and he thinks she should be checked if she has Moya Moya.
I await a call from Aalborg or Aarhus hospital today. The staff is to find some doctors who have sense of Moya Moya, so we can put an ongoing treatment for our son and daughter ..
We hope of course is not that our daughter is sick. We see enough negative at all in these days due to the shock of our son has been diagnosed with Moya Moya.
My wife was artificially inseminated a week ago. We have four children, and want child number five. Now the joy of a new child become a deep concern instead
I think all of our frustration stems from not knowing very much about Moya Moya. Although our hospitals in Denmark is regarded as the world's best, is apparently not many doctors who by very much about this disease.
We are very grateful for that DJ made this website. His site has done that we have a lot of knowledge, and we do not feel we are all alone in the world with this disease
Sincerely Dan & Amalie Riis, Denmark.
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