does anyone no how to get the word around about my daughter condition in america???doctors in england have only come across 8 people with her condition in uk and she is the youngest at 16…its so rare but docs do keep saying we need to find someone who is willing to treat it but so far 5 differnt neuros are saying its just to risky and wont touch it…just scares me have i really gotta wait 4 it to bleed before they will touch it as thats what there saying at the moment…any info would be brill please
does anyone no how to get the word around about my daughter condition in america???doctors in england have only come across 8 people with her condition in uk and she is the youngest at 16…its so rare but docs do keep saying we need to find someone who is willing to treat it but so far 5 differnt neuros are saying its just to risky and wont touch it…just scares me have i really gotta wait 4 it to bleed before they will touch it as thats what there saying at the moment…any info would be brill please
Hi Lisa,
I came across your post while looking for information on CPA – I hope you and your daughter have had some resolution/positive outcome? My daughter is struggling and the doctors here (Canada) are unable to do anything beyond seizure control.
Hope to hear from you.
Hi Sophie were good thankyou. Yes there is no treatment for my daughter she is on toparamate to try and control her seizures. Do u have these regular ?
Lamotrigine is working fairly well for seizure control but lots of other issues – left sided weakness, trouble with word finding, concentration, memory and general exhaustion. Similar for you?
Yes my daughter has weakness on right side. Are y able to drive?? Dvla have refused her once 3 yrs ago we have applied again still waiting after a year see if they will let her or not😫 And have they ever mentioned to you if it’s safe for you to start a family?? Different neurologist over ere say different things.
Not me – my daughter. No, she lost her license and I see littl e chance of getting it back. Particularly hard because she had her own car so that is yet another loss. She can’t go to school or work – does your daughter?
Last time she asked, the answer was yes on family with the proviso of strict controls on seizure drugs and a c-section.
Are bless her how old is your daughter mine is 22 now found out when she was 16 she still struggles but hates to think she is different how old is your daughter? My daughter is tired a lot and like u say concentration is very poor remembering things even harder but she as for herself a little job just 2 days a week which is more than enough for her. Have they say what grade your daughter is ? Georgas is large and a grade 5
It is very hard – hardest for them but bad for mothers too. My daughter is 28 – avm discovered 10 years ago and reclassified as cpa four years ago after a series of very bad seizures. Yes, grade 5 and then larger! I find she is becoming weaker as time goes by. Wonderfl that Georgas is able to have a job – such a boost to confidence and social life.
It is hard I find Georga as a very short temper aswel and if she as any stress it makes her very weak. Have they said what the chances are off her having a bleed? They said georgas is stable at present she used to have mri every 6 months to check on it. It’s now every year. Neuros over here don’t really no much about her condition and when we go to see them Georga keeps a lot from them which is very frustrating for me. Georga had symptoms from the age off 6 but hospital put it off as migraines and arthritis until she started sayin she could smell rubber all the time and gas that’s when they decided to do a mri. And discovered it
They think that a bleed is very unlikely – no percentages given. Otherwise, they don’t seem to know much at all. I have read articles in neuro journals – understanding some of the words (!) and have the impression that the prognosis is general decline rather than a catastrophic event. Yes, Gillian had symptoms as a young child which the doctors dismissed until a prolonged series of seizures at 18 led to mri and angiogram. And yes, she doesn’t tell the doctors everything – I think she doesn’t want to admit to herself what is going on. How are you bearing up?
At first when I found out I found it very difficult was scared to death to even leave her alone. I have got better but every morning when I wake her up I get scared!! it’s awful seeing her friends with so much energy even myself I have more energy n strength than Georga that’s upsetting to see she has difficulty in opening things and her right side is weak just walking far can exhaust her. Does your daughter have much off a social life? How do u deal with it do u work?
I agree with all of that! I live with constant underlying fear. She has so little energy that she has a very limited social life and very few friends – hard for the other young people to understand a chronic or degenerative condition. I know it is right that they move on with their lives but it is so hard for her to be left behind. I work but fortunately have flexible hours – it’s very good for me to get out and away but it does seem to rub it in that she can’t. Are you working? family supportive?
@lisa_b @Sophie I’m sorry to jump in here as the question was asked many years ago. There is a more recent answer. The Division of Neurosurgery, University Health Network, University of Toronto has been studying Cerebral proliferative angiopathy for some time now. They have developed a technique using PET which has yielded some fascinating material. One of the things they learned is that the entire brain hemisphere is often involved (explaining the progressive nature) They have found some relief for patients by partially treating the “thing” in the outer periphery with some non invasive techniques. It might be worth a letter. At the very least they are at the edge in terms of research and treatment.
Here is an overview of what they are doing (its not the most recent stuff)
Its just an abstract but most hospital libraries will have the text and of course there is always google academic
Another great source with some recent research is Boston Children’s Hospital one of the only centers in the world with expertise in treating Moyamoya disease. (similar but different) They just published on Cerebral Proliferative Angiopathy some pretty exciting stuff:
Thanks – I’ll read up. My daughter is a patient at the University Health Network – they can’t do anything for her. I do appreciate the links.
I would not mind the address for this hospital in Toronto see if I could send my daughters images and notes over to them
Lisa
I think you’re looking for this…
http://www.uhn.ca/healthcareprofessionals/Pages/refer_patients.aspx
Richard
Hello Sophie,
I am Melissa, Mother to Kate who is 12 and diagnosed with CPA. I live in the US and my experience this year has also been no interventional radiology treatment or surgery since this disease lives within normal brain tissue. We have known since she was 5 that she had two legions in her brain. Each year we had an updated MRI and watched these vessels continue to grow, covering most of the left hemisphere, but also on the left. Symptoms now are about once a month episodes right side weakness followed by exhaustion and migraine. We have had scans to Johns Hopkins , University of VA, CHKD in Norfolk, and Boston. All have said no intervention and referred us to Neurology for management of symptoms. Currently our daughter is leading a fairly normal life, however besides the setbacks with her monthly episodes, I am noticing the frequency of being tired, difficulty with learning such as memorizing of math facts, having to repeat instructions or over explain what we are reading, or just a general “malaise” affect. In other words, a little out of it at times. I did take her out of school at the end of 5th grade because her processing is slower and she was having to work twice as hard to keep up. We are homeschooling and the lower stress has been helpful. Needless to say, we are devastated by the diagnosis and have been shocked at the lack of knowledge and treatment available. CPA certainly falls under the category of Rare Disease, as do many other vascular brain anomalies. I have learned from some other Mother’s who have started groups for their own child’s vascular brain disease , that there is power in numbers. We need an Alliance that pulls others from around the world with this condition. We need genetic material for research and discover how we can, at the very least, control the vessel growth. The prognosis of slow neuro degeneration is as painful as a sudden hemorrhage, which CPA is at lower risk for. However, we are suppose to watch our children meet milestones and grow independent, not decline with each passing birthday. I wish I had a magic bullet to offer, and I am deeply fearful for my daughters future but I will not stop searching for the answers and if the answer is not currently out there, then we need to find one. If you hear of anyone at all, perhaps even ask your own hospitals for names of people diagnosed with CPA, have them post here and lets get this ball rolling for the future of our children.
Hello,
Thank you for the article. It seems that the PET technique is simply another diagnostic tool to further help distinguish CPA from other similar vascular brain anomalies. Am I wrong in this? I still have yet to come up with anything of substance in the treatment or even cause of CPA. Currently there doesn’t seem to be any genetic findings nor can I find anyone researching it specifically. My 12 year old daughter is living with the diagnosis and its affects.