Tue Sep 21 12:00:00 EDT 2004
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Guest3956 entered the room.

Connie_Lee: Hi Guest3956

Guest3956: hi

Connie_Lee: Are you here for the Pediatric Medical Issues chat?

Guest3956: yes

Connie_Lee: You're the only other person who is here right now. Was there something you wanted to talk about?

Guest3956: i wasn't sure. I was checking my email and saw the chat time was now.

Connie_Lee: Do you have a child with cavernous angioma?

Guest3956: yes-in his brainstem. Mine is in my right temporal lobe

Guest3956: do you have a child with an angioma

>Connie_Lee: Yes, my daughter Julia has multiple cavernous angiomas

Connie_Lee: She's 5

Pooder entered the room.

Connie_Lee: How is your son doing?

Connie_Lee: Hi Pooder

Guest3956: my son had a bleed at the age of 20 months and has now fully recovered

Guest3956: he is 13 now but i worry about a rebleed

Connie_Lee: How often is he having MRI's?

Pooder: Hi Connie_Lee

Guest3956: at first yearly, but now every couple of years

Guest3956: hi pooder

Pooder: Hi

Pooder: My first time in a chat room

Guest3956: how about your daughter

Connie_Lee: What have the docs told you about rebleed?

Guest3956: mine too

Connie_Lee: Julia's an exception - she's had 4 surgeries, all on different angiomas. 2 were emergency

Guest3956: they said it would not be likely, but there is always an exception

Connie_Lee: My first time to chat was just a couple of weeks ago

Guest3956: where are her's located

Pooder: I have an angioma on the brain stem

Guest3956: have you had a bleed pooder

Connie_Lee: Are you still being treated by pediatric docs?

Pooder: Yes, in Feb. of this year

Guest3956: I started having seizures last year and am going for further testing to figure out if the angioma is causing them and then i may have surgery

Connie_Lee: Guest3956, how is your son about following doctor's orders? Do you think he'll keep away from things that might increase his chances of bleeding?

Guest3956: hi pooder

Pooder: Hi

Pooder: My first time in a chat room

Guest3956: how about your daughter

Connie_Lee: What have the docs told you about rebleed?

Guest3956: mine too

Connie_Lee: Julia's an exception - she's had 4 surgeries, all on different angiomas.2 were emergency

Guest3956: they said it would not be likely, but there is always an exception

Connie_Lee: My first time to chat was just a couple of weeks ago

Guest3956: where are her's located

Pooder: I have an angioma on the brain stem

Guest3956: have you had a bleed pooder

Connie_Lee: Are you still being treated by pediatric docs?

Pooder: Yes, in Feb. of this year

Guest3956: I started having seizures last year and am going for further testing to figure out if the angioma is causing them and then i may have surgery

Connie_Lee: Guest3956, how is your son about following doctor's orders? Do you think he'll keep away from things that might increase his chances of bleeding?

Guest3956: My son is great about following the docs orders. He decided to not play soccer in high school so as to decrease his chances. He joined the band instead. Have you been told excatly what to avoid?

Connie_Lee: Some things to avoid include aspirin/ibuprofen/naprosyn, cocaine

Guest3956: Pooder have you ever had surgery and how old were you when you discovered that you had an angioma in your brain stem?

Connie_Lee: I don't know about other illicit drugs, but stimulants are bad.

Pooder: I have not had surgery, they don't recommend it and I am 42yrs. old

Connie_Lee: Pooder, are you having symptoms?

Guest3956: Connie Lee I knew about the drugs to avoid. I've also been told to watch antihistamines as they are vasoactive drugs. Has anyone else been told this?

Pooder: I did for the first 3 months but things are much better now

Connie_Lee: Guest 3956 - Dr. Awad has talked about PPA, I believe it's called. It was taken off the market though.

Guest3956: Pooder, what were your symptoms and when did they start? I know they told us the surgery would be very risky as well

Pooder: The first symptoms were; numbing of the left arm and virtigo

Guest3956: Yes, it was in the orange triaminic. I have alot of worry about that one because I did give that to may son on occasion

Connie_Lee: Guest3956, how did you know your son was having trouble at 20 months?

Guest3956: You know Pooder, I also for a long time had the numbness in one of my arms and on the side of my face, but it was always attributed to hyperventilaltion by my doctors.

Pooder: I have had 3 MRI's, one being gradient, and that's when it showed clearly

Connie_Lee: Pooder, has having an angioma changed your daily life?

Guest3956: Connie Lee, my son woke up one morning with stroke symptoms--He had a very bad night and was very fussy. We knew that something was wrong, but didn't know how very wrong it was until the morning when he had trouble walking. I took him immediatly to the doctors which was right down the street, who then took him to the hospital

Pooder: My question is: Do many people live with this and still may only have minor problems in life? Or do they evenually grow into bigger problems?

Connie_Lee: It's so hard when they really can't tell you what's going on with them. I was so happy when Julia could finally tell me she had a headache or tingling, etc.

Guest3956: Pooder, I've been told that symptoms vary from person to person. You may never have a big problem with it.

Guest3956: Connie Lee, How did you know about your daughter?

Connie_Lee: Pooder, it really depends on the person. Lots of people have a single bleed and then never have another. Brainstem angiomas tend to bleed more often, but are still less likely to rebleed than they are to bleed.

Pooder: Well that's good to hear.

Connie_Lee: Julia's first bleed was at 4 months. She became really irritable over the course of a week. When she fell asleep it was different than usual - she just sort of passed out. Took her to the pediatrician who thought she might have ear infection, but noticed her fontanel was raised. Next morning she started projectile vomiting, and he sent us to children's hospital

Guest3956: Connie Lee, how did her surgeries go? Does she have any residual problems as a result?

Connie_Lee: She had surgery that day to remove a 4 cm CA that was causing hydrocephalus. Her floppiness was apparently coma. We would have lost her that day if they hadn't caught it

Connie_Lee: julia's had 2 cerebellar and 2 parietal surgeries. She has a small seizure disorder (absense, partial complex), some right hand fine motor problems, and attention/impulse control problems.

Connie_Lee: All 4 surgeries were successful at removing the CA's

Connie_Lee: The last surgery was a year ago, deep in the cerebellum and it was the one that caused most of the problems (or worsened the existing problems)

Guest3956: Connie Lee, I worry that I will have problems after my surgery, but the docs tell me it is surface and small. My other one is cerebellar also.

Guest3956: What probs from the cerebellum CA did she have?

Connie_Lee: Temporal lobe angiomas are usually better out than in

Guest3956: That's what I heard

Guest3956: Pooder, we haven't forgotten about you

Connie_Lee: She had balance problems, but also fine motor which seems strange, but the lesion was deep.

Pooder: I'm still here reading and absorbing.

Guest3956: I'm not even sure where my cerebellar one is, but they want to take care of the temporal lobe one first since I am having the partial complex seizures

Connie_Lee: Dr. Awad talked about temporal lobe angiomas at the family conference this year.

Connie_Lee: He mentioned that they usually have to take a little of the surrounding tissue, but this was no big deal.

Connie_Lee: Most often the seizures stop with surgery, but if they don't take enough tissue, they might not.

Connie_Lee: Also, I know from Julia - parietal/temporal/frontal surgeries are much much easier than cerebellar or brainstem in terms of pain and recovery

Connie_Lee: Julia has had hospital stays of less than 48 hours for parietal surgery

Guest3956: These seizures have changed my life as I have 3 children and I work--and now I cannot drive. I have adapted but I know it has been hard on my husband and kids

Connie_Lee: Are you on medication?

Guest3956: 48 hours hospital stay? WOW!!

Connie_Lee: It's not unusual to have a short stay with those kinds of lesions

Guest3956: Yes, I am on Keppra and Trileptal--huge doses that make me very sleepy. It is better now that I have been on them a while

Guest3956: What is your daughter on?

Connie_Lee: Julia's on Trileptal

Connie_Lee: They are considering switching her to Neurontin because of side effects of Trileptal

Connie_Lee: She has very slowed speech - kids make fun of her

Pooder: I'm still here reading and absorbing.

Connie_Lee: She has very slowed speech - kids make fun of her

Guest3956: I have had trouble with my insurance covering my Trileptal at a reasonable rate. I pay over 200.oo a month for my dose. It causes me slowed speech and numb lips and numb tip of my tongue also

Connie_Lee: She hasn't mentioned her lips and tongue, but I wouldn't be surprised if she had that as well

Connie_Lee: $200/mo - that's really excessive.

Connie_Lee: Pooder how had your life changed since the bleed?

Guest3956: When my meds kick in (usu. about one and a half to two hours after i take it) I really have trouble functioning. I seem to be in a "bubble". Like my speech and hearing and cpmprehension are really compromised

Pooder: I have a hard time making out things in the dark, It seems to of affected my vision some.

Connie_Lee: Julia gets a little nystagmus and also seems to have more trouble with everything. she has to take it 3x day instead of 2 because of side effects

Guest3956: Pooder, what kind of treatment are you on

Pooder: None at this time.

Guest3956: Well that

Pooder: Only an MRI once a year unless needed sooner.

Pooder: I am in the watch and wait period.

Guest3956: Well that's good. Maybe you won't have other problems. I pray that for my son and myself everyday

Connie_Lee: Pooder, brainstem angiomas are less likely to rebleed after a few years - somewhere in the 2-5 year range. I hope you are able to go that long without a new bleed.

Connie_Lee: Guest 3956, are you in any of the genetic studies?>

Pooder: That would be good, they said to strive for 6 months and then more.

Guest3956: My son keeps wondering when he will start to have seizures. I assure him that his may never cause seizures as it is a different location. I'm not sure if this is true. Connie Lee, do you know. How do you know so much. Do you know of a good book or a web site besides this one

Pooder: I have contacted Mayo Clinic which is closest to my home town and they aren't doing studies on this yet.

Connie_Lee: I started Angioma Alliance a couple of years ago because there was nothing on the internet or in books

Guest3956: Connie Lee, How do I find out about the studies?

Connie_Lee: Right now, we have some wonderful doctors who help us translate the medical info into lay language.

Pooder: This web site has helped me understand so much, before this site, I knew very little.

Connie_Lee: The studies are listed in the Ongoing Research section of the site.

Guest3956: Pooder, I agree, This is the first site i've seen that really helps you to make those connections with others that help you to feel that you are not alone

Connie_Lee: I'm wondering if there were any questions you'd like me to pass on to the doctors?

Pooder: I felt like the Dr.'s didn't know very much either.

Connie_Lee: We have a pediatric neurosurgeon, an adult neurosurgeon, a neurologist, and 2 geneticists

Connie_Lee: The docs certainly don't know how to prevent a bleed

Connie_Lee: Next year, we're going to begin developing a patient/family registry that might help them get an answer to this.

Connie_Lee: If we can find out what factors make one person more likely to bleed than another, we'll come much closer to a real treatment

Pooder: My sister's are worried that they may have this also.

Connie_Lee: Is there anyone else in your family that knows they have it?

Pooder: No

Guest3956: Connie Lee, I will have to look at the ongoing research section more closely as my mother also had an angioma as well. Her's was deep in the parietal lobe and she had a subsequent stroke during the surgery. She lived for 15 years after that and functioned indepently and died from unrelated causes. I have 8 other brothers and sisters but they do not want to be tested

Connie_Lee: Within the next 1-2 years, there will be a blood test available to test for all of the genetic mutations. It won't be cheap, but they may be willing to spend the $ if it will put their minds at peace

Guest3956: They are afraid of being unable to get life or health insurance if they know.

Connie_Lee: Guest3956, any of the studies would love to have you and your family as members. Do you know if you might be of Mexican heritage?

Guest3956: i am not. I know that I have greek, french, and spanish(from spain) heritage

Connie_Lee: There are a couple of genetic non-discrimination bills in Congress right now. Hopefully, the discrimination issue will go away soon.

Connie_Lee: How far back is the Spanish heritage? More than 100 years since immigration?

Connie_Lee: I'm asking because some of the studies are more interested in certain ethnicities than others.

Guest3956: I hope that discrimination law passes. I was told be a friend in the ins. industry that i would have to pay a large amount to increase my life ins.

Guest3956: I think my spanish heritage goes back at least 80 years

Connie_Lee: Which is silly because you are not very likely to die from a CA. I would think long term care insurance would be the only insurance issue.

Guest3956: I agree

Connie_Lee: You might want to check with Eric Johnson at the Barrow and Prevention Genetics first

Connie_Lee: He's really interested in working with people who might have the KRIT1 mutation - it sounds like your family might fall in that category.