My grand daughter received her report card this past week and it showed absolutely no progress. Her progress either remained the same or dropped below “basic” level. She really seems to be having a hard time with math and sentence structure (where to place punctuation). I will not go into detail on Grace’s AVM (history, size and location) since it is all written on my page. I am just thinking that the AVM will slow or limit her learning progression. She is only 6 and has many years of education ahead of her.
Hi Cynthia from what I have read that area can have problems with writing and mathematics. She will probably need extra help in school so she doesnt feel overwhelmed or left out in group work at school. Plus with some extra work in school and at home she wont get behind and wont have to be held back. Its just going to take her longer to do the work in school. Best of luck and I hope she doesnt get discouraged. I know that at 28 I have a hard time realizing what things are. The other day I had no clue what a grilled cheese was, until I sat here and thought about it for about 5 mins. Most of us brain avms have some learning issues with our avm’s and the location in the brain!
Cynthia, Has it been treated yet? There is a good chance that once it is gone, she will live a very happy and productive life - just like a child should.
Considering the size of her avm and its location - I would tend to believe that it does have some effect of her learning. Just how much, I don't know. I think when helping her with her school work, try to get a good description of how she is feeling. Does she feel any pressure in her head, trouble concentrating, those kind of things. These are just my own ideas, that may be helpfull to know.
On the other hand -- she could be normal and feel healthy, and just have trouble learning those things right now. It's only my thoughts on it. With such a loving grandmother (you) on her side...she will prevail!! (wink)
No Ben, no treatment - just monitoring - large - no bleed. She’s had seizures, stroke-like symptoms, some headaches, personality changes - developed fears - very sensitive to loud sounds. Yes, she does have trouble concentrating and says “she can’t get her brain to work right”. That is why I am thinking her slow progress is related to the AVM. Thanks for your input!
Andrea, Thanks for your comments. I just saddens me when I think of all she may have to face in years ahead. - Cindy
Cynthia, I know I don't know anything about how kids are treated different than adults are, with there avms. Having said that -- I don't understand why they would wait to treat her. That makes no sense to me.
I don't know who your doctor/hospital is. I also live in PA. I've heard good things about Jefferson Hospital in Philadelphia. I had mine treated by Dr. Lunsford at Pittsburg Presbytarian Hospital. Perhaps you may want to consider getting a second opinion (just my thoughts on it, thats all) It breaks my heart to see a child have so many troubles when I know (there's got to be) there's a doctor some where who can help her.
Your last comment on here explaining some of granddaughter's troubles --Hit home with me. I suffer with the same thing so... I can relate to your granddaughter very well. The big difference is, of course, I'm an adult and she is just a child. This just breaks my heart... I know how hard this is for me, I can't imagine being a child and going through this.
What meds is she on? If you don't mind sharing, that is. I want to help her the best that I can!! To not treat her and just monitor it..makes absolutely no sense to me. There must be something different in treating a child compared to treating an adult, that I don't understand. I'm going to give this more thought. Needless to say, I have a lot of experience at what she is going through.
How well is she sleeping? It's important for her to get a good nights sleep. I can't stress that enough.
Ben, We have had 3 opinions. First 2 basically said there is absolutely nothing to do because it is so massive. If felt like they closed the door on us. 3rd opinion was Dr Rosenwasser from Jefferson and we did feel more comfortable with him. He also said no treatment for now because there was no bleed but to repeat the MRI in 6 months whereas the other 2 said to repeat in 12 months. He told my daughter he has treated AVM’s like Grace’s (this is one of his specialties), but he felt also just to monitor for now. When I see her and she is happy and upbeat I think, maybe things will be ok. When I see her fatigued or quiet, I rethink everything. I could have cried tonight when she called and asked me if children have heart attacks. I asked her if she was having chest pain (knowing that heart failure can come from young children with large AVM’s) but she said no, she was just asking. Makes you wonder why a 6 year old would ask about children having heart attacks.
I would be concerned too, if she asked me about a heart attack. I wonder if she may have some anxiety or she is expressing some of her own concerns that she hasn't told anyone yet. Or maybe she just saw something on tv. Hmm?
What is there reason for not treating it yet? Do they want to make sure that it doesn't change (grow or shrink) first? My doctor told me to get it fixed before it bleeds. This is where I get confused. And, I'm easily confused :).
Ben, I like you:) Dr Rosenwasser said at her age AVM’s often come back and not to treat it now because there is no bleed or swelling. She is on Tegretol and it is felt that the med is keeping the seizure under control. Yes, you do not know if she saw something on TV, heard something, or is experiencing something. I will be seeing her tomorrow night and will try to get a better feel on what she is saying. She and I are best friends!!
(((blushing))) :) Thank You, I like you too.
She is a fortunate little girl. My little buddy is only six months old, my friends daughter. Her eyes light up, her arms start flying all over and she starts laughing when ever I come in the house. It's funy how excited she gets. I'm thinking...If I help raise her.... When she gets older, she can take care of me. :) I already told my friend that when the baby (olivia) gets 5 or 6 yrs old, she's getting in the martial arts (thats one of my back grounds). My friend just looks at me like, Yea..Right! Ha Ha
I have heard of the avms coming back. That makes more sense to me now. / I was on tegretol for years and now I recently went back on it. It worked real well for me. Getting the dosage right was the tricky part for me. When the dosage was to high (for me), it brought on more seizures.
Please keep me posted on how she is doing. One other thing... To much sugar or to much caffeine could have a bad effect on her too. Any over the counter meds (mostly decongestants) that have psudoephedrin in it, is a no-no too. That can bring on a seizure. These are some of the things the doctor told me to watch out for. I learned the hard way..They were right. LOL
Hi Cynthia seems how I'm 28 and dont understand things I can only imagine how you and her parents feel watching her go through this. I can tell you there are days I feel so dumb because I cant understand my sons homework. He is in the 1st grade. I know its because of the avm but still it sucks! I dont want him thinking (or others who dont know about my avm) that i'm stupid. Thankfully kids are better with dealing with these things. Thinking of you all and praying she stays well ~Andrea~ At least we know why learning is hard who cares what others think/ know! have to be positive to get through tough times =)
I think that is a really tough question. I, being a former teacher, always felt like Lindsey’s brain “fired” differently, well before we discovered her AVM. She always did OK in school, but was very inconsistent. I could never put my finger on the problem. The thing is, she may have been like that without the AVM too, we will never know. The other thing about kids, is that their brain compensates for the difficulties, and different areas can take over for the ones that are compromised. Lindsey is doing great now. I think a lot of what you are seeing right now with her learning, and grades, is probably related to stress. She is still processing everything and that definitely gets in the way of learning. As time goes on, and things get back to “normal” as much as possible, that should improve. As for the “heart attack” comment, I know how hard that is. I remember Lindsey asking me if she would be a “special needs” child after her surgery, and one time when she told me she would “be OK with dying, because she would be in heaven with Jesus.” I remember thinking and maybe even saying that “I wasn’t OK with that!” Ha! It is just how they work through these tough adult issues with their child minds. It is heartbreaking, but I think they often deal with it all better than adults in the long run.
Hello Cynthia, rest assured alot of us ‘older’ avm survivors have also been in ur granddaughter’s shoes. We, however, were most likely undiagnosed at the time! I recall when I was around Grace’s age having deja vu type episodes, going to my Dr. in Pa no doubt and never being diagnosed untila grand mal seizure nearly 7 years later at age 13! I do remember having to see a psychologist at a young age(which I though was weird) to check my cognitive functions. Many of us here have done wonderful things in our lives WITH our avms, and I even know of atleast one surgeon who had an avm! Another here, on her way to becoming a doctor! I am grateful that I was not treated ‘differently’ or ‘fragile’ as a child/adolescent b/c to me, at a young age…my avm was no big deal! My story is very similar to what Grace is going through, but I am very thankful that surgery wasn’t an option at such a young age. Feel free to browse my blog for my story, Grace has a happy, long life ahead of her:) -GK
Thanks Greg, Yes I will browse your blog. I do realize that the majority of adult AVM’s were just not diagnosed at a younger age. At times I feel it would be better not knowing, but I realize that it is best to know what is going on in case she ever has a severe episode we know we have the information and have a neuro that we are comfortable with. It is quite interesting since you commented on it, that Grace was also seeing a psychologist this past Sept, Oct, Nov. Grace is in school , she takes tap and jazz lessons, goes to church and Sunday school and has sleep-overs and lots of fun at Nana’s!! Thanks - Cindy
Hi Cynthia,
I started noticing problems in his speech when he was three years old. He was diagnosed at age five years old with his AVM. When he started kinder he was already receiving speech services. Kindergarten was diffiucult for him! I asked the school to test him and they did find some deficits in his abilty so he was placed in Special education classes and was listed under OHI= Other Health Impariments. Due to the AVM impacting his ability to learn. He has an IA with him most of the day to help him stay organized and to help him his check for understanding. Your grand daughter should be able to obtain a 504 to help modify any assignments. This is a federal law and all states have it. Contact her school and speak to principal about the process.
Take care-God Bless!
Hi Cynthia,
Has the neuro team offered Grace a functional MRI? I have a size 4 AVM in my left parietal lobe and motor cortex and before they did the gamma knife surgery I had a functional MRI to determine if it was too close to my language centers and right hand function. Also, the math thing may be something that she can overcome if she wants to. Granted I wasn't diagnosed until I was an adult, but math was never one of my strengths. I was really interested in science though so I was very motivated to stick with math. I ended up earning an engineering PhD that had a really significant applied math part to it. All I can say is that it's pretty clear in current neuro research that her brain is growing and developing connections - and it's all pretty plastic at this stage, so even with a big AVM in there it's probably possible she can grow good 'mathy' connections in the other parts and be successful at it. I'd be happy to continue chatting about this offline if you are interested.
Best of luck and hang in there,
-jessica