Good evening everyone.
Well, my son Lane's ophthalmology appointment didnt go as good as we had hoped. He had a vision screening done and it showed that he did lose vision in both eyes on the left side. We were told last year when all of this started and we found out about the AVM that there were prizms that could be put in his glasses that could help him. Well, that turned out to be false. The dr. said they would not help him. So now we just pray that his sight gets better. It has only been 2 months since his surgery, so we have a long way to go in terms of recovery. I notice he is very "twitchy" too. He will be sitting perfectly still and his arms will start twitching. I ask him about it, but he doesn't want to talk about anything, it just upsets him and makes him mad. We are just so happy that the AVM is gone, but have a whole new set of problems to deal with.
He does seem tired and depressed alot, and very anti social. He has a few close friends, but none of them have even been over to see him since he came home. Very sad! I am so nervous about school starting in a couple of weeks. Not only are things going to be different anyway, he is starting high school (he's 14), so that is a whole new school and new people, and then he has this vision problem to deal with and I won't be there to help him. I know, this too shall pass. We will get through it, hopefully the worst of it is over.
Thank you everyone for the support.
Steph
Hi Steph,
It's a tough time for a child entering a new school, new friends, and AVM issues...............
Our son didn't have an AVM, but had seizures from middle school through high school.
One of the things we did was drafted a letter with our Son's help that he could hand deliver to each of his teachers and the school's nurses. It gave him a chance to discuss it with his teachers. We also met with his teachers to make sure they didn't have any questions. We described his situation, brief medical history, what his seizures looked like, and what they should do if he had a seizure. Teachers who had never seen a seizuring child really appreciated the education!
If your Son has vision issues, where could he best see what's going on in the classroom. ASK the teachers to accommodate his seating to facilitate his learning!
We found that by high school, many kids are diabetics, are ADD, or have other issues, so if your school is any size at all, his 'disabilities' will not be that out of the ordinary. Allen ran into a few jerks, but he also developed good friendships who took his seizures in stride. He also played football (which scared the crap out of us). His specialty coach was a tremendous person; he told the teammates "If Allen starts acting goofy, bring him to the sidelines." Low key, no humiliation, just guidance.
Help your Son learn to own his situation. He'll need guidance from you. Might help to formulate some response to questions he might get from kids, such as "What's wrong with you?" For our Son, a simple "I have seizures" worked well for him.
Best wishes,
Ron, KS
Hi Ron,
Thank you so much for your reply and your guidance. You gave me many things to think about
and some great pointers!! I hope your son's seizures get better, it's very scary to go
through something like this, and at such a young age.
Thank you,
Steph
I hope everything works out for you guys and im sure he will heal in time. Its very traumatic to go through and it is important that he finds a way to keep him busy and happy...a hobby, sport etc.
As time passes he will be just fine and will be able to put this behind him. God bless and keep us posted.
Stephy I also lost visiion to the left in both eyes. While the neuro opthalmologist told me that prisms would not help me she was wrong! I couldn't read after my bleed/surgery/recovery as I often lost my place on the page and all of the words seem to come at me all at once and it was confusing. I was frustrated so I just gave up. A friend suggested I go to see an eye doctor who specializes in low vision therapy. I did that and I've been so thankful every since. He did a rather full assessment but not quite as in depth as the neuro-opthalmologist. He didn't need to, he knew exactly what my defecits were. He had me try vairous lens and then finally had me try reading with a prism lens. It's astounding the difference it makes. The lens shift everything to the right so things that I couldn't normally see without the lens I could see with them. He wrote a prescription for glasses and I had them within a week. They were not terribly expensive (I think around $300 for mine). I only use these glasses for reading. The doctor told me they wouldn't help with walking around and for every day all the time use. They tend to make my dizziness worse if I try to walk with them on and I do have to sit for a while after reading before I try to stand and walk again. While the prisms don't help with all the time vision loss, being able to read again was huge for me. It's one of my favoite things to do and I became quite depressed when I wasn't able to. This doctor also gave me few eye exercises to do to increase my field of vision. Also, there is a webiste you may be interested in: http://www.hemianopsia.net/ There is actually a name for this condition "homonymous hemianopia". Basically it's a visual field cut as a result of a brain injury. While the loss of site is the most obvious symptom, there are a whole host of other problems that it can cause. This webiste lists the symptoms and you may find a lot of them fit your son.I actually have all of the symptoms. For me just having a name to put with all of the symptoms I was having made such a big difference. This is something my neurologist, the neuro-opthalmologist, and any other doctor never told me about. This particula website has some information on low vision therapies but I think it's mainly for this one specific center. Your neuro-opthalmologist should be able to refer you to a low vision specialist. Mine knew of one but told me it wouldn't help me. Actually the specialist she refers patients to is the one that helped me. A lot of the probems associated with hemianopia could be a big part of the reason your son seem to be anti-social. Social situations, unfamiliar surroundings, large crowds, can cause panic attacks for those of us with this condition. This is a problem for me so I have a prescription for an anti-anxiety medicaiton that I use when I know I'm going to be in such a situation or when I have an acute panic attack. I know my vision will probably never return. It's been over 4 years and it hasn't improved. I've learned to compensate some and I have some tools to help me. That's not to say I don't still bump in to things quite often. As time goes on your son will learn what works best for him to help compensate and it won't be quite as difficult for him. I wish him the best of luck. And if you have any questions, please let me know!
Trish,
Thank you so much for all the information. I am so sorry you have had to go through this also. I can't imagine what you have been through. Its funny, I actually did find that website a few days ago. It scared me to think that this condition could cause so many other problems, and that the Dr's did not mention them before surgery. All they told us was there was a chance of vision loss in each eye. I am not sure if Lane has reading problems. He seems to read his magazines and things fine, but I am not sure if he would tell me if he couldn't. I think I will have him read some things out loud to me to check! He will be starting school in about 3 weeks, and I will want the teachers to be aware if this is going to be a problem. We will definitively check into the low vision specialist. You have also given me many things to consider, and I truly appreciate all the advice and will take it to heart.
I wish you the best.
Stephy
Ninibeth,
Thank you so much for your reply, I am so sorry for what you have had to go through! Thank you for your wonderful advice, I will talk to his teachers and I am sure they will be glad to help out.
Stephy
Hello Adrian,
Thank you so much for your words of encouragement. We pray everyday that his eyesight improves and he can go on with his life like he did before.
God bless!
Stephy
I seemed to do better with magazines or a computer screen when reading. Something about a book and nothing but words is what seemed to cause a problem for me. With magazines and the computer there are blank spaces so it's easier. I don't mean to cause problems where there aren't any. I just wanted to make you aware of hemianopia so that his seeming anti-social behavior would make sense to you. Drs. don't seem to mention a lot when it comes to us AVMers I've discovered. There is still so much that is unkown about AVMs so it's no wonder there is still so much unknown about their effects.