7 yr old on ADHD meds due to AVM bleed/brain injury as baby

My daughter is in 2nd grade and really struggling academically and behavior-wise due to her ADHD symptoms. Her doctor has tried 2 non-stimulants (Strattera and Intuniv) which have not helped. Getting ready to switch back to Metadate CD, which worked the longest for her in the past. The stimulants seem to all work at first, then wear off with time (Adderall-didn't like side effects, but Metadate CD and Vyvanse worked initially, but when increased to 30 or 40 mg then it would not be as effective over time). Vyvanse worked for the hyperactivity but not for attention. Any advise or suggestions for us would be greatly appreciated. It just seems that her teachers are not sure how to teach her. She does have an IEP (individualized education plan) and gets help with spec ed, reading, OT, speech, writing, etc. already. We have a case worker w/Brain Injury Services of SW VA who has supplied a reference notebook for the school, too. I just think if we can find the medication fit for her, it will help a lot. I don't personally know any child locally who has been through what our daughter has so trying to get some insight on resources available for students or ideas to help us with studying with her. Thanks!

Khcbmc, you may wish to join our ADHD forum and post this discussion there, too: http://www.lifewithadd.org/

Hi, khcbmc - this is a bit of a shot in the dark, but it's worth eliminating vision issues as a root cause of the ADHD. There are many interesting articles re. the link bw vision and learning/AD(H)D here. It makes sense to me that a child could potentially learn/study better if (s)he can read properly. But a child has no comparison point to know that something is visually amiss in the first place. The fact that your daughter had a bleed as a baby makes me readier to guess that her eyes may have been affected, however, she could just be doing a great job of compensating so a vision problem could go unnoticed.

bye, www.annninglearninghow.com

Hi, I just had a brief comment after reading your post. My son is also in 2nd grade also with ADD. Was diagnosed last year initially with an AVM, which now is said to actually only be in the veins in his brain not the arteries, so it is now called a DVA. So because of this, my neurologist has said that since all but one of the meds out there for ADHD raise blood pressure, which in turn can certainly increase the risk for a bleed, they strongly advice me against ever going on any ADHD meds. With the exception of Intuiv being the only one that does not raise blood pressure. So I was just curious if this was ever mentioned as an area of concern in your daughters situation.
Wishing you the best of luck with everything!

Thank you for posting this, My Jojo. We have a number of members on stimulants for ADHD, so this is important information.

I’m quite surprised I’ve not seen this talked about anywhere. My neuro was quite adamant about it, and that being even “only” for a DVA which has a much less chance of bleed then an AVM.
I will work on posting some more DVA info soon. Thank you dancer mom!!

You don’t say where the AVM is located. I’m not a doctor. I’m about a year and a half out from my bleed.
I spoke to my neurologist about something that happened to me. I tried to use mathematical division. Had a lot of difficulty with it. He mentioned “dyscalclia”(?). The inability to calculate or use mathematics. For 14 years I struggled, thinking I was the one at fault.
Anyway, speak to your daughters doctors. Would any of these meds interfere or interact with her important meds? Don’t let some overpaid civil servant diagnose what could be your daughter’s normal.

i haven't heard of that math inability before-but I will keep that in mind to ask her doctor because she does have trouble with basic math facts, even though only in 2nd grade. She sees a pediatric developmental doctor but not a neurologist though. Her AVM was totally removed when it bled (left temporal).

thanks :) Olivia's AVM was totally removed from her brain when it bled (emergency surgery)...but for ADHD meds we have tried several stimulants and then the two non-stimulants mentioned in my post-but those were not effective for her at all. Just made her really sleepy all day. She has never had blood pressure issues, but I've heard of other kids that did while on Vyvanse especially. Good luck to you as well! Happy New year

Your baby girl will be in my thoughts and prayers! Keep fighting little one!

thank you for the link to the vision articles-i believe i will have her checked by a pediatric ophthalmologist. Because of the location of her AVM, i remember the neurologist saying she would have a "gap" in vision on her right side but she would compensate for it.

Hi,
My son when he was 6 had a Right Temporal AVM and had been diagnosed with acquired ADHD here in Toronto, after a year he had the brain surgery. He is now taking Concerta (20mg) everyday and has seem to be working for him. Although, Math seems to be the problem for him too.. There are several medications that they can give you. I hope that one will work for her. Hoping for the best.

Marnie

Hi, I hope your daughter is doing well academically as of health. I have been struggling with this for years and unfortunately my daughter’s neurologist just doesn’t want to risk it. My daughter had 2 strokes due to her AVMs and right now it is inoperable. She was diagnosed on Feb. 1, 2008. with a right frontal AVM. We treated the most that we could but then it got complicated with angiomatosis and no one wants to keep treating it. It has grown and spread to most of her right side of the brain. Since PreK we knew she had ADHD but just didn’t want to medicate her, when she reached 3rd grade, it starting affecting more and more her grades but we kept hearing the same from every doctor. They don’t want to medicate her. I am trying to convince them because its beginning to affect her self esteem, I have had no luck. I just wanted to ask you since it seems that you’ve tried it. Has it helped your daughter? Is it worth it? If so, which medicine would you recommend or not? I greatly appreciate your feedback. I’m desperate and really don’t know how to help her. I tried tutoring but it hasn’t helped. Thank you in advance for your advice. God Bless You.