Our 15 year old daughter had symptoms of jaw and tooth pain with headache last Friday that lead to vomiting and finally a seizure. We are blessed that her bleed was small and other than the seizure and being extremely tired (may also be side effect of Keppra) she has no deficits. The neurosurgeon said that on paper her avm looked like a great surgical candidate (grade 1), but upon further evaluation she felt that it was too deep and had concerns of surrounding structures and that if it were to bleed in surgery they wouldnât have âa lot of room to work withâ. We are blessed to live in the KC area and have a consult at KU for proton beam therapy. One question we have is - I know the seizure meds were recommended for 6 months bc of the bleed has anyone had those extended for the duration radiation therapy time even if they only had one seizure? This is all so new but this forum has really given us a lot of peace of mind. Ive read a few people having the proton beam therapy, any pediatric patients that can share their experience?
Hey @Qsmom, welcome to AVMsurvivors! Itâs great to have you join this most unwelcome club!
I donât know the answers to your questions but I think in regard to the Keppra, thereâs always a risk of needing to carry on with it. I donât think you can predict that. I read recently of at least one of our members needing to start on Keppra (or something similar) a few years post radiotherapy after a new seizure. It is difficult to know whether the issue is driven by a bleed or by the treatment: either can lead to such things.
How is she doing on the Keppra? It is not the nicest drug on the planet and can often be very challenging.
I hope some of the other @ParentsAndCarers can share their son or daughterâs experience with proton beam therapy. It is not widely used yet but Iâd expect the majority of patients will be younger folk.
Lots of love,
Richard
Hi, and welcome. I can speak a little about my experience, although I was 48 when my AVM decided to show itself and bleed. I explored a variety of options but due to location, Gamma Knife was determined to be my best option. Gamma Knife
Cyber Knife, Proton Beam are similar. When I went into the ER I was a little different case as my bleed was quite substantial, although no recollection , I was still functioning, hadnât lost consciousness nor had a seizure. I had gamma knife in November of 2016, and ultimately in February 2019 was confirmed obliterated. I had few side effects from Gamma Knife, around the 6 month mark I began to have some swelling, which is common with GK, and experienced âice pickâ head aches for a period of time that disappeared and I havenât had one in years.
If we fast forward to January 2023, I experienced a seizure and have been on Keppra ever since, although no recurrence. Iâm not sure if I will ever be off Keppra, as I have limited side effects and no recurrence, but may give it a try when I retire as it may impact my ability to drive. I do believe that it does impact my energy level, although my age may be a factor as well. It is hard to compare a now 57 to 15 year old, but I hope this helps. I will add that it took a long time post bleed to regain energy, which was far more tiring than I now experience with the Keppra. Take Care, John.
Thank you for the information! The Keppra does seem to hit her hard and makes her super tired about an hour after taking. Was hoping this was maybe just an adjustment period with the medication. Well, we can be a resource for our experience with this therapy if we decide it is the best treatment option!
Thank you for taking the time to respond with your story and experience! Also good to know that the bleed itself made you tired. Her younger siblings were having trouble understanding why she needs so much rest when she otherwise looks and acts normal. The information with your seizure also gives me perspective. Hoping they keep her on the medicine for atleast the duration of the treatment.
I think there is an adjustment period but if it really doesnât settle, do ask if thereâs a suitable alternative.
We appear "normal"after the bleed and I would never have a comprehension of the impacts, particularly on energy levels, if I didnât experience it. I was super high energy and only slept about 5 hours a night. Post bleed I was sleeping about 20 hours a day. If I had interaction with people it would last about 15 minutes and then I would have to go lay down and would sleep almost immediately. Again, I would never be able to comprehend it unless I personally experienced it. She will need lots of rest, that is healing! John.
Hi
Iâm sorry youâre here, but happy you found us.
My daughterâs AVM was found in utero. Sheâs now 17.
We tried keppra it turned her into a zombie.
So hearing that your daughter is tired while on it doesnât sound so unusual to me.
Our experience with gamma knife was that our daughters seizures worsted for some time (including a week long hospitalization with seizures that were unresponsive to meds)
It took a process of trial and error to find a combination thatâs worked for her.
Thank you for that information! Im going to keep an eye on the medication and see how the summer goes because she will be sleeping through school in the fall if she keeps this pace. 
Hi, I canât really answer your question but my daughter was given anti seizure meds after her bleed not because of the bleed as such but because of the brain damage the bleed caused. At least thatâs how her doctor explained it to us. Her damage is in an area that left negligence (she was walking into things on the left) and that is also considered a âseizureâ. She doesnât have that one sided negligence anymore so I presume the meds will be taken for life unless the brain recovers that ability. We are waiting to be hear if she is a candidate for a craniotomy or gamma knife. Her avmâs canât be embolised.
In case no one has brought forward to you, there is an Extended Release pill for Keppra generic Levetiracetam. My son takes his pills at night only because they extend for 24hrs therefore his energy levels have increased as no day pill is taken. Just in case you didnât know. Blessings as you continue your journey like us all.
I had not heard of that! Thank you for this information we will discuss with provider. 
Hope it helps!
Switched two days ago to the extended release and its making all the difference already! Thank you again for this suggestion.