On Monday my daughter noticed her 3 year old playing and he would stop what he was doing and his eyes would roll back in his head. It didn't last long and back to playing he would go. This happened 10 or so times that day. on Tuesday he had around 18 episodes and she called a doctor. He told her to take him to the hospital. They admitted him and on Wednesday they performed a EEG. they noticed some abnormalities and on Thursday they performed a MRI. He had a cavernous malformation on the left lobe and it stretches to the right lobe. There is no neurosurgeon here in Corpus (he retired 2 weeks ago) and he is set up to see one in Houston on Monday the 28th at Texas Childrens. He has been put on a anti-seizure medication. I found this site and went to reading. Fortunately his mother was alert and didn't waste any time. Are there any mothers or fathers or for that matter anyone who has gone through this with a toddler? His hasn't bled, that's a blessing. What do we have to look forward to? I am pretty sure my daughter will elect to have the cm removed.
Thank you all for taking the time to read this and reply.
Charlie, you’re so early in the process, so let’s look at the good news. No bleed, which as you say is a blessing. I’m guessing that the seizure meds are working, and that’s positive as well. Lastly, the doc in Houston isn’t seeing him until the 28th. I’d read that as it’s important to see him, but it’s not an emergency.
You’ll learn more about his options on the 28th. In the interim, if he isn’t responding to the meds, call the doc or take him to the ER.
He’s fortunate to have a grandmother like you, and it sounds like his mother is doing the best she can, too. You’ll all be in my thoughts and prayers, Charlie. Please keep us in the loop.
Thank you for your message. It just beaks my heart because he is such a vibrant little boy, full of energy and a good heart. I know the risk involved with the surgery and I am so concerned for him.
Oh and I’m a grandpa and thanks again, praying a lot.
Glad you found this site. My son although not a toddler was diagnosed with an AVM in April. He is 19 and he too has it on the left anterior medial temporal lobe. He had no symptoms until an MRI from a motorcycle accident discovered it. He just had radiosurgery on Sept 2 in San Diego and is doing well. No surgery was recommended because his AVM is too close to sensitive areas. Good luck and let us know what happens. I’ll be praying!
When it gets medically difficult to understand (and you know docs love to talk in “med-speak”), I open another tab and use google to help me slog through it.
Hi Charlie, check this site out for your continued education on CM.
I just underwent successful brain surgery for CM, about 7 weeks ago. Now, I’m 42 years old, healthy, active, and I stumbled into my brain issue when I experienced a singular leg seizure. As mentioned below…things are so very early for your grandson. Few things I’ve learned: one CM is certainly a better situation v. Multiple; CM is more prevalent in younger patients (unfortunately) - and treatment options should be discussed directly with both a neurologist and a neurosurgeon. This is key. Surgery as an option is such a “it depends” situation. It depends on location / accessibility of the lesion in the brain, the symptoms, the patient’s reaction to treatment meds, ongoing symptoms, etc.
Find the top neurologist & top neurosurgeon in your area for sure. And go from there. But if by chance your grandson demonstrates further symptoms - get him to the ER immediately.
Thoughts and prayers are with you & your family. Please keep us posted.️
My CM was located (mainly) in my right frontal lobe, and began to exert pressure on the left frontal lobe, triggering my right leg focal seizure. This was my only symptom – but given the size, location, etc - tests, scans, MRIs, could not identify the lesion (I was told best case scenario = CM; worst case = brain tumor/cancer). So we quickly moved to surgery in my case. But again, every case is unique. Let the docs guide your family’s decisions. There must be pediatric neurology specialists out there.
Again, keep us posted. PS, grandpas rock!! My dad is one of the best in the world - and you sound terrific too!
Rebecca, The doctors doubled up his dosage of the anti-seizure meds yesterday. Today my daughter and her husband took Arlo and headed to Texas Childrens Hospital in Houston, where there is a neurosurgeon. They went to the emergency room and have just now been admitted to the hospital. I know its like you say, it depends, tomorrow we will find out what "it depends" encompasses.
How are you doing now? The more I learn about this and how prevalent it is, the more I realize how fortunate I am.
Charlie
I’m certain your heart breaks for Arlo - I’m sure the grown ups in his life are the ones struggling most. Keep the faith - children are so resilient… I was admitted in to 2 ERs within a week…and surgery unfolded for my situation within about 9 days…from my first symptom. I’m doing really, really well - just a slow process to fully heal and get my “100%” back. You & your family are in my prayers! ️ Trust the people who specialize in this - I know it is so scary, especially for you & his parents.
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