Was recommended that I post this here( deep seizures)

[Lostparent]

My son is 2 years old. Diagnosed with mild HIE at birth. Since then he has been diagnosed with both hyper/hypotonia, gross motor delay, macrocephaly ( 53cm/20.9 inched at 17 months, speech delay, mild myelnation delay ( resolved$ and babbles but no words. Also was diagnosed phase 3 CVI. Also has a tendency to tilt his head to the right briefly but often.

He has had “ seizure “like activity since about 5 months old. It took us forever to get a video to neuro but after several short EEG’s and one extended one all results showed normal. Original neuro believes no seizures. We went for a 2nd opinion at Cincinnati children’s and several neurologist agreed that he does have seizures but cannot diagnose type. Started him on keppra in Nov.

Almost immediately after starting keppra his head tilt stopped. Last month it started again and his new neurologist believes it can be either deep Seizures or stereotypies.

What should i be asking his neuro about this? I’ve not found much information on deep seizures other than EEG’s can’t pick them up.

Any thoughts or direction is appreciated.

[Porkette]

Hi Lostparent,

Just like your son my seizures started on the right temporal lobe and the Dr. said it came from lack of oxygen at birth. Years later I looked into having surgery done to reduce
my seizures and when they did the surgery the Drs. were amazed that there was so much more brain damage so deep in the brain that not a single test showed any of these. I had a veeg, spect scan, pet scan, wada test angiogram and a few more tests but nothing showed except on the right temporal lobe.

My advice to you is to have your child see an Epileptologist who is a Dr. who specializes in epilepsy and other neuro matters. I got the most help from an Epileptologist than any other Dr. I've ever seen. You can find these Drs. a university hospitals and really big hospitals you may want to ask your sons family Dr. to refer you to one.

When I was on Keppra the drug increased my seizures but everyone is different. I then had a DNA test done and they found out I was drug resistant to all seizure meds out on the market now. To find the correct med for your son ask the Dr. to do a DNA test all they do is draw some blood and get some salvia from your childs mouth this is sent to the
lab and it will show the amount of enzymes in the liver along with the body chemistry and then the Dr. can match that up to the best seizure med with the least side effects.

Keep track of your sons seizures get a calendar and write down what time the seizure happened and the type of seizure he had also take note if there's a low pressure in the weather because sometimes the weather can trigger seizures for some people because the air gets heavier and that in turn can effect the hormones and sometimes trigger seizures. Also some people have more seizures at certain times of the yr. these are called "seasonal seizures" the reason this happens is because there's either to much or to little serotonin. I have more seizures in the fall and winter because the lack of serotonin this time of yr. where in the spring and summer I have fewer seizures because there's more serotonin this time of yr. Also try giving your child vitamin B12 that helps calm the nerves and cut him back on the carbs and starch foods these foods can trigger seizures.
Wishing you and your family only the best and May God Bless All of You!

Sue