At a loss

[sdhcbecker]

Hi - I have been on this site a few times and I find that it is very helpful to read what others are saying and have been helped by some when I've posed problems or questions and I'm again at a loss and really don't know what to think or do.
Our son was diagnosed with partial complex seizures in late July last year. His first EEG showed "slow brain" activity but no other abnormalities. I happens to take a video in the ER the day we noticed the first one which helped the neurologist to make the diagnosis. We started Keppra and the typical route that many have shared here, few seizures here and there but not too bad until Oct ish. Late October early November the seizures or what we had been calling episodes started getting worse; zoning in class, he would have moments of confusion and not knowing what was going on. Sometimes he'd have rapid eye movement. He'd always be rubbing his eyes a lot after the episode and then would have extreme fatigue, sleeping for hours. It just got worse and worse that he was either coming home from school not making a entire day or wouldn't go to school at all. He missed almost 4 weeks of school. His neurologist admitted him for a 24 hour EEG which turned out normal so she said she is thinking it could be "behavioral" and we weened him off the meds in January. By the end of January he was off the meds and having very few episodes. Hes having about 1 a month or longer. 2 people asked if I thought he could have experienced trauma of some kind or abuse, I can't imagine that and don't think so but no one can be certain. I think the meds were causing some of the problems and what we thought were seizures were side effects. The neurologist did blood work which determined hes extremely Vitamin D deficient levels lower than 19 (many in our area suffer this we live in Western WA) we have started him on 2000 int whatever of vitamin D. One thing that is constant and seems to be worse sometimes than others is he is very emotional. Not like whiny or acting out, but crying like he's sad. Crying when he thinks he's in trouble or upset someone, just SEVERE sensitivity. I'm frustrated because I feel like our neurologist is saying this is all behavioral and not seizures at all maybe. I have the video she didn't even look at and isn't interested in having me send her. I wonder if there is a way yo upload it on here to get opinions. They now want him to see a psychologist which I'm not opposed to but I'm scared for my son and worry so much about him.
Any advice would be greatly appreciated!!

 

[Nakamova]

I think the meds were causing some of the problems and what we thought were seizures were side effects.

For some people the meds actually make seizures worse, so that's another possibility. And if some of your son's seizures were absence seizures, then the Keppra would have been ineffective against them.

I have the video she didn't even look at and isn't interested in having me send her.

Regardless of diagnosis, this neurologist doesn't seem helpful or responsive, and I recommend that you seek out another one for a second opinion. Trust your gut.

The psychologist might be helpful just to rule things in or out. But make sure that you are comfortable that the psych will be keeping an open mind about the cause of your son's symptoms. The crying may be related to seizure activity (see http://www.coping-with-epilepsy.com/forums/f42/could-crying-no-reason-evidence-seizure-9809/) or it may be a sign of frustration or depression (Low vitamin D levels are associated with depression).

 

[sdhcbecker]

Thank you so much!!! I will check out the link you have given me. At first when we noticed the seizures and I did research I thought they were absence seizures so I was a little surprised when the initial neurologist didn't say absence, but its so complicated and I can see now just how complex this condition is. We do have an appt with a new neurologist in June for our follow up at the Hospital. I will admit that I'm nervous that the new dr will agree with the old dr just because they are at the same clinic and they wouldn't want to disagree with a "colleague" but I'm hopeful that wont happen.
Thanks again for your help, others going through it are sometimes the best resources.

 

[donnajane]

"His first EEG showed "slow brain" activity but no other abnormalities.
Late October early November the seizures or what we had been calling episodes started getting worse; zoning in class, he would have moments of confusion and not knowing what was going on. Sometimes he'd have rapid eye movement. He'd always be rubbing his eyes a lot after the episode and then would have extreme fatigue, sleeping for hours. It just got worse and worse that he was either coming home from school not making a entire day or wouldn't go to school at all. He missed almost 4 weeks of school."


Wow reading your post some bits just jumped out at me re being very similar to my 27 month old. He has had 5 eeg's his last showed slow brain activity on the back right of his brain. With most of his EEG's his eye's rolled up briefly with the flashing lights but his EEG didn't alter so most his first nureologist discounted this but his current one took note of it.

We have footage of some of his "unusual" eye movement. He seems to be having more absence seizures lately and we have also had the periods of confusion. It's heartbreaking to watch. His sleep is very strange but it always has been. He's only young so an afternoon nap is still common but he often sleeps for over 2 1/2 hours and is then asking to go to bed again usually by 6.30pm. His overnight sleep is all over the place though so this could be why.
He is at child care at my work and has an aide for 5hrs a day but lately his bad days seem to be out numbering his good, but then out of no where we have a pretty good day like today. I am wondering if soon I am going to have to drop my work hours with his condition. I am happy to do so if my son needs me to do so. I have been told that him being with his peers is a valuable source of learning for him.

His blood test have been intersting. Iron boderling and then zinc some in his blood but basically none in his red blood cells which is quite unusual yet his specialists can not find information re this other than at this stage it is of no clinical significance yet with my sons condition not being able to be diagnoses I am sure must be part of his issues.

He is currently on tegretol morning and night and Clobazam in the evening as well. He only started the clobazam at the end of feb but it has been amazing for the seizures he was having early in the night which ended up waking him up.

My son has a lesion on his putamen but his specialists are not sure if this is causing his issues or if it is just like a freckle on his brain. He has so far had 2 MRI's 6 months apart as they are keeping an eye on it, next MRI is around 12months from the last, or earlier depending on his condition.

HIs nureologist aslo said he is not sure if he is having "true" seziures or if they are something else. My son has a team of specialists trying to work out what is happening and why to see if they can make sure he has the best outcome possible. They say they know something is not right and are worried they are missing something. At the moment the thought with them all is it is metabolic but the trouble is being able to test at the right time to find out which chemical in his brain is not "working" properly. He has had a lot of metabolic tests all normal so far but we have been told that the study of metabolic conditions is so new that he may have one which has not yet been properly identified. They are talking of doing a muscle and a liver biospy down the track but are putting it off as my sons condition is intermittent and these are traumatic tests for anyone let alone a toddler.

Please keep us updated as I am always looking at information from others to see what will help my little man.

Sorry don't know if my post is much help for you. I hope you find some answers soon.
Donna