Could use some personal input on infant seizures. sm

If any you are dealing with or have dealt with seizures with infants, I could sure use some help. 

My grandson is now 8 months old.  He started having seizures a few months ago. (Incidentally after having the usual immunizations).  We all knew something was "wrong," but all that he did at first was roll his eyes back and was referred to pedi ophthalmology and was diagnosed as normal.

Then he started rolling his eyes and tensing his whole body up and then it got worse.  He stopped smiling, stopped making eye contact, etc.  It wasn't until he had a seizure in front of the pedi that something was done.  Supposedly.

After being admitted to the hospital and undergoing EEGs, he was diagnosed with seizures and sent to a pedi neuro specialist.  He's on meds and he's better, but he still has them and there is no way to pinpoint why, where or when he is going to have them.

The poor little guy just suffers so during his episodes.  There is no warning.  He just starts crying in a strange cry.  If I have him with me, I go grab him, hold him close and talk to him and rub his little head and tell him "almost done, almost done." He cries and I cry and then 2 minutes later it's all over.

I hate this.  It breaks my heart, as well as his mom and dad's.

Sorry to be so long, but any input outside of a medical professional standpoint would be helpful and I would  very much appreciate it.

Thanks

• Could use some personal input on infant seizures. sm - Gram
  • seizures - 2 hours long - kathkeane
  • My son has epilepsy - Chickadee
  • My son HAD seizures.....(SM) - AzMT
  • seizures - Lois

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I apologize for not getting back to you sooner, but I went on a mini-vacation the afternoon that I posted my original message and lo and behold, I found things to do that didn't have to do with being on my computer.

One thing I'm happy to report is that my grandson laughed the other day.  First time we've heard him laugh in a couple of months, which was before he started having the seizures..  My 11-year-old daughter has a stuffed monkey that makes kissy noises and then squeals like a monkey when you push a button.  We tried it and he smiled, laughed and kicked his little feet.

He doesn't just sit and stare like he used to, so I guess we're making progress.

At any rate, thank you all so much for your input.  It is very much appreciated.

When he was five or six he was eating a granola bar and all of a sudden he couldn't talk and he started drooling.  I called 911 and the paramedics came.  They thought he had choked.

The second incident happened when he was playing a video game.  This time his left cheek started twitching, he couldn't talk, and again was drooling.  I called the pediatrician and they thought it was related to playing the video game.  I took him to the ER and this is what the doctor said (I will never forget this)...."it is not a seizure" and he jerked his arms and said "this is a seizure."  He was describing a grand mal seizure.  My mom is a nurse practitioner so I knew from her that there was more than one kind of seizure (I wasn't an MT at the time). 

I then went to his pediatrician who referred us out to a pediatric neurologist.  The neurologist felt it was a partial simple seizure and ordered all of the usual tests, which confirmed the diagnosis.  He was put on Depakote 100 mg and had only one more seizure in two years.  We tried taking him off the Depakote during the summer (while he wasn't in school) and he had a seizure.  He then was on Depakote for another year seizure free.  We took him off the next summer and he has never had another seizure.  Some people use the term he grew out of the seizures, but actually his brain re-routed around the affected area in his brain that was causing the seizures.  He is now 13 and he is still seizure free.

My advice is to seek a second opinion.  It never hurts.  You can even seek a third opinion.  Different doctors have different ways of treating patients.  Research his disease on your own and also look for alternative treatments other than the norm.  I know my son's seizures weren't grand mal, but they scared us so.  We are so thankful his body corrected itself and he no longer has them.  I'm cautious with him injuring the area of his brain that was damaged and always tell his coaches and teachers about it just in case.

I wish you and your family strength and courage.

DSR: The patient died of seizure well without complication.

Dictated:  The patient tolerated the procedure well without complication. 

My 20 year old daughter was just diagnosed with partial seizures.  We could not wake her up on Sunday morning and had to call the paramedics.  My question is does anyone take Trileptal and is there side effects or are you having success with it.  Are you able to drive?   My daughter says her lip goes numb when she first takes it.  I have done research but I would like to know if anyone had first hand experience with it.  THANKS IN ADVANCE.

My daughter was in the process of being preopped for back surgery for scoliosis in her thoracic spine.  She had had before playing basketball, but she got injured during a game, which really exacerbated it when a girl fell on her neck/upper back.

Anyway, the PA in one of the many consultants offices we went to actually asked, "Who fell on you?  A teammate or someone from the other team?"  My DH and I looked at each other and could hardly keep from laughing, but God love my daughter who answered her with a completely straight face, but asked later, "What difference does it make who fell on me?"  That question still makes me scratch my head.

I think I will get busy on approaching some of the chiro's in the area then.  Small town here..not many facilities to choose from for just rad and someone else suggested trying chiro.  Any other suggestions would still be greatly appreciated as well as any websites or individuals willing to share some sample reports.  Feel free to email me with samples/more suggestions.

Thanks again!

 Leaving the office and going home to work sounds like something I should seriously consider.  I moved from Oregon to Texas recently and was shocked to find the wages so low.  I went from $15.00 an hour to $9 an hour and nothing around here pays anymore. Believe me my goals are higher than $9 an hour. Thanks again and I'll be hanging around!