Worried and a bit flusterd

[jesterjkl]

My 4 yr old son has a couple of different kinds of seizures. Grand mal T/C, and something that resembles a myo tonic. It looks like when an infant startles, and it only last for about two seconds. (we call these "blips") The good news is that both neuro's we have seen, believe that he will grow out of them. He is now only on two meds - Lamitcal and Zionison. Although the big grand mals are few and far between, the blips seem to be often. The poor boy always seems to be in a "fog". Kind of a glimpse of the super bright, active character we love. Now all I can do is wait for a genetics blood test that should come back in a couple weeks. As of right now this so heart breaking for me and the rest of my family. Don't know what to do......:dontknow::crying:

 

[MaryK]

Hi Jester and welcome to CWE. Have you discussed with your neurologist this "fog". Sometimes it takes a while to fine tune seizure meds and feedback from you would be really helpful. What good news though that they feel he will out-grow the seizures.

You might consider keeping a seizure notebook and record all the seizures, t/c and other, noting the time of day and include a record of his medications.
Take care.
Mary

 

[Nakamova]

Definitely let the neurologist know about the frequency of the "blips" -- it suggests that the medications may need be adjusted. Not every med works perfectly for every person, and often it's a matter of trial and error. With kids it can be especially tricky, since they can't always verbalize how the meds make them feel.

 

[donnajane]

Welcome. My little man is almost 2 and from just before he was 7months old had lots of what you call "blip" event's. Sometimes in cluster other times random. He would suddenly goes eye's open, face and neck tense then tremor his arms. Sometimes his whole body would stiff as well. At one stage he was up to 150 of these "blips" a day. His condition has since altered and these types of events have decreased and we see them maybe once or so a day. He now as the odd drop seizure, absence seziures, partials and these strange head to shoulder spasms. His nureo has him on Tegretol which seems to be working most days, still have events but nothing like he has had and it has also allowed him to be able to interact with others now. He often wakes up after his nap and is unable to walk, sometimes he is also in a haze, nureo called it a siezure cloud and said he thinks he is having seizures while sleeping and when he wakes it takes a bit of time for his head to clear. he is no longer delayed very much when he is in a good patch but when is a bad patch it is like he has large delays in some area's. EEG's generally clear but they have since found a lesion on his putamen. Next MRI on 18th Jan to check if it has altered.
I hope you are able to get some answers to help your child.
Donna

 

[IsaacsDad]

Startles

How common are startle type actions.

This so rings a bell, our lad did a startle reflect sort of thing even before he was born, we saw him doing one on the ultrasound, pretty much mums only comment in pregnancy was about the startle, but we didn't have any other obvious issues till he was nearly 4 (diagnosis pending).

 

[jesterjkl]

They occur 1-6 times per day for the most part.

 

[jyearta]

Hi nod welcome to CWE,

This is. great place for information, understanding.

Praying you will soon get answers to help your child.

----HUGS----:hello::hello:

 

[CathyAnn31]

***hugs*** I can't imagine how hard it must be. I'm the one with epilepsy in my family.