Complex Partial Seizures

RE: Complex Partial Seizures

Submitted by wmott1122 on Tue, 2005-03-15 - 06:44

Hello,

  My name is Wendy and my now 13 year old son has had SP, CP, & GM seizures since a brain injury at age 2 1/2.  We had a neurologist tell us our son was having pseudoseizures (faking the seizures) when he was about 3!  I said "Well, if he's faking them, then he does a really good job of getting them right every single time!"  We found a new neuro right after that appointment!  Also, when in the ER several years back, my son was having a seizure while the nurse was trying to give him a drink of water...of course he kind of gulps and swallows during a seizure, so she thought he was drinking...my husband had to literally knock the cup out of the nurses hand before she realized he really was seizing!  In another incident, my son was hospitalized after having his tonsils out since he refused to take his meds, because his throat hurt.  The Grand Mals started and we had 12 nurses around his bed while I was giving him oxygen and my husband was talking to him trying to bring him out of it (although we know we can't actaully do that, it's more comforting to us in the hopes that he knows we are there), and these nurses had no clue what to do.  Afterwards the head nurse actually came to us and said she was glad we were there, because they did not know how to handle the situation.......now that was terrifying to hear that from the head nurse!!!!  Go with your instincts as a parent...you know your child best!  I always demand that the ER contact our neuro ASAP when my son needs to go to the ER!  I'm seriously considering medicalert for my son now that he's a teen...to give him more independence and to give me peace of mind!  Best Wishes and good luck!

RE: Complex Partial Seizures

Submitted by fehrri on Tue, 2005-03-15 - 08:39

It is so helpful to hear other parents struggling with the medical profession.  Yesterday I had my sons pediatrician tell me that I needed a psychiatrist. I keep telling them that something isn't right and they just argue or tell me to "take a pill and be quiet" - that's the way my husband and I refer to it now. We finally convinced our son (16) to wear a medic alert bracelet and it has helped us all - I know that I will be contacted - I can tell the school that the medic alert has the up to date info on meds, etc - so I don't have to call them when things change. It is very easy to change things on the computer - even for a few hours (primary contact) if I want.  I feel much better and am beginning to "let go" more and more so he can have some independence.  Once he put it on he hasn't taken it off.  The way I see it is if he were driving I wouldn't have control so I have to give him room.

RE: Complex Partial Seizures

Submitted by bugsmom on Tue, 2005-03-15 - 10:47

While I can't relate to your difficulties with the medical system, I know that you need to trust your instincts.  Keep trying...you know your daughter best, and if something's not right, it's not right.  Keep documentation of her seizures.  Is there someone else in the family that sees them?  An aunt?  Uncle?  Grandparent?  Bring them along or ask them to document for you as well.  If all of the doubts are coming exclusively from the ER and not your neurologist, I would routinely have the ER call her neuro...or let the ER "diagnosis" slide, and contact the neuro with the latest information to be added to her chart there.  I hope that all goes well for you and your daughter.  I can only imagine the pain of having people tell you that your daughter is faking it.  Hang in there, and keep fighting!!  <<HUGS>>

Veronica--who's 9 yr. old daughter also has complex partial seizures......