Preschoolers and younger with epilepsy

Chelle - posted on 10/13/2010

I am the same as Jamie above me.

Our son sees a pediatric neurologist (who specializes in epilepsy and developed their childen's hospitals epilepsy monituring unit). When we started my son on med, he started him on trileptal. It is supposed to have the lowest reported amount of side effects. But he told me that if we feel something isn't righ he will 100% not question us on it and will switch him immediately. He told us we know our son best and trusts our judgement.

He is the first out of all my sons specialists that has ever said this to me and really made feel in control of my sons treatment and involved and acknowledged. I love our neuro.

Jamie - posted on 10/13/2010

DD was put on Keppra 8 months ago at the age of 17 months old. We've had to increase her dosage 2 or 3 times and after each increase I noticed a change in her behavior. Each time I brought it to the attention of her pediatric neurologist and never once did they dismiss my concerns or try to blame it on her age. They seem to recognize the fact that I know my child best and were willing to make changes to the medicine if necessary.

Bernadette - posted on 10/13/2010

My son was seeing the "best neurologist" and director of the dept at a certain point, and he didn't like it when I would challenge him with questions. It's MY son, and HIS health that I am responsible for. We "hire" them to help us medically because they are the experts in that area, or at least should know where to go for answers... that's it. Needless to say, I dismissed him. Keep searching for a good fit when it comes to doctors... in the name of your child's health. : )

Karen - posted on 10/13/2010

Thanks for the input. I think I have a better chance of convincing mechanics what is wrong when the car breaks down than I do with the doctors. Both are equally frustrating situations communication wise! I can relate to the analogy of "how can we expect them to behave when they have a storm brewing inside of them". That is a good reminder for me when I am about to pull my hair out.

Cindy - posted on 10/13/2010

you tell them that you are their parents and you know better! sometimes there are drs that you have to stay on top of because noone knows your child like you. i have had to do it a few times.if it continues then its time to see another dr.

Bernadette - posted on 10/13/2010

All of this is very helpful to me. At time I feel alone even though I have much support with friends and family... but inside, my pain with feeling helpless in regards to my son's health, is still just my pain. My son is 2 yrs and 4 months old... was diagnosed with Infantile Spasms at 4 months. These are now turning into Head Drop Seizures. He has been on medication after medication, and still on two right now, yet still having these. It has caused him developmental delay significantly in all areas. I feel lucky enough to have a very openminded neurologist who is honest and straight forward with me as well as open to any and all my questions and concerns with his condition. I'm not glad to know you all have the same fears and tears, but glad that I am not the only one here!! : ) Prayers and thoughts to you all and your little ones!!

Libby - posted on 10/13/2010

I have found this very challenging. My son just turned three and has had seizures since he was 9 months. When you have a growing child with seizures, and seizure medication, it is SO hard to discern what's normal, what's not, what's in need of a change, etc. etc. It has caused many tears in my life, as I have struggled to know what to do and how to care for my son. It can be hard just knowing how to discipline when you don't know if the behavior is related to their age, or if it's something bigger--medical....

I will say that over the past two years, I have had some very (VERY) strong feelings about times when my son's actions were, what I thought to be, seizure/medically related. I didn't have proof the whole time, and I did have doctors questioning. Just like you're saying, they often ask, "what do you expect??" But I think that when we spend a lot of time with our children, we have a mom instinct that just can't be shaken. I would encourage you to really think about what you're seeing and why it bothers you--what seems abnormal about it to you.... Tell the doctors, and push the issue. I had to do that with my son, and the more I talked about it, the more the doctors noticed the changes. We had a time when things were really good, and now they've gotten bad again. My mom said it this way the other day, "How can you expect him to behave when there's a storm going on inside of him?" That really helped me--gave me more motivation to look closely at what I was seeing and try to get to the bottom of it.

It helps everyone when you can find the real source of the behavior and try to treat it.