Halted Speech

[maddiesmom]

So, my daughter who is 7 had infantile spasms as an infant -- from birth to almost seven months. They resolved upon removal of a brain tumor. She has had some nocturnal partial seizures since then. Overall, she is very bright -- early reader, in a traditional school and does fairly well. Although she has a great vocabulary, she sometimes speaks in a halting manner. Not when she's saying things she knows by rote (mom, can I have more juice? or come on, its time to leave for school, etc. ) But when she is formulating new thoughts or responses it can sometimes take her a long time to get things out. SO, I'm writing because I guess I never verbalized this as her issue before but we were at a doctors yesterday (long story) but I gave him the whole history and he said, "Well, she is doing really great, but you can tell by her halted speech that its clear what she went through." He said this on the way out so I was kind of taken aback. i had so many questions. Like, is this really a sign of having had severe seizures early on and does it improve with time? Does anyone else have a hard time getting their thoughts out like this? And if so, how do you manage socially, especially when kids talk so quickly. She is in weekly speech therapy and I wonder if this can be improved.

 

[Dolores]

... is this really a sign of having had severe seizures early on and does it improve with time? Does anyone else have a hard time getting their thoughts out like this? And if so, how do you manage socially, especially when kids talk so quickly.

For over 40 years I've taken Dilantin to quiet the epileptic electrical storm in my brain. My seizures are under control but it has affected my thought processing. It feels like my mind is racing ahead so fast that I can't come up with the words quick enough to stay on track with it. Sometimes I'll forget the word I want to use or even what I was talking about or, best of all, sometimes my mind will go completely blank for a moment.

I used to think I was stupid for not being able to remember details and not being able talk fluently just like everyone else. Back then there was no internet and no one told me this was a result of my epilepsy. So I managed by talking very little and rarely calling people by name. And somehow it all just worked out. I developed my own coping mechanism.

Now that I know for sure that this stems from my epilepsy I give myself a break when I get lost and confused.
Stress triggers it so I close my eyes and relax my mind. I've even explained what is happening to some friends.

For me it really helped knowing that there was a real reason I was having such a hard time. Knowing that I wasn't stupid and slow.

I really like the article about it on epilepsy.com ( search for "Types of Memory Problems").

What epilepsy has taught me is that we all have our own issues we have to deal with. And somehow we all can learn to cope. Some people may be cruel but I personally feel my best defense against them is knowledge.

I don't know if any of that helps - reading your story reminded me of what I had gone through.
There are really good people here that you can talk to about anything - they provide a font of knowledge and are wonderfully supportive.

I do hope all goes well for your daughter and you.

 

[Nakamova]

Hi maddiesmom --

It may depend on what the actual cause of your daughter's speech issue is. The surgery for removing the tumor may have had some effect, as well as the actual seizures and/or any meds she is on. The good thing is that the brain is very plastic, and kid's brains are especially so. While there are no guarantees, she may very well catch up to the other kids -- it just may take a few years. Have you seen progress with her speech therapy? If so, that's a good sign that other areas will improve as well.

Another possibility to look at down the road is neurofeedback, both for the seizures, and for any lingering cognitive issues. There have been several studies of nfb, showing it can lead to marked improvement for kids in terms of focus and cognition -- including for those children who were assumed to be incapable of improving in those areas.

 

[valeriedl]

I have alot of problems thinking of words. I know exactaly what the word is that I want to say but can't remember what it is. I don't know if this is what you mean about your daughter or not.

One example is I'll be talking to someone about the oven. I'll be staring right at it but for the life of me I can't think of what it's called. I'll start describing it - its the thing that you put food in to cook. It might take a little bit of a guessing game but we eventually get it.

I'll even have trouble thinking of what my cats names are. I usually end up saying the boy cat or the girl cat.

This is really fun when I'm on the pone with someone for some sort of tech support. Playing whe word guessing game with them is pretty funny. I might be calling about something that went wrong with the phone but then I can't remember what the word phone is! We'll get a good laugh about it in the end!

 

[MaryK]

I am just like Valerie. It drives my husband crazy that I drop a subject and start another one and really do not even know until maybe after a couple more thoughts I can go back.
If it is a rather fast telephone conversation and I am really tired I find myself saying "sorry, lost my thought" or lost my word or as your therapist called it halted speech which I can really associate with.

Similar also to Delores, although I have taken phenobarbital for 40 years come September. She is right we all have to find our own coping skills to deal with epilepsy and the side effects of the drugs. I hope that one day I will be able to try neurofeedback.

I wonder if it is a bit of scarring from the surgery. Everyone is so helpful on this site. I am sure there will be others who try to help you.