Sulthiamine and Deterioration in Cognitive Function (Math)

[jazz'smum]

I was reading a post here and clicked on a link and found this.

I sat there shocked for a minute!
It explains why Jacinta is having problems at school and especially with maths.
So I will definitely be looking at trying nuerofeedback.

Deterioration in cognitive function in children with benign epilepsy of childhood with central temporal spikes treated with sulthiame.

The purpose of this study was to determine if reduction in spike frequency in children with benign epilepsy of childhood with centrotemporal spikes treated with sulthiame correlates with improved neuropsychologic function. Six untreated children (5 boys, 1 girl) with a mean (standard deviation) age of 9.1 years (1.5 years) underwent overnight ambulatory electroencephalograph recording and neuropsychologic evaluation at baseline and after 6 months of sulthiame monotherapy. The Reliable Change Index was used to determine whether a statistically reliable change in neuropsychologic function occurred. All children continued receiving sulthiame monotherapy (dose range, 8.0-9.3 mg/kg per day) for the study period without further seizures. Although spike frequency was reduced in all 6 children (3 showing a decrease to less than 10% of baseline), they all demonstrated significant deterioration in their reading ability, 5 had significant declines in general memory, and more than half had reduction in attention skills and mathematics ability. Although sulthiame was effective at seizure control and significantly reduced spike frequency in children, it was also associated with deterioration in cognitive function.

Starting to learn from here, thanks for all your advice.

[Bernard]

It's heartbreaking when the steps we take to help our children sometimes have negative consequences. It's good you found the info. With dedication, I'm sure you will find a better solution.

[jazz'smum]

I will certainly do everything I can Bernard, Im really motivated now!
I just hope to find the right neurologist here in Australia that is willing and able to try other alternatives.
I will still keep the appointment I have with Jazz's neurologist on the 11th August..she may be willing to try?? but i will keep looking.

Thanks for fixing my post Bernard, im really not good with computers.

[stilldancing_98]

This is very interesting. And I am just looking into neurofeedback with my son and I. His fall back is in his math. He has had regression. But only when seizures occur . This is so interesting. Teachers should understand this. So much they think its because they don't want to. Congrats on your find.

[RobinN]

Last year Rebecca ended the year with a "D" in Algebra. She wasn't able to go to the next level with a "D", so I enrolled her in a summer math class last summer. She did very well, and the instructor along with the previous instructor, decided to let her try the next level.
This year she has been off of all meds, and began neurofeedback. She got the first "A+" that she has ever earned in Algebra, and was one of the top students in that class.
Good teachers also help.

This was not just a coincedence.

[PurpleAngel]

I really thought I was the only one who had a child who struggled so much with Math. Kater is great with her basic facts, up til you get to 2 digit numbers. Even after the 3 week unit on time she can't read a clock and all the covered was the 5's. If it is 1:00 she will tell you it is 12:60 or 1:60. The list goes on, and on. Right now she is in summer school for Math with the hopes that maybe it will increase her grade level, because at the end of 2nd grade she tested at first month first grade. I am hoping that even if she doesn't increase her abilities it will prevent her from going backwards further.

[RobinN]

Just remember that not everyone learns at the same rate. Unfortunately that is how our school system is set up. Sometimes the high school has students that are available for tutoring. Computer math games are also good.

[PurpleAngel]

I just found it odd that she can read at an almost 4th grade level, yet struggles so much with Math. I work with her when I am able. She is very stubborn, and will often refuse help. I try until I know that she has had enough and then let her do what she is going to. I pick and choose my battles with her, and forcing her to do homework isn't one of them at this point.

[RobinN]

There are games out there where they don't even know they are "working" at it.
I know it is very frustrating when there are areas that are more difficult for them. Rebecca had a difficult time with reading. So when it came time to read the history books, she bombed. I was worried, until a teacher told me that the reading level in those books was at a much higher level than grade level. I relaxed and continued to read them to her.

I am interested to know if the continued neurofeedback sessions will improve the reading, which is much better but still could improve. What is important is the desire to learn. We can squelch that if we are not careful, by putting too much emphasis on it, and not on the whole person.

[jazz'smum]

Robin I hope Rebecca's reading continues to improve, she has done so well with maths, getting an A+ is outstanding! you must be very proud and relieved at seeing that sort of result.

Jacinta has decided herself that she just cant do maths, so im working hard to get that idea out of her head.
Her teacher last year lent us a computer maths program..it included games and rewards. I will purchase it when they are available through our school book club.

Purpleangel Jacinta has always been able to read well too, but testing her literacy picked up she is behind in comprehension.
So it must effect them all in different areas but mainly maths.
Jacinta is stubborn too and also hard to work with once she gets home from school.
Agree you shouldnt force homework on them.

Stilldancing_98 would be good if the teachers could understand. I told ours yesterday as i only just found out myself. He was as shocked as i was.
He is very concerned and will be willing to help however he can.
Not all teachers are this great ! wish they were!

Best wishes to all your Children
Cheryl

[Eleonora]

Hi mums!! Arrive at a forum looking at Google, with some Sulthiame`s doubts.
My daughter Sofia is epileptic since last year. Have 7 years, and had a one-hour status epilepticus. (resuming)
Her medication is Ospolot (150 mg / d) + Clobazan 10 mg.
This year Sofi has problems in mathematics, but she`s much better tahn with TRILEPTAL (oxcarbazepine).

I also want to ask mums, if their children have problems of hair loss with OSPOLOT (Sulthiame).

In Argentina there are lots of spanish forums but there is not easy to get this medication, and is also very expensive.

Thanks for reading, A big kiss and a thousand blessings from here!
Eleonora

[jazz'smum]

Hello Eleonora

Welcome to this forum,
I am sure you will get some helpful advice from other members.

Jacinta is on 350mg daily of Ospolot and doesnt have a problem with hair loss.
When she was first diagnosed at 4yrs and put on Epilum she had a lot of hair loss.
As a hairdresser i can tell you it is normal to lose hair with any change to the body, including medications, stress is a major factor for hair loss.

My daughter mainly has learning problems with maths and since writing this post i have recieved her school report and its not good news.
Pleased your daughter is coping alright at school.

We are also now looking at Jacinta's white blood cell count as she has been getting a lot of colds.
Her Dr isnt too worried, thinks she is just getting colds like evey other child this time of year, but will mention to neurologist just in case.
So might be worth asking your Dr if it is worth monitoring your daughters white blood cells.

Blessings to you too
Cheryl.

[Eleonora]

HI Cheryl!!
Thanks a lot for your answer!! Sophi`s hairsuddenly stopped from falling! rare isn`t it? Well, we are making some studies what we call analisis (blood counts, etc) this week, after that I`ll write to tell you how things go on.
How long has Jacinta been taking Ospolot? 350 mg from the beggining?
Its not very commerciable (easy to get) in Argentina
Thanks for your time, sorry x my English!!
best regards for you and Jacinta!!
Best wishes to all!!
Eleonora

[jazz'smum]

Thank you Eleonora

I dont have a lot much knowledge on anti epileptic meds or epilepsy, I am also trying to learn.
There are other really helpful members here that have lots of knowledge.

Hair can do that it goes through growth stages and it can be quiet normal for hair to fall out.
Im pleased for Sophie it has stopped falling out.

Jacinta was still on Epilum(wasnt controlling absence seizures)when put on to Ospolot so we started on the lowest dose and gradually increased to 350mg over about a month ,which then controlled seizures ,so we decreased the epilum until she was off it.

Jacinta has been on Ospolot for around 5 years now and its not working so time for something else. We see her neurologist on the 11th of August.
We dont have any problem getting Ospolot here, although i have to go to the same pharmastis as they keep it ordered in for me.

Best of luck with Sophie's blood tests.
Will keep in touch
Speak to you soon
Cheryl

[Eleonora]

Cheryl, thanks again for your answer!
I forgot to tell you Sophi combines Clobazam ( aveery old antiepileptic too), for her temporary seizures, combined with Ospolot, but I still insist she`s taking a ver LOW quantity of Ospolot, perhaps that helps...
She stopped the seizures with Ospolot and Clobazam, but she still has alot of movements at night, they are very similar to seizures, but she`s asleep, and snoring! :S
On August 11th (also ) we are making a new Polysomnography (or PSG) study, to see if its everything fine as it seems...
She started on November 2007 with Carbazepine (Tegretol) but she had diplopy, and felt awfull., after that, Oxcarbacepine, and her PSG get 95% worst., so on May the new Neurologist gave her Ospolot.

GOOD LUCK ON AUGUST 11th!!
Hope you understand my english!!
Lots of love
Eleonora