Epilepsy: reading and speech problems

[kissingfrogs]

My dd1, nearly 7, has been medicated on Zarontin for a year due to having absence epilepsy. Previously she was doing well in school, was a good reader etc. But she has made very little progress in school this last year. She is now a year behind in maths and is having great problems reading fluently (stumbling over easy words, loosing her place, stuggling to stay focused) and has developed some speech problems (lisping, can't say Ch etc). I've been told she is expected to do very poorly in her SATS.

I was increasing her meds to correspond with her growth spurts but became so concerned about her school work that during the last 2 months I've begun very slowly weaning her off meds. Now I'm stuck on half her usual dose - not daring to decrease or increase - because I'm dithering whether I'm doing the right thing because though she doesn't appear to be having any absences her reading/concentration/speech etc hasn't improved.

What do I do? I don't know if its the epilepsy or the meds that are causing the problems or whether its completely unrelated and due to other factors such as harder work, teething, plus a phase in her development.

I thought I'd post here rather that Primary Ed because I'm more likely to get the absence epilepsy/meds feedback as in my heart I believe this is the most likely cause.

I don't know anything about Epilepsy. But I do know a bit about learning to read. And it's def not normal to either go backwards or make no progress in Y2.

Y2 is a year of huge progress, where kids are targeted to make 3 sublevels of progress, rather than the normal 2.

By the end of Y2 kids without SEN should be able to read a chapter book independently.

So, you're right to be concerned. It is unlikely to be due to 'harder work, teething or a phase in her dev'. Far more likely to be due to either her epilepsy, or her meds, or some other SEN that is stopping her from learning.

I can completely relate to you kissingfrogs. My DD developed absence epilepsy at age 4 years. Prior to this she was a bright little thing. We didn't realise at first that she had epilepsy - we thought daydreaming etc. I did notice a deterioration in her writing and pictures. At the start of Reception, DD was diagnosed and started on epilepsy meds (Lamotrigine). Her cognitive skills deteriorated drastically, she had a very poor working memory and very limited concentration. She was like a zombie and even at that age was very aware of the impact of her medication - she said to me that her medicine stopped her remembering her letters.

Despite the drugs she remained uncontrolled - up to 30 absence seizures per day and tonic seizures at night. In year 1 Carbamazepine was introduced as an additional drug. She remained uncontrolled and made very little progress from this point. Her maths skills were non-existent and her literacy poor, although her reading (despite the getting lost on the page problem) was good.

The school failed to accept that her epilepsy and drugs affected her education and she was given no support/ assessments etc despite my constant battles.

We moved last summer - 2 weeks before the end of the summer term (the end of her year 3). The new school were fantastic and identified immediately that she required support. Within 3 weeks of moving her seizures disappeared and she has been seizure free since - if she remains like this until next February she will be allowed to come off her drugs.

She is now in year 4 and despite not being statemented, she has been fully assessed by an Ed Psyche and now receives self-esteem classes, one-to-one work to improve her working memory, Numicon classes for maths, daily precision learning etc. Even though she is still on her meds, she made two years progress in literacy in her first proper term at the new school.

Is your DD getting any support at school? If not, please try and push for this as it can make the difference to them making progress despite the epilepsy and drugs. I also understand that the majority of children with absence epilepsy will grow out of the condition at or before puberty, so this may be the case for your DD. (We are hoping that the fact DD has been seizure free now for 9 months that she has grown out of it, but i'm not getting too excited yet!)

Sending you and your DD big hugs.

Thankyou so much for you replies.
indigo I know, it's not right to be a worse reader in yr2 than she was in yr1. In yr1 she could count to 20 in 3 languages, now she struggles to do that in just english - her memory has become poor as she gets fuddled trying to think.
Thankyou newlife. Your post gives me hope. We moved area a few months after dd1s diagnosis so the new school dont know the "real" dd1. Initially they didnt agree that it was the epilepsy/meds, they blamed the Foundation Phase dd1 had been in (in Wales). 1 TA even said "she's lazy" . Dd1 has been getting extra numeracy sessions but thats stopped now (and she's still doing yr1 maths). I have found it difficult to talk to them about how I believe that her lack of progress is due to epilepsy. The standards at this school are much higher than in the last school so I initially I felt that was a major factor but its been 9 months now and there has been no catching up.

I haven't pushed for extra support. I've been so wrapped up in fighting for dd2s support (hearing impaired with SLI) that the thought of having to do the same for dd1 makes me crumble, I feel like I havent got the strength to face it. I'm hanging on the hope that the absences have gone and dd1 will return to her normal self once she stops meds.

I think I'll contact epilepsy action as their HQ are local to me and I'll see what help and support they'll give - especially with helping me to get school to understand absence epilepsy.
Again, thanks for your post. It makes a differnence that someone can relate to this situation.

Do you have an epilepsy nurse? We didn't where we were before and I think this was the main reason that I wasn't listened to - it was also a high achieving school. DD now has an epilepsy nurse and it provides a real link between her healthcare and educational issues.

If not - speak to your DD's consultant. DD's previous consultant wrote to the school setting out the effects of epilepsy and drugs on learning - the school ignored it, but yours may not.

Also the NYCPE (National Centre for Young People with Epilepsy - based in Surrey) are fantastic for advice and will provide training for schools. (They only charge for rail fare to do this.)

It's awful that you have to fight for help when your already having to deal with so much. i know how exhausting it is.

I also feel completely overwhelmed at the minute - DD only has 2 years until secondary school and has only just started receiving help, but she has so much ground to make up it scares me.

DS has emotional/behaviour issues (at home- he's an angel at school) so at same time am trying to follow advice given by CAMHS. He's also just been classed as gifted and talented which is also causing issues - he's 3 years younger than DD but has overtaken her - this is now causing further issues with DD's self esteem.

I know it's overwhelming but try to get your DD help. she's not lazy - i was told this by DD's last school.

A few things you can do at home to improve her working memory - find Wally books - get your DD to find Wally and time her; spot the difference puzzles - do the same one a few times and time her to see if she can do it quicker; visual prompts for dressing etc. For maths, I have found mathswraps really good - it's visual and practical and covers everything from addition to timestables etc. This has really helped my DD.

I am horrified that the TA should label your child as "lazy" when she has a medical condition such as epilepsy.
When is you next appointment with the consultant coming up ? It's possible that a change to another medication may reduce any side effects. If it helps my child has epilepsy and did have problems with speech development at pre-school. However once her condition (and medication) was stable she soon caught up with the rest of her class.
Epilepsy is a neurological condition and some children do have additional learning difficulties as well. You really need to speak to your GP or hospital consultant to see if this is the case and get your dc assessed as soon as possible. This should ensure that she gets the help and support that she needs.

We did have an epilepsy nurse in wales and she gave a talk at a staff meeting at the school (great Head, he was the one who insisted updating his staffs training regarding epilepsy after dd1 was diagnosed). We dont have one here though.
I hate to critisise this new school - they are helping push for support for dd2. Dd1 however... I think they see dd1s problems as part of her character, as just being her, but they dont know what she was like before. I know for a fact she had an excellent memory and was making huge strides in reading prior to medication despite the gradual increase in absences that led to recognition of her epilepsy. Saying that, I do realise that her regression in school work may be due to the underlying epilepsy rather than - or as well as - soley due to meds. Very hard to seperate the effects of the two - unless I do wean her off meds and see what happens.

I am, quite frankly, terrified to try a different med. They ALL sound bad when you look at side-effects. Dd1s next consultant appointment is April 2012. This is the date when (if no absences) that she can be officially weaned off as she will have been on meds for the magic 2 years.

crazymum I will take your advice. I dont consider dd1 to have an additional learning difficulty because, well, she didnt show any signs of having one before. But, like you say, as epilepsy is a neurological condition you can never be sure what the longterm effects can be. I had assumed that once the epilepsy and meds stopped dd1 would be perfectly ok, but now I'm realising what the effects of maybe years of learning difficulty could have on dd1.