Development and Gameplan

[fiona]

I have been on and off this forum.

Quick background. Thomas has had seizures from 8 months, but only got diagnosed a year ago [he is now 3.5yrs] and has been on Sodium Valporate ever since. He has a change of dosage twice since then. But, appointments are few and far between... [Which I intend to discuss with my paediatrician in our next appointment in 2-weeks time].

His seizures have changed, tonic-clonic seizures increase and decrease, they are now predominantly nocturnal whilst before they were normally early in the Morning or after any naps. He had 3 last week, but that is uncommon usually they are every 2 weeks, although recently we managed 6-weeks. We have started co-sleeping again, as it frightens us, he has stopped breathing before. Whilst absences and atonic seizures are not daily anymore, and only happen irregularly but not too often.

His development is going down hill though. Thomas has previously been a very bright child, he has exceeding milestones and always been well ahead of his peers. But at 2 years his development stalled, and in some cases it has gone backwards. Previously he could name colours, count from 1 to 10, name most shapes... but now he gets confused, he can't name any colours at all. he goes to pre-school who are concerned. When he went back after Christmas he couldn't name any of his three teachers, or any classmates. He got confused at snack time and couldn't name the fruits on the plate. He finds it very hard to answer certain questions, when previously he was able too... I feel I'm loosing my boy. How has development been for you?

The Sodium Valporate gives him a bad temper and makes him really tired too.

It's made me really understand I need a gameplan to get his seizures under control. I just want to know what procedure you went through to try get seizure control? How often did you change dosages or change medications? When did you realize a medication wasn't working?

 

[Nakamova]

Hi fiona, welcome to CWE!

You might want to check out our forum "The Nursery" where you can read what other parents have posted.

Have you spoken to your sons' pediatric neurologist about your concerns? Perhaps Sodium Valproate isn't the right med for him, given that it's not controlling his seizures and it's giving him lousy side effects. There are other meds out there to try, and you might also look into a nutritional approach. Some info here: http://www.coping-with-epilepsy.com/forums/f22/intractable-epilepsy-tied-nutritional-deficits-944/ and here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[fiona]

I posted over a year ago about him getting diagnosed, his EEG came back positive. So after not wanting to do medication, I was told by the consultant there is a high success rate with medications, but I've been reading so many stories of children stuck in limbo with one med, after another med, after another med... With new complications with each med introduced to tackle.

And I'm just thinking if ketogenic is something I could do? But it does look very daunting.

It has been a long and difficult year.

 

[Nakamova]

Sorry to hear how tough it's been. A big hug to you, and wishes that things look up for you and your son.

Here's a link to an article about the ketogenic diet, which you might find helpful:
http://www.nytimes.com/2010/11/21/ma...e&ref=homepage

 

[seanr53]

Hi Fiona,

Sorry to hear about Thomas's problems. I wish you both the best of luck, and hope you can find the best treatment. I really hope his development picks up again - make sure you get onto your Paed. Neuro. about this issue. I agree with Nakamova on the meds - it seems like a long time to be on a med that isn't working that well. Sometimes you have to be a little bit pushy with your doctors - I find it hard, but you need to let them know what is happening. Most of them are understanding, but are also very busy.

I am in the same situation with my son Luke, who is on Keppra, Topamax, and half way through phasing in Lamictal. We have not had seizure control yet either.

The ketogenic diet is certainly an option. One we are also considering. But we are going to wait unit we finish the Lamictal trial, which will be the fourth drug we have tried. After four drugs, I don't think trialing a fifth drug is the best step forward for us. But we must give Lamictal a good go before trying anything else. Also, trying two things at once is not a good idea - it will be hard to pick what is working for you.

Having said that, the ketegenic diet is a big commitment, so we are going to trial a few other diets, such as low-GI, and modified atkins diet before we try the Ketegenic diet.

It is worthwhile researching the hopspitals and clinics, as some are more successful with the Keto Diet than others. From what I gather it needs a good team, with an experienced and commited dietician the essential team member.

Cheers,

Sean

 

[Endless]

Hi, Fiona,

What a tough year you and your son have had.

I understand your concern about meds. The ketogenic diet actually has a pretty high success rate in children. Two thirds of the children on the diet are helpe by it.
http://www.epilepsyfoundation.org/answerplace/medical/treatment/diet/

They usually put kids in the hospital to start out the diet. Then a dietician helps get things in place at home. It's a very strict diet. That's one of the reasons it is recommended only for children, not adults. Childrens' diets can be closely controlled by their parents. It's time consuming, too, but from what I've read once you get into the swing of it it's easier.

Since he is still having seizures you would be able to tell if the diet is working, even though he is on meds. It's much harder to tell if a person is on meds with all seizures under control.

If you decide to do it will you tell us how things are working out? In any case, please let us know how he is doing.