1st time in a forum!! Advice appreciated

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Alison

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Hi,
Have never used a forum b4 but thought it would be best place to get advice on how to control son's epilepsy. He had his 1st tonic clonic seisure age 11. After a few years, it was successfully controlled with Sodium valproate. Having been fit free for 3 years, he was taken off medication and told there was a 78% chance he'd be fit free for life. 8 months later he had another fit and then continued to have one every couple of weeks.

Between his seisures he had also started to have spasms causing him to drop or throw things. His diagnosis was changed to Juvenile myoclonic Epilepsy (I thi9nk thats the right one!)Neither of us wanted him to go back on the sodium valproate as it gave him the most awful wind!! The neurologist didn't seem to believe that was a side effect to the med - has anyone had the same? It's not just the embarrassment factor, I worry what harm it's doing to his digestive system if thats what it's producing. Anyway (excuse me for waffling!), he was put on lamotrogine. The fits have reduced now but not yet fully controlled. He's gonna be 18 this weekend and has booked a holiday to Ibiza with friends who have also just turned 18. He hopes to go to University next year though when he had frequent fits at the beginning of this year his grades have dropped. They have picked up now but he is still pretty scatty (takes after his mum).

We have a neurology appt next week. My son's now thinking he may want to go back on the Epilim if it's gonna control the epilepsy bu I'm worried bout the long term effects on his insides. Am I worrying needlessly? Would increasing the Lamotrogine be a good idea? Should we look at a different med altogether?

It's been good to get all that of my chest. He's next door now sleepin off his latest seisure. I'll try make any future messages shorter!!!!!!
Cheers,
Alison
 
Hi Alison, welcome to the forum. :hello:

"awful wind" is usually a sign of constipation.

Chronic constipation is a common problem in children; it is responsible for 5% of referrals to general paediatricians, 20% of referrals to paediatric gastroenterologists, and 10000 admissions to hospitals in the United Kingdom every year. Constipation is particularly common in children with disabilities; in a recent epidemiological survey of nutritional and gastrointestinal problems in children with cerebral palsy, constipation (defined as opening of the bowels less frequently than once in every 3 days) was reported in 98 of 377 (26%) of children. There is frequently a delay in the recognition and appropriate treatment of constipation in children and symptoms are often present for months or years before appropriate treatment is provided. Such delay is a particular problem in children with disabilities either because it is accepted as an inevitable consequence of the neurological impairment or because a higher priority is given to other aspects of medical management such as treatment of convulsions or postural deformity. Moreover, communication difficulties compound delay and failure to recognize the problem as the child with disabilities is often unable to express the discomfort caused by constipation. Abdominal pain is a frequently encountered symptom of chronic constipation in those children who are able to give an account of their experience and contributes considerably to the adverse effect that chronic constipation has on their quality of life. Similarly, adequate treatment of constipation provides relief for the child and can be observed to lead to an improvement in appetite or behaviour. For instance, the improvement in behaviour of children with autism following evacuation of retained faeces after constipation is frequently encountered in clinical practice.

Management of constipation in children with disabilities

... The following are some of the side effects that are known to be associated with this medicine. Because a side effect is stated here, it does not mean that all people using this medicine will experience that or any side effect.
...
- Disturbances of the gut such as diarrhoea, constipation, nausea, vomiting or abdominal pain
...

Sodium valproate

If your son has a digestion problem, you might consider a change in his diet that could be beneficial to both the digestive disorder and seizure control. There are several diets listed in the chart of alternative epilepsy treatments, but I'd suggest looking at the GARD/GFCF in light of the possible digestive problems.

While the GARD is the only diet in the chart that is still lacking clinical studies, there are several people here that have reported good results with it. There is also some research that suggests a mechanism for the therapeutic effect.
 
I want to welcome you to CWE.
Being short on time here today, I too want you to consider that his digestive system is actually telling you something. This could very definitely be the cause of his seizures. We don't always make the connection from one to the other. But there is great evidence that what is going on in the gut is causing neurological disorders.

I highly recommend that you research this. You might look at the anecdotal evidence that the Autistic community is sharing. I realize this is not a diagnosis for your son, or my daughter, but the same information is actually recovering their children. It does make sense then that we can learn from their information as well.
 
My other son IS autistic and although I think we all eat a balanced diet and avoid fast food maybe I am overlooking something in our diet which perhaps is having an impact on both my boys. I will look into it.
Many thanks,
Alison
 
I have a son also on the spectrum, though high functioning. It wasn't until he started having intestinal issues that my interest was directed toward this info.

Look at:
www.stankurtz.com
www.danasview.net

I too thought we had a balanced diet. I learned it is more than that, and the FDA nutritional pyramid is way off course. It isn't a quick fix, but it might be a lifetime recovery for both.
 
Just wanted to welcome you to the forums. I think you will find a wealth of support and information here. I have also heard alot about diet and seizures, so it is definitely worth looking into. Hope things get better soon.
Leslie
 
Hi Alison! Welcome to CWE. Feel free to ask questions, chime in , or just vent when needed. I took Depakote (the sodium valproate) for about 16 years. I didnt' have wind as a side effect....constipation and weight gain...but no breaking wind. It worked great for me...and then the doc took me off it because I had outgrown the type of seizure I was taking it for.
 
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