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10 y.o. like 'drunken sailor'; doesn't eat

Fri, 08/25/2006 - 23:25
Our son is nearly 10. For three years now he has been taking medication to control fits. This is after an initial grand mal that alerted us to his problem. An EEG showed that he was having almost continous absence seizures and petit mals. The specialist started him on Epilim. This reduced his apparent fits most considerably. He would still do a 'monster act' regularly, shortly after awaking each morning and maybe once or twice more during each day. During such fits his arms would raise involuntarily and his eyes roll back so you could only see the whites and he'd make a strange involuntary noise. Of course, if he was holding anything like a drink, this would end up everywhere. He would also wet himself if his bladder was full. Adding Lamictal to the daily med regime has cut back again on the frequency of the visibly obvious fits described above so that they are now quite rare. Prior to being diagnosed, Tak (as we will call him here) seemed to be developing cognitively quite well. In fact as a pre-schooler (aged 3-5), he had taught himself to read with little or no help from his parents. He seemed in those days to be prodigiously intelligent. I sometimes wonder now if the brain lessions (or whatever is the cause of his epilepsy) resulted from very quick early brain development. Just prior to his first fit we had become concerned that he had a speech impediment because he would repeat phrases and not complete sentences. The reason why is now clear to us. The drugs seem also to have helped this aspect of his communication. Though it is still a little slow and disjointed, he can verbalise with more confidence. Increasingly though now it seems that he does not even try to express complex thoughts. His teacher has been very patient and understanding. He can see that the boy has basic intelligence. But of late even this teacher's patience has been tried to the limit as Tak's ability to stay focussed and on topic seems to be slipping away, so that now he doesn't even try. He seems always away in 'dodoland". I guess that we should be thank goodfull that he is not naughty or energetic! Tak's father has been keen to have him partake in sport. The junior levels of soccer are uncompetitive and once again the school and the coach and the team mates have been supportive. Still, it has been frustrating to see the other boys' motor skills developing while Tak, if anything seems to be regressing in this regard. Just lately, with any physical activity he looks like a drunken sailor who hasn't any land legs. He wears out very quickly. Tak seems to require lots and lots of sleep. He will often fall deeply asleep during the day - even at school. Lately he has been in a very long spell of not eating much at all. This loss of appetite means that he nibbles at food, eating like a sparrow, never finishing enough even to feed a sparrow. I am writing now because I'm trying to work out whether the most recent slippages in his mental and physical capabilities may be a result of lack of nutrition compounding the symptoms of his illness, or whether, the problems I describe (lack of concentration, sleepiness, dizzy behaviour, lack of appetite) may all to some degree be drug side-effects? Possibly there is someone with similar experiences who can offer an opinion, thanks? Our specialist is away on extended leave. We are worrying that if Tak doesn't eat soon he'll waste away to nothing.

Comments

Re: 10 y.o. like 'drunken sailor'; doesn't eat

Submitted by tslate on Wed, 2006-09-06 - 18:31
Tak, I feel your concern and pain, my son is in 6th grade and he had his first and only seizure 1 year ago sept 2nd.He started on 1000 mg of Keppra 500 in the morning and 500 in the evening. He is also struggling to stay focused and his short term memory is terrible. He makes good grades and quizes is what gets his GPA down. He also learned to read early 4 years old and is very intelligent. His motor skills have never been great but he is a very caring and loving person who seems older than 11 and more like in his thirtys. I believe the Keppra is what keeps his sluggish and sometimes not listening attitude; although simple things like bring down your socks and shoes brush your teeth etc. have to be told more than 3 times every morning. We are having a follow up EEG on the 18th and I hope we can start reducing his medicine intake gradually the rest of this year and next. If you need anything or some advise you can reach me at troy21cm@msn.com Take care, Troy

Re: Re: 10 y.o. like 'drunken sailor'; doesn't eat

Submitted by jovigil0525 on Thu, 2007-06-28 - 23:11
I am so glad to hear a story similar to my own. My four year old daughter was diagnosed about a year ago with complex partial seizures which we later found out were actually generalized and being masked by Keppra. She was otherwise normal prior to her diagnosis. She talked early and hit normal developmental milestones. She took Keppra alone for about six months. It lessened her seizures, but did not control them so we started Trileptal. She was a complete zombie on Trileptal and began having extreme motor difficulties. She could only take a few steps without falling and could not run at all. For this reason, we discontinued Trileptal and started Topamax. She has gotten good control with the Topamax, but is has suffered greatly from the side effects. She really regressed developmentally this year. She "forgot" things she had already learned and on top of that the motor difficulties have not gone away. They are MUCH better, but she still falls often, can't jump, etc. She was recently tested by the school board for early intervention services and I was shocked at how far behind she was developmentally. She qualifies for speech therapy, occupational therapy and adaptive P.E. We have brought the Topamax down as far as we can (15mg BID), and the cognitive effects are much better, but we don't know if it's fair to her to have to deal with these problems without trying other meds.

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