MRI results lesion - Putamen

[donnajane]

When my son saw his Nureo just over a week ago, he said I will give you a copy of the report from his MRI. He explained he had used the word inflamation in an email to me a few weeks earlier but really he has a lesion in his brain in his putamen. He said the reason this never showed on his EEG's was it was to deep in his brain, although he had slow brain waves on the back right of his brain on his last EEG. What does it mean well I don't think he really knows. He said if I google what it says I will see the word tumor and it does have a risk of growing and causing more trouble but at the moment they don't know what it is going to do, if it does not alter in size he may always have the issues he does though. So more MRI's next one in Jan, unless his conditions worsens and then regularly until he is 10yrs old. If it alters at all the Nureologist said they will discuss with us the next options. He didn't have an results of the lumbar puncture and bloods which were done at the same time but hopefully we will get all these results when we see the metabolic unit on Tuesday.
I will admit I am a bit shocked by what they found as all the Dr's (Nureo, Paed, Metabolic, GP) reassured us the chance of finding a lesion would be very tiny as his seiuzres, issues with walking, eating, reactive swelling, sleeping etc come and go and lesions don't usually do that.
He still has everyone confused with his sleeping as the Nureo explained that the dose of Tegretol he is on at night he should have a pretty restful sleep but instead usually has a very active night and often up but then has absence seziures.
After a really bad week with lots of seizures, hardly eating and not being able to walk very much and other weird things, they were increased as he had a virus, I thankfully have my little man back. He was so good yesterday basicaly a normal cheeky toddler, my husband and I couldn't stop smiling, today wasn't as good but when he has days like yesterday they give us so much hope but also make us realise how tough his bad days are.
Donna

 

[KarenB]

Tegretol can sometimes aggravate absence seizures.

We have noted the same thing with cognitive and motor function waxing and waning. Sometimes, a very harsh tonic clonic will cause our Jon to have a pronounced limp for the next day (and one time that lasted for about a week). Last week, after a tonic/clonic, his doctor was testing his reflexes, and he had absolutely no reaction in his right leg. (But it's doing just fine now).

It may be that the tumor is the cause of your son's seizures, but the seizures themselves are affecting the parts of the brain associated with motor function, etc.

Also, the meds might be to blame -- Tegretol can cause upset stomach and impaired motor function.

None of the seizure meds are very "nice" -- but Tegretol can be pretty nasty. If your son is not a candidate (at least at this time) for surgery on the lesion, you might want to consider the Ketogenic Diet.

 

[KarenB]

Another thing...we haven't been on Tegretol, but my son was on Trileptal, which is in the same family (although it's side effects aren't supposed to be as bad).

Well, we started calling the side effects the "Trileptal Terrors." Our Jon took this med when he was 6 years old. It made him so hyperactive, he couldn't sit in his chair at school for more than 10 seconds -- he couldn't even sit on the potty long enough to relieve himself (potty training just went out the window). He also became VERY aggressive -- especially at school. His principal was trying to get him kicked out.

And...to make matters worse, it didn't stop the seizures!

These were not listed as common side effects of the medication.

Finally, after about 3 months, his doc took him off, and the hyperactivity and aggression abated (but didn't completely disappear). His neurologist told us that this medication is also used to treat certain types of psychosis -- such as bipolar, but in some "normal" kids, the med has the opposite effect -- of making them psychotic.

Apparently this is characteristic of several of the seizure meds with children -- they cause the opposite effect of what is expected.

 

[donnajane]

Thanks for th information. I do wonder what affects Tegretol is having on him but it has assisted with his other seizures. His Nureo has been very careful in not using the word Tumor in relation to my son other than saying if you googled what report says we would find tumor. I can understand this as it has been explained to us until they know more the word lesion is probably better.
One thing the Tegretol has done, it seems, is it has allowed his brain to uncloud a bit and he can now interact with us and his brother and sister. His paed hadn't seen him since starting the tegretol and when she did couldn't believe it as she said it was as though a fog had been lifted.
In saying that at his appointment with his Nureo on the same day the Nureo described his behaviour as almost Manic. We have been told there is room to increase his dose further but as he is already on a pretty high dose for his age etc it will be kept the same unless his condition worsens.
Hopefully we will get some more information tomorrow at the appointment at the metabolic unit. We have thought about doing the diet but he has so many strange issues with food that we have been told at this stage to hold off on that.
Thanks again for the info I really appreciate it.
Donna
Donna.

 

[KarenB]

The keto diet IS very regimented, and hard for some kids (and their parents) to deal with. However, some kids will respond to more subtle changes in their diet. Our nutritionist usually recommends removing sugar and gluten (mainly wheat products) from the diet -- this can make an amazing difference for a lot of people.