epilepsy spasms diagnosed in 12 year old boy

[sharondemartino]

Hello, My son James was diagnosed with Epilepsy Spasms in February 2011 at age 12. Cut a long story short, James had a fall at basketball last July broke his arm and suffered what apparently was a complex partial seizure a few hours later. Subsequebt EEG showed epiltiform activity and a MRI showed a minor abnormality and he was put on Epilim. Whilst on this drug James was suicidal, hallucinating and having more seizures it was horrific.He was placed on antipsychotics and gained a huge amount of weight and bascially his life spiralled downwards..... We weaned off Epilim and he was placed on Topomax at my request . The seizures were still not well controlled but by November they had evolved in to what we now know as epilepsy spasms. We got this diagnosis after a week long EEG/Video study by a professor of E at the Austin hospital. We were told this was very rare for his age and we have seen cognitive and mental deterioration along with the spasms. We underttok a PET scan in April which has shown a moderately severe epiletic encephalopathy to the right hemisphere and have been told we must treat the seizures aggressssively..... We have no cause to date and no real prognosis which is so frustrating. Jame did have learning and speech delay and sllep problems prior to thew fall butnever any outward seizure activity so this all very bewildering. We would love to hear from anyone who has spasms or a similar predicament. I should add that this condition has been likened to infantile spasms but late onset and Topomax is a second line treatment but we are a bit fearful of trying other meds as had bad experience already with the Epilim and Zyprexa which we have weaned off. It has been recommended we try Vigabitrin but we are yet to discuss this with our Neuro. I feel like this all too bizarre and almost tempted to wean off everything and see what happens......

 

[Nakamova]

Hi Sharon, welcome to CWE!

I'm sorry to hear about your son's diagnosis and difficulties. It sounds like the Epilim was a step in the wrong direction, leading as it did to even more brain meds. As you probably know, Topomax can have cognitive side effects (it's often called "Dopomax"), which may be contributing to some of your son's issues. I completely understand your frustration with the medication; if you do decide to wean James off of it, let the neurologist know, and go very very slowly to reduce the risk of withdrawal side effects.

The potentially progressive nature of epileptic encephalopathy does make it important to find on a treatment plan whether it involves medication or something else. Aside from the Vigabatrin, a med to consider is Lamictal, which has had some success treating infantile spasms and tends to have the fewest side effects.

For a non-medication approach, there are dietary/nutritional changes that might help. The Ketogenic diet would probably be tough for an 11-year-old, but the Modified Atkins Diet (MAD) or the Low Glycemic Index Diet are easier for older children and adolescents to follow. Those diets have shown success in treating epilepsies of all sorts, including infantile spasms.

Best,
Nakamova

 

[Dutch mom]

Welcome Sharon,

My 12-year old son has Lennox Gastaut syndrome (L G S), a bad epilepsy syndrome which in other children sometimes starts as West syndrome developing in LGS. My son is a special needs kid caused by braindamage. His seizures started at age 1,5 and L G S was diagnosed at age 3,5 based on EEG features and types of seizures.

I do know many kids (and their parents) with West/infantile spasms from a Dutch parent support group.
Usually West syndrome starts in infants (0-1 years) with the typical infantile spasms, disappearance of contact and social smile, sudden delayed development and a typical EEG pattern known as hypsarythmia. In most children the EEG pattern disappears as they grow older, some of them keep having spasms, others develop other types of seizures or even Lennox Gastaut syndrome. I know several children who are still having spasms ('salaam cramps') at older ages, but it's not diagnosed as West syndrome anymore as soon as the hypsarythmia is disappeared out of the EEG pattern.

Vigratibine (Sabril) and ACHT are first choice medications for West syndrome and for some kids very effective, especially in case of ideopatic West syndrome. For some kids with IS the ketogenic diet is a very effective treatment. For my son it has been the only effective treatment for over 7 years now, while before he started on the keto diet none of the >10 meds we've tried were effective. He is med free thanks to the keto diet and his seizures have decreased with 90% while his EEG improved >70%. Before the diet he had 10-100 seizures each day, all types of them, and his EEG was 90-99% distrubed continuously. The diet isn't easy but it's sure worth all effort when effective.

Thought you might be interested to check out the IS forum, there sure is a lot to learn for you there: http://infantilespasms.com/forum/

 

[sharondemartino]

We saw Neuro on friday and once again left there feeling a little confused.really.... In a nutshell James is doing reasonably well cognitively and mentally at the moment (reduced anxiety as now in special ed and not playing rep bball and chiroporactics has helped we think) BUT is still having spasms several times per week. I believe the topomax is helping ,although not entirely eliminating the spasms. I am under the impression generally that the spasms should be stopped as they will cause further dysfunction but my neuro thinks and said 'noones ever died of a spasm and that James is doing well in himself that is what he uses to gauge the situation'. He also said that i need to accept that he will never be normal and stop trying to be a scientist with all my research and deal with my feelings of helplessness..... I am inclined to get another opinion from an epileptologist as i as losing confidence in my neuro or maybe i cant face the facts... I can accept whats going on, but what i cant acccept is not knowing if the encephalopathy is causing the spasms or the spasms causing the encephalopathy, which nobody to date can answer. Anyone got any opinions on this? Also my current neuro is not interested in putting him on Vigabitrin or Keto or anything else that i suggested, he feels too many side effects and wants us to suck it and see ....I need clarity does anyone have an opinion about this?
Thanks

 

[Nakamova]

I think you should go ahead and get a second opinion, especially if you are not entirely comfortable with your current neurologist's attitude. If the second opinion agrees with the first neurologist's, then you might have some peace of mind in pursuing the treatment course he suggests. And if the second opinion differs, then you will have more information to help you make a decision as to how to proceed. And if you have a better relationship with a second (or third doctor) that will help in making future decisions about your son's health as well.

 

[sharondemartino]

i have a referral to another epileptologist and i feel i will be more satisfied with another opinion. He is the director of Neuroscience at our childrens hospital so he must be good! Maybe i will get some satisfaction knowing i am doing all i possibly can to ensure the best possible outcome for James. I hate not being in control ,it is soo hard to trust someone with your kids life even doctors...... Thank you for your support

 

[Nakamova]

I think you're doing the right thing -- let us know how it goes with the new doc.