West Syndrome and something else.

[NosyNessa]

When My son was 7 months old he started having seizures. The doctors diagnosed him with a form of epilepsy called 'west syndrome'. They immediately started a drug called ACTH (acthar gel). He reacted very well and they believe that we he had is gone.
However, he now has an umknown form of epilepsy. His EEG showed that his brain activity while he was awake was almost normal. But when he sleeps they believe that he is having seizures that cause him to stop breathing and are not visible to us. They have him hooked up to a sleep apnea monitor and we are giving him Topamax to see if it helps.
He is now almost 9 months old.

The Topamax is giving him a few noticible side effects.
The doctor told us that he would have a loss of appetite but so far he has been eating more than usual. He is also tired all the time.

My husband and I have been having a really hard time. But, we are confident that everything will turn out fine.

 

[Dutch mom]

Welcome on CWE from another mom.

My son has the Lennox Gastaut syndrome, the 'big bad brother' of West syndrome... About 1/3 of kids with LGS have had West syndrome before, developing into LGS as they get older. LGS is more rare, about 15-20% of kids with West finally do develop LGS.

My son didn't have IS, his LGS is caused by braindamage. But I do know many children with West syndrome and their parents (online and in real life.) I'm moderator of a Dutch parental support group for parents who have children with 'maligne' childhood epilepsy syndromes (West/IS, LGS, Othahara, Dravet/SMEI, Doose/MAE, Landau kleffner, ESES) and intractable types of epilepsy with no clear 'label' (www.sos-mies.nl - in Dutch - the forum is members only.) We have about 200 (ex) members (most Dutch parents and a few from Beglium) who have kids with West syndrome. Typical for West are: early development (first year) of seizures known as infantile spasms, a pattern of hypsarythmia on the EEG, losing contact and their 'social smile', sudden stragnation of development or even retardation.
A small % of kids with IS 'outgrow' it and stay seizure free without permantent damage on to their cognitive development. Most of them do develop a difficult to control epilepsy and mild to severe handicaps.

Your kid is very lucky to respond well on ACTH. Early seizure control is very important for a better prognosis. Vibratigine (Sabril) and ACTH are both first choice treatments for IS/West syndrome, preference for one of those treatments depends on the country and on your doctor. In Holland usually Sabril is tried before ACTH, in England ACTH before Sabril. I do know (allthough rare) succeses with both. ACTH tends to have a temporarely positive effect on most children and a permanent effect for a minority. Same story with Sabril. Topamax we've tried twice for my son without succes and many side effects. But I do know a few kids with West who are controlled thanks to Topamax. Kids with symptomatic West (wich means known underlying causes like braindamage, chronosomal abnormalites, mitochondrial diseases) tend to react less positive, 'idiopatic' West (no causes found) does have the best prognosis.

West syndrome is more 'common' than you might think, at least, looking at the childhood epilepsy syndromes mentioned above, it's the most 'common' syndrome.
You might find lots of usefull information and answers to your questions on the nocturnal seizures and breathing problems here: www.infantilespasms.com

Especially the members forum is very helpfull: http://www.infantilespasms.com/forum/

(I'm a member there too, not very active but I do read and post there by occasion.)