Eliot’s Journey

From pseudo-tumor to Alternating Hemiplegia of Childhood (AHC)

This is Eliot Liam’s path through life as a short summary.


Eliot Liam was born in December 2010. At the end of December everything began to get a little difficult. Eliot screamed and screamed and didn’t stop. All there was for him was screaming, eating and sleeping. Furthermore he NEVER never lay still and his arms and legs were constantly moving. His pediatrician at the time just kept saying „Well, you just have a screamer baby, you have to cope with it“ or „When you get a bit calmer yourself your child will also get calmer“ and so on.

We were very unsure, but immediately recognized that something wasn’t right.

When he was 3 months old, I woke up one night (Eliot was in bed between us) and noticed immediately, that something was wrong. Eliot was lying there completely still (which he NEVER did while he was awake) and his eyes kept rolling up and down. This went on for about 10 minutes. The Pediatrician said that this was a perfectly natural phenomenon called „Greeting the Sun,“ and nothing to worry about. Eliot did this 2-3 times more, as far as I noticed. For me this was never „normal.“

As Eliot was still screaming a lot when he reached 3 months of age, and his development wasn’t going the way I was seeing in other children, we started to get more nervous. Eliot was cross-eyed to the outside, did not reach out to things, didn’t look at us and never smiled etc.

At this point we insisted (and we really had to fight for it) that Eliot’s eyes would be examined. The appointment for the eye exam happened when he was 5 and a half months old. The head doctor looked at his eyes and told us „You will drive directly to the University Hospital. I will refer him as an emergency. There is a suspicion that he may have a brain tumor, as your son has increased pressure in the pupil!“

After 2 and a half weeks of countless examinations (MRT, CT, Ultrasound, EEG) they did a lumbar puncture and found that Eliot was suffering from a pseudo-tumor Cerebri (excessive production of brain fluid.) He must have spent the first months of his life with terrible headaches and without really being able to see or hear anything much.

From that point on the screaming issue was a little better, but his development was still very delayed to the point where it was finally considered impaired. His motor skills are getting better, but anything requiring fine motor skills is very difficult. He does not talk and is hypotonic around the girth / loin area. He is farsighted, has sensory disorders and appears to be mentally handicapped.

When he was about 3 years old, he suffered the first paralysis attack that we properly noticed. Eliot collapsed on one side completely. We immediately informed the pediatric neurologist and he was taken to hospital. After more days of tests with EEG and MRT and so on he was discharged after about 5 days, without anything having been found. (He was well again at that point.)

As his paralytic attacks were becoming more frequent, and were interrupted by episodes of sleep or very deep and sustained quietness, our pediatric neurologist got together with a specialist for epilepsy and together they searched for illnesses which could fit the symptoms.

So this is how, today, we received the diagnosis AHC, but in his case it is a variant of the mutation which has not been documented in this form previously

Eliot is a happy, cheeky and funny little man, who wraps everyone around his little finger 🙂

The picture is about 1.5 years old now, but apart from the fact that he has grown he hasn’t changed.

– See more at: https://www.rareconnect.org/en/community/alternating-hemiplegia/article/eliot-s-journey#sthash.sgk7fYk6.dpuf