Eliot's Journey

From pseudo-tumor to Alternating Hemiplegia of Childhood (AHC) This is Eliot Liam's path through life as a short summary.

Written by Eliotsmama, published 7 months ago.

Eliot's Journey

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.

Written by Eliotsmama, published 7 months ago.

2 comments for «Eliot's Journey»

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  • Siggi | published about 1 year ago | Originally written in English

    Dear Eliot´s mom,
    I am sorry to hear about Eliot´s journey so far. I see from your post that you have already figured out that you need to take him as he is and work around the shortcomings to try to make your life as good as it can be.
    It´s not an easy task to raise and AHC child but if you can look at the bright side of life then it really changes everything and can even be a blessing.
    Our children are so happy and wonderful despite all they go through, it makes everyone around then better persons.

    I there is anything you need, to chat or information etc. don´t hesitate to send me an email. The AHC community is a family and we have to help each other if we can.
    All the best
    Siggi
    siggijo@gmail.com

  • Eliotsmama | published about 1 year ago | Originally written in German

    Hello Siggi,

    thank you very much for your kind words.

    relatively early on we decided to prepare for the worst and to appreciate anything positive. We realized fairly quickly that Eliot probably wouldn't be able to go to a normal school, etc.
    And we decided relatively early that we did not care about his being different. It's nice to eventually know, what the reason for this is and where it's coming from, but it wasn't our goal to find these things out at any price. :-) For us it was clear that Eliot is Eliot, and we encourage him wherever we can in whatever he enjoys doing, and you can take my word for it, Eliot is having a lot of fun and is laughing a lot. :-)

    We've been "lucky" that Eliots attacks have been happening less frequently. He only gets them when he has a temperature or is getting sick (these we can't influence). He also has them when he is under stress or is overwrought by impressions or feelings. But we can for the most part assess these situations beforehand and therefore aim to avoid these situations. And even when they do occur, we realize the symptoms at an early stage and try to get him some rest. This often works for us and we can therefore prevent the worst.

    As you can see, we are coping with the situation quite well have been for a while. :-)

    We actually only ended up receiving the diagnose because the kids' neurologist had done some research on paralytic symptoms and happened to come across this locus. So we actually owe him the credit. :-)
    We are happy to have some clarity now, but at the same time it doesn't change anything. Eliot is and will be our sunshine and we will be able to master anything as a family. That's what we have been doing so far and what we will continue to do in the future. :-)

    The diagnose didn't crush us down. I don't want to step on anybody's feet here in case other people experienced it differently. We are happy to be able to finish this chapter and to see what the future will bring.

    Another thing to add might be that when Eliot has a seizure, it doesn't appear as if he is in pain. Maybe that's why we are so "relaxed" about it (as relaxed as you can be in a situation like that). It appears to be different with other people.

    One way or the other, we will do anything in our power to support research or to provide material so that in some cases a diagnose can be achieved in a faster manner.

    Thank you so much, Siggi!

    Best wishes to you
    Best regards from Düsseldorf
    Yvonne

    Notice: This text content has been translated automatically by a third-party service.

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