The Frightening Symptoms of my Son’s Mysterious Disease

It all started last summer. We’d had a perfect family holiday in Hunstanton, Norfolk: a beach from my childhood, a trip down memory lane and a great catch-up with my big sister Lorraine. Such a great holiday! Little did we know it would be a prelude to our son Louis getting ill.


We got back home from holiday and a week or so later were seeing to our horses with our children Will, who is 5, Louis, 3, and Connor, 2. Suddenly Louis started to fall over. He was giggling maniacally when he did it, so much so that I got cross with him thinking he was fooling around. It really looked like he was just mucking about. His legs would buckle and spasm and he would fall to the floor. When he did manage to drag himself up he would stagger around like a drunkard before falling to the floor again, all the time smiling. It was only after a few sharp words and some near misses with barbed wire and a water trough that I started to worry.

We picked him up time and time again, but he kept falling down. It didn’t seem to bother him that much. I took a video just in case we needed to show it to anyone.

[video width="400" height="230" mp4="https://gayswithkids.com/wp-content/uploads/2015/03/Louis.mp4"][/video]

 

Louis picked up a bit when we got home and after he’d had some sleep. When he got up he was still a bit wobbly and didn’t seem himself, but not wanting to worry unduly we decided to wait, watch and see. Still worried I posted the video online to see if anyone had experienced anything similar. Now when I look back at the video I’m cross that we didn’t do something sooner, as it seems so much worse than I remember. We were just so undecided on what to do for the best. We had loads of responses to the clip. The most common thought was an inner ear condition. I wasn’t so sure.

The next morning Louis was a bit better, but still wobbly and not quite right. I received a message from a friend who is a nurse. The friend had kindly shown the clip to a pediatrician whose advice was to get Louis into hospital immediately. I rang my husband Ivan in tears. Why hadn’t we taken him straight in? What if our delay had made things worse? I was so scared.

We took Louis directly to the emergency department. The physician there was clearly concerned; Louis was admitted immediately to the children’s ward for investigation. By this stage Louis couldn’t walk in a straight line, his speech was slurred and he was starting to drool. His right eye was wandering and his fine motor skills were off. We were terrified. We couldn’t lose him, but it felt like that was a very real possibility.

The doctors explained that Louis’ wobbling was a condition called ataxia and that it could be caused by a number of things, such as a brain tumor. Louis was rushed in for a brain scan; thankfully, the results came back clear. The following week saw Louis having test after test. He had a lumbar puncture to check for meningitis and related conditions; all came back clear. He had numerous blood tests to check for various conditions and illnesses; again, all of them came back clear. Louis was put on IV antibiotics and antivirals as a precaution. (He has been left with an intense fear of needles.)

After a week or so of tests, when all immediately life-threatening conditions had been ruled out, they let Louis come home. We managed to get back to some sort of normality. But we still had no answers.

Slowly, some of Louis’ symptoms improved. His walking became steadier and his eye settled; however, his speech continued to be slurred and his fine motor skills were not what they used to be. He played and giggled, but there’s a delay and a vacancy there. It’s hard to put into words. While we still love Louis beyond words, he was only a shell of the boy he was before. We felt utterly helpless. As his parents we wanted to be able to kiss it all better as you would a scuffed knee. It just wasn’t possible. It felt like we were failing him.

Louis was referred to a top pediatric neurologist who repeated all of the tests and carried out more.

It’s coming up to eight months of investigation now. All of the obvious things have been ruled out, but we still desperately need to find out what is going on. At present we’re waiting for the results of various genetic tests for some pretty horrible things, mostly degenerative conditions that just seem so unfair.

As Louis is adopted it makes things a little bit more complicated. We have his rough family medical history, but it’s not as detailed as we’d like it to be. Both birth dad and birth mum were asked for their consent to check their medical records. His birth dad has agreed, but his birth mum hasn’t.

Louis has clearly gone backward from where he was prior to the incident in the summer. He’s still our gorgeous little man with the cheeky smile, the glint in his eye and the oh so fiery temper! He goes to pre-school now, his vocabulary is expanding and he’s a bright little lad. But daily we deal with his wobbles. Some days he can’t stand or walk more than a few feet without falling; he’s always banging into things. His speech is slurred and he drools on and off. It wrenches my heart when I see him struggling to stab his food with his fork. We let him keep trying to maintain his independence. There are days where he’s so alert and bright that you can’t imagine there’s anything the matter; there are others when he’s dull and vacant, a shell.

We have some great support, not just from our amazing family and friends, but also from the medical professionals. They’ve assessed him and supplied equipment to help. We’re trying to find the best way to transition him to school while the doctors continue to search for a diagnosis.

In the meantime, we’ll stay strong as a family. We’ll deal with the ups and downs and carry on regardless, as is the only way. We’ll continue to hope and pray for a positive outcome. He is and always will be our ginger ninja. He is the lad who never lets it bother him and just picks himself up time and again. We’ve learned a lot from him. We have learned a lot about ourselves. If we had any doubts, it’s proven that we are family. We are strong. Together we’ll deal with whatever comes our way.

We love you Louis. Wobbles and all.

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