K Bear

K Bear

Male / 2 years & 4 months

K Bear’s Journey

Share the first part of K Bear's story for readers on Sleuth! When and why did you start to feel concerned?

When K Bear was 6 months old we took him to a Christmas party with lots of similar aged babies. They were all rolling and some were even trying to crawl. I felt alarm bells ringing but friends and family reassured me that boys take longer to develop and that K Bear was just lazy but we felt uneasy. We put the delayed development down to lack of sleep and almost zero time spend doing tummy time as he’d just scream. At his 9 month check-up, the paediatrician was concerned that he rarely rolled and still couldn’t sit unsupported. He recommended physiotherapy and reassured us K Bear would only need two or three sessions. Now looking back at photos before this check-up, K Bear was starting to sit unassisted but had slowly lost the ability in the run up to spasms starting. He’s also not smiling in most of the photos around that time which we now know are tell-tale signs of IS. A few days after this appointment K Bear made a strange movement, a little like he was losing his balance and putting his arms and legs out to steady himself. His arms and legs would fling outwards like he was falling forwards. He had an ear infection at the time so I thought it was due to that, however, I sent an email to the paediatrician describing the movement the best I could. He told me not to worry and that it sounded like a normal baby movement. A couple of weeks went by and K Bear was still doing this strange movement a few times a day. We had started referring to it as ‘jumping’ or ‘falling’. My father-in-law was very concerned when he saw it, but I told him the paediatrician said it was normal. He wasn’t convinced. We finally got footage of the spasms and sent it to the paediatrician on a Saturday, two and a half weeks after we first saw one. He replied later that day which we thought was strange as it was the weekend. He told us he’d forwarded it to a neurologist and the lump in our stomachs expanded. We were terrified.

What was your experience, if any, seeking a diagnosis or treatment?

After sending the video of K Bear's spasms to the pediatrician we were called into the hospital. It was in March 2020 as Covid cases were exploding and we were all full of cold. Luckily the hospital allowed us in for Kasper’s EEG. It was a long wait for the results and we weren’t allowed to leave the room without permission. I remember very little about the talk except for hearing the words ‘epilepsy’ and ‘spasms’. We went home in a daze feeling like we’d been told something terrible but not really knowing why as we’d been given next to no information. I reasoned that epilepsy was not that bad and lots of people have it and they’re fine. When we got home we googled ‘infantile spasms’ and we felt like our world was falling apart. I had never even heard of it before. All we could do cry, hug and drown our sorrows. The statistics were bleak. The next day we started Vigabatrin (Sabril) and over the next six days we increased the dose until we saw our last spasm 6 days after starting treatment. A repeat EEG a week later showed ‘significant improvement’. His MRI also came back clear. We feel very lucky as many children's IS go undiagnosed or misdiagnosed as reflux or the Moro reflex. Our pediatrician took the video very seriously and we were sent to a neurologist who knew exactly what he was seeing. Many doctors have never seen or even heard of IS

Do you have any other thoughts or advice you would like to share from this experience?

IS is an absolutely terrifying diagnosis and googling it was a terrible idea. The statistics are old and bleak and do not take into consideration the awareness that has been raised and the new treatment options. I would highly recommend new families do not google infantile spasms (easier said than done but join a Facebook group and connect with families. IS is a symptom of an underlying cause. Comparing your child to another with IS is never a good idea. The outcome for these children can vary enormously and the underlying causes are massively varied. I would encourage any parent/family member who suspects a child has infantile spasms to film the movements, go to the nearest ER/A&E, a children's hospital is better and say they suspect the child has IS. It is classed as a medical emergency. The hospital should provide an emergency EEG. I have heard so many horror stories of families being sent home and children go undiagnosed for months or even years. Time is of the essence with IS.

Timeline

Below is a timeline of K Bear’s observed symptoms, diagnosed conditions, and treatments and therapies.

K Bear's Medical Notes

Signs & Symptoms

Spasms

No smiling

Diagnosed Conditions

Treatments & Therapies

Doctors & Specialists

Additional Info

On Hypotonia

I think this is related to a genetic syndrome (not yet diagnosed)

On Seizures

K Bear's spasms started as single movements and developed quicky into clusters of spasms

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