For Infantile Spasms Awareness Week 2024, Tania has shared her experience of her daughter Danika being diagnosed with Infantile Spasms….
Danika is my fourth child, and she was such an easy baby. At three weeks old she was in her own routine, was sleeping six hours through the night – until things suddenly changed.
The first time she had a spasm, I thought it was the startle reflex. We had been out walking and she jumped a few times, but a lorry had just passed – so I thought she got a fright and thought no more of it; but then I started to see other odd movements.
Her head would drop down, and her arms would shoot up and her knees would shoot into her chest and then out again. I started to record what I was seeing. I experience migraines, so I knew recording what was happening with her could be important. I started to keep a note of every time something happened. I wrote down how many jumps she had, how long it lasted - I wrote it all down.
The movements were happening when she was falling asleep and during the day, she seemed quite dazed - like she wasn’t responding fully to me.
With these movements continuing – I turned to google, and it brought me to Infantile Spasms UK. I don’t know where we’d be if I hadn’t seen that.
I took her to my doctor which wasn’t a positive experience. I was told she was constipated and when I brought up the potential of it being Infantile Spasms, I was not listened to.
We went home but these odd movements continued to happen. We found that there was nothing we could do to console her – and she just wasn’t herself at all.
She started to get sick after every feed and I turned to my local health nurse for advice. She had never heard of Infantile Spasms but said that I should trust my instincts and referred me to a clinic within the hospital.
I didn’t hear anything from the clinic for a few days, and eventually rang them in a panic when I was told that Danika wouldn’t be seen for several weeks. At this stage, Danika was inconsolable, was off her food, and it seemed anything I tried wasn’t helping. I just knew something was wrong. Eventually, we had no option but to get a referral to A&E.
The experience in A&E was not positive either. Anyone I spoke to hadn’t heard of Infantile Spasms and I remember how Danika had a spasm in front of a nurse. It was agreed that she would be kept in for observation, but two days passed, and it felt like we were getting nowhere.
This changed when we met a night nurse who had experience of treating a child with Infantile Spasms before – and a video of a Danika having a spasm was sent to Temple Street. The very next day, Temple Street had come back to say they needed to see us immediately.
It felt like something was happening at last – we were seen straight away and very quickly; Danika was put on a high dose of medication to prevent and treat the spasms. She has never had a spasm since.
We had very scary conversations about Infantile Spasms – and told how she may not walk and may have severe developmental delays as a result of the spasms.
Fast forward to now, and she’s flying now, there’s nothing she can’t do or say. Danika does show some markers for migraines and also being on the spectrum – which is common for children who were diagnosed with Infantile Spasms. She was delayed in beginning to walk, but she did start walking when she was 17 months – aside from that, she is still within the range of where she should be developmentally.
She’s still on meds and another EEG is planned for the near future. If that’s clear, we have discussed potentially beginning weaning her off medication with her medical team – which will be a big step. and if that’s clear, which her last one was, we’re going to start weaning her off the medication. And then do another EEG and if that’s clear then she’ll be off the medication all together.
The reason I am telling my story is that there needs to be so much more awareness around Infantile Spasms. At the beginning, it felt like every Healthcare professional I turned to had no idea what I was talking about.
I also had three other children – and I had never heard of Infantile Spasms – but my gut told me something was not right.
I couldn’t believe how little was known about this condition. Every healthcare professional and hospital should have more information about Infantile Spasms as catching and diagnosing the condition is vital to preventing potential long-term impacts.
My message to parents out there is that if you suspect Infantile Spasms, take a video and get to the doctor asap. If you are not taken seriously, go with your gut and trust your instincts. It’s better to be told everything is fine than to not go at all.
If you are not happy and think there’s more going on, ask for a second opinion. I hope our story will help parents and prevent someone from having to go through what we went through and please do learn more about Infantile Spasms during this important week.
Thank you, Tania, for sharing your and Danika’s story. Please follow her advice and visit the 'Infantile Spasms' section of our website to learn more.