June warrior – Madeline – diagnosed in a pandemic

My little girl Madeline was diagnosed with IS at seven months old. I had noticed some strange movements one Thursday evening during dinner. At first I thought she just didn’t enjoy my cooking! But when they happened again over the weekend I was concerned and went to A&E first thing Sunday morning after ringing 111. Thankfully they took me seriously and we were admitted onto the ward. Luckily the doctor we saw was aware of infantile spasms because her eldest daughter had the same diagnosis when she was a baby, which I am sure helped us!

Facing such a potentially serious diagnosis during the pandemic was awful because I had to do it all alone.
I think the masks (although necessary) also made the experience scary. Missing seeing kind faces of the nurses to reassure you that everything will be ok when they were drawing blood, or putting her to sleep. As horrid as it was for me, I can’t imagine how bad it was for my partner. He wasn’t allowed in with us. He was sitting at home constantly waiting for text and call updates. He felt helpless and devastated that he couldn’t be there to support me or our daughter during the scariest period of our lives.

After the EEG Monday morning and a MRI scan they confirmed a diagnosis of infantile spasms. Thankfully we could be together when we formally got the diagnosis which was something. We started on steroids and vigabatrin and after 3 days the spasms stopped.
We were initially told in hospital that the MRI was clear, we then had a Skype call from our consultant telling us that she had ‘black spots’ in her brain and the scans needed to be analysed by doctors at another specialist hospital. The MRI report came back clear after they told us they originally thought it might be tumours.
We have recently been told that there is no genetic reason for the spasms which is such a relief, but in other ways leaves so many unanswered questions and worries as to why she’s had them.

Between the pandemic and then this, I could never have imagined this is what my first year as a mother would be like. I found a great deal of support through the UKIST Facebook support group from other parents who had been through the same. It made me feel less alone during all the scans etc. Just a little heads up about what to expect with steroids and the wean was invaluable.

Madeline turned one in April, and has now fully weaned off all her medication which is amazing. She’s doing so well and making progress. We are still in talks as to if Madeline needs further MRIs to confirm what the ‘black spots’ are on her brain.  I have a strong, happy and determined little girl who has conquered these horrible things thrust upon her in her short life.