This week has been all about raising awareness of Infantile Spasms.
I have been asked to help spread the word by a lovely Mummy of a beautiful daughter, Alani. I met Donna and Alani at swimming when my daughter was also a baby. They had already had a rough ride but are so strong. Read more about infantile spasms, what Donna has experienced, what to look for and how you can help. By raising awareness, we are not only helping Donna and Alani but many families in the future. Come on spread the word.
Donna explains….Our journey started at 5.5mnths old when Alani stopped breathing at home
Quite often signs are not noticed with IS and are mistaken for silent reflux, colic, viruses or infections. I was told by many different doctors and nurses I was a first time mum over reacting. Yet from 10 weeks old I knew something was not right. Yet it took her to stop breathing and be blue lighted to hospital to have my voice heard. Please let’s make IS known for others that may experience this. I have uploaded a video of Alani experiencing SPASM seizures and blank dazed eyes inbetween (as I started videoing she went into her 9th one) If not caught and treated early IS can have dramatic impact on children.
……its so important that diagnosis is done as soon as possible so that medication/treatment can start straight away. For us in the early days this was a tough fight as Alani had allergic reactions to some of the medications that were first tried. The most common form of treatment is steroids, unfortunately we couldn’t have this treatment because of secondary problems with Alani’s health. After trial and error of numerous treatments they put Alani on Keppra and Vigabatrin. It took weeks to build up the dose and for her to become stable enough to come out of hospital. With drug treatment their are always side affects. We had sick days…..we had sleepy days…..we had lifeless days. My baby was lost for a short time dosed up on drugs that were keeping the seizures at bay. We had development delays and mile stones that were never met or regressed.
The diagnosis of infantile spasms is made by a combination of the typical features with a typical EEG. It is so important to push for an EEG if you have any concerns. The EEG shows a very disorganised pattern called ‘hypsarrhythmia’. The EEG is always abnormal in children with West syndrome but sometimes this abnormality is seen only during sleep. Infantile spasms, like many other ‘electroclinical syndromes’, have lots of different causes, but some will never be found. A video of the spasms is also very helpful so have your phone/camera around to capture them.
Most children with infantile spasms will need a number of tests apart from the EEG. These include brain scans, blood tests, urine tests and, sometimes, spinal fluid and other tests in order to try to identify the underlying cause. The most important brain scan is the magnetic resonance imaging (MRI) scan. Alani had to go through all of this numerous times and still to this day has various testing.
This is UKIST official video which has been used to help raise awareness of Infantile Spasms. Please if you don’t want to watch it as it’s upsetting then share it so people are made aware of what to look out for
……Nearly half of babies who suffer from a form of epilepsy called infantile spasms aren’t accurately diagnosed for more than a month, a delay that can lead to devastating consequences. “A delay in diagnosis can lead to treatment failure and increase the risk of intellectual disability, autism, lifelong epilepsy and even death,” said Dr. Shaun Hussain, “Some of these children can be cured, but successful treatment often depends on prompt diagnosis. The delays we observed are simply horrifying and represent a failure of our healthcare system to address a preventable cause of mental disabilities”.
We have been extremely lucky Alani has only experienced slight development and social delays and is basically caught up with everything now. One thing that was super hard was the fact Alani used to stop breathing having seizures on a night, so was hooked up to an alarm system and this was the scariest thing. She didn’t hit some milestones that other babies did but she did it in her own time and way. For example didn’t walk until she was 23mnths this was due to the seizures affecting her right side, but she tried everyday. She bum shuffled never crawled until she was 13mnths. We still have sensory issues on going, we have progressed into an uncategorised epilepsy and some weeks experience seizures daily. She has certain traits which are currently under supervision and she appears to have a low immune system and picks up everything going. She still has extremely unsettled nights which they think could be seizure related but it’s a guessing game right now. She is amazing…..she is my baby! She’s strong willed and intelligent, she is a WARRIOR.
We are super lucky that it hasn’t affected Alani is any devastating way and that she manages to have a fairly normal life. For so many others on a similar journey to us the story is so different and unfortunately loss of life has sadly occurred within our IS community. Alani has come so far, she is amazing, she is strong, she loves life and all the things it has to offer. Yes we still have to go to the hospital regularly, yes she has epilepsy and is on medication probably for the rest of her life and a few other things going on……But we take the good and bad and try our hardest to focus on the good (which is very hard some days). Alani has gone through so much is her short life time from first being diagnosed at 5.5months and being rushed to hospital and being in for 2mnths. She’s has multiple EEG’s, MRI scans, lumbar punctures, a ridiculous amount of blood and urine tests, multiple medications some with horrendous side effects, seizures that stop her from breathing, problems with sleeping, weaknesses in limbs the list goes on and on. Still she smiles she plays and I love her more and more each day. We could not of got through this journey with the constant support of our family and close friends they have been amazing. Plus a big shout out to York Hospital A&E and Children’s Ward staff you were all fantastic and you still continue supporting us. Alani is my Purple Warrior 
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The parents of another local little boy, would like to share Ethan’s Story #ISAW2017 💜
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Mum and Dad’s message – Happy 1st Birthday to our brave and loving little boy! We love you so much and always will! We feel you around us and hope that you are watching us and with us all the time xxx
Ethan’s defining characteristics have always been a happy and very loving little boy, with a whacky sense of humour. He would laugh at the silliest things. Everybody, who met him would feel his positive glow and would feel uplifted by it. This was accompanied by a big and heart-warming smile!
Ethan had big, wide open and curious eyes that were filled with enthusiasm for life and you could feel his warmth and love as you stared into them. Ethan always made everyone feel special and loved by his beautiful little gaze. He would never cry or fuss and was so very chilled out – almost like he had life figured out and wanted to enjoy every moment. I’m sure his wish was for everyone else to feel the same and enjoy every moment too.
Peppa Pig was Ethan’s favourite cartoon and he would watch this whilst eating big bowls of porridge or having desserts, which he loved! He always loved being around his family too and enjoyed days out and holiday trips in UK or abroad – he was quite the travelling baba!
Ethan first started having Infantile Spasms at the end of August 2017. After initially checking on the internet, as well as posting a video onto UKIST, it was suspected and later confirmed at hospital too with an EEG test. This was put together with a previous MRI scan that Ethan had in August following parent’s concerns over development delay milestones not being reached. Further tests needed to be done based on the findings that the delays could be either Cerebral Palsy or an underlying Metabolic condition.
Then began a 3-month long fight through hospital, with Mummy’s and Daddy’s love and hope, powered by Ethan’s strength, love, positive energy and little signals that Ethan gave to let them know he wanted to keep fighting. Ethan was so strong through all the tests, medications, poking, prodding and examinations, that he never cried once. At times, it felt like Ethan was the one who was giving his parents strength and re-assurance in the toughest moments.
Being part of a very strong, loving and open family, they all supported each other through the bad times. This wasn’t always easy because Mum and Dad were researching like crazy whilst never leaving Ethan’s side to find a cure, or at least some help for Ethan and were aware of exactly what they could be dealing with, if the diagnosis was cerebral palsy or a metabolic condition.
Ethan’s Infantile Spasms over the course of this time changed with varying scales. All of which were posted on UKIST as videos for more clarity and insight from the group. The love, support and observations from Jenny and the other parents on the site was incredible and it was re-assuring that Ethan’s parents said that they didn’t feel so isolated and alone, because others were going through similar situations too. It was a great resource to post questions about types of seizures and various medications, as well as success stories too.
Ethan sadly passed away on 12th November 2017 after a long battle with Leigh’s Disease (a metabolic condition that affects energy depletion in the body’s cells) at 11 months old, with his Mummy, Daddy and close family with him in hospital. He hung on tight for cuddles with Mummy and Daddy holding his feet.
A little angel that has touched the lives of so many people and can bring the gift of feeling love and warmth from looking at his photo! Thanks for reading x
Please do share this and help raise awareness of Infantile Spasms, you could be saving a babies life as well as giving the parents the all so important support they need…
The UK Infantile Spasms Trust
#ISAW2017
