When you have a child diagnosed with Sotos Syndrome it’s hard to know what to expect, there is a list of things to watch for and each child will be affected differently. Some start life with a lot of medical issues, which typically improve as they get older. Some have no medical issues and the first time something is suspected, will be a growing realisation that milestones are not being met. Some improve a lot in the first few years of life, others improve more slowly but typically they progress at a pace unique to them. We will share a few stories in this blog series to illustrate the range of experiences.
Today we ‘Google Met’ with Priyanka, who is the mum of Ayush who lives in Melbourne VIC, who has Sotos Syndrome, and she shares her experience raising Ayush in this Q+A.
Q: Tell us a bit about Ayush, from your perspective.
Priyanka: Ayush is 8 1/2 years old and born via an emergency C-section, he was born weak and had low blood sugar and was in the hospital till he was 5 months. Had oxygen issues and feeding issues. He has a lot of anger and anxiety and has also has Autism. He loves bike riding with his special needs bike and being on a swing and being outside.
Q: Tell us about how you first became aware that Ayush had Sotos Syndrome and your diagnosis journey
Priyanka: It was tough early on as he also had meningitis in hospital, and he was NG fed. No one knew why and lots of diagnosis’ were thrown around. They told me there was a risk of delays due to being slightly premature. He cried a lot due to his low blood sugar issues. I was trying hard to feed him, and he was often vomiting. He was discharged from hospital when he was 5 month old and till then he was NG feed but after coming home within 20 days he was feeding through his mouth. He also had club foot and we had to put him in a tennis boot. The treatment for this was supposed to be 4 years, but we stopped early at 3, due to his growth – thankfully, there was no relapse. He was diagnosed at 2. It was hard for us as we don’t have any family in Australia, we are from India.
Q: What have been the biggest challenges for you as a mum of Ayush
Priyanka: We had no family around and he was medically complex – My husband and I were on our own. We were settling our life here in Australia and he was our first child. Then the ASD diagnosis too came – he is completely non-verbal. I have a 2-year-old and Ayush couldn’t manage being around him and got sick very easily. Ayush has a low immunity and got sick due to the baby. He is at school for 10 days and then gets sick and is home often. He goes to a specialist school. My husband’s parents came over and they didn’t know how to deal with Ayush so I travelled with them. The change was hard on him, so we kept the baby with family in India and came home and settled Ayush and focussed on that. My baby is still is in India and due to the COVID-19 I can only call him on the internet and can’t visit, which we never anticipated. When they allow visitors, my parents will bring him back.
Q: What have you enjoyed the most raising Ayush
Priyanka: I enjoy since the beginning feeding him! I realised I must focus on what I can do, which initially was produce more milk for him, rather than stressing out about what is going to happen to him. So, I did that, then I wanted to feed him purees – I was anxious about moving to solids and waited till he was ready. I didn’t rush and due to his reflux, I needed to tread carefully. In Indian diet we have a lot of soft options and healthy options to make him strong. He was a good sleeper too and slept nicely, unlike my second. I remember how much l enjoyed Ayush as a baby!
Q: Were there challenges with Ayush’s behaviour?
Priyanka: Yes, that is a big issue now, and he can hit his head a lot, which is challenging. He is extremely aggressive, so we are trying medication (risperidone). I worry if I put him in respite he won’t eat – he only eats my Indian food!
Q: Were there challenges with Ayush’s health?
Priyanka: Apart from his immune system, he also gets bloated and constipated easily. He has multiple holes in the heart, so we must see a cardiologist for an echo yearly. He needs glasses. No scoliosis at the moment.
Q: How has Ayush’s development progressed over the years?
Priyanka: He was sitting at 8.5-9 months, crawling at 10-11 months, and was holding and standing at 12 months but couldn’t walk. 15 months old he was holding one hand and walking. At just before 2 he started walking! We were still doing PT to avoid falls a long time after that. He is non-verbal. He is still not toilet trained; he is toilet timed but won’t tell us. He spends so long on the iPad all the time. He is level 3 Autism and ADHD is a question mark. He won’t sit down for activities. He struggles in OT, PT and ST and more than 40 minutes is too much for him, or he walks away. He can feed himself. When he was 4, I taught him to use a spoon.
Q: Do you have any advice for newly diagnosed parents?
Priyanka: The only advice I would say is don’t lose patience. Each child is a different child. It doesn’t matter if they have a disability, they are always your child! You love them the same. There is no prediction for life, things can happen to any child. Enjoy what you have and never lose hope! For Australian families know you are in the best place. In India, the understanding of disability is very low. I am grateful to be in Australia and thank god, who I still believe in. I am surrounded by good people and my husband was always with me helping and supporting and still supportive today. Enjoy every moment! Prey for my little one please.
Thank you, Priyanka, we really appreciate your time, sharing your perspective with us. It must be very hard being away from your youngest son and you are a very caring, dedicated mum I can see! No doubt many will learn a lot from reading this! We will pray for your youngest to be with you soon.
If anyone else would like to be interviewed for our Sotos Syndrome Association Blog or newsletter, please email us at firstname.lastname@example.org