Off The Scale

This last couple of months, Thurston has become an expert in driving me up the flipping wall. I don’t think it’s helping that we are in the throes of the Summer Holidays and so he is missing school and being permanently busy. It’s very difficult to keep up that kind of stimulation at home with other children to consider. Although I am sympathetic, he has been an absolute pain in the neck. (A gorgeous and funny pain in the neck of course!)


We have noticed for a while now that Thurston cannot stand the sound of silence and fills the gaps with humming, reciting episodes of sitcoms, singing or worst of all, screaming. It really really grates on me and I find it incredibly frustrating. If I want him to answer me in the midst of this, I have to ask him if he can hear me before I ask a question, otherwise he just won’t snap out of it. Alex took him for his check-up with the Paediatrician recently and she picked up on it immediately. We had no idea that it could even be a symptom of something and had just attributed it to him being annoying!! She said that it is Auditory Seeking Behaviour and is a sensory aspect of Autism Spectrum Disorder. It is a bit like a comfort blanket for your ears! If he is feeling nervous or stressed, then making noise “hugs” him and makes him feel safer. She gave us some tips on how to help him cope with this. So far, nothing has had much effect but at least I can empathise a little more!


The paediatrician completely disagreed with the School Nurse that we had seen about his lack of toilet training and referred him to the Bladder & Bowel Team which was a relief as we weren’t happy that the School Nurse kept putting it off, especially since there is a 10 month waiting list!!

The thing that really concerns me at the moment is Thurston’s weight and energy levels. We saw the Dietitian about a month ago and she measured Thurston as being on the 0.4th percentile on the growth charts. He is often on that line so I was disappointed but not massively surprised. However, when the Paediatrician measured him, he weighed 15.9kg which at 6 years old means he doesn’t even make it onto the chart. This meant that he had lost weight between these appointments. I can’t help but feel really terrible about this and I actually feel somewhat of a failure. As soon as you have a baby, so much emphasis is put on the baby gaining weight and thriving and mums are congratulated on their chunky babies. It’s completely understandable, but when you have a baby or child who doesn’t gain weight, or worse still, loses weight, it is very disheartening. All I want to do is feed him up, but it is seemingly an impossible task.


Due to a very abnormal urine result a couple of years ago combined with his single palmar crease, we were referred to a Metabolic specialist by our Geneticist. We went to the Evelina Hospital in London for further testing as the doctors suspected Barth’s Syndrome. Luckily, that came back negative, however, the doctor still suspected a Metabolic Disorder but without any new symptoms, he couldn’t test for extra syndromes. Since then, we have muddled along with the Dietitian and Thurston’s diet has remained being predominantly made up of a specialist high-calorie formula. Our usual Dietitian left and the replacement we recently saw was verging on ridiculous. Considering his dairy allergy, it seemed unbelievable that she repeatedly suggested cheese and ice cream to fortify his calorie intake. Aside from that, she had no suggestions and simply told us to book in for an appointment in 6 months.


In the last 2 months, he has eaten approximately 3-4 meals PER WEEK! Even then, these are by no means large or balanced meals, and I am permanently wracked with guilt. My mum has taken to dropping by emergency McDonalds Happy Meals as they are one of the few calorie-dense meals he will try to eat. He doesn’t touch his breakfast. He moves his lunch around his plate but when I piece it back together, there are no bites missing. He has given up on snacks. He has a few nibbles of dinner. And that’s that. In the past, when he has been through phases like this, he has upped his formula intake. This time, he seems to have even gone off of that, and manages 2 bottles a day at most.

Last week, he had a lot of mouth ulcers and his gums were bleeding so he was very sore. We were stuck in a vicious cycle because the ulcers are obviously caused by the lack of nutrition, but Thurston won’t eat if his mouth is sore. The last time this happened, the dentist prescribed a mouthwash which would “sting a lot but cure the ulcers”, but I just can’t stand to cause him any more pain!! This week, his mouth is a little better but he is very fatigued and easily upset.


Luckily for us, we actually have another appointment at the Evelina in London this week. This time it is with a Behavioural Feeding Clinic in the Neurosciences department. It’s such good timing because if we didn’t have that to focus on and aim towards, I think I would be tearing my hair out. I will absolutely never make an issue out of food or let him see how stressed I am. I will never force food on him, or even make him join us at the table. The food is always there for him whenever he wants it, but he has to want it. When he is tucked up at night though, it does weigh heavy on my mind that he must be hungry and how I wish I could make him see the joy in food like I do! I love him xx





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