It has been a while since I took some time to update you on Elsa. The last time was back in October 2020 when I explained what was happening with Elsa – we’d been to an appointment in November 2019 with the view to having Elsa put on the Autism assessment waiting list. There we were made aware of a concern about her height and weight, and then a week later we were told that she had Selective Mutism.
We’d been sent on a Selective Mutism course in March 2020, just before the world went into lockdown. This was so useful and helped us learn how to help Elsa overcome her anxiety disorder. The weight/height and autism stuff was left as a wait-and-see. Especially with the world in lockdown and put on pause.
This post is predominantly for the height and weight side of things but I do need to give a quick nudge to Elsa’s autism journey first.
In November 2020, Elsa and I headed for her autism assessment. It was done as a BOSA (Brief Observation of Symptoms of Autism). I had my concerns about this and I’d highly recommend visiting the website I linked as it explains it further, but it’s basically a COVID-friendly way for parents to be observed with their child by a professional for the assessment. It didn’t work well for Elsa so we were put back on the waiting list for a full assessment with someone who specialises a bit more in Selective Mutism.
We welcomed the news that a Speech and Language Therapist who specialises in SM was going to conduct another BOSA assessment for Elsa in the school. I had better hopes for this assessment has Elsa would be in an environment that she is used to. But once again, the result wasn’t conclusive. It turns out that SM and ASC “symptoms” are extremely similar and Elsa was displaying both.
So she’s been popped back on the list to have a full ADOS (Autism Diagnostic Observation Schedule) assessment at some point. With the pandemic still in full swing, it’ll most likely be at the end of the year or early next year if we are lucky. I am grateful that we haven’t been forgotten and that they are not just simply saying no.
Anyway… onto the actual main reason for this blog post… If you are still here?
Elsa was referred for various tests last year following the initial pediatric appointment. The first was to have blood tests done followed by a bone x-ray to check on her bone age. These are things that Freya had when she was much younger and all came back as normal. The reason the doctors sent her for these tests was to cover all grounds before referring her for growth hormone testing.
It took quite a while to get the results back because of the doctors being assigned elsewhere. Her blood work all came back to be normal but the bone age x-ray wasn’t what I expected. At nearly 6 years of age, Elsa’s bones were the age of a 3-year-old. Almost half her actual age. With the bone age being a little concerning, she was put forward for a Glucagon Test.
This happened at the end of June, just a few weeks ago.
It’s a weird feeling going to do something you’ve already done before. Freya had this exact test done about eight years ago. Freya was used to being prodded and poked, she was born prematurely and at that point had been through many hospital visits and tests. Elsa is different. She’s our littlest baby.
A glucagon test helps to find out how well the pituitary gland is working. The pituitary gland, at the base of the brain, produces growth hormones. This is a ‘chemical signal’ which stimulates normal body growth and development. Growth hormone is only released when blood sugar levels are relatively low.
This meant that Elsa needed to fast from midnight and wasn’t allowed to eat or drink until the test was complete. The test takes about four hours in total but that doesn’t factor in the time spent prepping and the recovery time afterward which I’ll explain.
We’d been advised to bring some activities and distractions for the long day in the hospital. I’d put together a bag of things to do for Elsa. We also bought her a few new bits too so that they were exciting. Of course, I had to pack the iPad which I hoped would be the perfect tool for keeping us all distracted. Although Elsa couldn’t eat until after the test was finished, I was told to pack a lunchbox full of her favourite foods for after. I also popped in some PJs for her too.
Covid rules meant that only one parent could attend with Elsa. I was the chosen one. Hubby dropped us off with enough time for him to get Eva to school on his way home. I was a little worried about attending this hospital visit because every time I enter this particular hospital, I end up getting a migraine most likely because of the lighting.
We arrived early for our appointment. We are always early to everything! Elsa was so scared. We’d spent a lot of time preparing her for what was going to happen and what to expect. Her nerves were clearly kicking in and she went all quiet whilst we waited to be called through to the ward.
We had been assigned one nurse for the day, although she had a student nurse helping her. This was really brilliant for Elsa as it meant she could warm up to just one person and not a huge team. Our lovely nurse introduced herself and took us through to the ward.
The ward was colourful and had Disney characters painted on the walls. It was as welcoming as you would hope for in a children’s ward. Of course, seeing a giant Mickey on the wall didn’t make Elsa smile as she was overwhelmed with fear. Elsa was shown to her bed for the day – bed five with Nemo on the sign. We were told to get comfy whilst the nurse sorted out all the paperwork I needed to fill in.
First things first, it was time to apply the magic numbing cream to Elsa’s arms and hands. Four places gave the doctor a few options for a cannula to be fitted. She hates people touching her or getting too close, so this was a little stressful to start with. Elsa has had numbing cream applied for her blood tests but it was all a bit worrying for her.
There was a little bit of time to wait after the numbing cream was applied. About half an hour. Then we were led into a separate room to have the cannula fitted.
Elsa was already tearful before they’d even began. We watched nervously as they prepared all the equipment for a cannula. I had to hold her so that her legs wrapped around my body and her arm stuck out to the side. A koala hug. She was so incredibly brave but it was so traumatic! I haven’t heard her scream like that in a very long time – maybe ever! She was so hysterical shouting “I want my Mummy!” even though I was the one holding her.
Elsa doesn’t have very good veins, as in they are hard to do blood tests on and even harder to do a cannula. We had trouble when she needed IV antibiotics as a baby. I think they struggled to get the vein pumping which made it take a slightly longer time than expected. With all the crying Elsa was also getting a bit sweaty which prevented the sticky plaster from attaching securely onto her arm so she needed to have several and a splint with a bandage to keep her arm straight.
After the cannula was in and Elsa had calmed down just a teeny bit, she was allowed to pick a treat from the “I’ve been brave” box. She chose a bag of playdoh which was going to be the perfect activity for the hospital day.
An initial blood test was taken but stress can cause your blood sugar levels to rise, so they had to give Elsa some time to calm down before the next part of the testing process could begin. The glucagon injection. The glucagon test is a stimulant. The blood tests will help to see how Elsa’s body reacts and processes it over the period of time during the tests.
This bit was almost as traumatic as the cannula being fitted. There was no numbing cream preparation. This injection had to go into a thigh or buttock, we swapped Elsa’s leggings for her shorts pyjamas to make it easier for them to access her leg. As expected Elsa screamed! It was horrible.
Elsa doesn’t cry often but when she does, it takes her a huge amount of time to calm back down. So we had a lot of sniffles, the nurse left us to calm down and would return in half an hour for the first blood test. The hospital gave Elsa one more brave toy, after her glucagon injection – a little whale toy that Elsa called Wendy after her nurse.
Having the cannula meant the blood tests were simple to do. The blood tests were done every half an hour. The first one caused Elsa a bit of stress because she didn’t know what was happening, but after the fourth hour of them, she barely batted an eyelid.
The little half an hour between blood tests went much quicker for me than I expected. Poor little Elsa found it quite hard though, her tummy was rumbling and she was meant to be resting as much as she could. Our girl is the biggest of wrigglers so this was tough! I distracted her with books, playdoh games, FaceTime with Daddy and Grandparents, drawing, and a Disney movie of course.
At one point, probably about halfway into the test, Elsa got a little lethargic, sweaty and shaky. This is a normal reaction to her blood sugar levels dropping and rising. After about five minutes she felt much better. Elsa was allowed to sip water regularly during our hospital visit.
After six hours of being in the hospital, the testing was over but we still had to stay for a while after. Elsa was able to have her packed lunch. Then the nurse needed to keep an eye on how Elsa reacted to having some food again. Obviously, after not eating for over 19 hours, her body could have experienced hyperglycemia.
It’s funny how when you don’t eat, you feel terribly hungry but can’t eat much. Elsa managed to finish her sandwich, a frube, her Pom bears, and a smoothie. Normally she’d eat so much more!
After about an hour Elsa had one more blood test and sugar level check before getting her cannula removed. This was another horrible part of the day. It didn’t help that her screams attracted more nurses that were just trying to help, coming into blow bubbles for her and tell her it was all ok. It was all a bit of a crazy ending to the hospital visit.
Hubby came to collect us from the hospital and within moments, Elsa was fast asleep in the car.
I am so incredibly proud of Elsa. Her bravery was admirable. I wish we didn’t have to put her through all of this but it’s better to know if something could be wrong with her body that might be able to be fixed. We won’t get the results for about 8 weeks so I feel a bit nervous. We will take everything as it comes.
Great Ormond Street Hospital has a brilliant page to describe everything about the Glucagon Test in further detail.