Two weeks after surgery Alex started back on the growth hormone (GH) injections at the reduced dose of .3 of a ml daily, since he seemed to be sensitive to GH the endocrine team decided that it would be better to have him on this reduced dose for 2 weeks rather than just one. He was, and is, very good with the injections but as the first week progressed we noticed he was starting to get less and less willing to eat.
Those of you who have been following along with us for a while will recall that after his radiation therapy ended and he came off the steroids, his appetite did a nosedive to the point where he required a nasogastric tube. We persevered with him and gradually he did get better, to the point where recently he was eating what was for dinner quite happily and was accepting of a wide variety of meals.
You’ll note the past tense in that sentence.
On Tuesday the dose went back up to .55 of a ml daily (in relative terms still a very small dose) and he became even more resistant to eating, until on Friday evening he started vomiting. Not something new for him so we kept an eye on him but didn’t panic, but decided that a call to endocrine on Monday was warranted. Monday came and Alex headed to school, I dropped Jenny off to her school and then rang the lovely Nurse Kate in the endocrine department. She was a bit concerned and said she would consult with Dr Jan and get back to me. Before she did however I got a phone call from Alex’s school – he had been vomiting, and there was blood in the bowl.
Never a good phone call to get really.
Alex’s school is amazing and wonderful but it is for me, even on a good run, an hour’s drive away. So I do what we all do when faced with a crisis – I called my mum!
She was on her way to a carer’s meeting and was able to divert to SASVI (only a 20 minute drive for her), collect Alex and take him to her carer’s meeting. This was just off Fullarton road, so it was quicker and closer for me to reach and we were on our way to WCH much faster.
Thanks Mum, you’re awesome xx.
I had called Kate back and let her know we were coming in, so with Alex on board I headed for the women’s and children’s hospital. again.
The little heroes foundation were amazing and gave us the use of one of their carparks, so I didn’t have the added stress of having to move the car every few hours, and we made our way into the emergency department.
Because of his history, and complicated present, Alex gets the VIP treatment when we have to go into ED, so after a few questions at the front desk we were transferred into a booth out the back.
Unfortunately because of his complicated present, none of the doctors were sure what exactly was causing the continual vomiting. The three main suspects were the GH, his left ear, as it was infected again, or his shunt malfunctioning.
The shunt was easily ruled out – when pressed it felt normal, not tight or hard, so it was working properly. But it was impossible to tell which of the other two was to blame, or even if it was one of the other two – a stomach bug of some sort could be causing all the havoc.
The doctor thought it was unlikely that his ear was to blame – it was starting to clear up thanks to some eardrops – but then also that it was extremely unlikely for GH to cause this reaction.
When you start taking growth hormone usually two things happen fairly quickly, your energy levels increase and so does your appetite. For Alex it seems to have caused – along with the vomiting – more lethargy and a sharp decrease in appetite. No one is sure quite why this should be so, but because he’s got so much going on he’s a complex case – what the hospital doctors call ‘a unique individual’.
There’s two things which commonly cause vomiting while taking GH: 1) the body getting used to the drug, in which case you back off on the dose and then gradually bring it back up, which we have done, or 2) increased inter-cranial pressure, which Alex can’t get thanks to his VP shunt.
Alex managed to keep down a cup of milk while we were there, so, as no one seemed to have a definite answer, we ended up getting some ondansetron from the hospital pharmacy to control the nausea and stop the vomiting and went home.
We have (with consultation from endocrine) stayed at the higher dose and while the ondansetron has helped control the vomiting Alex is still not back to eating properly. He’ll only eat melty cheese or sausage rolls, when two weeks before starting GH he was doing really well and eating most things at a reasonable speed. It seems easy to point at the GH and say it’s all the drug’s fault, but GH simply isn’t meant to have this effect, and as he’s severely GH deficient he really needs to take it regardless. So on we will go.
In better news, we had our follow up appointment with Dr Sonja, she was really happy with how he’s healing, but, in consultation with her colleagues, has decided that the second part of the operation needs to wait a few extra weeks. Alex had ear infections for a very long time so everything in his middle ear was inflamed beyond what was usual. It was decided that a few extra weeks of healing would, in the end, produce a better result, so we have a tentative date now for January 23rd. The really good news is that Dr Sonja did all the prep work during the first operation, so the installation of the implant should only take her 30 minutes or so!
So we will take the good, the vomiting has stopped (touch wood), he is starting to be willing to eat a little again, we have a date for surgery, and in the best news of all, we have a new niece! My sister welcomed her second baby, the adorable Hazel Elizabeth.
