Early Years, Lifestyle, Medication / Medical Aides

Up, Up and Away

Up up and away

It’s been 2 months since we started Elsie on growth hormones and so far we are super happy about it! She’s currently 78.9cm (2.58 feet) tall and weighs 8.9kg (19.62 pounds)and is now just below the 3rd percentile for both height and weight. It’s so exciting to see her pant legs start to get a little too short and retire those pair of shoes she’s been wearing for almost a year. Her waist is still quite small so it’s hard to keep pants up on her but we’re still trying to fatten her up. Our doctor had mentioned that we might see an increase in her appetite after starting the growth hormones but I would say it’s only slightly increased so far. However at this point any increase is good!

The one down side to her growing is that now all of her medications have increased. While it’s sad to give her the higher doses, at least it means she’s finally catching up with the all the other toddlers. We’ve also had to add two more meds to her daily schedule, an antibiotic and a laxative. In Elsie’s 23 months of life she has already had 4 UTI’s andwhile our doctor told us this is not usually typical with cystinosis there have been quite a few parents online that stated this was common for their children when they were young. So to avoid further infections Elsie has been put on a low daily dose of antibiotic. Daveand I aren’t very keen on this and it seems that for others the UTI’s seemed to cease after potty training so we may try to do this sooner than we’d planned. On the plus side Elsie does have a potty and likes to use it occasionally! The laxative is fairly self explanatory, it’s to help keep her regular because she seems to go through waves of going everyday and then getting blocked up for a week or two. Our doctor also thinks there may be a correlation between her being constipated and getting so many UTI’s. I can tell you since starting the laxative potty training has become more attractive to us!

Below is what her medication schedule now looks like:

2am – Cystagon 125mg

8am – Cystagon 125mg

With breakfast
o Potassium Citrate 2.5ml
o Sodium Phosphate 1ml
o Lactulose (laxative) 5ml
o Cysteamine Eye Drops 1 drop per eye

2pm – Cystagon 150mg

With lunch
o Potassium Citrate 2.5ml
o Cysteamine Eye Drops 1 drop per eye

6:30 pm – Omeprazole (proton pump inhibitor) 3ml

With dinner
o Potassium Citrate 2.5ml
o Sodium Phosphate 1ml

At bedtime
o Somatropin (growth hormone) 0.7mg
o Novo-Trimel (antibiotic) 1.5ml
o Cysteamine Eye Drops 1 drop per eye

8pm – Cystagon 150mg

She is still taking all of her medications really well and actually tolerates the nightly injection of growth hormones better than her eye drops. I posted a video on Facebook of Elsie getting her injection because I thought it was amazing how quickly she recovered from it and was so proud of her. Reactions to the video were mixed though. Most people who were not familiar with cystinosis or seeing a small child get a shot found the video to be a little upsetting but those of us that have been exposed to it, for one unfortunate reason or another, thought it was really great how quickly she rebounded. Everyday I witness the amazing strength and courage that Elsie has and am constantly reminded that I should never underestimate her. Her happy go lucky attitude has brought so much love and positivity into our lives and I can’t imagine a world without her.

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