Our recent visit to the Royal Children's Hospital in Brisbane, and their approach of breaking down the issues into more manageable size issues, has Harri well on the road to recovery.
While Harri was getting pain from the recent muscular surgery, possibly from the nerves at the back of his knees being stretched because his legs now straighten completely. The only way to tell for sure would be a nerve conduction test. But we have be reassured that the nerve pain will subside over time.
Complicating the pain in his legs, Harri was getting abdominal pain and was also having trouble with his breathing ( laryngo spasms ). What we were not aware of was that until now, when ever we were in the hospital, Harri was receiving 1/2 the dose of Omeprazol. A drug that had been prescribed to reduce the acidity of his stomach. This is because Harri suffers from refluxing and occasional blood in his stomach. At home we use a more user friendly form called Nexium, but this is EsOmeprazol, and twice as strong, but the Mater did not pick up on this, the Royal did. As Harri is almost adult size and weight they also took the measure to give an adult dose, and raised the Omeprazol to 4 times what he was given at the Mater.
We were also informed at the Royal of the strong link between reflux and laryngo spasms. with this in mind they also decided to remove all Neurofen from Harri's medicine list, as this can increase the acidity of the stomach. Since implementing these measures alone, Harri has had a great reduction in the amount of breathing difficulties.
A review of his diet also noted the high fibre formula the Mater had prescribed, had been making him blotted and adding to his discomfort. A new formula for 1 week has seen a significant decrease in the amount of blotting Harri is suffering.
Although Harri is still getting some break through pain from the nerves in his legs and some abdominal pain from gastritis, these will both settle down over the next couple of weeks. Harri is much more comfortable than he has been in for weeks.