Harriet had been referred to the Occupational therapy team at the Derby Royal Hospital for hand splints, due the severe problems she was experiencing with both her hands over a number of years.
It seemed that Harriet`s care had not been as smooth as it could have been and without the intervention of a surgeon from the Queen`s Medical Hospital in Nottingham, she would have most likely been left to get alot worse.
The referral letter arrived a few months later and we took Harriet to see the team, at the Derby Royal Hospital. Harriet was measured up for her splints and these were then made while we waited. The team made a great job and we were pleased that Harriet now had something to keep her hands growing in a controlled manor. The splints would also stretch her muscles and keep them from getting too tight.
The Surgeon had also highlighted that Harriet`s ankles were flexing and in fact made one of them click as though it was coming out of its joint. Again we were referred to the Derby Royal Hospital, where we went to see the orthotics team, who looked after ankles joints.
This time Harriet had both her feet cast which took about 30 minutes, she was then cleaned up and we were told the foot support splints would be ready in about 3 weeks. We were given a choice of patterns to select for the splints and that took Harriet home.
After a few weeks had passed, we received a phone call from the orthotics team, to say the foot splints were ready and that Harriet would need to come back into the orthotics department for a fitting.
Harriet had never had foot or ankle supports and we were both pleased when we saw how well they supported her ankles. The orthotics lady told us that Harriet would need to get some shoes, which would help the splints to blend in and at the same time would be beneficial to Harriet when she went in her standing frame.
Today we went back to see Occupational therapy team about the hand splints, they had a look at Harriet and decided the splints needed to be adjusted as they were too wide. The splints were made smaller and refitted to Harriet`s hands.
We were told that Harriet needed to wear the hand splints for at least 12 hours a day, this being for a few hours in the morning, a break and then throughout the night. The team highlighted that Harriet would not need Botulinium injections into her hands, if we kept to a strict regime.
When most people think of Botulinium injections, they think of cosmetic surgery, or injections into the face to stop wrinkles and maintain a person’s looks. But Botulinium injections are also given to children, who have problems with tone; the injections relax the muscles and enable the child to have better movement and also less pain in their muscles. There are risks associated with the Botulinium injection, if too much is given, this can lead to respiratory problems and even death, so the medical professionals are extremely cautions and tend to administer low levels of Botulinium in high risk patients.
Harriet currently has Botulinium injections into her arms and legs, as her tone is so tight that it causes her extreme pain, even though she is taking medication to help control the tone and pain associated with her condition. The problem with Botulinium injections is that they are extremely painful, last time Harriet had a Botulinium injection, and she passed out, as the pain was simply too much for her to take. Alot of children are actually put to sleep, before they are given Botulinium injections, but in Harriet`s case this would simply be too dangerous and medical professionals are not prepared to take the risk.
Now that Harriet has her splints, we hope that we can avoid Botulinium injections into her thumbs and just keep the injections to her arms and legs.
Jason and Lesley