Past weeks have been terrible and we need to find a solution

Elliot loses his temper far too many times a day. The most critical point is during the afternoon and almost every day he gets a big outburst when we get him from school. I don’t know how much of it that is connected to Elliot’s disease but I suppose the disease is a key factor.

Facts

• Elliot is tired after a day in school
• It’s getting colder and darker. In Sweden the temperature right now is about 3-5 degrees Celsius and it is dark when we wake up and it is getting darker every day.
• Elliot’s dose of Revatio has been doubled since our last visit at the PH-doctor.

If you have experiences that you would like to share or suggestions of how we can improve our situation please comment.  


Update: Elliot has been complaining about headace the past week and one of many potential side effects of Revatio is headace. Elliot today said that the headace easily gets him in a bad mood. 

Hospital visit

Elliot has been going to school for about 1 month now and he really likes it. Compared to pre school the school days are more intensive and when it is time to go home he often is tired. The school have bought a wagon (the type you have behind a bicycle) that Elliot can use if he gets tired when they are going for longer excursions.

Today we have been at the hospital for a routine check. The 6-minutes walking test was okey and Elliot did walk 411 metres but he was tired afterwards. The examination by the doctor did not show any changes compared to the recent visits. It was decided that the Revatio dose should be increased.

I told the doctor and the PH-nurse about my involvment in the Swedish patient association and did handover information material. I also mentioned the result presented of Novartis about the cancer drug Imatinib at ERS in Amsterdam 26th of September. The drug have proven positive on PH patients regarding the 6 minutes walking test.