Pulmonary November 4 visit

Last Thursday was my turn to take Haven in to her doctor appt. These things always run about 2 - 2 1/2 hours....plus drive makes it a full day! We left at 9:30am and got back around 2pm!

We met with the student doctor first - they always do this at Hopkins. I understand the need to teach but I hate repeating every aspect of this horrible syndrome! However, this time was different - may be it's because I've walked out of doctor's offices before because they didn't even take a minute to look at her file...but this student knew about 75% of ROHHAD and all of Haven's symptoms. I was very impressed!

After getting a thorough check up we met with her regular Pulmonary doctor and discussed her sleep walking habits and a few new issues that have popped up. Well not that sleep walking for her is new (she's been doing it for almost 4 years) but it is no longer at 11pm start. It starts between 1 - 4 am now and sometimes last for over an hour at a time. Even as I write this - last night (november 8th) she was going ALL NIGHT! There was a break here and there but it was pretty much non-stop. Even when I left for work at 6:15 this morning she was still going.

This is where the doctor is concerned on the sleep walking. Normal sleep walking should happen around 3 or so hours after falling asleep. With Haven's starting 5 hours after or not even starting until 5 or 6 am it raises some concerns. His main concern is seizure activity. He is concerned that it is possible that there is some seizure activity happening in her sleep causing the sleep walking to occur at these times. He made sure we have her emergency seizure medicines and what we need to do. But Haven hasn't had a seizure since 2007.

Then there is a new development in her breathing while sleeping......the past 3 months she has begin to snore. It started off small...random snores. I tried making the house colder, hotter, sleeping sitting up and changing her pillow. Now she is snoring every night and practically all night long. Even when taking naps on the couch she is snoring.

So with both of these issues happening around the same time the doctor is pushing her sleep study up to get us in quicker. There is usually a 3 month waiting period. He will be involving Neurology on this sleep study and adding an extended EEG to the test. So it will take a bit longer to get the results back as Neurology will need to read their section. If she is showing seizure activity she will start seeing a Neurologist regularly....but let's just hope that's not the case.

Haven's last sleep study showed tremendous improvement in her CO2 and sleep habits. She had dropped from a CO2 level of 50 to a 45 and wasn't really going crazy in her sleep. So once this is scheduled and done I will feel much better.

Next up in regards to doctors for Haven is Oncology on November 15th - she is due for another round of IVIG and then hopefully a quiet holiday!