Sleep, sleep, where art thou?

Yesterday was our follow up appointment at Sick Kids for the sleep study that Faith had.

We have really struggled with this issue for the past 3.5 years, and it is time that we figure something out.

With 5 kids, we have done our fair share of sleep training.  We have had sleep issues with a few of them and have been able to overcome them.

With Faith, things are always a little more complicated.  We are learning this the hard way.

Faiths sleep has always been broken, she will fall asleep around 8:30 (with the help of melatonin) and then will wake every 3-4 hours after that.  For the whole night. 

She will "knead" us all night, leaving us with bruises in the morning, and tired. 

We left here at noon, and took the subway.  Faith was so excited to see the subway and sat in a seat watching out the window. 

We got to the appointment 10 minutes early, and went to the waiting room.  We were there almost an hour, and were finally called back.  We have learned that hospitals have their own timing system, so it wasn't a big deal.  When the nurse practitioner came in, she told us that the developmental pediatrician we were supposed to be meeting with, was going to be leaving at 4, and wasn't going to be able to see us.

Talk about frustrating.  All that way, time off work, I didn't take a shift...all to NOT see the doctor we came to see.  I got upset and cried...because it is a long day...and for nothing.  Plus, I was excited to finally get some answers to help us work through these sleep issues.  The nurse felt really bad, and tried to make it better.  She talked about what we have tried, and then asked us a bunch of questions, that were related to the family.

She also said that part of their multi-disciplinary team was a neurologist who wrote a book about sleep issues and how to deal with them.  She wondered if we would like to meet with her.  I figured, instead of writing the whole trip off, we may as well meet with someone who knows what they are talking about. 

We waited another half hour.  It was now 4:30 (it was originally a 2:30 appointment).  She came in and asked how far back Faith was delayed.  I said in October she was assessed at 1 year 10 months.  She has come a long way since then, but is still significantly delayed.

She then told us that people with developmental delays, almost always, have sleep issues.  Then to add epilepsy to the delay makes it even worse.  Faith's brain probably spikes and drops all night long, as is seen in other patients with epilepsy, and while they are not seizures, it inhibits her ability to sleep.  So basically, we are screwed...

Then she said, that Faiths cognition seemed good enough, that she could very well grasp the sleep training, and we should try the method she suggested.

So, here is what we are preparing to do. 

Faith's bedroom has to become like a crib.  She is too old for a crib, so this is the next best thing.  Her entire room will need to be stripped.  No furniture, no toys, no stimulation.  Just a mattress on the floor.  We need to put a peep hole in the door, so we can watch her and check on her. 

Then, we put her to bed and basically do the Ferber method...again.  I told them we had done that before and I felt like we needed a priest because she sounded possessed. But, this is the method. 

We let her cry for 2 minutes.  Then we go in and say "it's bedtime" and wait 4 minutes, then 6 minutes after that.  We do that until she falls asleep, every 6 minutes.  The next night we do 4 minutes, then 6 minutes, then 8 minutes.  On and on...

If this doesn't work after 2-3 weeks, then we can try sleeping in her room with her.  For the whole night.  To show her that this is her bed, and this is where she should sleep.  Then back to the method again.

If it still doesn't work, then we can give her clonazapam.  It is a mild medication which will help her to sleep, but it won't help to train her.  That is the last resort.

If none of this works, then she wants us to call her in 6 months and we will meet with her again. 

We are also getting a referral to a pediatrician who works in the developmental area, in our city.

I am not sure if I am thrilled with this appointment...or still upset that we showed up and were brushed off.

But, we have some ideas and we will see how it goes.