We had our follow up with Dr Sleep/Dr. Neuro... This appointment was with her Dr. Sleep "hat" on. She went over the reports from her stay in the hospital a couple weeks ago.
She said "has anyone shown you these reports?"
Me: Ummm. No.
Doc: But the home healthcare company came out and changed the settings on her BI PAP machine, right?"
Me: Ummm. No.
Doc: No one has told you anything then?
Me: Ummm.... (you got it...) No.
She looked rather puzzled and said well, let's go over them then. "yes, let's do!"
Her sleep study proved to be the most telling. (I found this interesting because she just had a sleep study last October and didn't need any changes to her BI PAP machine). She is still having apnea and really high CO2 levels. The respiratory therapist had to increase her settings so it was set appropriate for her needs. For the hours that she was sleeping, she had 114 arousals; 17 per hour... GOOD GRIEF!!! Apparently what is happening is that she isn't getting enough oxygen (to much CO2) and her body wakes her up just enough to take a deep breath and get some more oxygen. 114 times worth!!! So she never gets in a really good sleep... therefore, very tired the next day.
The MSLT (daytime study) was negative for narcolepsy. Out of the 5 naps, the person with narcolepsy has to get into the REM sleep cycle at least 2 of them. And, the average time they fall asleep must be less than 8 minutes. Hannah did fall asleep 4 out of 5 naps, but never got into REM. Her average time of falling asleep was 14 minutes.
Dr. Sleep is really hoping that increasing her settings on her BI PAP machine at home will improve her quality of sleep enough that she won't be so tired. She wants to give it a couple of weeks and see if we notice changes. If we don't, we will probably be looking at adding a medicine to her regiment. Ugh. She stressed the importance of Hannah wearing her mask every night. Actually her words... She really HAS to wear it every night. This did not go over well with Hannah. She doesn't like it. Never has... Sometimes it's a battle I choose not to fight. Make that...CHOSE not to fight. She has no choice in the matter now. She WILL wear it every night (maybe with just a little bribery... just a little). We go to home healthcare this Friday to get the settings changed as well as try on new masks. Apparently there are new and wonderful ones since we got her style three years ago. It would be nice if someone would just make a PINK one... Is that too much to ask??? Make it just a little...girlie??? It would make my life sooo much easier.
For whatever reason, the EEG report was nowhere to be found. She said she had read it, but now it was lost somewhere in the system. She will call me and/or send it to me when they get ahold of it. Kinda weird, but okay...
Meanwhile though, she thinks, (here comes why I think it's great to have a sleep doc and neurologist all in one....) there is a possibility that her high CO2 levels and seizures could be connected. She said there are some studies that are linking the two.... hmmm. This could be very exciting!!! High CO2....sleep deprivation.... increase in seiuzres..... I think it has validity...How bout you???
Wednesday, July 14, 2010
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Beautiful Hannah...
How this journey started....
Hannah was born prematurely at 34 weeks gestation. She was a relatively healthy preemie; initially having difficulty maintaining body temperature and needing to grow. She weighed 4 pounds 9 ounces at birth. When she was four months old she began to drool, non stop. We were told the first year she was "teething." At 18 months old, we really started searching for reasons of why her shirt was always soaking wet. We saw various specialists who always sent us to another specialist, saying "everything looks okay." She spent years in oral motor/feeding therapy to help her not to drool. It wasn't until she was four years old and in preschool that we started to get some answers. Her preschool teacher commented one day that she wasn't reponding when her name was called. I took this information to her pediatrician who then orderd an EEG, "just to rule it out." Much to our shock and amazement, the results showed, she was having seizures. That is the day our journey REALLY began. Once she began taking seizure medication the drooling almost stopped completely. (She will still drool to this day when she is having seizure activity). Since then, it has been a roller coaster; countless medications and medication changes. She has never really reponded well to any medication.
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
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