Tuesday, September 8, 2009

torticollis...

Hannah has been having trouble sleeping ever since we started her newest medication, Clonidine. The last several weeks she will wake up in the middle of the night, wide awake. She will be up for at least an hour. The irony? Most kids who take Clonidine take it to HELP THEM SLEEP!!! I really don't understand why it has the opposite affect on Hannah. Anybody have any insight on this??

Last night took the cake though.... I think she went to bed around 9 pm. I am not exaggerating at all, she did not go to sleep until 2 am!!!! She wasn't even drowsy. WIDE AWAKE!!! Which we all know meant, I was also AWAKE!!!

The worst part was when she woke up this morning. Her neck was causing terrible pain. She apparently slept on it wrong. For most of the day she held her head on her shoulder. Poor thing. I felt sooo bad for her. We did tylenol and motrin and heat all day. It was not getting any better. I decided if we were going to get any sleep tonight, we better see a doctor.

Off to the pediatrician. Thank God they could get us in. (on Dr. Pediatrician's dinner hour!! Thank you, thank you!! She diagnosed her with torticollis. The big muscle in her neck is in spasms. She said it will take 3-5 days to really feel better. ugh. She didn't give her a muscle relaxer, instead beefed up her motrin dose. (much more than I was giving her!)

SO, she is already asleep. YAY!!! She wasn't feeling much relief before she fell asleep. Hopefully that won't be the case in the morning....

1 comment:

Danielle said...

I was SO not created for children who don't sleep at night! We've had some doosies of drugs too...and same thing - should help him sleep! Oh well...what can ya do? Hire a nanny would be ideal!

Hopefully today is pain free and well slept!

...danielle

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....