We are thankful for so many things!!
1. Prayers and love of friends and family
2. Good Health!!
And
3. Chocolate Cake (says the girl)
Thank you to everyone who has prayed for us and encouraged us this year! God has blessed us richly through your love to our family!
I’ve heard that doctors are told that when they hear hoofbeats that they should look for horses instead of zebras. Look for the common, not the rare.
When a kid with a history of tethered cord starts falling and having trouble with weakness and incontinence, the obvious concern is that the cord is re-tethered. Re-tethering is pretty rare (~ 2% according to Ogiwara et al.), but we still couldn’t think horses when this rare possibility was stampeding towards us. We have just spent about a month testing everything that could be tested on the girl. Now we know that we are dealing with horses! We finally have some tentative answers, and there are no zebras involved…
The tentative answer is unexpected. The MRI of the spine showed some large adenoids (that had grown back after they were removed 2.5 years ago), large tonsils, and large lymph nodes. We visited the ENT yesterday and he said that the girls tonsils were almost as big as they get. He was concerned that she has sleep problems that could be on the verge of sleep apnea. She has lots of symptoms of sleep disordered breathing:
The most obvious is snoring…she sounds a lot like this:
The girl has never been one to sleep well, and we kept putting off the sleep studies that have been suggested over and over. She just has so many doctor visits, we didn’t want to subject her to any more. We never imagined that the problems sleeping could be serious…I mean, I’m seriously tired all the time, but for the girl, we didn’t realize it was that big of a problem.
It turns out that sleep apnea is a pretty serious problem. About 2% of the child population has sleep disordered breathing (American Academy of Otolaryngology), and this can lead to problems with behavior and learning, enuresis (bedwetting), slow growth, obesity, and cardiovascular issues (American Academy of Otolaryngology). Removing the tonsils and adenoids is the most common and effective treatment for sleep disordered breathing and obstructed sleep apnea.
We are optimistic that the tonsillectomy will help her sleep, and once she is actually resting she will be stronger and improve in all of the ways that she did immediately after the first surgery.
Sources:
American Academy of Otolaryngology. 2011. Fact Sheet: Pediatric sleep disordered breathing / obstructive sleep apnea. http://www.entnet.org/HealthInformation/Could-Child-Have-Sleep-Apnea.cfm. accessed 16 November 2012.
Ogiwara, H., A. Lyszczarz, T. Alden, R. Bowman, D. McCLone, and T. Tomita. 2011. Retethering of transected fatty filum terminales. Journal of Neurosurgery Pediatrics, 7:42-46.
We have had a very busy week. This picture sums up how we all feel. We still do not have answers about the symptoms , but some blood work ruled out some scary possibilities! There are more appointments next week, and hopefully we will get some better ideas about what’s going on. For now we are going to get a little rest!
The girl saw the neurosurgeon today. We had lots of questions when we arrived, and we left with more questions. Of course we were a bit concerned that the cord re-tethered. We did learn that the cord is fine! No indication whatsoever that the cord is the problem.
There were no explanations for the falls and incontinence. Because the girl is weaker on one side, the doctor ordered a brain MRI. We will do that next week. It’s without sedation…should be easy. So, this is step one in the plan.
Step two is to follow up with the urologist and stay on new medicine for the bladder.
Step three was unexpected.
The very thorough radiologist looked at everything and noted in the report that the girl has “enlarged lymph nodes particularly in the suprahyoid internal jugular chain….bilateral tonsillar enlargement and partially visualized adenoid hypertrophy.”
I looked up “hypertrophy” and it means enlarged. Hmmm…the girl had her adenoids removed 2 years ago. I guess they grew back?
So, step three is that the neurosurgeon will send the MRI to an ENT at Children’s so we can get an opinion about infection or other things that could cause the swelling. Infection can make a girl fatigue and fall…but probably doesn’t explain the incontinence.
That’s the plan! At least we have one!
Today was fall cleanup day! The girl and her dad “braked” the yard! 
Of course, she then proceeded to “unbreak” the yard!
