Monday, December 12, 2011

Medical Update

As most of you know Keaton is healthy as a horse... he doesn't really ever get sick and when he does it is a cough for part of one day and that will be all.  However, at 18 months he had Bells Palsy and then again at age 3.  Last summer he got the mumps.... which he has been immunized for.  This prompted some concerns with our Doctor so we made an appointment with a Pediatric Infectious Disease and Immunologist.  While I know he is a good doctor he has NO bedside manner and does not know how to deal with parents.  He recommended a hearing test which we had done.  Just a bit of background here... Bells Palsy is when something happens to the facial nerve and you lose all control of your facial muscles.  While Keaton has only had this twice we have noticed a lot of weakness on one side or the other when he is tired or going through a growth spurt.  The 7th Cranial nerve is the nerve that controls facial muscles and it is located next to the hearing nerve.  When we did the hearing test (his hearing was great btw) they ran sound waves down the hearing nerve and then they recorded them as they bounced back through the 7th Cranial nerve.  They discovered that there is no response from the 7th Cranial nerve on the Right side.  This as of now, has not affected his hearing but we should have his hearing tested every three years or if there are any changes.  As we left the first appointment Keaton said "So basically, I am normal!"  Love the perspective of a child!

We went back into the Immunologist to discuss the test results and he felt that we should see a Pediatric Ear Nose and Throat specialist.  At that point I mentioned that my theory was that his Bells Palsy was stress related since in corresponded with the birth of Tiana and the birth of Camden.  He told us that there was no way that could be the case.  He also mentioned that maybe it could be that the nerves had been damaged sometime in birth or in utero but that we may never know.  He said that he may lose control of all facial muscles at some point.... but not to worry! (yeah right)  Within the next breath he would say that he didn't know enough to be able to tell us that everything would be alright!  Thanks doc that is just great on this mommy's nerves!  He told us that he would talk to the ENT and get back to us.

He called us back the next day to say that she wanted to see us and he reiterated that they don't know enough to tell us not to worry.  He also asked if he could have HIV..... just threw it out like now big deal!!!  I told him I didn't think so but I couldn't say for sure.  I couldn't imagine that his birth mother and/or him wouldn't have been tested at some point with the adoption... but I couldn't say for sure.  I asked why.... He told me... "Because it would explain everything... the mumps... the bells palsy... everything".  At that point I am a mess and say that yes we need to have the test done.  He told me that he wanted to rule out cancer at the same time!  HIV and CANCER in the same phone call!  You can imagine my surprise and panic!  Oh yeah but don't worry he says!  I mentioned too that even if he did lose all facial muscle that while this was VERY cosmetic that it wasn't fatal.  He told me "Not really, adults with no facial muscles have LOTS of problems!" my doctor would have said something like, you are right, he may have complications but it wouldn't be fatal.  Totally different connotations.
He did mention at this point that after talking to the ENT that they are not discounting my idea either... if the 7th Cranial Nerve was resting on the carotid artery then when he is stressed then it could inflame the nerve and show weakness.  Needless to say when this is said in the same couple minutes as HIV and Cancer it doesn't hold much weight.  So, we had a blood test done last Saturday.  Talk about a week of looking at your children in a different light, getting a few more hugs, being a little bit more patient and generally being a nervous wreck!  He was a trooper with the blood test and got to pick out two new Cars cars as a reward for doing so well.  We waited a VERY long week for results... the poor receptionist had to deal with me calling for results every day... at least once! 

Thursday we had his ENT appointment and on the way in got the results back... everything looked great!  So a week of stress for nothing... he even said... I hope you weren't worried about this!  Yeah... no bid deal dude just the possibility of my son having cancer or HIV... nope not worried at all!  We LOVED the ENT and the first thing she said is that she sure hoped we didn't stress about the tests too much because there wasn't a very high chance of either being the problem!  That would have been nice to know.  She said that she is most worried about his facial "weakness"... that the weakness is more worrisome than if he just had Bell's Palsy again.  As for no response on the right side the weird thing is that the weakness we see is on the left side!  She said that he may have a syndrome in which everything controls the opposite side but if that is the case it wasn't a big deal (unless he had to have brain surgery of course).  We are doing an MRI tomorrow to look for anything on the nerve aka a cyst or tumor... she did say though that even if there was something it would be easy to remove and he would be good as new.  While we don't want that road it sure is nice to have a doctor reassure you so you don't worry about it.  If the MRI is clear then it is probably just stress related and he will probably never have another problem and if he did to get him in to see her again.  She took the time to ask him if he had an questions and to explain to him that even when we talk about facial weakness that we see, his friends don't even notice.  LOVED THAT!  So MRI it is... he has to be put under which makes me nervous but I am also grateful for that because I know that he won't be scared.  They will have him under before they put in the iv which is also a relief.  He is a bit worried about it, he asked me if he was SURE he would be asleep... and what if he didn't fall asleep... what if the medicine didn't work and he was awake and everyone thought he was asleep. (wise little boy)  I assured him that I have had an MRI and while they are a little scary it really is just noisy and you can't move while it takes photos and that yes he would be asleep and we would make sure.  He can't eat after midnight so he ate lots tonight for a snack.  He told Daddy that he wouldn't like it but he was picking Olive Garden for lunch because he got to choose!!  I asked him if he was liking these appointments and he said "Well SO far... but I don't know about any more".  Jury is still out on future appointments but he is milking the benefits of Mommy and Daddy time and lots of special treats for the time being!!


Calysta said...

Wow! What an ordeal, Kyla!! So glad he's doing well. It's amazing what a difference a confident, knowledgeable and compassionate doctor makes. On all involved!

Thinking of you guys!!

Lenaya said...

Wow!!! I'm so sorry for all this worry. Our children are so precious! I hope you get good news today. Thinking of you both!