Tuesday, January 6, 2015

Noah's Hospital Visit

I took three differnet snacks for the appointment and he was quiet and busy eating all the goodies.  He let the nurse listen to his heart and check his hight and weight. 


I took Noah today to Seattle Children's Hospital to meet with the anesthesiologist who will be administering anesthesia to Noah when he gets MRI and EGG test next month.  Mike and I have been contemplating, well mostly me, about having Noah go through MRI to rule out any physical reasons why he has severe developmental delays.  Based on my research online through the chromosome 3 deletion group I belong to and the general study papers regarding Noah's symptoms, there were several possible conditions he may have. 

EGG is a test for seizures.  Many children with chromosome 3 deletions have seizures, in fact, it is the most common physical symptoms of the deletion.  I researched about it online and spoke to the neurologist and decided that it is worthwhile checking if he is having seizures or not.  What I am referring to is absence seizures.  They are not the typical epilepsy we are familiar with but instead it involves the patient just staring at space without twitching.  Noah does get into his own world daily and there are many times when he is staring at the wall and would not respond when I call his name.  However, that is also a symptoms of autism, so it is hard to tell.  The EGG test should reveal if he has a seizure tendency and it will be good to know for peace of mind. 

As for the MRI,  it was optional but was suggested by the neurologist since he will be asleep anyway.  I talked about some of the concerns I have and she said they can address them by doing a MRI.  I don't want this post to sound like a medical paper but one is agnesis of corpus callosum.  It's defect in the brain which the right side of the brain and left side are not separated at all or only partially separated.  This condition causes autism-like symptoms with overall developmental delays.  I've suspected this and called the prenatal maternity center where I went to get my ultrasounds when I was pregnant with the twins.  I know they checked the fetusus' brains and overall physical structures of all their organs, but I want to find out for sure it is normal.  They said they will look into the old ultrasound but they never did.  I feel nervous about it but it's good to find out once for all.

The other condition is Eustachian tube dysfunction.  Eustachian tube is a small passage way that connects inner ear to upper part of the throat.  I was watching a medical TV show one day and learned about this illness.  There are several odd symptoms Noah exhibits and they fit with what they were explaining on TV.  He for one has speech issues.  If the tube gets blocked and the liquid does not drain to throat, you hear muffled sounds like you are hearing something underwater.  When Noah was a baby he made cat sounds when I pointed to a picture of a cat, but he made a high pitched noise with his mouth closed.  His noise making has been a bit off ever since and I've wondered if it because he hears sounds differently.  He also sniffs his nose even when he doesn't have runny nose or congestion.  They said the people with this problem often do that to try clearing their ears. 

Relating to Eustachian tube dysfunction, the severe case of it can cause a tumor near the ear tube.  I know it's the worst case scenario, but it's something worthwhile checking.  I spoke with Noah's pediatrician several years ago about having a MRI done to check his brain.  He told me that doing MRI might reveal more problems than necessary.  He said sometimes they find an unknown mass in the brain which may be harmless but since it was found, we would have to do a MRI annually.  There also may be a chance - a chance that the result may be disappointing.  See, the MRI can reveal the size and location of  the white and gray matter in the brain.  I understand that they represent intelligence and some psychiatric conditions.  What if it shows he is significantly lacking something?  It is scary to find out.  I suppose though at the same time, I can find the right treatment for him - if he shows challenging environment in the brain to speak normally, then we will all learn the sign language etc...  It's what he has and there is nothing wrong to learn, isn't it?

So, it's set and I am ready.  The nurse gave me a mask they use for administering anesthetic gas, so we will practice putting it on at home.  I am nervous, but happy that I am moving forward with it. 



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