For most of you reading this, you are already aware that my son has a Port Wine Stain on the right side of his face. I did not even know what a PWS was until I had a child with this, and I have dedicated another blog to PWS and his progress, but that blog, I have not been so open about due to needing to complete and compile before/after pictures and some other personal reasons as well. I am not ashamed of my son's birthmark and no one in my family is, however I have experienced some very hurtful comments from adults that has me protect my son and his treatment journey.
Just as a side note, about three out of every 1,000 children are born with a PWS, which is a birthmark that looks like maroon wine was spilled on the skin.
When Ayden was born, getting a referral and seeing a dermatologist was a wait, but we did find out that his PWS was only cosmetic. It did not come with seizures or glaucoma that many PWS come with. Making the decision if we wanted to treat his birthmark was a very hard decision. There was a lot of worry over this decision because I struggled with knowing if I was making the decision for myself or for my son. I have been in education for awhile now, and I am very aware of how cruel children can be. A child with a PWS is an easy target and I wanted to make sure that if I had the opportunity to get him the laser treatment to help lighten the stain on his face I should give him that. Doing treatment at a young age is always recommended as it is done and out of the way, and they won't remember it. Yet as my husband and I were making the decision to get him the treatments, I began wondering if we should wait so Ayden himself could make that decision. Needless to say we made the decision to go with the laser treatments and he had six pulse dye laser treatments at Denver Children's Hospital.
Once we made the move to Omaha, we went through the proper channels to get our referral to the only pediatric dermatologist that does the laser treatment for PWS. After meeting with Dr. Nelson we realized Ayden would no longer be given a topical numbing cream, but he would need to have anesthesia to have the treatment completed. We did know this would eventually be something we would be addressing, but I did not think that my fifteen month old son was needing to go under already. I asked all the questions to the dermatologist and even our pediatricians and no one seemed alarmed that Ayden would be going under.
His first treatment was hard as it is never fun to have your child carted off away from you, let alone going through the anesthesia process, but it was successful and Ayden did not seem phased at all. When they brought him back to me, he seriously wanted to eat everything in sight and wanted to go home. It wasn't until about two months ago, I began researching toddler behavior because my son was being so crazy. He was simply being a boy, but I wanted to see if some of his behaviors were normal. Yes I was that mom and I googled it, and then I came across an article that had a study done with small children going under anesthesia that linked aggressive behavior and learning behaviors to anesthesia. Seriously, this is what I get for looking on the Internet and reading.
I begin to freak out and still am, as Ayden goes in tomorrow for treatment number nine, the third with anesthesia. Am I harming my son cognitively so that we can correct something that God intended him to be born with? I feel for the anesthesiologist that will be drilled with questions at 6:30 am by this crazy mom because most the time it is simple questions to verify he is only being put under with the mask, etc. I can see it now, I will be asking my questions between emotional tears of frustration and fear. Yep, I am sure crying right now as I type this...seriously need to get this chemical imbalance checked out.
I have included just two of the many articles that I have read about the links to anesthesia and learning disabilities, but I just need to realize that my son is perfect the way he is and screw everyone else who does not see that! My husband and I have made the decision to keep going with treatments as they are making a significant difference in the coloring of his PWS. As Ayden gets older if he chooses to stop treatment we will respect that decision. Until then, I wait to hear what the anesthesiologist says and pray that treatment number 9 is a success.
There you go... my recent mommy guilt that is sending my stress level through the roof, but I am sure I will do something or say something that will shift my mommy guilt to another topic or child sooner or later. Oh the joys of being a Mommy!
http://healthland.time.com/2012/08/20/study-shows-anesthesia-may-lead-to-language-deficits-in-children/
http://www.cbsnews.com/news/anesthesia-use-in-children-may-increase-risk-for-language-memory-problems/
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| 6 months old |
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| 18 months old |
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