Thursday, March 27, 2014

Jon Update

  The good news is that behavior wise he is calming down. He had two really good days in a row. Both days he handled himself well at school, and after school was loaded with tons of high energy activities. He is still struggling at bedtime so I think it might be time to pullout the herbal sleepy remedies that help to calm him. It's either that or a blow to the head. Hahaha!

  I forget how far that little booger has come. I was reminded the other day how tiny he was when we got him. At the age of 4 years and 3 months he weighed 26-28 pounds and wore a 2t in clothes. He vomited at every meal. He had little tolerance for any foods. He was below the 5th percentile in height and weight and was labelled at 'failure to thrive' with no known reason other than psychological. We have had him on mood stabilizers, reflux meds, ADHD meds, anti-seizure meds (to slow his brain down and get him out of the PTSD pathways), and many homeopathic medicines and supplements. He is also on what I call the scrawny kid diet. Everywhere I could pack an extra calorie or bit of protein, I did. Tofu blended into sauces, soups, scrambled eggs, heavy cream instead of milk in recipes, and eating at least 5 times per day.
  Today he is off of all meds! Hooray! And….drum roll please……he just weighed in at 60.4 pounds!!! He is now wearing a size 8 in clothes and right in the middle of the growth charts. I tend to cook most of our meals from scratch to avoid additives that might make him more hyper. I don't know if it really helps, but I do know the one time he had a bunch of red drink mix he was so crazy for two days I thought we would have to tie a rope to him to keep him from whizzing into space. Man is this parenting thing trial and error!

  The only other thing that we have been trying to correct is that his lower jaw is significantly under-developed. I don't know if I  have ever mentioned this. We saw a very cutting-edge orthodontist about 18 months ago and have been trying a non-surgical method to get his jaw to grow more rapidly. It involves wearing an appliance at night that puts stress on the lower jaw, thrusting it forward. The stress on the jaw accelerated the bone growth so that the lower jaw will grow faster than the rest of his head and eventually catch up. It is a years-long process but it sure beats the alternative. )Side note, the typical 'expander' that orthodontists use is not going to work on him, or so we were told by 2 different orthodontists) Well, if I haven't mentioned it in the past, this is one hard-headed, stubborn and manipulative little guy. So he willingly or with minor fussing places it into his mouth at bedtime. Within minutes it is out. I put it back (he has to be awake to cooperate for this) and out its comes. I put it back, check on him and he appears asleep with it in. Then I check later and its on the floor. Over 18 months we have made only very slight, if any, progress. Do you know what that means? Invasive intervention and soon. His first set of permanent molars are trying to come through but they are partially wedged under the jaw bone. They hurt, they affect how his mouth closes and he chews and they are a sight of possible infection.
  You might think I am crazy, but I showed him the after-surgery pictures of children who have had the surgery and they were NOT pretty. I wanted to shock him and give him motivation to wear his appliance. It was only minimally successful. He has worn it a couple of hours this week, total. He needs to be in it 8 hours a day to put enough pressure on the bone. I am at my wits end. I hate the thought of putting him through this ordeal. It involves 3 surgeries and weeks of painful screw turning daily. Who would want to put their child through that? Not me! There is a little voice in my brain, though, that says this might just have to be a very painful lesson in how Mom and Dad are really doing the best thing for you and you are hurting yourself by fighting us on everything. Those natural consequences can be truly horrific. The Reality Fairy is not only going to slap him upside the head, she is going to go ten rounds in the ring with him and leave him a bloody pulp. Thats a tough lesson!


Reba said...

Oh, the joys of parenting! I really do believe diet plays a part. Our child is definitely affected by artificial colors/dyes, high fructose corn syrup, and even a couple normal foods (grapes, paprika/chili peppers). Oh, and chlorine. You are right, it is trial and error. Good luck with the wearing of the appliance!

Anonymous said...

Something my husband is trying for PTSD is EFT. The tapping solution is an amazing book and web site based on EFT. At first glance I thought it was new agey. It is NOT it's based on science. It changes the brain calming down the amygdala and the fight or flight response responsible for so many physical, emotional, behavioral symptoms/conditions. Please, please google it. Gary craig invented it years ago. He has great youtube videos. They are even using it to help the PTSD from Sandy hook.mif you research it for even 5 minutes, you'll see it's worth a try. The results are amazing. Over 80% success rate. Seriously. Best of luck always. :)