I knew seeing the geneticist would not be terribly enlightening. Aidan has been struggling with pretty specific things. We had not seen this doc in several years though. We had tried a more local geneticist with not great results. This particular geneticist is very hard to get into and we really like him. It was worth the 4 hour journey to be set up as his patient again. He was also very blunt with Aidan. I think this was good. Aidan needed him to tell him like it is. Here are a few things we learned or relearned.
Aidan's shoulders are not great. Doc feels they are subluxing in and out of socket. He wants Aidan to see sports medicine. Hopefully they will be able to guide him on healthy ways to keep shoulder in shape. He did feel like swimming was great. He did tell Aidan to lay off butterfly for awhile. Thankfully Aidan has 6 weeks off of swim. Doc said another thing to look at is rowing. The rowing movement is very good for people with EDS. This is great since Aidan loves kayaking. The important thing is to keep him moving. The less movement the more EDS will rear its ugly head. Water is great therapy and we should keep it up. He also said Aidan's 2 and 3 baths a day to soak is not uncommon. He agreed Epsom Salts are great. We also like to add our oils in too.
Next was Aidan's poor diet. He is concerned with the very low caloric intake Aidan has. He also does not like the binge eating we see in him. He stressed to Aidan his 2 jobs in life are eating and drinking, nothing else. He went through a scenario of wild animals to illustrate what he meant. Thankfully Aidan was all ears since the doc was using animals as an example. Doc wants less sugar and more high calorie/high protein foods in his diet. He wants us to see a nutritionist for this. He does not want this to lead to further complications of needing food supplemented in other ways. Neither do I. We have to work with him on having a healthy relationship with food...seeing it as fuel and not luxury. We also need him to hydrate. He should be drinking 3/4 to a gallon of liquid per day. He should carry fluid with him every where.
Doc addressed Aidan's headaches. He talked about posture. Where swimming is great for EDS it is awful for posture which in turn leads to more headaches in EDS patients. So I have to work with him on keeping his body aligned correctly. He recommended yoga or core strengthening for this. I may just pull out my ballet training on him! :) The doc said Aidan is basically trying to hold a bowling ball(his head) on very loose rubber bands. We need to teach his body to hold his head up with bone not muscle.
The last thing we discussed were the "crashes" Aidan has been having. He will be fine and then he will get hot, feel flushed, sick, upset, angry, light headed, thirsty, and agitated. I was pretty sure I knew what doc was going to say about this. He feels like Aidan is experiencing episodes related to Dysautonomia(POTS). Sadly I recognized the symptoms because I have them too. The main things though to help dysautonomia are the same things we need to work on for EDS- high protein, more liquid, endurance, and salt intake.
The really good news about all of this...Aidan is a boy. Boys tend to have a few years right before puberty where they get worse. Then testosterone kicks in and many if not all symptoms can get better. No this does not always happen but it does happen. Where a girl will see many of her symptoms start in teen years, a boy will see many leave. The doc encouraged us to keep moving forward. We need to help Aidan have a healthy exercise plan, a good food relationship, and high liquid intake.
This is all simply fantastic news! I say that with a certain level of sarcasm. I read in a book I am reading for lent, "Don't you want to get better?" Do not get me wrong...YES we want to be better. But all of what I just said takes work! Don't believe me...think about this for a moment. Brooke has several food allergies, requiring certain food prepared before we even walk out the door. I also have allergies and have to watch certain foods. Now Aidan needs his food monitored. Plus others who live in the home need fed. All of us need to drink lots of fluids to keep headaches away. It is my job to stay on top of that. When someone gets a headache, I must decipher from how they are crying and holding their head what kind of headache. This will help me to figure out best treatment. What if I have a bad headache and so does a child? This leads to another complication. What if something slipped into our diet and makes poor Brooke sick? I have to retrace my steps to figure out what it was. Brooke and I react to soaps and perfumes. I have to be super careful what smells are brought into our home. Just the other day I started reacting to a detergent I had been using for six months. So now all my clothes need re-washed. If someone comes in with a strong perfume, I have to wash or clean where they were. I take large amounts of benadryl just so I do not have hives all the time, which in turn makes me super sleepy. I am supposed to have PT. Aidan now needs sports medicine. All kids need to be in swim to keep them strong. I actually should be in something to keep me moving as well so a wheel chair is not in my near future. I am supposed to see a nutritionist to figure out how to help Aidan. Both boys still need sleep studies. Chan needs a full spine MRI which requires sedation. All of the tests are followed by doc appointments to hear results and learn what is next. Plus our regular follow ups with geneticist for Aidan and I, allergy doc for Brooke and I, Neurology for all 3 kids. And none of us feel good.
I have thought many times of going the completely natural route. And for some things we do. We try to eat very healthy(minus parties). We carry our oils every where. We rely on non-traditional treatments when possible. The thing is...no amount of "natural cures" will put a brain back in a head or change or genetic structure. So yes they are very helpful when talking about allergies and many many other things, we still need our docs for many many others.
Believe me I write none of this to say "LOOK AT ME". I write it to explain to anyone just beginning, "yes this is lifelong and the road is hard sometimes, but it is so worth it to fight for your kid and yourself!" I write it for my friends who think I am a flake for cancelling or not being there again, "my kids need me right now." I write it for the stranger who thinks I am making this all up, "please just take a moment. learn about ehlers danlos syndrome, pots, chiari, and mast cell activation disorder." I write this for my mama friends who are crying tonight for their babies, "i wish i was there to wipe your tears and hug you." We do want to get better...but sometimes we were called here for a reason.
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