Autism, Dup7, and more

Ringing in the New Year


Good evening everyone! I again apologize for going so long without a post. Can you believe it is already mid February?! We have been so busy here in our little part of the world, that the new year has just been flying past! With that being said I wanted to bring you all up to date with Sean’s medical stuff. A couple new curve balls have been thrown our way.

In December, of 2018, We had several appointments come up for Sean. The first, and rather insightful, appointment was to see a GI Specialist. I was so happy to see Doctor P, to talk mainly about diet, but he ended up giving us more information then we originally bargained for. (More to come on that!)

Come to find out I was right about Sean having a dairy sensitivity. Doctor P, Sean’s GI Dr, said my gut seemed right and we should take him off all dairy and soy. Meaning, not only can he not drink milk or soy milk, we can not have products with milk or soy in them as well. Needless to say we have changed Sean’s diet drastically and I have become a little Pinterest obsessed! (If you ever wanted or needed to know you can find any recipe you want or any product you want  for any diet you want!)

I do feel defeated some times though because we have noticed Sean is becoming very picky with his food. It seems like if it is not chicken nuggets, ,hot dogs,bananas, or some dairy free fruit bars hes not touching it. I have discovered that if i hide some vitamin gummies with his fruit snack he will eat them up without noticing! (mom win just saying!)

We are also having to watch his sugar intake as well. So much so that Sean can not drink any fruit juice right now. That has been hard adjustment on him because he loved grape and apple juice. Sean has never been a fan of water either. So Brent and I were at a loss on what he might be willing to drink for us. Luckily we were able to find a diet green tea that has zero sugar and he loves it.

After thoroughly discussing Sean’s diet with me, Dr P and I moved on to bowel movements! Nice subject right? Well when you talk about Dup 7 or Autism you have to discuss bowel movements. (Or lack there of). Both of these conditions have food sensitivities and low muscle tone which can contribute to severe constipation. In Sean’s case he has a double whammy with both conditions! My concerns stemmed from the fact that Sean had always had bouts of constipation but it turned into bouts of diarrhea. How could we go from one extreme to the other??

Now we move into the physical exam portion of the appointment! I think I have become quit the expert on doctor lingo and verbal nuances. Needless to say my ears perked up when I heard him say “Oh look he has a dimple”.  You see Sean has always had a small “dimple” at the top of his butt crack. (sorry for the TMI) But it has always been there and I never thought anything of it. To be honest I kind of forgot about it.

Doctor P began to explain to me that for some kids its simply that, a dimple, but for others its a sign of Spina Bifida.  From there he sent us straight to have an Xray done so he could see if he has this condition. As you have probably guessed, Sean did receive a Spina Bifida Occulta diagnosis. I wish I could say I was surprised but at this point I am not surprised by much!

Similar to autism, Spina Bifda has a range of severity. Some being so severe the spinal cord is exposed on the childs back. In our case Sean’s diagnosis is the better of the options it could be! Basically it has affected his lower vertebra. They have not developed properly. (There is of course more to this story but i will save that for a later post!)

Another insight we received was that Sean was in fact compacted with poo. So much so that we had to do a flush on his poor system through out December and into January. Doctor P prescribed Lactolose to break everything loose. You might now be thinking “But I thought you wrote you saw he had diarrhea?” Well, Per Doctor P, we were seeing diarrhea, however, he was so constipated that the diarrhea we were seeing was what little bit of fluid his body could get out. In other words, fluid was making its way through the poo and making its way out.

I think this is a good place to wrap this up! A strategically placed laughing emoji would be nice here. Trust me, December only continued from there. I will fill you in on our trip to the Neurosurgeon, Genetic consultation, and Cardiology soon. It has just been chaos!

As always, I hope everyone is doing well and I hope to you so back here soon.

Love Always,

Katlyn – A Gulf Coast Mommy

 

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