We got an answer!

BatmanWell, after a drawn out wait we finally have an answer. Is it the ONLY answer or just one piece of the puzzle? Well, only time will tell, but I have a good feeling a lot of issues will be resolved. I have often talked about our youngest son’s sleep issues and how he even had a sleep study. We were supposed to repeat a sleep study at home since he was so traumatized by the experience of it. Plus, they didn’t get very clear results. What I had understood was that he did have four episodes where he stopped breathing during the sleep study. The whole ordeal was awful because they truly didn’t understand Sensory Processing Disorder. Please feel free to read the post for the full story. We never did get to do the sleep study and never got a reason.

I also mentioned in that post he also had a GI appointment coming up for a swallow study as well. He had the swallow study in the middle of April. I was unable to take him due to my own medical issues, so my husband took him. Basically, though, it was another case of medical professionals that didn’t understand Sensory Processing Disorder and didn’t care to try. Unfortunately, the doctor also doesn’t like working with children, which he told Joey very plainly. Chaz did not choke or gag during the swallow study, so they said he was fine, and that was that!

So, let me bring you up to speed on Mr. Chaz:

  • He has Sensory Processing Disorder. This is something we know, and something for which he receives therapy.
  • He has a Speech Delay. Again, this is something we know and something for which he receives therapy.
  • He has some nasal emissions when he speaks. This is something we know but the reason has not been determined. It could be a learned behavior, a habit (since it’s something he’s done since he first started using words), or there could be a medical reason.
  • He doesn’t sleep well. It has definitely gotten better, but by better I mean he has finally learned how to put himself back to sleep most of the time. He still snores and wakes often throughout the night. He also moves around in his sleep a lot. We got him a twin size waterbed (which is bigger than a regular twin bed), and this has helped a lot because he has more room to move around. Plus it is heated and has motion – perfect for his sensory needs
  • He often chokes on drinks and sometimes food. You know how you cough if your drink “goes down the wrong way?” He does that all the time. Sometimes he will also gag or choke on food, but it has nothing to do with texture because foods he eats all the time will randomly make him choke or gag.

Special needs child

On Wednesday we (finally!) had his ENT appointment. Oddly enough, she explained everything I thought I knew about his sleep study wasn’t correct. His O2 levels DID dip but not to where they’d consider it to be a problem. She also said it’s been confirmed his tonsils are a normal size, which was another concern because of both the choking and snoring/breathing during sleep. I instantly felt defeated – like it was going to be another dead end with no answers. But this appointment was already SO different. She believed me! Despite the sleep study paper she believed me when I said he snores and wakes up startled. She was also very patient and understanding with Chaz, and he responded really well to her! So, we went ahead and looked at things with the scope, and we got an answer! His adenoids cause a 75 – 100% blockage. So, this definitely answers the sleep issues!

Could it answer the choking issues? It seems possible. It really MIGHT be going down the wrong pipe if he’s breathing through his mouth due to not being able to breathe through his nose. This is one we’ll have to wait and see. It doesn’t seem to be a soft palate concern, which is one of the issues the swallow study was supposed to address, but she was able to see it a bit and it seems normal.

Could it answer the nasal speech? Possibly. Again, this will be a wait and see. Again, it’s probably not a soft palate concern.

So, the not so fun part? He will be having his adenoids removed in a couple of weeks. Because it’s just the adenoids and not the tonsils, too, it’s a quick outpatient procedure and quick recovery time. He can even go back to eating solid foods the next day! He’ll need to take it easy for a few days, of course, but I know he’ll bounce back quickly. Then, if further down the road the other problems still persist we’ll have a swallow study with a pediatric team that works closely with his ENT. So, although I’m a little nervous about the surgery I am SO glad we got an answer, and I know he’s going to feel so much better when it’s all said and done!

 
 





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Comments

  1. Krista Bainbridge
    Twitter:
    says:

    So glad you guys finally got an answer! I’ll be thinking of you when the surgery happens!

  2. Glad you got an answer!!! My prayers are with you <3

  3. Julie Wood says:

    I am so glad that you got an answer to your sons health concerns. What a terrific mother that your son has. You are so concerned and persisted in needing to have your sons health issues taken seriously! I will be praying for you during the time when your son has his surgery. Thank you so much for sharing with me!

  4. When I saw Batman here – I immediately thought of when I was a kid and my dad took me to see him. Batman swung his cape and hit me right on the nose, I started crying, Batman tried to console me & I’ve been a Batman lover ever since.
    Anyway – I really am happy you got an answer and my prayers are with you. Thanks for sharing with us.

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