I apologize in advance if anyone is offended by this post, as that was not my intent. ~End Disclaimer
I’m so pissed off right now. I don’t understand why Emmett cannot catch a friggin break. He just started another goddamn fever cycle. This makes the 3rd cycle in the last 30 days. Each cycle lasts 7-10 days. During this time, he’s in a great deal of pain and often inconsolable.
The last 2 fever cycles ran back to back (which has never happened before) and finally ended a few days ago.
This evening we noticed Emmett’s cheeks were very flush and while at therapy tonight with Dr. Patti, we discovered that his mouth was breaking out in cold sores once again.
So I have to ask…WTF God could you show the kid some mercy already. I realize that it could always be worse. Trust me, I sit in oncology with Gavin every month for his infusions, I know how bad it could be. However, everything is relative and this fever disorder is going off the rails and is no longer controllable.
The only treatment is Prednisone and unfortunately, it also suppresses his immune system. He just recently xover pneumonia and we literally cannot give him the meds to quash the flare up because it’s not safe. We have never had 3 fever cycles back to back to back. They used to come about every 3 weeks and now we are only getting a few days.
He is miserable and in pain. We have a hard time getting him to eat or drink. The only thing we can do right now is 1 teaspoon of Benadryl 4 times a day. Hopefully it will reduce his bodies allergic reaction to whatever is going on behind the scenes….
On a completely selfish note, Emmett is challenging enough when he’s feeling well. This whole cycle bullshit needs to stop before I lose my mind.
**Thanks for reading**
-Lost and Tired
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Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. 🙂
Thinking of you guys… hope the little man feels better soon. Such a heavy burden for a little boy, makes me sad. 🙁 Peace and strength.
My recent post The Hard, the Sad, and the Guilty
Wow, you have your hands full and then some. Why is Gavin having infusions? I think I missed that. I am glad you have an opportunity to release the pent up frustration. Take Care
Gavin has no immune system and so he gets an infusion of antibodies each month…
have you tried using Lysine supplements? They help tremendously with cold sores in my family.
When my daughter got mouth ulcers from chemo, we used "magic mouthwash" – benadryl, viscous lidocaine and maalox, applied with little oral sponges to prevent swallowing.
Sorry he's hurting.
My recent post Scarlett's Neet Feet
Poor Emmett and you! I agree about the lidocaine, if they can prescribe it, just paint it on his poor little tongue. I hope the Dr's can figure out what's going on. Vent away if it helps any…….
Thank everyone. I know it could be worse and I'm grateful it's not but enough is enough already. Thank you for your thoughts.
I agree…enough already…Damn.
You all deserve a BIG break. Stay strong but don't forget to look after and take some time for yourself – it's hard I'm sure to do that. Huge hugs to all of you. Hope they get it figured out and fixed quickly. <3 <3 <3 <3
poor baby. I know, stupid question…does your toothpaste have sodium lauryl sulfate (SLS)? It is generally found in toothpaste, lotions and shampoos and can cause sores. I know this is something different, but the SLS may exacerbate the sores in his mouth. just a thought. and hugs to all of you!
Have you tried viscous lidocaine? It is so much easier and more effective than the mouthwash. If your son can stick out his tongue on command, you just paint it on. It can be flavored as well, and while it's no gourmet treat, it's tolerable,
I'm so sorry 🙁 This really sucks, for all of you.
My recent post Outrage for Akian: It's about dignity
Poor little guy! You said earlier that he was a bit "off"…too bad you had to be right, hey? Hopefully an answer is in the very near future. I always think it is easier if you know what;s going on, even if you don't much like the answer. Sending many good wishes your way!
I'm so sorry this is happening to your son! I hope you can get it figured out soon! My prayers are with you all. And by the way, it's your blog, vent away! Don't worry about offending anyone, if they don't like it, they can go elsewhere! Love, light and positive energy heading your way.
poor you and poor baby. since it's already intolerable and horrible, any chance of stopping the meds and just letting his body fight it? sounds like it's a battle that just needs to be fought and won once and for all. i don't know enough about his situation and i'm not trying to judge, but maybe the body just wants to fight and kill instead of being suppressed. very easy to say, right?! i'm not watching a sick kid suffer. sigh…i just am starting to have less and less faith in meds and docs and more in other areas: natural stuff, diet, etc. mom of two autistic boys and getting over the hump of coming off risperdal for one of them. best of luck.