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Yeah... Here goes!

 

My brother was born 1 month early February 2012.

 

He caught RSV when he was about 4 weeks old, and during that bout of RSV, he was intubated for about a week. 

 

He struggled to breath for some time after he recovered from RSV, it was thought that he had lung scarring and Reactive Airway disease. He didn't really gain any weight after he was around 6 months old. He actually weighed about 14 pounds when he was a year old. It was then that we discovered that he is celiac. Celiac disease is triggered by stressors, it is thought that his fight with RSV turned on his celiac disease. After we found out he was celiac, it was discovered that he has dysphagia.  I'd like to explain Dysphasia a bit; imagine there's trap-door to the entrance to your lungs, with him, the trapdoor is wide open. And ALL liquids go into his lungs. He could had drowned in a cup of water. We now thicken all of his fluids, and he drinks mostly from straws and sippy cups. He also needs a prescription formula, to allow him to gain and maintain his weight. (Which is working.)

But, it's looking up; all those ER/UC visits, the two ambulance rides, the multiple appointments, swallow Studies, Feeding Evaluations, IVs; he's fighting. 

 

(I'm almost crying from writing this, /:p/. I'm not at all emotional too....)

 

6 months ago, he had his first known seizure. He had to be given the Heimlech maneuver to stop him from choking on a piece of broccoli, he was OK afterwards.

 

Six weeks ago, he had his second confirmed seizure. This time, it lasted for 6 minutes. He had a complex partial seizure, it was like he wasn't in his body... 

He was taken to his pediatrician the morning after. He seemed fine, normal afterwards. When the neurologist heard that he had another seizure, she prescribed anti-seizure medicine. The thought is that he likely was having seizures that occur during sleep. The medicine causes mood swings of a very violent nature that he can't control. 

 
 
During all of the madness, all of us are helped by God, by our parish, by our friends and some family. He has a sedated MRI for him next month that's a little over two weeks after my birthday. He may have Ehler Danlos Syndrome type 3 (the hypermobility type), there's a genetic evaluation for him tomorrow. There will probably be many more appointments for him in the future.  
 
I pray to God as much as I can. I try to help every day with reminding him to take his medicine, and to help him, my mom, and dad.
 
 

Celiac disease, basically gluten attacks the vili in his digestive system. It flattens them so that he can't absorb nutrients from any food he eats. That is the difference in celiac disease that makes it to some extent worse than an allergy. We can't reverse the damage with medication, or stop the autoimmune reaction he has to gluten. We can only keep him from gluten exposure so the damage doesn't occur. He still has celiac disease, he will always have celiac disease: that isn't going to change for him ever. Our household is gluten free all the way down to the beauty products and pet food. This is normal for us; we thicken all his fluids, and have to watch what he eats.

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Mom helped me fix my grammar, timeline, and info above. We know this through TONS of research and appointments.

Any questions about celiac disease, or autoimmune reactions, then please ask. :)

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I'm so sorry for your family, it must be really hard on all of you. I'll pray for your brother. I'm currently going wheat-free, too, only for vastly different reasons, and although I know how hard that alone can be, the rest on top of that I can hardly imagine. I'm so sorry. :(

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The genetics test didn't happen as traffic downtown would've made it impossible to get downtown.

 

He has a MRI in a week or so.

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