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Monday, April 8, 2013

Worn

"I'm tired / I'm worn / My heart is heavy / From the work it takes / to keep on breathing." 

That's the first lines of one of my favorite songs, "Worn" by the band Tenth Avenue North.  It pretty much sums up how I've felt lately.  Just tired, mentally and physically.  Worn out.  It seems like a lot of parenting is trial and error.  You learn that one thing doesn't work for your child, so you move on to something else.  But when you are raising a child with special needs, that approach is scary.  Might be the only choice you  have, but it's still scary.  It just seems like you are walking a tightrope and the margin of error is so small.  It's frustrating for us, because it seems like we are just getting a piece of the puzzle here and there and I can't see the big picture. 

I've mentioned before that Korban has stomach issues.  We saw a gastroenterologist for a while, and he wound up releasing us a few years back because Korban was doing better.  He took Prevacid for a long time, we did probiotics, GFCF diet, etc.  Many, many kids with autism have gastrointestinal issues as well. Our gastroenterologist said that kids with autism don't have more stomach issues than typical children, it just seems that way because they aren't able to communicate how they are feeling.  I see what he is saying with the communication, but you can't convince me that kids with autism don't have more stomach issues than typical kids.  I have friends with autistic children, and I have friends with typical children, and the autism parents are seeing some really bizarre stuff.  Last summer, Korban started throwing up when he was nervous or upset. We are still dealing with this, and he often chokes/gags on his food while eating and throws up.  He also gags himself on purpose sometimes, and has started trying to eat things that aren't food (soap, dirt, toys, on and on.)  I  mentioned this to our autism specialist when we saw her last week and asked if she could refer us to another gastroenterologist.  She asked if he had ever been checked for H. pylori (stomach bacteria) and we told her that he had not.  So she asked that he be checked for it.  Today I took him to his regular dr because he is sick and she did the test.  It came back positive.  She said there is no way of knowing how long he has had it, but he is probably on his way to getting an ulcer.  He will have to take a two week course of two different types of antibiotics and stay on Nexium for the next six months.  I feel terrible because we didn't know, but also hopeful that this will provide some relief.  He has been eating like crazy lately, even more so than normal.  And he gets very upset if I tell him that he's had enough.  For example, at lunch today when I told him that was all he flipped over all of the chairs around our kitchen table, poured my drink out on the tabletop and floor and scratched and pinched me.  He's desperate for food.  And it's so sad to see!  I feel like I am depriving my child, but he has gained so much weight here lately.  He's over 70 lbs now, which is over half my body weight.  Not good when you are dealing with aggression and rage issues.  But now that we know about the H. pylori, Brad and I are wondering if he is trying to eat so much because his stomach hurts all the time, which he mistakes for hunger.  Also, I looked up H. pylori and autism and read that it is more common in autistic children and it usually causes aggression.  I'm thankful at least we know now and hopeful treatment will help him feel better all the way around.  Antibiotics usually make him crazy though, so things may get worse before they get better. 

Also, at our dr's appointment last week, we discussed his tantrums and rage.  She is concerned that it could still be seizure related.  His newest seizure med (started in Nov. 2012) doesn't seem to be helping, but it's hard to know for sure.  She decided to refer us to LeBonheur's Epilepsy Center.  We will be going in early in the morning on April 29th. They will start with an MRI and after that we will be checked into a room and the EEG leads will be hooked up.  They will monitor him with the EEG and on video to see if there is any seizure activity.  We were told to be prepared to stay for at least three days so that they could get a good read of the situation.  Korban will be able to get up and walk around, go to their playroom, eat and everything else throughout this time but I know it will still be hard for him.  Plus, if anything abnormal comes up on the EEG and they have to adjust his meds, we will be staying even longer.  It's stressful, because Brad doesn't have that much time to take off work, and Korban is really going to be out of his element and we have our sweet Selah that we will have to be away from during this time.  But at least after all that we should have some definitive answers of whether or not he is having seizures and how they are affecting him.  (Just for background information, his past EEGs showed sub clinical seizures, which are pretty much random electrical misfires in the brain, as well as slowed brain waves.  He's been on several different seizure meds, and we haven't had great results from any of them.)

So that's what's been going on with us.

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