It's not easy raising smart kids. They constantly call me out or ask questions I can't bluff my way out of. It doesn't help that I'm a terrible liar. I usually end up telling them way too much truth, probably confusing them and definitely giving them just enough information to be dangerous. It's like the Santa Claus thing.
Anyway, Monday is the first of potentially three blood draws. It's going to be awful. I lay awake at night thinking about it. And it's not even the draw itself that's so bad. I get them all the time, I can give IV shots (to a horse, but whatever), they don't bother me and the actual act is pretty quick and painless. The biggest problem is our pediatrician is 45 min away. So I can't tell James where we are going til we get there or else he will be in hysterics for an hour, which is not fair. To anyone. The only alternative is to lie, cause he's not going to stop asking where we are going. And I'm pretty sure a blood draw doesn't count as an errand. I'm dreading seeing the look on his face when he realizes what's going to happen.
But in mild preparation for this crappy event, I started talking to James today about blood draws and how there are creams that make it so it doesn't hurt and how mommy gets them all the time, etc etc. So we talk for a while and he's nodding and listening and then he looks at me and says, "Mommy, I'm not enjoying talking about blood draws."
Yep, it's gonna go great.
Friday, January 18, 2013
Friday, January 11, 2013
A new diagnosis code:
Immune Dysfunction.
Which is still very broad and there's no magic med for it, but at least it's better than Failure To Thrive, which to me is the stupidest diagnosis ever, because it's not a diagnosis, it's a symptom. Argh. Anyhooooo.
So we are driving back from Black River, NY with two of the BEST behaved children ever. The drive up yesterday took 8.5 hrs because of stopping to let kids play out of pity and some extra time spent pondering the blood covered shoes at a NY truck stop.
We checked into our hotel, fed the kids my pre made pancakes while they ran around naked (nuuudiiieee....sigh), and put them to bed while we ate in the sort of quasi-living area of our room. I was so impressed that Eve went right to sleep, because she's used to sleeping in her own room with the door closed and lights out and no distractions. I was so optimistic til she woke up crying at around midnight and there was no getting away from it. I was so tired I laid her next to me where she spent the next several hours wrestling me, chit chatting, and poking me in the head. James slept through it all. I think she fell asleep again around 2 or 3 and we were all up somewhere before 6. Good times.
The NNY Clinic is actually in a revamped house. So it took a little bit to find cause I wasn't looking for a house. They should probably warn you. Anyway, it was mostly consulting and going through the history and coming up with a game plan. We have a sad sad and long list of labs that we will have drawn at home. That'll be a really bad day. But I was happy that this particular visit was trauma free for James. He knew we were going to discuss foods to make his tummy feel better, but as soon as he saw he was in a waiting room he burst into tears. Poor dude. They were so nice though and soon, though he kept asking to go home, he was playing and even talking to everyone.
So the reason we came to this place was because seemed a little more open to help with dietary changes in a child with James' degree of oral and feeding aversions. With a kid who eats typically, many times you would start with a elimination diet and go from there. That's just not going to work in this case, and I liked how they discussed options. For now we stick with gfcf and continue to try to find a nondairy Pediasure that he will drink.
We will start on a variety of supplements to up his nutrition. Nothing crazy but making sure we pick as natural products as we can. After the labs come back we will discuss the next step. The suspicion is on a genetic dysfunction of the methylation process rather than a viral issue as many, but not all, NIDS kids have. It is testable and there are a couple different ways to treat it. It's only one piece of the puzzle, but basically if that process isn't functioning properly, then the body's cells aren't able to function, which affects everything, including digestion. 80% of the immune system is in the gut, so it's a pretty good indicator when something is off.
Honestly, I have a lot more research to do before I can discuss it semi-intelligently. But that's the gist. We will hopefully know a lot more after the dreaded labs get done. And we will try to do them next week.
Got about 5.5 or 6 more hours left on the road trip! Not counting breaks so Eve doesn't freak out and yell at us. But Tom's pullin up on the steering wheel like we used to do back in the day of driving horses all over the country, minus the NoDoze, Red Bull, and Skoal (I think).
Successful trip. Plan in place. Fingers crossed. And legs. Time to stop at another truck stop...
- Posted using BlogPress from my iPhone
Which is still very broad and there's no magic med for it, but at least it's better than Failure To Thrive, which to me is the stupidest diagnosis ever, because it's not a diagnosis, it's a symptom. Argh. Anyhooooo.
So we are driving back from Black River, NY with two of the BEST behaved children ever. The drive up yesterday took 8.5 hrs because of stopping to let kids play out of pity and some extra time spent pondering the blood covered shoes at a NY truck stop.
We checked into our hotel, fed the kids my pre made pancakes while they ran around naked (nuuudiiieee....sigh), and put them to bed while we ate in the sort of quasi-living area of our room. I was so impressed that Eve went right to sleep, because she's used to sleeping in her own room with the door closed and lights out and no distractions. I was so optimistic til she woke up crying at around midnight and there was no getting away from it. I was so tired I laid her next to me where she spent the next several hours wrestling me, chit chatting, and poking me in the head. James slept through it all. I think she fell asleep again around 2 or 3 and we were all up somewhere before 6. Good times.
The NNY Clinic is actually in a revamped house. So it took a little bit to find cause I wasn't looking for a house. They should probably warn you. Anyway, it was mostly consulting and going through the history and coming up with a game plan. We have a sad sad and long list of labs that we will have drawn at home. That'll be a really bad day. But I was happy that this particular visit was trauma free for James. He knew we were going to discuss foods to make his tummy feel better, but as soon as he saw he was in a waiting room he burst into tears. Poor dude. They were so nice though and soon, though he kept asking to go home, he was playing and even talking to everyone.
So the reason we came to this place was because seemed a little more open to help with dietary changes in a child with James' degree of oral and feeding aversions. With a kid who eats typically, many times you would start with a elimination diet and go from there. That's just not going to work in this case, and I liked how they discussed options. For now we stick with gfcf and continue to try to find a nondairy Pediasure that he will drink.
We will start on a variety of supplements to up his nutrition. Nothing crazy but making sure we pick as natural products as we can. After the labs come back we will discuss the next step. The suspicion is on a genetic dysfunction of the methylation process rather than a viral issue as many, but not all, NIDS kids have. It is testable and there are a couple different ways to treat it. It's only one piece of the puzzle, but basically if that process isn't functioning properly, then the body's cells aren't able to function, which affects everything, including digestion. 80% of the immune system is in the gut, so it's a pretty good indicator when something is off.
Honestly, I have a lot more research to do before I can discuss it semi-intelligently. But that's the gist. We will hopefully know a lot more after the dreaded labs get done. And we will try to do them next week.
Got about 5.5 or 6 more hours left on the road trip! Not counting breaks so Eve doesn't freak out and yell at us. But Tom's pullin up on the steering wheel like we used to do back in the day of driving horses all over the country, minus the NoDoze, Red Bull, and Skoal (I think).
Successful trip. Plan in place. Fingers crossed. And legs. Time to stop at another truck stop...
- Posted using BlogPress from my iPhone
Wednesday, January 9, 2013
New York Bound
Or maybe it's Canada. Either way, it's up there. In January. You may even see us in an episode of Ice Truckers. In a Prius.
Just kidding. We're totally not driving the golf cart.
Um, so anyway, we've gone rogue. We've gathered all hospital records and are driving to Black River, NY tomorrow to the NNY Autism Center. They want to help and since no one else does, we're road trippin it. There are two clinics that treat our only current avenue. NIDS. Fascinating stuff. Google it. Or go to http://www.nids.net/?page_id=296
To put it very very briefly, there is evidence that what we all think of as autism, or spectrum disorders, or ADHD, or SPD, is not. It's viral, and that causes autism like symptoms, in which GI issues are very prevalent. It's a kind of autoimmune dysfunction, which we have really always wondered about. Most importantly, it's treatable. It takes a long time and a lot of effort, and we aren't really sure if or how it's going to work. But at least they want to try. They will be doing a ton of labs as well as looking at the bajillion labs their poor fax machine spit out this week and there are dietary changes, antiviral meds, environmental allergy consults, and so on an so forth. It's a long process of figuring out the different sensitivities and calming and regulating the immune system and the body as a whole. And so with literally no other alternative, we are gonna try it! And we're pretty excited about the possibilities, because a lot of it makes sense and just fits. But as always, we are cautiously optimistic for now.
I give total credit for learning about this to my friend from James' school who will be taking her son to LA to the other clinic in a few weeks. It will be very interesting to see the two very different kids work through all this and see what the outcome is. Prayers appreciated for both of them! I look forward to reporting back, IF we can get there. I've already been cautioned by the clinic to pull over if there's a whiteout. Right....
:) This has no significance. It's just funny.
Just kidding. We're totally not driving the golf cart.
Um, so anyway, we've gone rogue. We've gathered all hospital records and are driving to Black River, NY tomorrow to the NNY Autism Center. They want to help and since no one else does, we're road trippin it. There are two clinics that treat our only current avenue. NIDS. Fascinating stuff. Google it. Or go to http://www.nids.net/?page_id=296
To put it very very briefly, there is evidence that what we all think of as autism, or spectrum disorders, or ADHD, or SPD, is not. It's viral, and that causes autism like symptoms, in which GI issues are very prevalent. It's a kind of autoimmune dysfunction, which we have really always wondered about. Most importantly, it's treatable. It takes a long time and a lot of effort, and we aren't really sure if or how it's going to work. But at least they want to try. They will be doing a ton of labs as well as looking at the bajillion labs their poor fax machine spit out this week and there are dietary changes, antiviral meds, environmental allergy consults, and so on an so forth. It's a long process of figuring out the different sensitivities and calming and regulating the immune system and the body as a whole. And so with literally no other alternative, we are gonna try it! And we're pretty excited about the possibilities, because a lot of it makes sense and just fits. But as always, we are cautiously optimistic for now.
I give total credit for learning about this to my friend from James' school who will be taking her son to LA to the other clinic in a few weeks. It will be very interesting to see the two very different kids work through all this and see what the outcome is. Prayers appreciated for both of them! I look forward to reporting back, IF we can get there. I've already been cautioned by the clinic to pull over if there's a whiteout. Right....
:) This has no significance. It's just funny.
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