An Update

[TruLoves]

Hi! I've been asked a couple of times for an update...I think the bits that I wrote got lost in the other thread. So, I'm going to copy a bit from there and add some more in at the very bottom in red..

ChrisM and kerrinry
What tests did they actually do to discover it was his stomach?
I too, am very interested in his diagnosis and how they tested for it.
What's amazing is that the test itself was SO easy. It was like an EKG, but it was an EGG. Basically it was 6 or 8 leads placed on his abdomen. It measured the myo electrical activity at rest after a fast, then while eating and for a time after eating.

What makes it "sophisticated" is not the test itself but rather the expertise to actually understand the results and interpret them. From what I understand now there is VERY PREDICTABLE pattern of nerve action that results in the coordinated muscle action and peristalsis. I remember asking dh what the readout looked like on the screen (I couldn't see it) and he said it was "all over the place." Obviously it shouldn't have been. It did not show predictable patterns at all. Because the stomach sets the pace for the whole gi tract its not uncommon for it to affect all the muscles.

In our case he also had anal rectal manomety. I only hinted at it the post to our families because I felt like I didn't want to violate his dignity. It showed that he does have sensation and reaction in the rectum. If it's coordinated or not you can't tell at this age because they can't cooperate for the test really. They feel pressure and squeeze no matter what.

All in all it was the EGG that sealed the dx of gastric arrhythmia but it was also certainly the combination of all the testing done over the last 2 years as well.

Christyn
How did they diagnose this exactly? What medications will he be taking?
Well, the crazy part is that it isn't revolutionary at all. Basically it's a combo of a ppi, e-mycine (which we used to already do) and reglan. If those don't work then going to Canada and getting the domperidone as a 3rd add in can help. Really there is NO treatment for the nerve abnormality. So they've found the use of the motility agents helps train the nerves. And if not, then the combo will buy us time for technology and Dayton's growth to meet in the middle for a gastric pacemaker.

Lifestyle wise we also have to make sure to continue to use energy conserving techniques, temp mgmt and such to keep him using his energy to run those nerve cells. Similar to mito, when he runs low on energy or devotes energy to anything else then those nerve cells become even more abnormal and that's why he always pukes when he's hot or tired or over stimulated.

Okay, here's the new stuff: Now that it's sinking in I still feel really happy to know what's going on. But, I'm terrified that we'll never make the progress we need to train the nerves. I know that eventually we can get the pacemaker so that does make me feel like eventually things will be normal. But, I don't know. I'm SUPER FREAKED out about trying reglan. So much so, I haven't even filled the rx yet. I know Linds took it and was fine. Ava has been on it since she was days old and she's fine. But there are so many scary stories and I remember Nikki and Andrea saying how exhausted it made them. I'm really scared about the bad things and I don't want to give him anything that's going to change who he "is." Does that make sense? But, I also know that we have to try it. I'm just scared. Have I said enough how scared I am? lol. We have to try it because unless we can train the nerves he will never tolerate solid food. He can manage with his uncoordinated muscle action only with liquids. For solid foods the dr. basically said it's much more complex and we'll tackle that later when we've established a good pattern with the nerves. Sigh. I know, just fill the dang rx already. But, I'm scared.

[wendydagny]

Honestly? Fill it and see. Our GI said that if it's going to have negative effects, then they are pretty obvious early on.

Nora on Reglan is a different child, but in a very good way. When she is off it, she just feels terrible.

[Miori]

That is a lot to take in...but I'm glad that the trip provided so many answers! It sounds like the testing was very thorough.

[Mary]

I agree with Wendy--try it and see what happens. Sure, my kids had tics with it, but they showed up pretty quickly and we just stopped the meds. Some kids (like Ava) do just fine with it. As for the tics, the only time they become "dangerous" (permanent, that is) is if they're ignored and a person continues on the medication. Otherwise, I don't think there's any harm in trying. I don't *think* there are any long-term implications.

I so wish manometry was something more hospitals/GI practices offered. It seems there are so many kids with wonky motility and the standard is the UGI and/or emptying scan...which are not at all that reliable. *sigh* I'm really glad you went through with this and that you have a better picture of what's going on, even if the "fix" at this point isn't all that clear.

At what point will they consider the pacemaker for him? A long time ago we contacted a doc in NYC (near our house at the time) and he said he only did adults...and that nobody he knew would touch children under 18 with motility issues due to liability. Is this attitude starting to change at all?

[BethL]

Tru,

Wow, you have learned so much in such a short time about Dayton's little body. Take a look at my signature, everything that Dayton is supposed to be on now, Brandon is currently taking. I was really scared to put him on the Reglan and watched him like a hawk when he first started it but now he's been on it for a month and we haven't seen any neuro SEs. Also, we haven't noticed any change in his personality, temperament, or energy level (it's still crazy, baby on crack, high)

I am so grateful to you for getting all the specialized testing and learning all these new cutting edge things about a condition that some of our children also may be affected by. Right now we just know that our Brandon has DGE. He's definitely not as affected as Dayton because he can manage solids, but his capacity is crap and so he needs help. I will be really interested to follow what happens with Dayton on these same drugs and learn more about how you plan to re-train his nerves. Perhaps we'll be able to benefit as well from all that you have put into helping Dayton.

-Beth

[Twins plus Two]

Anyone know what Reglan is over here in the UK? Domperidone? If so, my two were on it from weeks old. I know it's restricted in the US but then Cisapride is virtually banned here and I know some of you are on it.
Kate x

[wendydagny]

Metaclopromide

[Amy]

Anyone know what Reglan is over here in the UK? Domperidone? If so, my two were on it from weeks old. I know it's restricted in the US but then Cisapride is virtually banned here and I know some of you are on it.
Kate x

we call it maxalon here in australia

[AvasMommy]

Cisapride isn't FDA approved here anymore, but they do have a "compassionate use" loophole that you literally have to jump through major hoops for. Mary did it for B, but I don't think it made a huge difference, if I remember.

Tru, I hope things work out with this, I really do. Don't be scared of Reglan, just be vigilant. If you see any of the SEs, then stop it. But, if it could help him, you just have to do it, kwim? I didn't feel any fatigue on it, and it never seems to make Ava tired, either...she takes it 4x/day...and she's nuts, LOL.

I'm so glad you got some answers!

[Minnie]

I know I'm just repeating, but try it. The side effects aren't a big secret that's revealed years later. If they happen they will happen within the first month or so of taking it, and it's pretty obvious.
ALso keep in mind that these unwanted side effects (if any at all) can be reversed by stopping the drug.

I don't like reglan either. Eric has never had adverse effects from it, but while he's taking it it makes me feel like it is KWIM? It makes me watch him way too much. That, and I never noticed any improvement, quite the opposite. but his other meds weren't up to par and/or being messed with all 3 times we tried it, and that could be why.
Most likely we'll be trying it again in the near future though.
Give it a good trial so you at least have it behind your belt.