Thursday, July 28

Questions without Answers

I'm sure somewhere there may be answers, and we have some thoughts about answers, but nothing good yet.

James' spitting up continues to be a big question mark for us.  He does it sometimes two or three BIG times in a day, but usually once every day or two.  Aside from that it's little "urps" here and there throughout the day some days... but not every day.  When James does give it all back up, it's usually right after eating, but could be as late as an hour or so after eating.  When it comes up... it's like nothing has been digested.  Right now, over the summer, it's not nearly as big of a deal as it is during the school year.  But both instances definitely do inhibit his ability to "just be a kid" and us to "just be a family" because we always have to be ready for him to be throwing up, and often times that takes him out of activities or even keeps him out of school on days that he spits up multiple times and they're ALWAYS concerned that he is sick. If we can't get the spitting under control, we will likely have another year similar to last... where we are sometimes sending 2-3 outfits/day for him to be changed in to, and he spends as much time getting changed and having his environment cleaned up as he does actually engaging in educational activities.  not to mention the time it takes to get the food down the first time... or the amount of necessary calories he's losing each time he gives back his meal.

Because his esophagus looks 'fine', our GI's suggestion (we haven't had the follow up appointment yet so I'm not sure this is going to be the final answer...) was to just let him throw up.  That can't be a comfortable solution for him since he always fusses during and frequently after spitting up, and I know that it's not a really happy solution for us, when we clean the kitchen floors 2 or 3 times a day, give him baths twice a day when it's a lot, and we end up having to leave restaurants mid-meal as well as uninstall and wash his carseat sometimes a few times a week...

When he has a day with a lot of throwing up, we have recently begun tube feeding him at the end of the day whatever amount we can to 'make up' for some of the lost fluids.  If he doesn't eat at breakfast, we'll sometimes tube him then.  Even so, he has thrown up DURING a tube feed recently as well...

So, anyone out there whose child is2w'older' (James will be 5 in about 2 weeks) and still has reflux and low caloric intake with dietary restrictions? James is on only Pediasure with oatmeal thickening it because he chokes and then throws up with most thicker or spoon fed foods and doesn't chew well.  Yes, we have speech therapy weekly to work on it!  He is on Prevacid for the reflux, has had an upper GI, an EGD (scope), and a gastric emptying study (solid) done and was taken off of the meds he was on for slow motility due to normal results on all of these studies.  Reflux was shown, but nothing much.  We go back to the GI in about 2 weeks to talk through where to go from here... so I'm hoping to have some suggestions or ideas to bring to the table aside from "just let him throw up"...

All that said, if there's no other good answer for now, then we will just deal with it as we have for the previous year.
---------------------------------------------------------------


Micah has had these lovely morning icky BMs again.  He seems to go through cycles of this.  He's not waking and making any sounds, just going in his diaper.  No crying after even.  Today, we woke up to find he's gotten "in" to his diaper and his hands were covered, as was his pillow case, his sheets, and the carpet next to his bed...  We did some stool studies last time he went through this and all was fine.  So... we just are hoping he'll get back on a schedule where he goes in the toilet again like he was in the habit of doing just a week ago!   What's causing it... could be anything since his diet varies a lot on a daily and weekly basis while we experiment with new foods and constantly are trying to get him to eat whatever the rest of us are eating.
--------------------------------------------------------------

Lynae, too, is in another cycle of nasty diapers.  Hers we think is related to her drinking MILK.  She had issues last time we put her on milk so we stopped and put her back on Pediasure.  Then we tried Pediasure with Fiber and had the loose stool issue again.  Now we're mixing milk and Pediasure and again, we're having issues with her stools.  She's moving to Soy for a while to see how she does with that (mixed with Pediasure). It appears she just is more sensitive to milk.  Let's hope anyway.  Her issues definitely correspond to us adding milk, and not with Micah's issues, so I'm pretty confidant that they're not sharing a virus or something.
--------------------------------------------------------------

Thankfully, throw up and poop aren't what we deal with all day every day, and we are so grateful to have each of our children!!!  It's hard to believe that school starts in less than 2 weeks and our summer vacation will be over...

5 comments:

  1. Have the docs thought of changing from Prevacid to something else? Addy has severe reflux and takes Zantac (2mL twice daily) and we have no spitting up at all (unless she has a tummy bug). She does not have a nissen so she can throw up. She is completely allergic to milk so her formula is milk and soy free. She can't even take Pedaisure :( Poor little guy, he cannot possibly be comfortable puking that much :(

    ReplyDelete
  2. Has he been tested for food sensitivities or allergies (IgG or IgE allergies). Isaiah also has acid reflux/GERD, along with severe allergies - he has also taken Zantac since he was about 4 months old (he just turned 6).

    ReplyDelete
  3. We've been dealing with the throwing up for 4 years now...we recently have switched her to nexium, all test have been done...nothing to explain why! We have switched to a 2 calorie supplement which helps to add calories into her diet. We started off with pediasure then to Boost 1.5 cal and now on 2 cal HN....Good Luck!

    ReplyDelete
  4. I know you asked about older kids, but what we did was suggested by a mom of a teenager. We took him off of Previcid and put him on probiotic, enzymes (initially), and changed to only goat's milk. I know alot of people hesitate with this abrupt change, but it worked for others and us-he was a whole different child afer 48 hours!

    ReplyDelete
  5. After finishing reading your post, I would try goat's milk with Lynae too. The protein chains are shorter and easier to digest. It is also closer to matching Mama's milk than cow's milk is. Micah can take the goat milk, but as soon as he gets cow dairy he has trouble-one end or the other, or both.

    ReplyDelete