...is our appointment for Dylan's upper GI. At this point, to be perfectly honest, I am feeling like tomorrow can't come soon enough.
Because today? Today I am having one of those days.
I am worried about Dylan. Worried about his health and well being. And at the same time I'm worried that when everything is said and done, we will not find any issues and instead will learn that this reflux, this constant vomiting, is something we just need to learn to live with.
Three times in the past two days, Dylan has panicked and choked while vomiting. It almost seemed as though it got stuck in his throat and couldn't move - neither up nor down. After a few seconds, it came up. Out of his mouth yes, and his nose. It was a scary scene, to say the least. Can this be normal? The only experience I've ever had with reflux is this, so I really do not know...
Oh, I am nearing my wits end, I think. I truly may be. My head is spinning.
Nothing is staying down. Every single thing that I feed him comes back up. All. Day. Long. His development is, without a doubt, being severely affected as are his relationships with people. I don't even want to think of the damage that is being to done to his insides.
Sometimes when I feed him, I feel as though I don't know what in the world I am doing. I am suppose to be feeding him fatty foods to help increase his weight, but at the same time, fatty foods do not digest as quickly and with an already obviously slow digestive system, that's not exactly helpful to the situation. There is talk about the possibility of Celiac Disease, so while I am being instructed to thicken his foods with oatmeal and other cereals, I feel like if in fact he does have Celiac, I am certainly not doing his belly any favors by giving him 10 tons of oats and barley a day. His pediatrician said today that maybe he's having difficulty with milk proteins. So, do I feed him milk, soy milk, Pediasure, formula? I don't know.
Ahh. I just hope we find an answer soon. And by soon I mean, like, tomorrow.
*Annoying pity-party over*
18 comments:
Oh, Laurie, that sound just dreadful. And not normal. I am so surprised that they haven't done an upper GI earlier than this based on the severity and the consistency.
You are a GREAT mom, and you are doing what's best for Dylan. I really and truly hope that you get some answers, and SOON.
Interesting about the Celiac disease. Someone just mentioned that to me today, just today, about the high occurence among people w/DS. I wasn't aware. Why do you think he might have it? Are there symptoms? Ugh...like we need another thing to worry about.
Can't wait to hear the results! Don't forget to bring an empty bottle or sippy cup for Dylan, whatever he usually uses.
Funny his is tomorrow. My oldest son, Andrew, actually has a swallow study tomorrow b/c he's been having issues lately. Matthew has to go b/c I can't be in the room w/x-rays.
I will be praying for your little pumpkin that these tests finally determine what is going on! Hang in there. I know it's easier said than done when it's one of your babies!!!!
So sorry you and Dylan are going through this! Feeding issues are so stressful for a mom and it sounds like Dylan has got something going on that's not just reflux. Praying it's nothing serious but that they can find something that will stop his vomitting. Keep us posted!
I am keeping my fingers crossed for you snd sending prayers. Hang in there, there must be some reason for the reflux. I hear ya. On a side note it won't give him enough cals or anything..but you can rub olive oils and flax oils into his skin several times a day. He can absorb the oils that way, instead of getting him to swallow it. I know some days are hard. I figure I will be doing some of the test that you are soon. Wysdoms breathing has gotten worse, so I feel more test coming on. LOL hugs
Fingers crossed for tomorrow! Lots of celiac talk on my local Ds listserv, so if you end up needing more info, maybe I can help. Hopefully you won't, though.
As Angela said, "Oh, Laurie"! I am so sorry to hear about how bad Dylan's reflux has gotten and how awful this is for you, for him, for Cassidy, for your husband and everyone else who loves and cares for Dylan!!! I can't wait to read about the upper gi they do tomorrow - I REALLY hope they can give you some insight and help!!!!!! I know when Whitney was having horrible reflux from her feeding tube, we put her on reglan in addition to the reflux meds... it is supposed to help in the motility of the food moving through the stomach/intestines (i think). i am sure someone has already mentioned this, but thought i woudl mention it just in case. thinking of you and hoping this added stress of the reflux will be over with very soon!
Laurie, I am looking forward to hearing how tomorrow goes. Davis had GI issues and this is the first post that reminds me of Davis as a baby. Hmmm.....sending you good thoughts. Sharon
Our thoughts and prayers are always with you as you search out some answers tomorrow. Good luck and try and get some sleep tonight.
I really hope the doc appt gives you some answers... Good luck!
Nothing more frustrating than not knowing. We want to help so badly but when we don't know what the help is it driving you crazy. Hope you are able to get some answers tomorrow with a simple solution.
I just have to say, that wasn't an annoying pitty party in any way! I hope and pray that you can get an answer to what is going on so you will know how to address all of it.
Laurie, all the best to you and Dylan tomorrow. If the upper GI doesn't show anything abnormal, I would push for an endoscopy, sigmoidoscopy and biopsy (the things that helped diagnose the H Pylori for Bobby). Not sure if celiac disease might also be playing a role, as you say... it should be a simple test (blood, I think) to determine if he has Celiac's. If they suggest a RAST, which is supposed to determine if he has a milk protein/etc allergy, don't necessarily be swayed by negative results. Bobby's RAST supposedly showed no milk protein or soy allergy, yet the 2 times we tried to reintroduce soy (once, by itself, the second time, in combination with Elecare, the formula he was used to), it failed miserably. Go with your gut, even if it means getting a second or third opinion after this upper GI tomorrow.
Best,
Valerie
I'm praying you get some answers and I'm very hopeful that you will. Please let us know what you find out. Good luck!
Thinking of you guys today and hoping you finally find an answer (and solution!).
thinking about you guys today!!!
Ugh, that sucks. Have they ruled out an intestinal blockage? I actually just watched a medical mystery show the other day where the child was fine in the younger days, but eventually he began spitting/vomiting everything up. He had an intestinal blockage. Might be something worth looking into ... lots of kids with DS have duodenal webbing that I guess could go undetected in the beginning if not severe enough.
BTW I haven't heard that celiac causing vomiting ... is that true?
Oh Laurie, I missed this! I hope today went well. Any answers?
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