GI Appointment Next Week!

[Anonymous]

We have been waiting for months to see a GI specialist about Bryce’s reflux problems and had an appointment scheduled for October 6; However recently his weight has really become an issue. He’s been spitting up so much! We have a nurse and OT come in from IE every week and the nurse weighs him. Despite always fortifying his milk he’s only 12 lb. 10 oz. at 9 months old. He started out small being a preemie, but that’s still horrible! He’s only gained like 1 pound in 3 months. When they weighed him today, he had only gained 1 oz in 2 weeks.

ANYWAY! We’ve been really worried, and have been trying to get a hold of our doctor to see if she could get us in sooner. She finally got a hold of them, and I just got a call from the GI’s office this morning and they got us an appointment for next Wednesday!! Yay!

I can’t wait to finally talk to a specialist and hopefully pinpoint what’s causing all of this. I’m convinced that once his reflux is more under control his development will just soar and he’ll be able to learn how to eat orally.

Another thing… Bryce finally learned how to roll over!! I’ve said this before, but the milestones are even more precious when you wait so long for them.

[Anonymous]

for the rolling!! Yes, once they are feeling better, they catch up and it is just wonderful. Good luck with the appointment!!

[Anonymous]

wow, my son is 12 lbs 8 oz at 4 months and i thought that was bad. im sorry to hear about his weight. im glad you got in to a GI appt on wed. what meds and dose is he on again?

we have our first GI appt on Oct 12th and im excited for that too.

good luck.

[Anonymous]

I’m happy to hear that you have an appointment next week, but my goodness…why didn’t his doctor take things more seriously with such minimal weight gain all along? It just makes me so mad when I hear these things.

I hope and pray this gi is excellent; that he listens to you, and that he takes some serious action in helping your little guy. Your poor son has been through so much.

Good luck and please keep us posted.

[Anonymous]

Yea for Bryce – rolling over is so cute!!

Hope you can finally get some answers at the appointment – will be thinking about you!!

Robin

[Anonymous]

Yippee for the rolling over!!! It’s so sweet when they accomplish their milestones! And you’re right, when you wait so long for it, it seems even sweeter.

I’m so happy that you got in to see the GI. Hopefully they can sort things out for you and Bryce. I know how awful it is when they don’t eat, and you feel so worried about their intake and their weight gain. How long has he had the g-tube?

Please keep us posted. I’ll keep my fingers crossed for you guys for a sucessful appointment. Good luck.

[Anonymous]

Thanks everyone.

Natalia-
He’s on compounded Prevacid – 1.5mg 3xday. This is the marci-kids suggested dose for him, and he’s done really well on it. He hasn’t had anymore pain since we started it anyway. Obviously it doesn’t help the spitting up itself much (it actually does help a little though). He’s also on Erythromycin -0.5 ml 3xday. for motility. It also seems to help some.

Christine-
We actually haven’t taken him in to the doctor since his 6-mo. checkup (He has his 9-mo checkup next week), and it was right after that that his weight gain started getting worse. Before that he was always gaining steadily, although slowly. Since then we’ve just been waiting to see the GI, and meanwhle trying to find solutions to the excessive spitting up – thickening, etc. We also had a swallow study done, and that’s when he was put on Erythromycin for motility. I just think there’s not much we can do until we see the GI. I personally think it must be an emptying problem or something like that. I guess we’ll find out.

Lori-
Unfortunately, Bryce has always been on some kind of a feeding tube. He had open heart surgery when he was 12 days old, and was on IV’s until he was almost 1 month old, so he really never had a whole lot of time to practice breastfeeding or bottle feeding. That in combination with his cleft palate left him unable to eat orally. So we brought him home from the hospital (at 1 mo) with an NG tube. When he was 4 months old we had the G-Tube placed, and he’s had it since. We practice every day with the oral feeding, but so far have only been able to get him to eat around 2 oz. orally.

[Anonymous]

I hope the GI has some answers. Good luck with your appt. and please let us know how it goes.

[Anonymous]

Great news and good luck with the appointment!

[Anonymous]

Good luck with the appointment Heather. I hope they can offer Bryce some help.

[Anonymous]

Well, we had our appointment today, and I think it went well. The doctor wasn’t the one I was expecting. I guess when they gave us the first cancellation, it was with whatever doc was available first, but he seemed really good.
Our first goal is to reduce the excessive spitting up. To do this, we are going to try increasing his erythromycin. They also started him on the Prevacid solutabs instead of the compound like we were using. They said it works better and could possibly help reduce the spitting up. I brought the marci-kids info in just in case they questioned the dosage, and they were really receptive and even fascinated by the information.
If this doesn’t seem to help, we are going to try Reglan again. Bryce was on this med when he was first diagnosed with reflux, and it made a huge difference, but he seemed to outgrow it and that’s when they first put him on Prevacid. Reglan has potentially bad side effects (I found out later) but for Bryce, the lack of weight gain is worse than any side effect, and he didn’t seem to be affected by it before, so I’m not as worried.
When we can get the spitting up more under control, and he can actually keep some feeds down, they want us to start fortifying his breast milk with the goat’s milk powder again and adding Microlipid (a kind of fat emulsion) to his breastmilk too, increasing the calories even more (up to 24 cal/oz to start) & keep increasing it to his tolerance & as needed.
They also want us to increase his time on the continuous pump at night. (G-tube ppl will know what this means). He is less likely to spit up huge quantities this way and we’ll be able to get some extra calories in him. (I actually had this same idea & started doing this a couple of days ago). All this will help him catch up weight wise and start gaining more again!!
So hopefully this combination will really work for Bryce. I was so afraid he would have to have some kind of surgery to help the spitting up, but it sounds like meds alone might do the trick. (I hope!!)

[Anonymous]

Great news! I’m so glad to hear they were receptive to the marci-kids information. Myles did terrific on the Prevacid Solutabs and they are very easy to administer. I hope Bryce does as well on them as Myles did. Sounds like they have a good plan for him. Good luck. I hope it helps turn things around for your little guy.

[Anonymous]

Sounds like a good appointment – there are so many things you can do before the fundo… sometimes they go to the GJ tube, when the baby spits up significantly and that sometimes helps.

Babies who have vomitting problems do much better on continous feeds, i think rather than bolus feeds. A lot of us have to go back to continuous feeds when things get rough – Matthew fell and hurt himself and threw up and that started a cycle of vomitting everything and the only thing that works for us at these times is to just go back to tube feeds and only continous feeds…

Hope the prevacid works well and so does the erythromycin

[Anonymous]

I’m so glad the appointment went well and hope the increased meds do the

trick. Keep us posted!

[Anonymous]

Thanks everyone

Thais,
What is a GJ tube? That’s one I haven’t heard of yet. I’m sorry to hear about Matthew! I hope everything starts to improve again with him.

[Author]

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