Ongoing reflux - gastric fibroscopy?

[susheli]

My poor little Helena is still suffering from her reflux and has not gained weight now since mid-Dec. She's also constantly sick (ear infections, bronchitis, croup, ...), which her docs link to the severe reflux. We're really struggling, and it feels somehow like the PE nightmare is continuing somehow, though this doesn't make sense as it isn't PE anymore, of course ... I think it's the worrying, the fearing for her that links the time before and after her birth...

Now her drs want to do a gastric fibroscopy to see if there is a structural problem causing the reflux. She will have to have a general anaestethic - I am so terribly worried! I just want to refuse the procedure, though I know this isn't rational and that many babies have to go through much worse... so I "shouldn't" be so upset. But I can't help panic.

Has anyone's baby ahd to have a gastric fibroscopy at 5 months?
Thanks for any thoughts,
Sush

[aundapenner]

Sorry Sush I can't give you any advice as we were able to avoid everything.

Do they give reflux meds in France? (They do not here in Germany - Sofia still spits up but because she was gaining they didn't/won't do anything.)

[susheli]

Thank you for your reply, Alice.
Yes, Helena has had all the meds they give here in France, up to the highest dose allowed for babies. They work for a little while and then not anymore. I try to avoid meds whenever possible, but Helena has been in such pain with the spitting. It's the pain that's the worst, and now the lack of weight gain...
xo Sush

[jamie w]

Anna has had multiple EGDs (that's what they call them here in the states). She has had to have general anesthesia each time. She has also had 1 surgery and 1 MRI which all required general asesthesia. I would be a liar to say it wasn't scary. It was. And each time is no easier than the time before. But each time, things have gone well. Finally, things are getting better for us. Having all of those procedures was not the road I would have chosen but it was what had to happen and because of all of them Anna is finally doing better. If the meds have failed then it is the next logical step. What meds do they use in France? Anna takes Prevacid but requires an adult dose to get any relief. I do not like having to give her such high doses but I do not want her to suffer and I want her to eat so I do what I have to do. I am so sorry you are having struggles. I hope the scope will yield some answers for you and poor baby Helena.

[milesymommy]

I'm in a very similar situation. Josh's weight gain has significantly slowed since December. We're trying Prilosec now, but had to wait to restart since he's just getting over bronchitis and an ear infection. I didn't want to give him the Prilosec while battling other things... hard enough to get the antibitics down for the ear infection. My doctor said they recently linked ear infections to reflux as well.
Putting babies under general anaestethic is heart wrenching - I've been there three times with Miles. But you do what you need to do, and hopefully your daughter will be better for all the testings and procedures.

[kara]

Our DD had to be on two meds at one time for her GERD. The doses had to be increased frequently, as they are dispensed by weight, and even a few ounces in weight can cause the medicine not to be effective. We were also on prevacid, 3 times a day (which is three times the dose they normally give), and reglan. They didn't want to give the reglan, but it was necessary. In addition we were switched to prescription formula because all the meds weren't cutting it. Gastro determined it to be a dairy and soy protein intolerance/allergy.

She didn't have an EGD, but did have an Upper GI Xray - which ended up not requiring sedation - and is not invasive. They gave her a bottle of liquid to drink that appeared bright on the moving xray, so they could follow the path. They also looked at structural stuff and ruled out pyloric stenosis.

She did have general anesthesia during her heart surgery, and as Jamie said, it is never easy. Just make sure it's at a children's hospital, or done with an anesthesiologist who work with children frequently. It'll be worth it to find comfort for her.

[sheri-ct]

All 3 of my kids had/have severe reflux. It's so stressful and upsetting to see your little one in pain. Have you tried different meds? My twins did best on a Prevacid compound, but my youngest DD does best on the soultabs (and a much higher dose than the twins, which seems strange since she was full-term and they were preemies). Hope the procedure goes well and they are able to help her.

Sheri

[missgamecock]

Cate had it at 8 mos. It wasn't bad at all and she woke up smiling. She also had biopsies of her lungs and stuff done too.