Hello. I have a 3 month old sweet baby girl who has some serious, mysterious neurological issues. She will be having a fundo and G-tube placed on the 27th and I am so scared for her. She has already endured more needles in her 3 months than I have in my 27 years probably. She will also be having a nevus (mole) removed and a nerve and muscle biopsy that day as well.

Her reflux doesn't come OUT, only up and it is so sad to watch her deal with it. She will arch her back, cock her head, change colors in the face, swallow over and over, then cry when the episode is over. It has made her breath SO bad. She has these episodes ALLLL day long.

She doesn't suck at all anymore, so she currently has an NG tube in. Her weight is fine now though, thanks to the Ng tube. She is 12.5 pounds.

The docs tell me that neurologically impaired children usually have severe reflux and it lasts a long time, as opposed to other children who may grow out of infant reflux, so the fundo is what is really needed for her, asperation is a huge concern.

Well those are the reasons for the g-tube and fundo, but I am so sad that she has to go through all of this! Do you think with her being only 3 months, it will make a difference positive or negative on the fundo?

Thanks.. Sarah

Hi Sarah,

Welcome! Thanks for sharing some about your daughter. I hope the fundo helps you guys out. We had it done when our son was 2 1/2. I have heard that when they are done at younger ages they may need a redo as they grow so that is the only negative from having it done younger. Usually you wait until the age of two atleast for the fundo but in your case it sounds like your at a point now that it is needed because of other problems. Let us know as you go through this any Qs you have about the surgery pre and post op! Best wishes! Be prepared for some wretching, it is pretty scary so just be prepared for it :D If your child is NG tube fed it may not be so bad. Does your daughter take anything orally?

Hi Sarah:

Welcome to the site...I have a granddaughter Ciara and I am sure it is pronounced the same as Kira. What a pretty name.

So sad all the suffering.

We may not be able to fix your daughter, but we understand.

Best wishes
Jean

I would like to welcome you to the board. I am so sorry that your little one has had to deal with so much. I do wish you luck with the surgery and hope that it is an answer to her reflux. I have three children that have had to have fundos do to their reflux. You and your daughter will be in my prayers and thoughts.


Melanie

Welcome aboard, Sarah! I've never heard the connection to neurologically impaired children usually having severe GERD that lasts longer, but that certainly would explain why we're still dealing with it after 3 1/2 years. Thanks for the info. and good luck with the upcoming fundo!

The mention of neurologically impaired kids is under GER vs. GERD.....I have heard that line so much I am sick of it, b/c I think they are using that as an excuse.

Poor Roni was sent from the neuro and back to the GI and then to the neuro again, etc...........in the end neither one helped, Shae still suffers from GERD.

I am so sorry to hear about your baby needing the fundo. As I have no experience with the fundo, I can only offer support and lots of {{{hugs}}}

I would imagine that the neuro link would make the GERD worse or to last longer as Jean indicated.

Here is the link to that topic:

http://www.infantrefluxdisease.com/gerdinfo.htm

Please do keep us posted and if you can, put the date of the fundo on our calendar so that we can think of you and your baby on that day.

Sounds like we have a lot in common. Sam had a fundo and g-tube placement this summer. He is doing fine now. He also has some undiagnosed neurological problem. He has been worked up for everything and it is still a mystery. He is developmentally delayed--I would say he functions at a 3 month level and he is 9 months old. I know that something else is the root of all his reflux problems. Now we just play the waiting game. Not having a diagnosis is harder than knowing that there is something wrong for me. Good luck with the surgery--feel free to e-mail me with any questions.

Now we just play the waiting game. Not having a diagnosis is harder than knowing that there is something wrong for me.
I'm with you on that, Amanda! After 3 1/2 years, we're still waiting for the diagnosis that is not going to be. Perhaps the science of the future will give us some answers...one day.

Thanks for the responses!

I know what you guys mean about wanting a diagnosis, BUT for me, I am scared to death to get one. I would much rather not have her diagnosed, and watch the Lords Miracles on her. I have had a few specialists tell me they are concerned for her lifespan because of her severe symptoms, even though they don't know what is wrong. She doesn't open her eyes, she doesn't babble or coo, she doesn't move much or respond to much. She CAN move her limbs, just doesn't very often, she does startle to loud sudden sounds, but not really to anything else. She appears to be sleeping ALL day long, with mixed tone, sometimes her limbs are very tight, other times, her whole body is as limpa s a soggy noodle.

I am SOOOOO afraid of this surgery for her.. she is having so much done that day, it will be the 27th.. but I will find the calendar and mark it too.

I don't know wbout the Neurological link, just going from what the Neuro & Gi doc said... so I am off to look at that link......

Wow, I will keep you guys in my prayers!

Hi Sarah,
Just wanted to say hello and welcome to the boards... I have no fundo experiences, but other ladies here have great advice. I am sorry that things are so rough with diagnosis and treatment of your little one. Thinking of you! Lots of {{{HUGS}}} :)