Okay, here goes.
Jackson, my 2 year old, has a LONG story (don't all our kiddos?). The condensed version is that he had his 2nd fundo last July, when he was 18 months old. During that last surgery he had herniated through his esophagus so badly, that they had to narrow it considerably in order to repair it. Since 5 days after this surgery, he has had all these wretching spells. He has from time to time had trouble swallowing, etc. Over the past few months his wretching has gotten increasingly worse until our new meds (see below). So the meds make the episodes not as frequent, but do not lessen their intensity once they happen. Every single time I want to take him to the e.r. and tell them to fix him!

Today he got a piece of a potato chip stuck in his esophagus (ask my hubby, ahem, why he was eating chips). Anyway, we were at a restaurant, and it got stuck. He started gaging, turned bright red, eyes watering. I jumped up, performed the hyemelic (sp?) and had to sweep the food out with my finger. Meanwhile he turned blue. It was so terrifying. The chip would just NOT clear. I just feel so frustrated and sad that we STILL have to be so viliglant with him. The worst part was that I was there alone while my hubby was in the bathroom with my 3 1/2 year old and NO ONE offered to help me or even acted concerned.

When can I stop worrying to the point of exhaustion? He has been wretching and refluxing so much that I feel confident that his 2nd fundo is no longer in tact. What do I do?? a 3rd fundo? The gi's don't think that's a good choice at this moment, although he has said that at some point he will have to have one.

I just hate the fact that each and every illness has the potential to put him in the hospital. I hate fundos, reflux, thinking about all of it, etc!!

I just want him not to be in pain. The wretching and today's episode just totally put me over the edge. I guess this is a vent. Oh well.

Oh Erin, I'm so sorry you had to go through that. It is horrible to watch your child suffer and especially to watch him turn blue! I cannot believe (okay I can believe it but am still shocked) that no one came to your assistance during the incident. What is wrong with people??? (That is a whole other subject/vent).

Have they determined why Jackson is retching so much post 2nd fundo? Is it wrapped too tightly? Has it slipped? Have they checked? We have a similar situation (although not 2nd fundo) in that Tucker all of sudden started retching all the time. No one can figure out why, and now he's back on a pump 24 hrs a day to control the retching--which doesn't help the PO feed....but this is not about Tucker...I just wanted you to know I understand how frustrating it can be. When Tucker retched in the GI's office a couple of weeks ago, I almost gave him a prize. I kept telling the GI how bad it was, but until he saw it with his own eyes, I think he thought I was exaggerating.

Why does the GI think that he will need a 3rd fundo eventually? Because 2nd is no longer intact?

All I can say is hang in there and we are hoping that things get better soon, for all of you!

Erin, I am so sorry to hear that your son is still having so many problems at this point. I do understand though because I have been through this with two of my children.

My son who is now 7 yrs old ended up on feeding tube due to food lodging and him always turning blue. He stayed on the feeding tube for three years and is now tube free.

My other son who is now 13yrs old has his first fundo at age 7yrs and his second one done a year later. He also had many problems with food getting stuck and having to have it removed in the OR. He also has many episodes of abdominal pain and retching til this day. He also had a pyloroplasty which has not helped his dge.He has had a feeding tube in now for over five years and dont see it coming out any time soon. He is on motility meds at this time. I was wondering if your sons dge is playing any role in his retching? Also wondering have they done any monomtry(sp)studies with your son? I do know that he is so young and they are hard to do but are very benificial to finding problems with the motility of the esophagus,stomach, large,and small intestines.

My son has had motility studies done which have shown delays in all areas. I was also wondering if your doc has talked about any motility drugs that may be tried? My son is now on domperdione which is not approved in this country but certain hosptials are approved to use it. There are also other drugs that are being used such as zelnorm, propulsid(not approved but some hospitals can use) levisin. reglan,and erythromycin(sp). I do know that these drugs are not always a cure but may help.

I was wondering where excatly you are from if you dont mind me asking? If you have any questions please feel free to ask any time.


Melanie

Sorry to but in Erin, but I have a question for Melanie and it does bring me to a point with Jack!!!!

Melanie--where do you live? I would love to know which select places in the US can prescribe domperidone. Erythromycin is working for my son right now (or so it seems on most days) but want a next step incase. Reglan is not my desired med!

Another question for you Melanie and Katy if you read this--do you know if you can have a combo of delayed movement and dumping at the same time after a fundo? Katy mentioned something to me before that Noah's food would move really slowly to a certain point, then once it past that point it would dump. I know that Jackson has been dealing with dumping syndrome. I can't imagine motility meds helping the retching if he already has dumping????? I wonder Erin if foods does sit too long in his tummy but then once it leaves it dumps out. I could be in left field but just a thought. It makes me wonder about Chelsea even though she does not have the horrible retching spells that Jack has--she does reflux sooooo much but still has the runs.

I hate fundos too dear friend!!! Jack definitely needs tests done, but we will take one step at a time and breathe together:hug: !!!

Love you!

Noahs food emptys the stomach fast due to the pyloraplasty, but he backs up for days seriously right at the duedum. Then once it hits a certain point he dumps. He's mess !!!!

Carla, to answer your questions.

1. I live in PA and go to a hospital here in PA. The have been given approval to use this med. I do know that there are other hospitals in the US that are approved also. I also know that there are quite a few hospitals that due motility studies and use propulsid also for dismotility.

2. Can there be both delays and dumping? I know for Justin he doesnt dump but is rather slow through his whole system. He did have a pyloroplasty done but really has not made a huge difference in him. I do know kids that have sever dge but also dump. I also know that some kids have done much better on motility drugs with their dumping also.

I hope this helps and if you need any more info please feel free to ask.

Melanie

Hi all,
To answer your questions. Our current gi (same one in Orange County, CA that a few others on here have seen) doesn't want to do ANY tests on Jackson. Why? Well, he told us that Jackson needs to "learn to live and deal with pain." And he believes that whatever info we might learn isn't all that necessary to his treatment. I guess I am sort of conflicted about this myself. I do not want to put him through any more tests. He has been through soo much. And our almost 4 year old had spinal cord surgery in late September, so we can only handle so much at a time. At the same time, I do know that something isn't right and I wonder ALL the time about what it could be.

If we do the tests and find out what we all (including the drs suspect) that his fundo has either herniated (again) or that it has loosened way too much, what options do we have? I doubt that another fundo would do much more than the past 2 have done. It's a scary position to be in. I DO want to know what's wrong but I am afraid that we will be left w/ an uncaring dr who is reluctant to do anything about it. Does that make sense?

They haven't done another motility study since the pyloroplasty. And i am presuming that the gi's all think that dge is no longer a problem, although, you all bring up a very valid point--maybe it is. We've been on Reglan and E-mycin in the past. He had a bad reaction to reglan and the e-mycin worked at first and then stopped working, hence the first fundo!

I guess I need to find another gi doc. We've already used the other 2 in the county. It just seems so weird to me that in such an urban, child-populated area that there aren't very many docs to choose from. I just don't find it acceptable that he is in pain this much. And i need a dr who agrees with me.

Even so, I DREAD the testing. It's so tough on our family and we don't have the best support system. I guess I am just holding out for some miracle drug or something. Jackson's issues have never been clear cut. Arrrgh!!

Thanks for the advice and support. Keep it comin'

Okay, I know who you are now "new" Erin !!! It just erks me beyond belief the damn statement of the GI, saying he needs to learn to live with it !!! We have heard that same song so many times from that GI !!! Ug !!! If you can get to UCLA or even San Diego there are some great GI Dr.s there !!

Erin, I have to agree with Katy, no child should have to learn to live in pain. I really also agree about going to see a new doc and get a second opion. I do wish you luck and hope that you can get some concrete answers.

Melanie

Hey Melanie !!!! How's it going ???

The GI that told Erin that Jack has to learn to live with the pain is the same one that told Katy and me that our kids have to do the same. RIDICULOUS! He has the same approach to Chelsea as he has with Jack. I feel just as Erin does about it--it isn't right!

I think a gastric emptying scan may help put some pieces together for you Erin, maybe for us too with both my kids!

oh, I totally agree with others on everything. I am sorry your having "stuck" problems. Unfortunately that happens sometimes over here too. I think it is fairly common considering that they have it cut off practically in there so food can't get up, makes sense it may have a hard time getting down sometimes. I hope you get some help. And, I don't think Drs should be content with a child being in pain!

So sorry you had such a horrible time and no one would help. I think I would have been SCREAMING...help me. It must have been so terrifying.

I don't have any answers, it only makes me more angry and to think more that awareness is so important. It is so hard to raise awareness b/c most believe "it is only reflux, they outgrow it"..

Our story will be in the May issue of BayStateParent here in MA and I would love to have a listing of all the kids that have had numerous fundo's. Can anyone help me with this?

Maybe when you go to the doctors you can ask them? E-mail me at
Jean1215@comcast.net

I will post my idea somewhere else to.

Best wishes
Jean