I posted on this site when my DD was 2 now she is almost 4 and we are going down hill again. I hope that there are no posts on this thead because most children grow out of this horrible problem. Savannah has stopped eating again. Wait I have to take that back, she went 12 days w/o much food (so little that you can almost say it was nothing). We were told my the DR's to take her off of her bottle (she will always have a bottle of milk). She has not had much to drink since. Last night she went to bed at 9pm she woke at 9am and didn't have to go pee until 1pm. to me that is close to dehydration. They are forgeting that the "when she is hungry or thirsty she will eat or drink" thing does not apply to her. Is it me that is not moving forward or are these ped's forgetting who we are talking about. Yesterday I put her in daycare for the first time. It was suppose to be for her own good and help her eat w/o presure. Well it worked while she was there. She ate. But when we got home she wouldn't and today she wouldn't. Her past history is "everything works for a week". So My hopes aren't up all that high. I am greatful for the calories she did eat. We are being told to start all the testing all over again to see how much of her eating disorder is reflux related and how much of it is eating disorder ( control issue). We are also suppose to get her started in an eating disorder program. I don't want my dd surounded by food issue.

Small confession - ironically I am a recovering anerexic. I have been told that my issues and her's are not related. Can you believe my Dad told me "now you know how it feels" Any way, when I was in a program I fed off the attention and used others stories to further my own wieght loss program. Not to mention. She was in a feeding group and it didn't help her to be around others that don't eat. She has always done better with "normal" eaters.

How could this have happened. We have done everything we were told to do. We have made choices that we thought were the best ones and now it is turning out to be the wrong choices.

We worked to keep her off the tubes but we created a severe eating disorder. We choose not to have the surgery because we were hopeful she would grow out of it, but she is still in pain.

The last few nights she has had bad night sweats. Now I worry that something else is going on because of the lack of food. I don't know if I can live much longer with so much heart wrenching worry. Four years has really started taking it's toll on me phisically, our family, my marrage, my poor dd's outlook on food, she is grumpy because she is so hungry, I hate to see her so misserable. There is nothing I can do to help her. She just doesn't get if she eats she will look at life with much more brightness. I know that it will hurt but with food in her belly she will deal with the pain better.

Yesterday I even hoped for a short second that I would get hit in the head hard enough to knock me out for a couple of days. I just don't want to think about this for just a short time. I couldn't even go on vacation because I was worried the whole time that she was not eating or she would get ill. Now there's yet another issue. If she get's sick we always end up in the hospital and now they say there is a strain of flu they have no vaccine for. one more thing to worry about. I know that I am just venting and everything will be better after a bit of sleep. I just want to protect her so bad and she choose the one thing I and no one can help her with.

One other worry that has haunted me for the past few years is the potential for long term damage all this malnutrision is going to cause. I am worrying already about her when she is 21. You see now why I want to be hit over the head :roll:

Well, thank you for taking the time to read my book

Thanks for your support yet again.
Sue
Savannah 1/12/01
Connor 7/2/03

Hi Sue!

I'm sorry to hear that things have been so tough again. My son, Evan, is 2 1/2 yo. now. He gets the night sweats from time to time too. He can also live on next to no food for days when he's not feeling well. I can't believe that the doctors have told you to take Savannah off of her liquids so that she'll eat. "They'll eat when they're hungry" may work with most kids, but now with refluxers. We have days where Evan just lives off of his soy milk with the added protein powder as his only nutrition. It hasn't happened for a while, but with winter coming, it's probably only a matter of time until he's sick again (touch wood).

I hope things start to go better for you both soon! (((HUGS)))

Hi Sue,
I didn't have an older child with reflux but my heart goes out to you. I am sorry that your little girl is struggling so. I too can't believe the doctor told you to stop the fluids. My son is not much of an eater himself(he had reflux when he was younger but outgrownow myddhas it)and my dietican for him say let him have his milk.

hope things go better soon for you.

Zapsmom

Do you think they are telling me to get her off the bottle because of her age. When she was two they told me the opposite. Do you think we should still persue a tube? I now think that it was a mistake to try it without one. read all your posts and I think we made the wrong call and all the aversions are due to the "having to eat" and being forced to eat. I don't think she had the best care and what I learned and I hope that all of you learn from me. Get many many opinions and brush their little teeth.

HI- SUE

I have been a member for a few months now but been soo busy I have not been able to read a lot of the stories but I finally made time. I have a 4 year old son who has reflux and a g-tube still...... we also where thought that he would grow out of it but he has not yet! A quick summary.... He has had feeding issues from day one not eating, no weight gain, reflux ect. When he was 2 he has a fundo which I have to say has helped somewhat with the reflux but not as good as the doctors hoped. He also got his g-tube put in at the same time, and at that time the doctors said don't worry it will just be temporary now over 2 years later he still has it in and part of me thinks it has made the feeding issues worse. He still hates to eat and will go days without food and the only thing he drinks is apple juice and OJ. When he does eat usually there only nibbles here and there. I think he has become dependant on the tube and he thinks now he does not have to eat because he will as he says eat though the tube and also I wonder is it a "control" thing, But I don't want to take him off the tube because that the only way he gets his calories and vitmains ect. His doctor decided to out him back on a medcine to increase his appitate which we have tried before but had no results but this time have seen results!!!!! For the first time in 4 years he is saying he is hungry and will somtimes eat more than nibbles. I question myself about the feeding tube the control issue and also worry about how long can he go with out eating if the tube comes out. But as you know it is a roller coaster all the time one week its good and the next one is bad! Have you looked into any feeding disorder programs? what are your feeling on that because my son's doctor said he does not feel that it is needed at this time that "he will come around" but of course no one know when or why he does not eat.

Hope to hear back from you soon.
Good luck and hang in there.

Kellie

"new from boston"

I am sorry that you have been dealing with this longer then I have. I have not found anyone who's child is older then early three'ish. My DD will be four next week.

Sorry it has taken me so long to get back with you. I moved and it took me a bit to get the computer up and running. Just as an FYI, not a good idea to move with a child with eating disorders :roll:

Your DS sounds a lot like my DD. We didn't go the tube rought because they told us it would cause all the eating problems. Well my DD not only doesn't eat, we don't have any way of getting nutrients into her. So don't beat yourself up for going the tube rought. In my experience they will have an eating issue either way. I don't think that there is a right answer with this issue to tell you the truth.

DD is on 15mg of previcid a day and it worked great for about two weeks but now she's back to eating once in a while again. We just got the results back from the biopsy's and it showed inflimation in the asophagus (you would think by now I would know how to spell that) and inflimation in her stomach. We go back to the GI next Wed to talk about the " next step".

We have been going back and forth with the fundo and still am having a horrible time makeing up my mind if we should have it done. I wonder what made you decide to have it and what was it like for your DS. My DD started with the problems from the get go pretty much. She was six weeks early and had difficulty getting a full feeding. When she got big enough for a full feeding the whole thing would come back out. We were feeding her three and four time a feeding if we even gave her a CC to much. Then when food was introuduced we had to mesure how much milk she had and how long it had been since she drank it and feed her a specific amount or that too would come flying across the room. We could always tell when she was going to get a cold because the reflux would alway get worse the day before a sniffle even started. about 6 months she decided that food was the bad guy and she started to refuse food. That escilated until we have what we are dealing with today. Just a little background so you can tell if your DS was worse off the my DD.

We went the therapy rout for two years. It helped with the sensory intergration. She didn't put food into her mouth until she was two so if food when near her mouth she would gag and choke. It took about two years for us to get her from touching food to licking food, to puting it in her mouth, to chewing it, to swallowing it, to puting more then a pea size bit in her mouth and chewing and swallowing. We are now talking about an eating disorder program. There is one in Dever that was recomended but she wanted us to check allergies and the severety of the reflux pain. She said there is no point in going through the therapy when the pain is still there because you will just keep back sliding. The problem has to be controled first.

Thank you for writeing me. Today I needed a comrad.

Sue

Sorry for the miss spelled words, my computer is being very tempromental and I don't want to chance spell check. It just might shut down on me AGAIN :twisted:

I am sorry that you have been dealing with this longer then I have. I have not found anyone who's child is older then early three'ish. My DD will be four next week.
Sue,
Just to encourage you, there are a number of parents on these boards with kids that are 4 and older. Roni, the site administator, is one of them.

Also, a great big early :sunny: :occasion: to Savannah!!! :occasion:

Hum, Janette, that may discourage her... :lol: .

Seriously though, it's nice to see you back Sue. Am I correct in reading that she is on 15mgs of Prevacid a day and still has esophagitis (inflammation)? Sheesh...that's not good news :? . How has she been feeling otherwise?

You always have comrads here, please feel free to post anything, anytime, that's why we're here! We want to hear from you and everyone else.

Hum, Janette, that may discourage her... :lol: .
Yikes...I didn't think about it being taken THAT way... :lol:

Roni- I didn't know your kido was older then mine. I guess I should pay more attention to the ages of my DD kindrids :wink:

Well I didn't reolize it was bad news that there was inflammation. I was just thankful there was no irrotion (sp?). So what do you think the Dr. might say then? Her apt is Wed.

My Father told me that I should take all her toys away because she isn't eating and when she eats she can start having them back. He says that he thinks we should start "tough love" (thanks Dr. phil for putting that in my dads head) because her eating disorder can become life threatening if it turns into anorexia. I agree that it can come to that but I am at such a loss about what to do about it. I can tell that some of her issues are control and she has found that she gets attention and is talked about when she doesn't eat. But because all the tests are comming back that she is still hurting, at what point do you start saying enough is enough and force her hand to eat. She, most likely, will never get better. When and how do you teach them to deal with the "cronic illness" (can it be called that? It sure feels like is should)

On a brighter note, my DS is going through a growth spirt and ate all day. I noticed that DD was eating right along side him. When she was a baby I would feed her every hour and a half. But with the fight getting worse and worse we have been sticking with the three meals and two snacks. I wonder if we should go back to feeding her offten. It might give that pesky acid something to do other then inflaming Savannah's poor insides. So she ate more today then she has in the past 5 days. yippee!

Sue
Beautiful girl 1/12/01 (refluxer)
Beautiful boy 7/2/03

Yep, Shae will be 5 in May...still tube fed, still refluxing.

With all due respect to your Dad, I tend to disagree with him. She is not, not eating to be bad or misbehave, she is only trying to protect herself. She has learned that to eat means to be in pain...one can hardly blame her for not wanting to.

You can't feed her need for control with it though, some how you have to find a way to not give her the attention when she doesn't eat. I know the instinct is to stand there and try to make her do it, but I think you have to do the opposite. Try to make it fun, get special toys that she is only allowed to have at meal time. When she takes a bite, she gets to play with them for a minute. Take the toy after the minute and persude her to take another bite, with the promise of more play time if she does. If she refuses, take the toy and leave the room for a moment (giving her no attention as you do it), she will likely agree to take another bite if you come back with the toy. Always stop the minute it stops being fun or that either of you start getting frustrated.

And, as exhausting as it is, feeding less more frequently is definitely recommended with refluxers.

Glad your DS is at least a little easier to manage, in this regard anyway.

My Father told me that I should take all her toys away because she isn't eating and when she eats she can start having them back. He says that he thinks we should start "tough love" (thanks Dr. phil for putting that in my dads head) because her eating disorder can become life threatening if it turns into anorexia.
Sue,
If it helps your daughter to eat, I would definitely go with more meals and snacks during the day. As for your dad's suggestion...As the parent of a refluxer, I would have to strongly disagree. Yes, it's possible for it to become a behavioural issue, but punishing a child for being unable to eat because of the pain is not, in my opinion, going to help the issue.

My Dad has writen a letter to Dr Phil. :roll: . Part of me is hopeful that he will have, yet another suggestion for us to try. But the other part of me is frustrated because I know that my dad doesn't agree with how we are handeling all the issue.

We have tried the play therapy and that only makes it worse because she plays instead of eating. She truely doesn't care if we take things away from her or make meal time fun if it means she has to eat. We have even started doing cheers for every bite. Things will work for a few days, if that. We have not found anything to be worth eating some food. :cry:

She is now acting very depressed. She crys all the time even for no reason. We now have a cry chair and when she crys for not reason I place the chair where ever I am and she can't get down until she is done crying. Today she started crying because "Connor said I can't color good" (Connor can't talk, he's just a baby) But she cried for about 10 min. I am getting ready to pull my hair out.

DH just walked in so I will talk to y'all latter.
Sue

Hum...honestly, I wouldn't trust even Dr. Phil's advice on this one. I'd bet my life that not even he knows enough about reflux to give sound advice. Why not send your Dad this way...we'll have a talk with him.

Believe me, I am all for tough love, I believe in boundries, rules, and respect for ones parents above all else. Shae has even had toys thrown in the garbage on her and has missed nursery school (that one punished me more than her I think :roll: ) before when not behaving...I am no push over. But this is different. This is not something she should be punished for, there's just no discussion about it. Send your Dad to a feeding therapist to discuss the issue, they will concur...this is not an issue to punish over. I really can't stress that enough, you are absolutely right not to. It's only going to increase her negative thoughts towards food and make her that much more upset over the whole process.

Also, has she ever been treated in an in patient feeding therapy program? I don't mean for an eating disorder, that implies anorexia and the like...this is different, I mean a feeding therapy program. Where people who actually specialize in getting children with reflux and similar conditions to eat? The problem is, if she has inflammation in her esophagus, she is still likely in pain from her reflux and you are right...it's very difficult to address any types of feeding issues when they are still dealing with pain.

Inflammation in her esophagus, would in itself, be irritation...I mean, something had to cause the inflammation after all.

There is a wonderful website on feeding issues in kids, I found it years ago when first dealing with Shae's. It's at www.new-vis.com and I just love the woman who runs it. She has written a ton of articles on all aspects of this under the feed your mind section that are awesome.

Thank you for the web site. I havn't found anything on the eating issues. I would love to read what they have to say.

I haven't tried the feeding therapy yet because they lady who runs the program told me not to try it until she is no longer in pain.

Well if Dr. Phil does contact me. I will refer him to you, Roni. I think that if he will put this on his show more research will be done to help these suffering children and maybe direct those who don't have the diagnosis yet. I think that we wouldn't have had this hard of a time had we had the diagnosis well before she was 9 months old. I don't know if you knew that she was diagnosed with cloic and undefined failure to thrive at first.

Sue

If Dr. Phil calls you and there's going to be something about reflux on his show, I'm sure that I'm not the only one who would like to know the time and the channel. (And I haven't even watched Dr. Phil once. My dad talks about him sometimes though.)

It must be an old guy show. I've seen it a few times. Some of the things I agree with but that's because it's common sence and some of the things I thing he is useing sensationalism to get rating. All in all though I think he's a smart guy. If he dose do a thing on reflux kidos I hope he does his homework because the "tough love" (according to my Dad he calls it something else though) is usually what he go by.

Ya, that doesn't surprise me at all....most kids are diagnosed with colic...makes me so angry. I really don't think I'd do any eating disorder groups at all...stick with the woman that said to come back when she is no longer in and pain and deal with getting her pain/reflux managed in the meantime. I know, easier said than done.

Sure, tell Dr. Phil to call me when you talk to him! :lol: :lol: Actually, that's not funny...my mother has contacted Oprah so many times I told her they were going to have a restraining order put out on her soon. :smt046 Of course, no one ever calls back...they don't care b/c it's just reflux and the kids outgrow it. :evil: :evil: :evil: Then again, I'm glad they don't call b/c as much as I want the publicity for the disease, I'm not going on national tv :oops: :oops: :shock: .

That's so funny. I don't think I would go on national TV either. But as my dad put it. You would get the best of the best to help with the issues. And it would all be paid for. Savannah is getting so expensive. Previcid is not covered by our insurance. they want her on one that is not FDA approved for pediatric use. I thought Dr Brokway was our Doctor, not United healthcare. Every therapy apt cost $20 and at one point she was going three times a week. Well I am sure I don't have to tell you all this.

I wonder. Kellie (I think her name was) went the tub rough and you went the tub rought do you think that it would be a good idea if we started that dialog with the Dr. at DD age? I am feeling like we made a mistake in fighting to keep her off of it AMA.

It's such a tough call b/c it's like, you do the tube b/c of the feeding issues, but the tube can also make feeding issues worse. It's definitely a double edge sword. Of course, that's coming from a woman who's daughter has been 100% tube feed dependant for almost five years.

It might be worth just bringing up with the doctor though, I mean, if her eating is that bad that her health is going to suffer, stop fighting with her over it. Ask the doctor about over night feeds. That way she can eat what she wants through the day and you don't have to worry about her not getting the nutrition she needs b/c you can make up for it through the night. No more stress or battles over food.

Now, of course it's not that simple b/c she can't live like that forever so you would need to work on getting her off the tube at some point and there's the risk of aspiration that comes with the tube, the risk of the reflux getting worse, the risk of her oral aversions becoming worse from inserting the tube, etc, etc...

It's not a perfect answer but might be worth discussing.

Hi,
I am sorry that everyone is/had a rought time with the feeding and reflux. I am so thankful for our feeding specialist that saw Zoee when she was 11 weeks old because there was talk about the feeding tube for her as well. This feeding specialist step right in and went to work. That is why I am :shock: that that woman would tell you to wait till there is no more pain.That is why she needs the help. To make the pain stop and so she can eat. I am frusauted for you. I hope that you can start with a feeding specialist soon.

As for Dr. Phil, I watched him once and once only because I feel he was too much in to "tough Love". The sho I watched had He agreeing that a woman should have had her child taken away for the child being Obesity. The Child was taking out the home because he had a weight problem and they (Dr.Phil as well) blamed the mother. I was :evil: when I was watching this guy let this woman who is in tears that she was abusing her child because he had a weight problem. She was trying to help the child lose weight but it was not working. Sorry I am going on and on. :oops: :? I guess you get my point. I would be worried up he would say about my little girl weight....23lbs at 7 months.(I am questions the docs about it right now. I know tha tshe is the opposite of reflux babies and that is why no one believed that she was having feeding problems, that is any story) Sorry I am rabbling again.

Hope things improve for your DD.

Zapsmom

I agree about the Dr Phil thing. Every episode I've seen he has seemed so black and white. Unfortunatly for all of us, his black and white approach would work for only two weeks :lol:

Zapsmom - What did the feeding specialist do for her at 11 weeks that made such a differance??? What is making such a differance now that she is eating so well??? My DD went down hill fast at six months with the not eating.

I hope everyones week-end is going well
Sue

Hi Sue,
To answer your question, I am not sure. I know that every specialist at the hospital asked that Dr. Remple would be the one to solve Zoee's problems and she did in 24 hours. She did the Swallow, and another test(x-ray) that show that Zoee's windpipe would collaspe when she was sucking. She got her on the right thickrning that she did. Which for Zoee was 2Tbsp/ounce of rice cereal. She worked with us. She answered my questions even gave us different formula to try without us buying it. I think it was the support she gave. She gave Zoee the attention she needed as well as us. I must say that alot of Zoee's problem was she just needed to out grow or grow stronger in some ways. I think it help that Zoee was always a great eater even when she was turning Blue and gagging anf choking.She was a silent refluxer. I am rabbling again. :oops: Sorry I just loved this Doctor so much foir the help she gave us. Zoee is finished with her now but we can still call if we need her. I think we will be calling about Zoee's weight issue soon.

I wish she could help every one on the board.

Zapsmom
Shannon

Sue,

The feeding specialists that worked with Evan were an occupational therapist and a speech language pathologist. They came in and worked with us in our own home and gave suggestions on how to desensitize Evan--everything from sensory toys from the dollar store, to the Nuk brush being rolled on his hand, to having a good foot rest in order to eat (he was still in the high chair at that point, and the foot rest only worked for a couple of weeks), to using an electric toothbrush on his hands, arms and legs.

If you haven't looked into the possibility of using a feeding therapist/specialist, it may be something that you still would like to investigate.

We did OT for two years. There she went from not eating at all to eating anything you put infront of her. ONE BITE of anything you put infront of her. Or She will put it in her mouth and wont swallow. We did have a great OT. She did wonders with sensory intergration (sp?). Savannah would see food and gag but now that part of her problem seems better. We just need to get her to eat and eat more then one bite. The sensory are gone but because there is still pain she doesn't want to eat. I had a really bad case of heart burn a while back and I didn't have an appitite. I can't imagine having that every singel day.

Savannah's got two issues 1) her asaphogus doesn't close all the way and the stomach is either to acidic or there is to much acid. I don't know whitch. I think if we can figure out what organ is malfunctioning (ie: which ever organ creats the amount or which one creats the acid level) we can at least work on that to make her more comfortable. ( I don't know, just a theory I came up with) Has anyone ever researched this idea?

Unless we do surgery there is not fixing the asaphogus so the only other option we have is to work on the acid part.

Sue

The act of acid production in the stomach is rather complex, I get into it a little bit on the medications page of the main website (http://www.infantrefluxdisease.com/medicines.htm#h2blocker) but haven't gotten into the entire process, yet. I do plan to add more info on how the digestive system actually works but that's a plan for after I finish adding the info I want to on reflux, etc.

The proton pump inhibitors, and to a lesser extent the h2 blockers are made for controlling acid levels in the stomach. Currently, these are the only things you will be able to find to treat that issue, as far as I know. Motility meds are supposed to work to help coordination and strengthen the LES but we've never had any luck with them actually doing that...otherwise, the only thing available to treat the LES problem, like you said, is the surgery, which as we all know, doesn't really solve the problem. Pretty grim realizations, I know. That's why I work so hard at what I do with this site, the book, etc. It has to change.

Well could there be two issues? One with the actual ph balance making the acid more acidic then tolerable and the other producing to much asid. They have the meds for the to much acid (ie previcid, pepcid, prilosec) Now is Prevecid an H2 blocker?. And then you have to ask, what organ makes up these two factors. Could one of the organs be overactive. In turn causeing the ph to be to low or there to be to much of it.

Since Savannah is on a good dose of previcid the to much may not be the issue but the ph level might be her problem.

Can you tell I stay up daily looking for other angles. It's now 1am. Her apt is tomorrow. I am so nervouse. I keep thinking they are going to tell me something I am not willing to do or tell me the same prognosis I have heard for four years (as of tomorrow :angel13: ) Hummm I don't know.

In looking for the angle face I found a great mascot for this message :blob6: or :smt078. Remember it's 1am

Sue

Well, histamine binding to the receptor cells on the stomach lining is one way acid is produced and there are two others, can't remember exactly right now...they are similar though. It's produced first in these cells, the three different ways and then all of it is pumped out by the proton pumps.

No, Prevacid is not an h2 blocker, remember, h2 blockers block the action of histamine which is only one way acid is produced. Prevacid stops the proton pumps from pumping the acid produced from all three sources, making it a proton pump inhibitor.

Has Savannah ever had a ph-probe? Even if she had a problem with too much acid or it being too acidic, the PPI's should help quite a bit with that. Her LES still has to not be functioning properly for it to cause a problem. I would think that a ph-probe could tell if it was too acidic...don't know how they'd go about diagnosing too much acid?

Well we had the apt. They said exactly what I was expecting. They are pushing for the surgery. The surgian said he wishes she had the surgery a couple of years ago.

They gave us two options. 1) no surgery and her teeth continue to deteriorate and she will have to go to feeding therapy to deal with eating even though there is contiuing pain and we would have to up her dose of parevicid to 30mg. And that still my not work because he suspects that she is having a lower stomach reflux because at 15mg she should not be having the inflamation. He said that lower stomach reflux is were they actually reflux the bial and prevecid does nothing for that. He also said that bial reflux is more damaging because it is thick and slimey and will stick the to the tissue longer then acid would. He thinks that her asophagus is wide open and if the surgery is not done her condition will not improve. The surgian was very good looking but he seemed like a sales man. He had a lot of good things to say and he made us feel that surgery was the only way and that he should have gotten her when her teeth started to break. He feels that our peds. were incompatant for the series of tests Savannah went through that came back bad and nothing was ever done. not even a GI referral

I am mad about this on so many levels. First I was told that there was a sphinkter and that was not closing. That her asophagus was "under developed" But according to the surgian. It could be anything from a lazy stomach to the asophagial tub not being long enough. I just don't feel that I was given the all the information to make the best decitions. they also said that she would have been a good candidate for a tube when she was younger. They are checking her nutritional levels (which they have never done before and I didn't know they could even do that). If they come out abnormal they want to re-visit the tube option for her for a short time just to get her numbers up. But he expects that they will come back normal. They said that our peds kept her from the GI for to long. She was not diagnosed early enough, her wieght gain and lost issues where not taken seriously enough by the first GI and by Chidren's hospital. We were not informed on things to look for what might happen next. I am so sick of doctors saying "hummm? I don't know". These ones did say that but they are saying the next step is surgery. So what happens after surgery? What if she doesn't get better will they say "hummmm?" as well?

How can I make this decition? If we do it, it is a "rest of your life" decition and if we don't do it, it is a " rest of your life" decition.

I say to my self " ok lets do it" and then the pit of my stomach says what if she gets one of the "only 3% chance" side affects. What if she reacts to the anostitia. What if they make a mistake. I can't bare to imagine someone poking a knife into. what if she dies. Then I say to my self "we can't do it" and then I imagine what her adult teeth will be like. her not enjoying food, her being in pain daily, her having life long effects from the lack of food. Every day that goes by she is developing on very little food. That has to be doing something. maybe not now but in the future.

The surgian was so confident that this was the next step and there was a 94% success rate. And he was going to change her life. oh I have a head ache.

Then there's my DH. He is not help at all. We can only talk for a couple minutes at a time because he is so hostile to talk too. Every time I try to talk to him about this, he will argue that I did not hear what the doc was saying. And it's over things like the color of the smoc she would were in the hospital, where exactly the insitions will be. Small stuff. I'll tell ya, he has turned out to be one of the most difficult people to be around. I think he got bit by the grumpy bug. He is an angry person, he can't even sit next to Savannah while she eats because he gets so frustrated that he will punish her and talk mean to her if she doesn't eat or eat fast enough or doesn't swallow her food. Consistantly, I have to intervean at meal time. Not to mention he yells at my 13 year old dog for wanting to go out to the bathroom. I don't know I just may be so stressed that he seems mean and I'm just blowing things out of perportion.

Well thanks for the vent ladies
Do you have an opinion on what you would do if DD was your child?
Sue

Oh Sue...I'm so sorry that you're having to make such a huge decision and without much help from your dh. ((((((HUGS)))))) Has he given you any indication of his opinion about the surgery?

I can totally understand your many levels of anger. As parents, many of us here have gone through that and are going through that. As you probably already noticed, yesterday was my turn to vent. We all need to do that and this is a safe and supportive place to do just that.

You asked what I would do about the surgery decision. That's such a huge decision, and I honestly can't say what I would do if I were in your shoes. Will your husband support you either way? Children's health problems and big decisons like this can be hard on a marriage. Hang in there. Keep weighing the choices and go with your "mom's gut". I'm sure you'll do what's right for your daughter, and we're here to support you either way.

Oh Sue, I'm so sorry you have to make this decision and that your DH is being so-for lack of a better term-rotten.

Are they planning to do a G-tube with the fundo?

I totally understand everything you are feeling and fearing about the possibility of surgery because I felt it when faced with Shae's jejunostomy. I can't tell you what decision to make for her but I can tell you how we decided to go ahead with the jejunostomy. Thankfully, Shae's GI and surgeon are much more realistic about the success rate for the fundo and never really pushed it on us. When she got at her worst, the next step for Shae, they told me was the jejunostomy, not the fundo (although the possibility was very briefly visited, we all agreed no). I had all the same fears. What if she dies? Realistically we know the possibility is unbelievably low but it's still a possibility. What if it doesn't help and she was cut open for nothing? What if it fails and needs to be re-done? Was I ready to accept the tube feeding as relatively permanant? Etc, etc.... I couldn't bear the imagine of them cutting her little tummy opened and it haunted me as much as I tried not to think about it.

Thankfully, I credit Shae for making the decision for us. Shae was at her worst, had the NG tube and was throwing up every half hour or so all day. At least every second day she started actually throwing up the tube, the end was still in her nose but the other end that was supposed to be in her stomach would actually come out her mouth with her vomit. We temporarily had the NJ tube inserted while we made the decision for surgery. This is the one that pushed all the way into the jejunum which is the second part of the small bowel, the radiologist told me she couldn't throw that up. Two days later she puked up her NJ tube!! All the way from inside her jejunum!!! It was bedtime when it happened so we decided to leave it out for the night and see if she got hungry and would eat anything. I tried periodically through the night to feed her with a bottle and she screamed and adamantly refused the bottle at every attempt. We went to the hospital first thing in the am to have it reinserted (no, I wouldn't do it myself). By the time we were actually seen by the doctor over 17 hours had passed and she had refused every single attempt I made at feeding her...right up until the moment before he reinserted the tube. Not one drop of food or liquid for over 17 hours and the only time she cried or was upset over it was when I would try to give her the food. I was terrified that was getting dehydrated and she had never been happier or felt better.

I called the surgeon's office to schedule the surgery that very day. All my fears remained, but I knew I had no other choice. I have not looked back since and that surgery was the best thing that happened to her.

I guess what I am trying to say from all this is you have to decide based on your gut, watch her, you know her best. Can she continue like this? Can you continue to watch her like this? Just be realistic about the possible outcomes, she's not likely going to be totally cured by the fundo, it's not a cure, but at this point would even the chance of some improvement be worth trying it?

Best of luck with your decision. I know it's a huge one and am convinced you will make the right choice, whatever that is.

<<<HUGS>>>Sue, Sorry that you have a hard time with your daughter to have to make a hard decision. Mommy's instinct are always to the BEST. As for my husband, I can relate to that. My husband to this day still will not see that Zoee has/had problem with reflux. He at times, think that she is a cranky baby when she is a very calm baby. He couldn't even visit her at the hospital when she was in for a month. He doesn't even like talking about it at all. He was the same way if my son when he was sick with reflux and RSV when he was 4weeks old only he had a little more patience and was just scared about having a sick baby. I think that men have the hard time with all of the little refluxers' problem because they can't fix it.

My thoughts and prayers are with you and your family. Good Luck.

Zapsmom

Sue, you must be overwhelmed by making such a huge decision and not having a supportive husband. I know I'm just parroting everyone else in saying that you need to weigh the chances of the surgery being a success and how life will be if you decide against it.

My 13-month-old son has had three surgeries. However, they were not reflux-related and absolutely had to be done, so we didn't have to agonize over making such a tough choice. No doubt, handing your child over to doctors is a horrible feeling, but Daniel always healed well and his quality of life is better because of these surgeries.

Becky,

Were all three surgeries related to the cleft lip and cleft palate? Also, did you ever get a chance to chat with my cousin about the surgery?

The first surgery was a PDA (pulminary ductus artery) ligation when Daniel was just a month old. The PDA is a valve in the heart that closes at birth in term infants and generally closes with medication for preemies.

The other two surgeries were to fix his lip and palate. And I never did hear from your cousin. How is the little one doing?

She's doing amazingly. Thanks for asking. She had the cleft palate/lip surgery back in the fall. It went really well, and she looks like a different baby now. I doubt that there will be a whole lot of scarring, either. Did Daniel have scars left?

Sorry it took so long to write back. My computer finally kicked the bucket. Now I have a bright new screat and it hasn't shut down on my all morning :lol: .

Well my dh is so besided himself too. He shuts down and we just can't talk about it without him attacking me and my thoughts. We did have a break through though. He talked with a friend of his whose son had the surgery 9 years ago and she said it was the best thing she ever did. So he was open for a short disscution. All I can get out of him is he is leaning toward the surgery but he wont say yes or no.

I keep going back and forth. When I can't get her to eat I am convicted that it is a good thing. But then I think what if she has life long complication or worse!!! and I go into a major anxiety attack and can't breath. I finally had the doc perscribe me something for anxiety so I can sleep.

Have they talked to you about the sergury for your DS? If so why didn't you go that rought? I couldn't find Shae's story and I didn't remember if she had doen the surgery and it didn't work or if they chose not to.

I just keep going beck to what my Dad said. He is a lifer with reflux and he said that if his parents had known about a surgery when he was a child he would be angry if they didn't do it. He doesn't have any of his teeth anymore. They are all capped. He was "in a lot of pain his whole life and it effected most of life experiences".

We also found out the Chidren's Hosp. in Phili was the best for this surgery. Than after some research one of the best at that hosp when to Childrens in Colorado springs. When I as his name it ended up being the same guy we spoke with at Pres St looks in Denver. Through some life canges of is own he moved around a lot and not only ended up at the hosp. our doc uses but is the chef surgeon. If the surgery is what we choose I think that was devine intervention.

I am sorry you had such a bad day the other day. I hear you. Are things brighter today?

Again thank you for responding and leting me talk though this.

Sue

Good luck with your decision, Sue! I'm thinking about you!

Hello,
My son Eli is scheduled for the Fundo and Pyloroplasty. I have gone through the same thing (accept hubby is very supportive). I know how hard it is, we are still going back and forth over the decision we have made. But, we have decided to look at it positively and trust that the Lord has put us in the right place. If you want to talk or anything just pm or email me. I would be more than happy to talk with you.

Best Wishes, I know the state of mind your in, its almost like temporary spurts of insanity.

Erin,

When are Eli's Fundo and Pyloroplasty, and have you added them to the calendar?

is posted under the fundo section, it is February 11th.

Sorry, I must have missed it. There were a few new posts that vanished when my screen renewed. Would you mind also adding it to the calendar, so that we can all remember you and Eli that day?

Janette, are you still there, I dont know where the calendar is to post it.

OK, I found it but I dont know if I did it right....

You can access it through the "calendar" link at the top right hand side of the boards. Just click on "Calendar" and it will pop up. The rest should be fairly easy.

I forgot to mention that you won't see the appointments go on the calendar right away. Roni needs to okay them first.