Defeated

[Anonymous]

I cannot even imagine what else to do. We have been through every single test known to man kind (chest x ray, 2 barium tests, every blood screening, every bottle, every formula, different water, every medication, you name it absolutely every single thing). We cannot find out what is wrong. He simply will not eat and goes absolutely insane when we feed him. I stay at home with him during the day and I cannot believe the emotional disturbance I feel by watching this every single day.

My wife told me today I am making more of it than it really is, REALLY!!! It takes about 2 hours to feed him 2 oz’s of formula and he goes nuts. I have to say the fear of his safety and emotional devistation this is creating inside of me is making for a terrible combo.

We have him on a feeding tube, which is working, but we are trying to ween him off of it little by little, every time we take a step in that direction he goes absolutely nuts. He cries so often and so hard I am losing my hearing some days and it is lasting for days.

It seems no one in the world has any idea what to do. We are going for a brain scan on Wed and I thought that one was a reach, but I would try anything at all at this point. 4 months of this, that started from day one. I get about 3 hours of sleep a day, if I am lucky, and the rest of the day is filled with screaming and total defeat.

Is there anything I have not considered (not bottle related tried every one, not formula already on Neocate for month and a half, not medication tried 8 or so even prevacid 30mg for a month, not scoping had 3 done, …)

I HAVE NO IDEA WHERE TO GO FROM HERE, ABSOLUTELY NONE, WHAT IS HAPPENING TO MY KID??????? How can he be in this much pain this often from simply eating .5 to 1 oz of formula???????

[Anonymous]

I can not offer much advice, but just support! I can tell you for us months 4 – 6 were the worst, but I agree with you, sounds like more than just reflux and sounds like he is in a lot of pain. I think the brain scan is a good idea just to rule it out. You have a feeding tube.. is it an NG tube or something more perminant? Is there any discussion of Fundo? I know that surgery should always be a last resort, but there are some babies that is the answer and nothing else helped.

I would explore asking the doc re: fundo if the brain scan doesn’t show anything. I will tell you when I stayed home with Dylan, my DH didn’t understand at all. He just didn’t watch it all day like I did so he couldn’t understand. Not his fault, just not as involved at that point.

Hang in there! There is a wealth of support and informaiton here!!!

[Anonymous]

We have ruled every single other thing out, but he simply will not eat. I know he is starving, but when the bottle starts and he sips one or two times, he goes absolutely nuts. My wife is at work until 6pm, so she gets here later, I am with this insanity all day. She probably only sees him like this for 3-6 hours a day, MAXIMUM. She treats me like I am making it so much worse, but the fact that I have a feeding tube in my kids face, tape all over, he will not eat at all from the mouth, goes nuts all day, I cannot play with him without holding his tube, and I go NOWHERE ever, because he is incredibly inconsistent is plenty. I have to say it has worn every single part of my being thin.

He is on an NG tube. My doctor is the best in my area, and we are known for hospitals in my area, but he is scratching his head. I can tell he has no idea what to do at this point. He even thinks the brain scan is ridiculous, but since he cannot figure it out, what is there to lose. I go in for that one on Wed. I had my ped write a script for the blood test that tests for allergies, because that is the only thing I could even guess.

I have read so much information, talked to so many people, we are on our 4th ped, our 3rd GI specialist, still not a single answer.

I am just as worried about my own well being as his at this point. The fact that my wife can be so cold makes me 100 times worse. She has admitted that she gets jealous if I get some time away. I cannot even being to understand her at times. I need it just so I can get an hour or two to myself to recharge for the next day, still I rarely get that time. I probably get away from him 2 times out of a 5 day cycle, for 2 hours at a clip. There are days I literally never leave the house, maybe 1 hour, but back into it for 23 more.

Thanks for the reply, I really need it today.

[Anonymous]

Here is a BIG to you. You are doing a great job and you do need sometime to yourself to “recharge”. It sounds like there is some type of feeding aversion going on (which I am sure you already know). I know you have done tests and xrays and such but have you seen a speech therapist and or occupational therapist? They may be able to give you some stratigies to help with the problems since they all seem to be oral. I hoep some other moms will chime in as well. Hang in there you are a wonderful parent and doing the best you can. and you know what take him outside and get him some fresh air… that always did wonders for my little man..i know it is hot but it helped me so much last summer.

[Anonymous]

I am so sorry you are going through this! I agree with what Beth has said about the aversion. You might contact Early Intervention and try to get help from them. I *think* that you can get in touch with EI through your county health dept. I’m sorry I don’t have more advice! Here is a link about Early Intervention and a “feel good” post as well.

http://www.kidsource.com/kidsource/content/early.intervention.html

https://www.infantreflux.org/forum/forum_posts.asp?TID=2005&PN=1&TPN=1

[Anonymous]

is there any discussion of getting a more permanent tube at this point? We didn’t have one, but I think there are other moms here whose babies did have them so they would be better versed than I on helping you through that. It would at least take the stress of feeding away at this point,and then you would just need to get him comfortable.

Can you ask for Carafate or use some mylanta and see if that calms him? if it does, then you can pinpoint reflux is the major issue, if it doesnt’ work, maybe there is soemthign else going on? Have you worked with any other specialists than the ped and GI? if you don’t get any allergy or brain scan answers, I know sounds crazy, but what about endocryn? Could he have something else in his body that is not quite right so that the reflux is secondary to that? And you just haven’t discovered it yet? I would look to neurology and endocryn if you don’t get any answers from teh brain scan.

Can be a very frustrating long road, but you are right, something else is going on and you just haven’t found it yet……

This is a great place for support and to vent whenever you need ot. If you feel like you are getting to the edge, you need to let your own doctor know. I know it sounds crazy but we woman get the post pardom with all of this, but if you are in it alone a lot, then you may need a bit of something to help yourself through. Teh crying can be really hard and tough. but the baby needs you to keep it together, so you will need to get help and a break if you need it……

[Anonymous]

Thanks for everyone who is writing, I really need it today. I have no idea what could be causing it, because it is inconsistent. There are days he will blow through 1 oz, then get caught up, then other days where a simple sip will cause him to go nuts. He does grab his chest often when feeding and is sucking his hands like there is no tomorrow. He has been like this from day one and never fed in a good pattern.

I think we might be forced to get on a full time tube, which WILL KILL ME. I have an NG tube, so there is a bag and a tube into his nose. I hate this damn bag so bad, it is a major inconvenience, but he is gaining weight. I think that is the one thing that keeps erking me, everyone keeps saying he is gaining weight, so he is good, but he is not happy and always in pain, what is good about that?

I have thought about the speech therapist or occ therapist, but I do not understand enough about what they do and how it relates to his problem???? Maybe someone can help me understand why he would be going fruity when he starts to suck, stops, turns his head vigeriously, then goes back on, then may smile, and even laugh.

The only places we have not gone is the speech/occ and brain scan. We have a book of records on him, it is unbelievable. I even have a home nurse that comes weekly. He is not 90, still I have a home nurse, it is beyond sad. We change his tube every week and what a treat. He goes NUTS.

Has anyone else experienced the strain on the marriage??? I think this part is the one I completely under estimated. My wife thinks she did something wrong during the pregnancy/she did something wrong, which to me sounds absolutely insane. She never smokes, drank, runs like crazy, and was not even drinking soda for a while in the starting. I find that wears me down and then she starts with these absurd ideas on what is wrong and is convinced it is what is causing it. I want answers no more guesses or maybes. I have to say it has taken a tremendous toll on us.

I think the other part is none of our family or “friends” have taken an active participation in helping us. We have asked and put it out there, but no one has even tried to come to the rescue. I have detracted from everyone, because I cannot beg for any more help and it is humiliating to keep asking.

Thanks again to everyone, it seems to keep getting worse and I feel tremendously for anyone who is behind me in time and going to go through some of the things we already have, it makes me emotionally ill to even think of going back even one hour.

[Anonymous]

Hang in there! We have all felt the emotional and marital strain in one form or another, but I promise that does get better!!!!! I can not even look back and know how I survived it with Dylan and my husband was home much more with Carter and we knew it would end eventually which helped so much. We knew there was an end to the misery.

You are doing a good job and this is a great place to vent when you don’t want to put more strain on the marriage…..

If nothing else, we are a great group of supportive “mostly” women!!!

Hang in there!

[hellbennt]

this might help?

hang in there!

Swallow/speech/nyc/thais: https://www.infantreflux.org/forum/forum_posts.asp?TID=9445&PID=82094#82094

[Anonymous]

the strain on the marriage….yeah, that was exceedingly difficult. my dh was very understanding, but would look to me for answers and i had none. eventually, we picked at one another in frustration. we quickly ‘forgot’ to take care of US as a unit and went into survival mode, doing what we had to do to put one foot in front of the other. i would love to say we were one of those couples that really banded together and forged thru, but we were not. it was difficult and lonely. however, we are still together today and i really believe we are stronger for it. no one else could really understand and the isolation was so hard. i agree totally with anne marie that knowing there WILL be an end to your misery helps immensely. we now have a dtr who has many food allergies and i am nursing her b/c she did not tolerate a trial of alimentum and i can not go the neocate route just yet. whenever she has a rough night, like tonight, memories of riley at his worst flood back. she could be just experiencing a colicky time right now b/c 85% of the time she’s totally relaxed and sweet, but boy there is nothing like a screaming kid to make you run for the hills and not be able to see the forest for the trees. hang in there, it is so hard but you will persevere. i pray relief for you and your sweet little baby. come here often–this board no doubt saved my sanity.

[Anonymous]

you may have already answered this—but did the biopsies show any damage or irritation from reflux and has he had a ph probe done?

[Anonymous]

kevieb wrote: you may have already answered this—but did the biopsies show any damage or irritation from reflux and has he had a ph probe done?

I was thinkng the sam t hing…I would NOT rule out relx until you have done more extensive testing…..really I wouldn’t….all those other tests you LO has had done can be clear and he can still be suffereing form reflux. Those were all clear on Jedd’s testing and he has SEVERE reflux and was 100% NG tube fed and then became 100% G tube fed. He is now in a tube weanign trial and is an oral eater at 22 months old.

It sounds like you need someone to talk to…I can give yo my e mail… and then give you a call on the weekend????

Just e mail me if you woudl like. I have done this MANY times with other paretns on a different website ai am part of…

I am sorry it took me soo lng to get to you, I have been out of town for over a week and jsut got back today…

Here’s the mail address… o[email protected]

Here is my myspac eaccount so you can see pictures of Jed with both of his tubes in…

http://www.myspace.com/theonionjewell

[Anonymous]

One more thing….how old is you son???

Jedd didn’t want to eat either and he had a heart defect form birth that was compunding his issues…..He struggled to eat because of the hole in his heart. He would barely eat anything at all EVER!!!!!! When eh did eat, he didn’t feel well because of the hole and that like I said compuonded the issues.

[Anonymous]

How are you doing? I just discovered your message and feel such concern.

I am very close to a nephew and his wife, who have a GERD baby, almost ten months old. The boy does not have a feeding tube; he gets enough food to manage without it, but he is not an easy feeder. Their problem is that he simply doesn’t sleep for more than thirty minutes at a time, and hasn’t since birth. If he is not held and breast-fed, he can cry endlessly. If they let him cry, the reflux gets worse. They are beyond exhausted and are also desperate.

You are not alone in feeling defeated, at your wit’s end, and miserable. This is the case with so many parents of reflux babies. And yes, marital problems are very common with parents who have a child with ongoing serious health issues. I know, because I have a son who was extremely ill for ten years as a child. In the end, it did contribute to the breakup of my first marriage. Can you go to a counselor with your wife? Or even alone (with the baby), if she won’t go? My nephew and wife have been in counseling for several months in order to hang on to their relationship.

Since you’re not breast-feeding, you might be a candidate for medication to help with your terrible emotional state. Modern meds can do miracles for adults. There is a huge choice, some don’t cause sleepiness or impair driving, they simply remove that scary edge that can occur when dealing with a screaming baby. If your wife doesn’t want you to be out on your own when she’s home, can you hire an experienced retired nurse, who wouldn’t cost so much, so that you can get away for an hour or so?

Finally, have you read any books about this problem? You might go to amazon and search for titles about infant/child reflux or gerd.

I am thinking of you and praying for your peace of mind, and the discovery of help for your baby.

[Author]

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