2nd Opinion and huge decisions to make

[Anonymous]

I want to apologize if I offended anyone with my previous post. I did not intend to come across as sounding biased. Right now, I too am struggling with the same decision, and the harsh reality that whatever I decide could change the course of my child’s future for the better, or the worse. It is an awful decision to have to make.

Christine, I too felt like you did when my doc suggested tube feeding for Hailey. I couldn’t believe it- I was like, what??? She wasn’t FTT yet. But then I thought more about it when I got home, and I realized that maybe I was thinking driven by emotion and not entirely by my logical side. I kept saying to everyone that I was so tired of people telling me that we didn’t have a problem because Hailey was gaining weight, and I wanted someone to look at the behaviour and not the numbers on a scale. And here came this doctor who was doing just that- she was saying, there is a problem, in spite of the fact that she’s gaining weight, but it didn’t make sense to me. It’s sort of a catch 22.

I just wanted to add that I don’t believe that there is a clear correct answer regarding whether to tube feed or not, because I believe that the success or failure of tube feeding is really multifactorial- unfortunately it depends not only on the eating behaviour, but the cause for the lack of eating, the child’s temperament, the child’s perceived quality of life on the tube, the family’s perceived ability to manage the tube, the dedication of the doctor in getting the child to resume oral feeding, and probably many other things. I think that’s why one child can do well with tube feeding, and another child not do well.

In my case, I still don’t know what the right answer is, and I struggle with it daily. But I’m not ready to go there until I have more answers. Unfortunately, with our wait lists, that could take a long time. I also told our ped GI that if we had to do tube feeding, I would insist on a plan of care outlining details on how we would resume oral feeds, as well as a time frame for re-evaluating.

Lisa, have you thought of asking for a metabolic workup to rule out anything else- if so make sure that they do an organic acid screen, as well as oligo. When we had this done, a few things came back off in both the blood and the urine, but we still don’t have the results back yet after weeks.

Please keep us posted. It’s such a difficult decision.

BTW, I posted my email wrong last time. It’s [email protected]

Good luck in your decision, and know that whatever you decide, you are doing the best that you can for your son. I think of you and little Noah often, as Hailey and Noah seem very similar in many respects. I hope that he is feeling better.

[Anonymous]

Thanks everyone for your opinions. I’m glad that I was able to get a second opinion, and the doc really listened and understood my concerns. He didnt blow me off or try to send me to someone else. His recommendations are appropriate, but I just need to decide what I feel is best for Noah right now. It is a tough decision, but I think the g-tube is not the right choice for us right now. Like some of you said, I will know when its the right time. Right now, I dont feel like its the right time. If things get worse with Noah, and he has major weight and growth issues, then I definitely will reconsider the g-tube. As for now, I think my husband and I are in agreement that we will do the emptying scan and might see about trying periactin to help increase his appetite before going to more extreme measures. I feel that the tube is a last resort for us. I am going to keep feeding him like we have been (sleep feeds, syringing, etc) and I’m going to continue to work with the feeding team and hope they will be of some help.

Thanks again for your help and support. This board has been such a life saver for us.

[Anonymous]

Has anyone ever offered you speech pathology consult???? I know OT is involved but what about the person most specialized in this field. They have some really good ones that deal only with eating and swallowing disorders in children. Do all the other test since most are minimally invasive and then see if you can get speech to see him. Then if they feel the g-tube is the best option then you have exhausted all avenues of opinions – then you make the decesion.

[Anonymous]

Lisa – My daughter had a terribel feeding aversion and gags now even when textered things are placed in her mouth. She has gotten better with oral sensations she she started desenstize herself with her hands. She is now chewing on a rag and a stuffed elephant toy (the trunk stays wet). Since she has been doing this things have improved so much. Does he put things in his mouth??

[Anonymous]

lisaann wrote:

Thanks again for your help and support. This board has been such a life saver for us.

Ditto!!! I am so thankful for this forum! I honestly don’t know where I’d be today without you all…

[Author]

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