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Ellie's pediatrician is so concerned about her weight loss that she managed to convince me to give it a try. Boy am I regretting that now.....
We had our first session this morning and the whole 3 hours was a disaster! Yes 3 hours of a stranger in my home watching my kid eat (okay... not eat) and telling me what I was doing wrong!
She was put off by the fact that Ellie wouldn't talk to her. As if we were trying to hide something. Ellie has severe anxiety. She's not going to talk to a stranger. She's not going to eat while being watched by a stranger. It's just not going to happen. I tried to explain this to her. I pointed out that it's in her referal notes. She just didn't get it.
She tried to convince me to let Ellie watch TV while eating. As if distracting her would somehow get her to eat more. Ellie doesn't even really like TV. It just seems kind of rediculous to me.
We're doing everything we possibly can to increase her calorie intake. She doesn't have any GI issues or medical problems that affect absorbtion or anything like that. She just has a high metabolism and a poor appetite. I've been told this is really common in kids with spastic CP. She's not gaining weight fast enough (yes this was an issue before she got sick) so all that's left is to treat it like a behavior problem. I just don't like it!
The thing is, today not withstanding, Ellie's eating much better than she was a week ago. I know she's making progress. I know she'll gain the weight back. It's just not happening fast enough for some people I guess.
Is the feeding therapy going to get better or should I just say forget about it?
I would say forget about it. If she has the anxiety issues, unless they have some way to become her best friend so that she is comfortable around them she isn't going to do what they want her to do. You can ask if you can somehow videotape her at a mealtime so that they aren't actually there but short of that I think they are a pure waste of time. If you know she is getting better and will gain weight than I wouldn't worry about it. Is your ped normally 100% on board with your decision or has your ped doubted you before? If this will cause a rift with your ped I would push to have the team let you videotape her eating and them give you feedback either over the phone or in an office or some other setting where it won't freak Ellie out... (((HUGS)))
We did feeding therapy and Danny acted 100% different for them too. He is over-compliant at Dr's offices...always has been. If they say jump he says how high sort of thing... They said eat, and he ate. He ate more than I could get him to eat in 2 days in that one sitting. 3 times in a row before the therapist (thankfully believed me) said it wasn't going to help if he doesn't act the same at home and there. Ours was in a separate therapy office of the local hospital. (Back in march he 100% stopped eating and it took 6 months to get his intake back to where it was supposed to be...)
I think that your discernment will be best here. If you think she will become more comfortable around them or if you think she will eat in front of a camera and they will accept that than go for it. If there is no way either will happen than I would say squash it now...
I'm supposed to talk with her pedi on Thursday. She's usually really supportive of my imput but I think she feels like I've been ignoring her about this issue. She's just really concerned right now about Ellie's weight because she feels like if Ellie gains some weight she'd have more physical strength to regain some skills in other areas.
I do agree with this. I am really concerned about the weight loss too. Ellie's down to 30lbs!!! She is more tired and weak than normal. But she just had pneumonia! It took us more than 2 years to get her from 28lbs to 34lbs. She's not going to magically regain 4lbs in just a few weeks.
I'll suggest the video and tell her if that doesn't work, we're done. Hopefully she'll agree with me. I'm not really up for a fight.
We do use benecalorie. Also the boost kid essentials and breeze juice drinks. It's hard to know how much they're helping at this point. But she is eating more now. At least back up to what she would eat before she was sick, which admittedly is still not enough. She's slowly gaining the weight back. 32.8lbs on Monday.
So happy to hear she's gained over 2lbs! I don't know how I missed this thread!
I agree with i3ai3ydanny. If she won't act normal on skype or video, I say scrap it. If she won't eat during these times, then it would be more damaging to continue. Every calorie counts with our kids, and missing even one meal can mean losing a pound. Advocate for your girl (I know you already do!). You know what's best for her.
We are done with feeding therapy for now. Tried skype a couple times and it helped a little but I still just don't think we were getting anything useful out of it. We don't have time for things that don't produce results. Her pediatrician isn't thrilled about it. She thinks we gave up too soon. But she's respecting my decision.
Ellie was weighed on Friday when they took her first set of casts off. Either she lost a full pound or the scale was off. 31.7lbs. This mornings weight was a little better. 32lbs even. I'm blaming the scale and her casts. She's burning more calories dragging those heavy things around. (At least that's the excuse I'm going with for now. )