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st.augbride
member
Regression after feeding therapy?
st.augbride
member
We just did a one week intensive with our feeding therapist (formerly speech therapist but now we just work on feeding). Ds typically does great with her and we see her once per week. She felt we'd make some good progress if we intensively focused on feeding by meeting for an hour a day for 2 weeks straight. Well, we started this last week and now we are seeing tons of regressions : ( So much so that she recommended we hold off continuing the intensive for now. He was never a good eater--hence the feeding help--but he would eat certain finger foods or foods on a fork with distractions, and would happily drink his pediasure, and has gained well (worked his way up from <1st adjusted age to 20th actual for weight and <1st to 50th for height). Now he is on a total strike except for his crackers and we can get him to eat purees and yogurt with tv/youtube assistance. Everything else that goes in with a fork gets spit out, even go to foods. Plus, he refuses to drink anything. Pediasure, milk, juice, water...anything...and froma straw, cup, sippy... He has definitely lost weight and is not focusing as well. We have no idea what to do. He never seems hungry or thirsty ever. We've been to see GIs, nutritionists, feeding and OT. I am at a total loss as to what to do short of trying an appetite stimulant (which also scared me since he tends to react poorly to meds--if there is a possible reaction, he tends to have it).
Can anyone relate? Does this ever get better? It seems like nothing works. All we do is hope things get easier as he gets older and can reason more.
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Re: Regression after feeding therapy?
Do you have a dx or a reason for his eating issues? DS has a lot of eating issues related to his dx of Russell-Silver Syndrome. He eats orally but also has a g-tube to help maintain his calorie intake. It's hard to really tell what is going on...what were his eating issues to begin with? No appetite, texture issues, food allergies? All I can say is to hang in there- I know how incredibly frustrating it can be when your child wont do one of the most basic things like eating. I can remember just crying at the table begging my DS to eat just 1 bite of something, anything...it's really really hard :-( I know its not always the case but for DS we noticed an improvement in his eating once he got his g-tube, sounds kind of strange but his oral intake definitely has improved and I don't know if it's because of how we split up his feeds now (he is on continuous overnight feeds and a bolus morning feed and oral throughout the day) or what caused the change but things can get better. DS seems to have no rhyme or reason with his fluctations in eating- his feeding SLP agrees that we really have no explanation as to why he does so well for a few months than completely regresses to eating nothing.
No diagnosis except for being born with severe IUGR and all that comes with that. His oral motor skills are good and while his tone is a little low, it's very mild. He seems to have a sensory component as well, but he does eat a variety of textures (usually). There is definitely a behavioral component too, plus what seems to be a lack of hunger and thirst, so it's all of this combined.
We did just get back from the pediatrician and she feels the constipation is majorly compounding the problem, so we are doing suppositories right now to get things moving and see if it helps...
Have you tried adding Benefiber to his diet to help the constipation? DS was FTT at 3 months old because of reflux. Once that was solved with meds and thickened formula we were fine until the constipation set in from the thickener. He would go down to eating almost nothing until he finally pooped. We used Miralax to flush him out, but it created a lot of gas so it's one of those double edged sword things. We ended up using 1/4 capful every other day to keep things moving. Then our GI suggested 1 tsp 2x day of Benefiber added. This helped so much. It really kept things moving without too much of a side effect. I also found for my son Pediasure is quite constipating. I only give him 1 bottle a day so I divide it among his bottles of milk to help make it easier to digest.
DS is also like this when we push introducing new foods though. He goes on a hunger strike, then all of a sudden he eats everything in sight. Has this been going on for a while or is it sudden? I would let the constipation pass and try to keep it at bay and then see what happens with the eating. I know eating struggles are so hard especially when you work so hard and you think you're finally getting somewhere only to get to dr's office and see that they haven't gained an ounce.
I would definitely have a full GI work up done- have they considered any other gut issues like delayed gastric emptying? Constipation and bowel issues can REALLY effect appetite. We think DS is similar in that he doesnt know/notice when he is hungry thirsty and from talking with older kids with his condition it seems like that never really changes (the teens say they just learn when and how much to eat and do it out of necessity not necessarily because they feel hungry).
Does he have any reflux issues? I would maybe want to look into having some basic GI testing done if he hasnt already had it done (emptying study, upper GI/barium swallow, etc.) It might be worth ruling out any other biological reasons for his appetite issues. GL!
We have and we were told that she is great, but that it probably wouldn't help much given what we already do with ds and his underlying issues. We will see Dr. Kerzner (the GI she works with) next month though, so I will ask if he thinks her approach might differ in any way from what we've already tried. We've seen him a few times and other than reflux which he's on meds for, nothing else has ever been considered or tested for. We're kind of over the testing at this point, so unless it's truly warranted, I think we'll avoid anything invasive right now.
We did use several suppositories yesterday and a laxative today as the pediatrician suggested, and it seems to have certainly helped. We got things moving pretty good and he drank 12oz of pediasure today, plus ate better. Still less than where he was, but definite progress. We went back to feeding in front of the tv for now too. Not ideal, but we need to get that weight he lost back on.