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Hi there,
It has been forever since I’ve posted on this board, as Emma has moved beyond reflux issues…lol…but had a fundo, so not much to say here. But, a friend sent me this link & asked me to reply. I have a lot of personal experience with Emma in this arena. First & foremost, I want to say that you are not alone & that I truly do understand the struggle it can be to get your baby to eat. It is so stressful–something that should be so natural is torture to your child.
I also need to add a disclaimer here (lol!)… Emma has several health issues, & currently the docs feel she has a mitochondrial disorder. It has been a long 22 months, I’ve seen Emma go through so much since day one. The only thing I’ve really been able to do (aside from take her to docs & give her meds) is the therapy. It’s the only hands-on way that dh & I can impact Emma’s health, development, & future. We are uber-believers in early intervention, it is the soapbox I never come off of. We’ve seen the changes in our Emma, & we’ve been told time & time again by the doctors that we are way ahead of things. Had we not started therapy as early as we did, & stuck with it, Emma would be much more delayed than she is now. It DOES make a difference. And, it is so rewarding, knowing that YOU had a hand in it. So…here are my thoughts on your situation…
Emma has been in therapy since she was about 6 months old. She receives OT, PT, & ST. We’ve worked with ECI & she’s also been in private therapy. Through private therapy (& this could just be my state or county…some ECI programs are great) we have seen the biggest changes in Emma. ECI seemed to come & observe her, not do much therapy. Private therapy has been much more intensive. And, yes, at times harder to watch. However, it has made such a difference.
Yes, as some ladies have said each child develops differently & ‘torturing’ via therapy could create negative consequences in the future. However, if the ST is good, she will keep both of those things in mind. Therapists go by strict guidelines regarding who does & doesn’t need therapy–they won’t do therapy unless your child truly needs it. Also, a ST should be very careful about negative responses to food, oral motor exercise, etc. They should come up with fun activities, toys, etc. to introduce to your son. IF he is still not progressing, you may want to try a new therapist OR switch to every other week. I WOULD NOT quit therapy…it is KEY at his age to develop oral motor skills. This goes beyond minor eating issues that some reflux kids have. What Emma suffers from is beyond that…she is orally defensive, has hypotonia, & SPD. So, the gagging is one thing…but all of her other oral motor challenges are neurologically related, not because of her reflux.
The other issue is that since your son has a feeding tube, nature is not leading the way in needing food. So, he is more resistant. His tummy doesn’t send the signals of hunger, which halts the normal process of digestion & eating. That is why it is VERY important that you stick with his oral motor program. If he did not have a feeding tube, my feelings would be different, most likely. But as long as he has a feeding tube, his body will need help to stimulate the desire to eat & be okay with oral motor stimulation.
Emma will be 2 in May & we’ve been on a roller coaster as far as eating goes. She’ll have periods where she’ll enjoy eating (limited foods mind you) to days/weeks where she won’t eat a thing. Drinking is a bigger issue, she will only consume 2-4 oz of liquid per day. And, she refuses Neocate even flavored. Throw in a cold or stomach bug & forget about it…Emma absolutely refuses anything orally. She DOES have a feeding tube & gets all of her meaningful calories via that. Now that she is older, we give her lollipops, sour gel on her NUK brush, Doritos, & any other odd things she’ll eat. For Emma, she requires high flavor (usually either sour or spicy) in order for her mind to register & want the food. So, she hates babyfood, pudding, etc. Where we are right now is to allow her to eat the things she likes, & then we’ll incorporate some softer foods with those. We want her to enjoy food, enjoy eating. For a while, we were doing a form of therapy where the ST would quickly give her a spoonful of pudding, then allow her to pick out a toy, then spoonful, toy, etc. She’d get upset at first, but then was okay with it. However, our ST became worried that at Emma’s age, a negative connotation toward food might develop. So, we are no longer doing that. We play lots of games with food, pudding painting, singing, making snowmen out of marshmallows, etc. ALL so that Emma likes food, this, in time, should make her accept trying new foods & consuming larger amounts of it.
As far as SPD goes, it is not a quack diagnosis, as some believe. In some children, their nervous systems really are so off as to cause severe sensory issues. Unless you have experienced SPD firsthand, you can’t truly understand it. So, please, if therapists are believing this is what it is, think about it & find out more info. It will help you greatly in the long run. It is beyond tantrums, refusals to eat or bathe… Emma screams bloody murder in her bath. She gets about a 2 minute dunk & then onto her hair washing in which I have to wrap her like an infant & hold her while washing her at the sink. She still screams, but she cannot hurt herself while I’m washing her. She pulls her hair out or will bang her head on a wall, tile floor, etc. if she is upset. She will scream if I put overalls on her, she will not be able to move if her clothes have ruffles or collars. And, I mean, freezes there, rubbing her clothes & crying (only plain cotton clothes now!). She zones out in public places, to the point of being practically unresponsive. She will sometimes be awake until 3 a.m. seeking out sensory…rocking, banging her head, bouncing in her crib, etc. Sorry to go on & on, but I often feel like people think SPD is made up, but it is NOT. It creates a ripple effect of issues in a child’s life. We brush Emma, we do not do the joint compressions she was too upset by them. So, OT said just do the brushing. It DOES NOT hurt the child…it is more about deep pressure than ‘brushing.’ You use a brush so it is gentle, but you want pressure not tickling. Most kids like it. Emma does, at first she wasn’t thrilled with it. But, now she likes it. We started out every 2 hours, we still try to do that, but lately she enjoys massages, so we do both. I originally thought the brushing would be so time consuming. It should not take more than a couple of minutes once you get the hang of it. It probably takes us a minute or so now.
If you feel & it appears the therapists do, that he does have SPD, please pick up “The Out of Sync Child” book, it is indispensable. Does your son have other developmental delays? Has he ever seen a neurologist? When & why did he get his PEG? I’m just wondering, because if his oral motor issues are part of a bigger issue/disorder, then you definitely would NOT want to change his therapy plans. While this is a great place to come for opinions, please always seek out your doctor and/or therapist(s) before you make a final decision. For Emma, we have been told she will need therapy for some time. This is because of her history & due to her probable mito diagnosis. So, we’ve just been reserved to the fact that this is are reality & will be down the road. For Emma, stopping therapy would be harmful & really alter how her future will be. We are giving her the tools now & early so that hopefully whatever her diagnosis, she can achieve goals thought to be impossible.
Lastly, PLEASE voice your concerns with your therapist(s) & pediatrician. They know what is going on physically, developmentally, & emotionally with your son. Let them know how YOU feel & the (very reasonable) concerns you have. They will not think anything wrong with how you are feeling, & (I’m sure) will offer alternatives & suggestions. I know that you yourself are probably wiped out, trust me, I’ve been there & I’m sure I’ll get there again. I would try to find a support group or even therapy for yourself, antidepressants are only good if combined with a therapy program (my take on it). If it comes to the point where a therapist/doc thinks you need the medicine, please take it. Yes, it will take the edge off, but it shouldn’t cloud your judgment regarding your son & his health. If it does, they’ll switch you to another medicine. I am not on one now, but have been in the past, so again, from personal experience! Please take time out for yourself. For a while, my life was all my girls, & so much of that was consumed with doctor appts, meds, tube feeds, therapy, etc. I was so stressed out. Finally, I realized I wasn’t helping anyone if I wasn’t helping myself. So, I now make an effort to take even an hour or so to myself. Maybe just for a walk, grab a coffee, drinks with friends, go to a bookstore, etc. Or, just a loooong shower (lol!). Dh & I make an effort to go out on a few dates each month…even if that means holding hands on the couch watching TV!! Please make that time for yourself (& for you & dh) & you’ll be rejuvenated, ready to face the world.
Things will get better, they will. Unfortunately, no one can say for sure when. The key is that at your son’s young age, a positive impact can be made sooner than if you were to hold off until he is older. The oral motor stuff (believe it or not) only gets tougher as they get older—they become picky toddlers only adding to the mix. But, on the other hand, the therapy itself becomes easier because they can make games of therapy, give rewards, etc. So, it will get better!! I would stick with it, even if you decide to go only 1 or 2 x per month.
I apologize for going on & on… It just seemed to me that you are dealing with issues that go beyond reflux-related eating issues, & that your son has other health concerns that need to be taken into consideration. I hope I was not rude at all, I tried not to be! I’m just very passionate about this.
Take care!!! (((HUGS))) to you & your son! 
One thing I wanted to add, not just for Laura, but as a post to all…There’s a big difference between being a little behind in some milestones than officially “developmentally delayed.” The milestones in magazines & books have a 3-6 month ‘grace period’ on them, meaning it is still ‘normal’ if your child achieves them (some) up to 6 months later. To be ‘developmentally delayed’ requires a doctor’s diagosis (in Emma’s case, this first came from her pediatrician, then reaffirmed by her neurologist as well as slower brain wave rhythms on her EEG). Not only was Emma not achieving developmental goals (at the time rolling over & sitting by herself), but she had low tone, was not visually tracking, & lacked most age-approrpriate reflexes. This was all very scary, at first the docs were not sure if Emma’s issues were progressive (meaning she would not develop further) or static.
Thankfully, Emma continues to make progress, at her own pace. While we can’t do much about nature…certain things she will acquire only when her brain & body are ready…we can give her the tools to help her when she is ready for the next skill. For example, at almost 2 years old, Emma cannot get from her back to sitting without rolling over. She rolls over like a 1 year old, not like a toddler. So, we are working on strengthening her core & also showing her how to sit up from her back. We place our hands in certain places & try to teach her how to do it. We’ve been doing this for 3 months so far, she hasn’t done it on her own yet. BUT, at least when the strength is there & her body can physically do it, she’ll know how to.
A child really does not need therapy (other than play!) unless he/she is truly developmentally delayed. In Christian’s case, however, even though the docs weren’t pushing for therapy (some are not progressive in this area), Laura felt it necessary AND the therapists agreed. Therapists, private or state, will not start a therapy program for any child who does not clinically qualify for it. It is a waste of time & money if they did, plus the insurance companies would not cover it. When you first began therapy, the therapists do a complete evaluation, that is sent to the ins company who based on that decides coverage.
To Laura…I hopefully understand things a bit more now, after your last post…It seems your son indeed needs the therapy & can benefit from it. So even though Christian may not be officially developmentally delayed & does not have other issues that would require other therapies, I still feel that with the gtube, he’s going to need a lot of help to accept foods orally & ST is one sure-fire way to help with that. Another thing to consider, especially when you meet with the GI, is how long do you expect Christian to be on the gtube. He may have advice on adjusting feeds to encourage a little bit of hunger & see if that helps.
In Emma’s case, we originally thought the gtube would be in for a few months, simply to spark her growth & help her through a rough patch (kidney & aspiration issues, combined with GERD & FTT). However, now with the probable mito dx, we are no longer looking at removing the gtube. She saw her GI doc this week, & he wants us to continue with what we’re doing–30 oz Neocate via gtube each day, & let her eat orally whatever she will–we don’t see him again for 6 months. She may always need the gtube, so it’s no longer a goal of 2 more months, etc. & have her weaned from it.
That affects a lot, whether or not Christian has a time set to remove the gtube. Our plan prior to a few months ago when all this changed, was to get her eating orally as much as possible & get the tube feeds down. If the docs feel Christian will need this long-term, than you can probably be less aggressive with trying to have him eat foods. Perhaps work with the bottle, oral motor toys, & trying soft foods (if he prefers hamburger, etc.), so that he does not lose that skill & desire. Then, down the road, you can slowly ramp up the therapy & what goals are expected. It all depends on how long he will have the gtube, what the docs expect, & also if other issues (cognitively or physically) arise.
We saw the most progress with Emma as far as oral motor goes after she was a year old. It is still up or down, & she is nowhere near where she should be…but, the first few months we saw almost no change (we were with ECI, then switched to private, because she was not progressing). A lot of it could just be Christian’s age & it will take a few more months before you see the progress.
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