GAG desensitizing exercises

[Anonymous]

Hi,

Everything has just seem to gone from bad to worse. When Emily was first diagnosed with reflux, her ped said she would outgrow it by 6 to 9 mths. Well, there has been absolutely no improvement. Emily is 8 mths old now and we have gone from silent reflux to decreased appetite, feeding with half sleepy to only feeding when asleep. Even while she is asleep, it can take up to an hour and she is still struggling with the bottle.

Everytime I put a bottle of forumula in her mouth while she is awake, she gags. While asleep, she still struggles and I have to somehow sneak the nipple in her mouth and pray that she will not reject it or gag. If she doesn’t gag before the feeding, she usually gags in the middle or after the feeding. After she gags, she vomits at least 1/2 of her intake.

I’ve tried latose free, soy and Alimentum, but no diff. She also refuses solids and gags on what little she allows us to put in her mouth.

This is all so depressing and frustrating. Her top tooth is slowly coming out, so that may be contributing to the increased gagging, but I’m not quite sure. Her ped has finally referred us to a ped GI and requested a feeding study, but overall the wait is long.

Her ped won’t up the Prevacid so I think I’m going to up it according to the Marci guidelines to see if it will make a diff.

When the feeding fussiness all began, I felt so resentful that we couldn’t lead a normal life, but then I accepted the fact that we pretty much had to stay at home so she can eat. I was fine with that, if could only eat in the comfort and quietness of home, then we’ll stay home, but now she won’t even take the bottle at home. How much worse can this get?

Her ped had suggested that we wait until she gets hungry, we tried that and she still wasn’t hungry 19 hrss after her last bottle, so I gave in and slept fed her.

Sorry, I know that I’m just babbling now, I’m just so frustrated with the fact that she won’t willingly eat anything and whatever she eats usually ends up being puked all over the floor.

Honestly, I have never been as confused, frustrated and depressed as I have been since this reflux all began. All of you have responded in the past saying that it does get better, but it appears that we are nowhere close to getting better right now.

Thanks for letting me vent!

Sarah

[Anonymous]

Sarah,
I’m so sorry for everything you’ve been going through. My son has had a horrible hypersensitive gag reflex as well, caused by the reflus. We started working with an OT and she taught us some things that really helped make it better (he still gags, but not nearly as much).

Here is one thing she had us do that worked really well:

Right before a bottle feed, start massaging the baby’s hands and arms, then work slowly up to the shoulders. Next softly stroke her cheeks and lips, then insert a clean finger into her mouth and rub along the gums (not enough to make her gag, if possible). The point is to just slowly get her used to the idea of something being in her mouth. After you do this for awhile, then offer her the bottle. This should desensitizer her. It really helped my son after awhile. If that starts helping, during non-feeding times, try letting her put different textures in her mouth – different teething toys, etc.

Hope that helps! Good luck with everything.

[Anonymous]

I’m so sorry things are so hard right now. I remember those horrible days when every feeding was an ordeal. I used to actually have an anxiety attack as feeding time approached because it was so horrible…the fighting the bottle, the gagging, the puking. It’s just shouldn’t be this way.

I think the gi and the feeding study is a good idea. I hope you don’t have to wait too long for your appointments.

How much Prevacid is she on now? My son did not improve until he was on the marci-kids recommended dose. It was horrible until then. I really understand how you feel and how depressing it is. I was fortunate to finally get him on the right dose by 5 months of age, but my daughter was never properly medicated and it was h*ll for 9 long months. I hope your daughter will outgrow it soon.

Have you tried thickening her formula? It really helped with Myles choking and gagging?

I think with things being so bad with her right now that I would look into some feeding therapy. I really should have done it with Myles but I didn’t realize how serious it was at the time. He’s doing ok but we have some issues still that may have been avoided with some therapy.

Well, good luck and please keep us posted. Don’t be afraid to vent….we’ve all been there. No one really understands how diffiuclt reflux is to deal with until they’ve been there like we all have.

[Anonymous]

So sorry you are going through this – having a baby that does not know how to eat or cannot enjoy food is devastating. Hang in there – i know what you mean about being resentful but it is only normal and you are doing such a great job if you are being able to get over certain things – unfortunately, things sometimes get worse before they get better.

Has she always gagged? I am just asking because Matthew never gagged and then he turned around 10months or so and he started gagging with everything – we could not get him to eat anything and we actually had to stop feeding him by mouth a couple of times (he has a tube, so that was an option for us and i know it is not for you). It just happened overnight but now, he is no longer gagging anymore and we have not really done anything (i don’t think). The feeding clinic told us that babies gag because something is bothering them – ie not that something is bothering them then but rather that their digestive system is not 100% ok and the body;s response is an increased gagging effect. We always thought Matthew was fine and his reflux was under control but maybe it was not?

It is great you are seeing a GI – not sure what meds your baby is on but they need to be aggressive with it.

Matthew can put anything into his mouth and he will not gag – that is because he controls where things go – ie he will never let the toys touch the back or middle of his tongue. Some babies have sensory issues and they do not like anything in their mouths – Matthew just has a sensitive gag reflex and he cannot handle anything in the middle of his tongue and tries to push it out and gags.

You are in Canada so i am sure that Lori knows best how to do this but have you contacted your EI program? At least they may be able to determine if it is sensory or it seems to be just a reflex and hopefully some therapy in combination with the right drugs will be great for her.

Like Heather said, there are some things you may want to do on your own while you wait for a feeding therapist – we did something similar to Heather.

One week or a few days, depending on the sensitivity – about 4 times a day, massage Matthew’s leg by applying pressure from the foot to the top of the leg (ie like 5 pressure points or so). Do this a couple of times. Then do the same from hands to top of arms. The idea is that you start applying pressure as far away from the sensitive area (ie mouth) as possible. This will not take more than 1minute at a time (do during diaper changes).

Next week or after a few days – do the same + maybe will she watch some TV for a couple of minutes… try to apply pressure on top of head – we count to 3, and apply pressure on 1, 2 and 3. They told us that it is good to let children know there is a beginning and an end. Do this 5 times. Then apply pressure on cheecks and jaw (ie with hands, from behind)… again 1,2 3 and do 5 times (keep doing the other massage always)

Following week or less or more depending on child – do as above + we got a NUK brush. Just applied pressure to the lips with it. Just 5 times. (you can do this with your fingers).

Following week do all above + try to get your fingers inside the mouth (we use a NUK and if you are interested i can tell you what we are doing with it).

With Matthew, we went through all this in just 2 weeks but really he only has a an issue with the middle and back of tongue, so we had no issues getting into the mouth.

Maybe starting this routine will help while you get somebody???

[Anonymous]

Thank you all for your support and suggestions!

Heather, Thais – I will try the exercises you suggested. The gag reflex is all so confusing. She will put toys, clothes, and fingers in her mouth. She is also fine with a bottle of water or tea, but as soon as we put a bottle of formula in her mouth, she gags. With respect to solids, she may gag as soon as we put the spoon in her mouth or after a few bites. Thais – I think there may be something going on with her digestive system. At around 4 mths, she always gagged as well, but didn’t really vomit. Now she is gagging and vomitting a lot more.

Christine – I am currently thickening her feeds with rice cereal, but it does not seem to make a difference because she seems to be vomitting now as opposed to the refluxing. You mentioned that youor daughter was never properly medicated, but she outgrew it at 9 mths. Did you just stop refluxing all of a sudden or was there a gradual improvement or did you change her formula/diet, etc? BTW – I totally agree with you regarding the anxiety attacks surrounding each feeding. Also, in one of your posts from a couple of mths back, you mentioned that Myles went thru’ a period where he was vomitting for about 3 wks and then stopped. Do you know what caused this and what caused him to stop?

Thanks again for listening!!!

[Anonymous]

Sarah,

My daughter who was never properly medicated had silent reflux so the way we knew she had outgrown it is that she started sleeping at night and she stopped fighting all of her feedings. It was quite sudden with her, (seemed like overnight) but I think most babies outgrow this gradually like my son did.

As for Myles I don’t remember the exact post you are talking about, but I do remember that when he began to outgrow his reflux (he was a puker, not a silent refluxer) he would have a week or two of no vomitting, followed by weeks of vomitting again, then a week or two of being fine, and another week or two of throwing up again. This went on for about two months and then finally stopped altogether around 9 months and he’s been fine ever since. No, there was no change in diet/formula or anything with either of them. They both just outgrew it.

Myles also had a terrible gag reflex. If a spoon just touched his tongue he’d puke. If he ate 1/2 ounce more than he needed, he’d puke. If he was figthing the bottle as he always did before he was properly medicated, he’d often gag and then puke. It was horrible and I probably should have him evaluated and started feeding therapy. Fortunately, his gag reflex is improving. But he’s way behind other one year olds. He eats no table food and gags on anything except cheerios or puff and dissolve type foods. So, I guess what I’m trying to say is that if I had to do it again I’d get an evaluation and look into feeding therapy earlier. I may still have to do it with Myles. His doctor is willing to wait until he is 15 months old, but she is concerned about it now.

Have you looked into whether or not her Prevacid dose is adequate? Myles really didn’t get any better until he was on the high dose that http://www.marci-kids.com recommends. I fully believe that without that high dose he would have ended up on a feeding tube. It was that bad.

It shouldn’t be this hard to feed a baby. I truly know what you are going through. Please push for what she needs…probably a feeding evaluation or swallow study…maybe some feeding therapy….and most likely a higher Prevacid dose. Maybe some more testing….

Are you trying the marci-kids dose right now? For Myles it took about 10 days to see a big change.

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