Suck/Swallow/Breathe Coordination Lacking & Weak Suck - Mothering Forums

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#1 of 11 Old 03-18-2012, 05:52 AM - Thread Starter
 
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Quick background since I haven't posted in while- my DD was full term, and born a good size (8lbs 10oz). We've had issues with weight loss and slow weight gain. We got her posterior tongue tie revised at 7 weeks and her lip tie revised a bit later...she's been tranfering milk well since then, but, still undergoing speech therapy for sucking because she still breaks suction a lot, gasps for air, has totally disorganized suck/swallow/breathe (no pattern at all). She has shown improvement in the length of her feedings at breast, but, the coordination and strength of her suck hasn't changed much (she is transfering more milk though and her tongue movement is better and lips are flanged more...she just still lets go a lot and pulls her head back - we think that is a seperate issue of her not sucking strongly enough to elongate my nipples - starting breastshields to help with that soon). She has shown slight improvement with a pacifier which we were told is a good sign, but, still a different suck...they just hope it improves her strength etc. (she has gone from 15secs max before it falls out to usually around 45 seconds, occasionally longer). Our speech pathologists suggested we see a particular feeding specialist they know of and also go back to the ENT for a full evaluation, including nasal passages etc. (when we went for the tongue/lip ties they only examined her mouth)...I have been somewhat undecided if I should do that or not, mostly from the sheer exhaustion of how many doctors and specialists we've been seeing for the past 3 months...each of them helping some and then running out of ideas...I do want to keep helping my little girl but now that she is gaining (slowly, about 2.25oz/week, but, she IS gaining)  I am less concerned. I'm also feeling a bit like this my never get resolved entirely at this point...I guess I am just looking to see if anyone has had success dealing with lack of suck/swallow/breathe coordination and/or weak suck.

 

DD is 14 weeks. She is meeting her other mile stones and has good muscle tone. At this time we are not aware of any other health concerns, though, as I mentioned above we are considering getting a more thorough investigation of that. She is currently breastfed when I am with her and bottle fed when I am at work. She has all the same issues with bottle feeding as breastfeeding (she does not do well with either) I have chosen not to change her bottle nipple or anything because I want to preserve breastfeeding and not make the bottle "too easy" for her. As far as weight gain, I am also eliminating dairy - IBCLC suggested allergies could be causing malabsorbtion, we were fortifying feeds with a high calorie formula (just at daycare) but I may stop for a bit sicne it is milk based. I've already noticed a differince in DDs skin since cutting dairy, so hopefully that will help.

 

Any experiences and/or advice would be appreciated....I feel like my judgement on this is clouded from being so "tired" (emotionally). I'm also wondering if maybe there is some way I can help her get coordinated at home on my own? We are doing other therapies for her at home to imrove strength and mobility, but, nobody has come up with suggestions on helping her with her coordination (other than trying different positions etc which we are doing...it's helped me hold the breast in her mouth but has not changed her suck or coordination).

 

Thanks!

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#2 of 11 Old 03-21-2012, 06:04 PM
 
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My baby almost died from my medical practioner and hospital where I delivered failing to observe his failure to suck swallow and breathe and he was severely dehydrated when we were readmitted to a different hospital. I knew something was wrong but lacked the confidence to speak up until it was almost too late. Anyway while we were in the hospital he learned to suck on a bottle and I used nipple shields until he was about four months and I observed his latch was strong enough to try nursing without. We are a very normal nursing pair now. The shield really helped for us and while my LC suggested that I try to start each nursing session without the shield my exhuasted self couldn't handle the rejection and frustration so I just waited. My baby learned to suck swallow and breathe with an easy bottle nipple the speech therapist suggested and now totally prefers the bond of the breast.

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#3 of 11 Old 03-22-2012, 04:19 AM - Thread Starter
 
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Wow! I didn't realize it could be so serious, though it makes sense...especially with such a young baby! I keep wondering id she doesn't have this coordinating for nursing/bottle than what else will she have dificulty with in the future...she seems do get by ok, I'm not too concerned, but, I really don't want to let it go either. I asked my LC about the sheilds and she doesn't think DD will be able to transfer enough milk with them because she has a poor latch still also (starts out great, but, then slides back to just the nipple) I'm thinking some of her issues now might be related to her having poor muscle tone in her lip and especially her tongue just from not moving them and hopefully building her strength up will help. the coordination part has everyone baffled so far. Did yours just pick it up from time? What was special about the nipple you used?

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#4 of 11 Old 03-22-2012, 06:17 AM
 
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I hear you! DD2 is turning 2 next month, and we've been in feeding therapy since birth. She also had a weak suck and lack of oral coordination, absent tongue groove, etc. Her breathing was always good, though, so I can't really comment on that. Like you, we got a (posterior) tongue tie clipped and then worked constantly on exercises to work on strengthening and coordination. She never kept that darn pacifier in, but she did eventually strengthen her suck, though the coordination issue is one that continues to be a challenge.

I hear your exhaustion, and I beg you to keep going. We have done EVERYTHING possible to get my daughter eating, and it's so terribly demoralizing and frustrating, but it's working. These issues don't just go away: they continue and even worsen as you move on to bottles (as you've seen), cups, baby food, solids, everything. At DD's first birthday, she would scream bloody murder at the mere SIGHT of a spoon, so of course we have no cake-faced first birthday pictures. greensad.gif She fell off the weight charts by 6 months. But with aggressive, constant therapy, today she can actually move things around her mouth, chew (most things), and even swallow. And as frustrating as it is now to see any change or improvement, it's even MORE frustrating with a willful 2 yo who has opinions and years of oral aversions and additional issues to work through. But we're getting there!

I don't want to depress you at all because your daughter has different issues than mine has. That said, I do encourage you to continue facing this head-on, pursuing all paths until they run out, seeking the source and addressing it to the best of your ability, trying everything again even if it didn't work the first time, signing your paycheck over to constant copays to random specialists, etc. Don't assume time will fix it, especially if breathing is involved (she might be aspirating). Definitely go to the ENT, and see if you can find a pediatric feeding specialist, as most SLPs aren't as experienced with pediatric feeding issues, and it makes a world of difference. hug.gif

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#5 of 11 Old 03-22-2012, 04:37 PM - Thread Starter
 
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Quote:
Originally Posted by Mosaic View Post

I hear you! DD2 is turning 2 next month, and we've been in feeding therapy since birth. She also had a weak suck and lack of oral coordination, absent tongue groove, etc. Her breathing was always good, though, so I can't really comment on that. Like you, we got a (posterior) tongue tie clipped and then worked constantly on exercises to work on strengthening and coordination. She never kept that darn pacifier in, but she did eventually strengthen her suck, though the coordination issue is one that continues to be a challenge.
I hear your exhaustion, and I beg you to keep going. We have done EVERYTHING possible to get my daughter eating, and it's so terribly demoralizing and frustrating, but it's working. These issues don't just go away: they continue and even worsen as you move on to bottles (as you've seen), cups, baby food, solids, everything. At DD's first birthday, she would scream bloody murder at the mere SIGHT of a spoon, so of course we have no cake-faced first birthday pictures. greensad.gif She fell off the weight charts by 6 months. But with aggressive, constant therapy, today she can actually move things around her mouth, chew (most things), and even swallow. And as frustrating as it is now to see any change or improvement, it's even MORE frustrating with a willful 2 yo who has opinions and years of oral aversions and additional issues to work through. But we're getting there!
I don't want to depress you at all because your daughter has different issues than mine has. That said, I do encourage you to continue facing this head-on, pursuing all paths until they run out, seeking the source and addressing it to the best of your ability, trying everything again even if it didn't work the first time, signing your paycheck over to constant copays to random specialists, etc. Don't assume time will fix it, especially if breathing is involved (she might be aspirating). Definitely go to the ENT, and see if you can find a pediatric feeding specialist, as most SLPs aren't as experienced with pediatric feeding issues, and it makes a world of difference. hug.gif


That's what I keep thinking of...what if it doesn't stop with breastfeeding. My middle I am pretty sure in retrospect has PTT also, but, maybe not as tight because he gained weight fine and it didn't hurt to breastfeed him. He ended up stayed on purees until over 2, and just recently he is branching out but still chokes really easily. He's almost 3....so with my DD (I think) having had a much tighter frenulum I worry even more.

 

I got an appointment with the pediatric feeding specialist but it is not for 3 months!!! I'm so bummed. I do have an appointment Wednesday with the ENT, I am starting to think reflux may be part of the issue (at least the breathing part) so I am going to ask him about that and hopefully he will do a really good examination of her (he's seen her twice but just for the lip and tongue and did not really look at anything else).
 

 

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#6 of 11 Old 04-17-2012, 03:16 PM
 
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do any of you find the babies are worse at night with cold air?

 

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#7 of 11 Old 04-17-2012, 06:29 PM - Thread Starter
 
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No...It is definitly just worse during and after feedings.

 

For a quick update- Pediatrician said reflux is a huge part of the "wheezing," but doesn't explain the lack of coordnation and gasping for air during feedings...I think it might just be due to her tongue tie still being tight..seeing a pediatric GI tomorrow...not sure what if anything he will say.

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#8 of 11 Old 04-17-2012, 06:40 PM
 
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The reflux may stem from the tongue-tie too. See http://www.kiddsteeth.com/articles/aerophagia_2011.pdf
 

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#9 of 11 Old 04-17-2012, 06:55 PM - Thread Starter
 
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I think so, I'm hoping to take her to Dr. Kotlow within the next couple of weeks to get both ties redone...she is still swallowing tons of air...clicks at least 50% of the time still. I actually think she is getting worse...I've had to start supplimenting her with a bottle almost every feed...she just can't seem t stay latched on.

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#10 of 11 Old 04-17-2012, 09:00 PM
 
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Ok thanks we seem to have a different problem

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#11 of 11 Old 04-18-2012, 12:50 PM - Thread Starter
 
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Originally Posted by Countrygirl10 View Post

Ok thanks we seem to have a different problem



My oldest did that and he has asthma...they didn't diagnose him until he was 19 months and had had pnemonia 3 times...

 

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