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Old 03-18-2012, 04:16 PM   #1
lilmomma83
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Lack of suck/swallow/breathe cordination & "weak" suck

Oppologizing in advance if anyone is on another forum/group where I have posted this...just hoping if I post multiple places I will be more likely to get an answer.

Quick background- 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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Old 03-19-2012, 11:51 AM   #2
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Re: Lack of suck/swallow/breathe cordination & "weak" suck

I don't have any experience or advice, but I wanted to give you and encouragement! It sounds like you are doing all the right things for your little girl! She is gaining weight and meeting her milestones, and that is awesome. I think you are right to keep pursuing evaluations by specialists and LCs that might be able to help, and to keep breastfeeding her. It doesn't sound like bottle feeding will make her issues disappear. Just keep pushing through Momma!
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Old 03-19-2012, 04:56 PM   #3
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I suggest seeing the other specialists. I have a hearing impaired daughter, and think knowledge is power. Even if the other docs have no new help, you know there ISN'T some other hidden problem, and you will know you are doing everything in your power for your LO. It's overwhelming, it's discouraging, there will be times when you wonder why you bother, times you feel defeated, times you feel the world is out to get you, but at the end of the day I take comfort in the fact that I am doing the best I can for my daughter.
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Old 03-19-2012, 09:05 PM   #4
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Re: Lack of suck/swallow/breathe cordination & "weak" suck

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Originally Posted by mibarra View Post
I suggest seeing the other specialists. I have a hearing impaired daughter, and think knowledge is power. Even if the other docs have no new help, you know there ISN'T some other hidden problem, and you will know you are doing everything in your power for your LO. It's overwhelming, it's discouraging, there will be times when you wonder why you bother, times you feel defeated, times you feel the world is out to get you, but at the end of the day I take comfort in the fact that I am doing the best I can for my daughter.
Thank you for sharing. I seriously cried reading that...you just totally described what I have been feeling...sometimes it feels like nobody understands. Even my husband tells me she is fine and to stop...and I keep telling him I will....but, I can never seem to get rid of the "what ifs" I just worry there will be no end... Thank you so so so so much...so good to know I'm not the only one with these feelings.
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Old 03-19-2012, 09:18 PM   #5
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Quote:
Originally Posted by lilmomma83

Thank you for sharing. I seriously cried reading that...you just totally described what I have been feeling...sometimes it feels like nobody understands. Even my husband tells me she is fine and to stop...and I keep telling him I will....but, I can never seem to get rid of the "what ifs" I just worry there will be no end... Thank you so so so so much...so good to know I'm not the only one with these feelings.
I am glad it helped. There are people out there who do understand! Husbands are the worst sometimes, too good at compartmentalizing their feelings and maintaining the status quo, but they do care. Sometimes I just want to smack mine, and there have been times I have honestly started fights with him because I want to see him show some emotion. There are days when I sit on the floor and cry at the unfairness of it all. Are there people out there who have it worse? Absolutely, but that doesn't belittle your struggle, or the fear you'll miss something important, make a wrong decision, screw something up with catastrophic results, somehow ruin your childs life by making the wrong choice....that's why I am in favor of more info, at least I can say I know what I'm choosing, KWIM? There will be rough patches, but it does get better!
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Old 03-20-2012, 11:43 AM   #6
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Re: Lack of suck/swallow/breathe cordination & "weak" suck

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Originally Posted by mibarra View Post
I am glad it helped. There are people out there who do understand! Husbands are the worst sometimes, too good at compartmentalizing their feelings and maintaining the status quo, but they do care. Sometimes I just want to smack mine, and there have been times I have honestly started fights with him because I want to see him show some emotion. There are days when I sit on the floor and cry at the unfairness of it all. Are there people out there who have it worse? Absolutely, but that doesn't belittle your struggle, or the fear you'll miss something important, make a wrong decision, screw something up with catastrophic results, somehow ruin your childs life by making the wrong choice....that's why I am in favor of more info, at least I can say I know what I'm choosing, KWIM? There will be rough patches, but it does get better!
I think about all the people that "have it worse" too...and feel silly for getting upset! Then sometimes I feel like all I am doing is drawing attention to myself and I feel guilty for that...even though it's not really what I am trying to do. I did just call the ENT to set up an evaluation of DD's nasal passages and I am going to set up an appointment with the feeding specialist too...no regrets that way as you said.
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Old 03-21-2012, 09:01 AM   #7
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Re: Lack of suck/swallow/breathe cordination & "weak" suck

I can definitely chime in here! My dd is 6 mos and had a posterior tongue tie/lip tie clipped at 4 mos. We don't have insurance, so I was limited on resources, but I talked to hospital lc's, IBCLC's, dentists, and even emailed the big ones, like Catherine Watson Genna and Dr. Kotlow (they were both very helpful, unlike the others) So, at 4 mos I basically decided that I was either crazy, or right and made the 3.5 hour drive to see a ped. in St. Louis MO to have the ptt/ult clipped. Turns out I was NOT crazy! My husband was not behind me until I basically started a fight, and my Mom didn't believe me until after I had it clipped. So, at 6 mos. we are still having issues as well. YOU ARE NOT CRAZY!! Trust your mama instincts and just keep talking to ppl and gathering information like the other mama said. A couple suggestions: we are seeing an OCT/feeding therapist who is going to use "Vita Stim" (as in Vital Stimulation) on our dd to help increase muscle tone in her tongue. It is 2 pads that are placed on the bottom of her chin, and send out very minute electrodes. I'm a little nervous but if you are interested I can let you know how it works, and it might be something to talk to your therapist about. It is similar to "E-Stim" from what I've heard. Also, we are seeing a CranioSacral Therapist also. This is highly recommended for after you have the ptt clipped. It is generally not too expensive and you should see some results between 3-6 sessions from what I've been told. Do your research to find someone who has had the pediatric classes and can do the work inside the mouth. The Upledger Institute is a good resource for finding a CST in your area. Some ppl say they do CST, but I'm on my 3rd person, so find someone who has had lots of classes and has worked on a lot of infants with oral motor issues. If I think of anything else I will post it later. Just keep on keepin on mama! The breast is the best!!
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Old 03-22-2012, 05:13 AM   #8
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Re: Lack of suck/swallow/breathe cordination & "weak" suck

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Originally Posted by e_roehm23 View Post
I can definitely chime in here! My dd is 6 mos and had a posterior tongue tie/lip tie clipped at 4 mos. We don't have insurance, so I was limited on resources, but I talked to hospital lc's, IBCLC's, dentists, and even emailed the big ones, like Catherine Watson Genna and Dr. Kotlow (they were both very helpful, unlike the others) So, at 4 mos I basically decided that I was either crazy, or right and made the 3.5 hour drive to see a ped. in St. Louis MO to have the ptt/ult clipped. Turns out I was NOT crazy! My husband was not behind me until I basically started a fight, and my Mom didn't believe me until after I had it clipped. So, at 6 mos. we are still having issues as well. YOU ARE NOT CRAZY!! Trust your mama instincts and just keep talking to ppl and gathering information like the other mama said. A couple suggestions: we are seeing an OCT/feeding therapist who is going to use "Vita Stim" (as in Vital Stimulation) on our dd to help increase muscle tone in her tongue. It is 2 pads that are placed on the bottom of her chin, and send out very minute electrodes. I'm a little nervous but if you are interested I can let you know how it works, and it might be something to talk to your therapist about. It is similar to "E-Stim" from what I've heard. Also, we are seeing a CranioSacral Therapist also. This is highly recommended for after you have the ptt clipped. It is generally not too expensive and you should see some results between 3-6 sessions from what I've been told. Do your research to find someone who has had the pediatric classes and can do the work inside the mouth. The Upledger Institute is a good resource for finding a CST in your area. Some ppl say they do CST, but I'm on my 3rd person, so find someone who has had lots of classes and has worked on a lot of infants with oral motor issues. If I think of anything else I will post it later. Just keep on keepin on mama! The breast is the best!!
Thanks! I made my appointment with the feeding specialist yesterday, but, it isn't for 3 months! I was so disapointed/surprised to have to wait that long! It never occured to me that her tongue might just be weak...makes so much sense though because she could not move the back of it at all...it was really tight...I guess if you think of it like that, it's been free for 7 weeks, so it is almost as if she is still in utero as far as how much she has been able to exercise it - her suck is very immature...this gives me so much hope!

I would love more info about the v-stim...it does sound like something I would be nervous about, but, that's been a lot of things and if it helps it may just be worth trying.

We saw a chiro before getting her revisions and he adjusted her jaw and we haven't been back - I do think her jaw is out line again. Sounds like the CST would be even better though, i will have to see what is available and cost. We don't have a lot of extra money for this either, we just thankfully have medicaid which is covering most of the expenses...not anythign "alternative" though.

We see the LC again tomorrow and she is going to do another oral exam so we can see how her tongue is operating now, so that should be interesting too.
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Old 03-23-2012, 12:13 PM   #9
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Re: Lack of suck/swallow/breathe cordination & "weak" suck

Do you have an update for us? I'm wondering how your Chiro appt went aOnd your meeting with the LC for oral exam? I will let you know how the "Vital Stim" works out if/when we start treatment.
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Old 03-23-2012, 09:08 PM   #10
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Re: Lack of suck/swallow/breathe cordination & "weak" suck

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Do you have an update for us? I'm wondering how your Chiro appt went aOnd your meeting with the LC for oral exam? I will let you know how the "Vital Stim" works out if/when we start treatment.
I wasn't able to take her to the chiro..still want to though.

The LC says that DD has good tongue movement, but, her suck is still very weak and she is still constantly breaking suction. We are thinking silent reflux might be a factor though now, I'm going to ask the ENT about that on Wednesday...

She also gained very little...an average of 1.5oz/week...she had gotten up to 2.25oz/week the last time we checked her weight and 3.5oz/week is the goal her pediatrician has. We did stop fortifying her bottle feeds (At daycare) though, so that could be the issue.
I would love to hear about your results with the vital stim!
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