"disorganized" sucking - Mothering Forums
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#1 of 4 Old 04-01-2006, 04:29 AM - Thread Starter
 
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So my 8 week old DD has been diagnosed with disorganized sucking by an LC/occupational therapist at our local Children's Hospital. I am wondering if she'll learn how to suck well or not - has anyone experienced this?

She used have better sucking, but we have had nothing but obstacles with BFing since she was 1 week old. I got a nasty infection and nursed on one side, pumped the other from weeks 2-6. After the infection cleared, I started nursing on both sides gradually, and found I had oversupply. My DD started being very fussy on the breast but was gaining weight well. Last weekend I took steps to reduce supply and now her weight gain has slowed dramatically, she is not sleeping as well and I was referred to this LC/OT.

Turns out she was gaining weight in spite of poor sucking because of the oversupply. Now that the supply is normalized (not low, apparently) she is not getting enough milk b/c she doesn't suck and swallow well.

It seems like she knew what to do initially. Will she learn again?

I am so depressed over this whole thing, I want to BF so badly but I am losing hope that it will ever work out for us.
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#2 of 4 Old 04-01-2006, 09:07 AM
 
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Sorry to hear about your difficulties with breastfeeding. I have a couple of questions for you. Did the OT (occupational therapist) give you any ideas of things to do for your DD's disorganized sucking? If not, you may want to give her a call and see if she has any suggestions. I am a speech therapist and up here in Northern MN we are the people who deal with feeding issues (poor suck-swallow-breathe coordination, poor latch), but it differs from region to region regarding if occupational therapists or speech therapists address the issues.

It can get better and you shouldn't need to stop breastfeeding. Call the LC/OT and find out what she would suggest you try. Sometimes doing non-nutritive sucking on a pacifier can help. Have you tried a pacifier? I know that there is the whole nipple confusion thing, but sometimes some kiddos really benefit from practicing a little bit. I would ask the LC/OT if that would be recommended. Other things you might try. . . swaddling her really tightly keeps her from having to keep her body calm and organized so she can just concentrate on eating. Keep the room that you are in calm and quiet if possible. Sometimes rocking can help. Keep the distractions to a minimum. Can you try cup feeding/finger feeding to help her get her nutrition? Are you pumping?

Babies mouths change as they get bigger, so things can be good initially and then get worse. Things can get better again. Your DD just needs some help to figure it all out. Don't give up. Call the LC/OT and find out what you can do to help her figure it out. That is part of her job too. If she can't give you any suggestions, find someone who can. Sometimes, we have kiddos come back for regular appointments for a few weeks just to make sure that things are getting better.

Sorry this is a bit scattered. I haven't been in the work mode for two months. If you have any more questions, I can certainly find out some answers for you. I work with a great speech therapist who works with many babies with feeding difficulties. Good luck. Don't give up! Find a good resource that you can use to answer your questions. It can get better!!

Nena, Wife to S since 1995, mom to G (my wonderkid) since 2000 and R since 2006 (my snuggley boy who was diagnosed with mitochondrial disease in 2007)
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#3 of 4 Old 04-01-2006, 12:47 PM - Thread Starter
 
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Thanks for your reply - I need some positive feedback right now! Making things worse is that I just got my first pp AF back, and am so emotional right now. (I think the lower supply and DD's infrequent feedings helped bring that about... )

The OT has me feeding as normal (which for DD is 5-7 times a day) and using breast compression to try to get her to continue sucking/swallowing. I am to pump to bring the number of times the breasts are emptied up to 7 if she does not eat that much on a given a day. I go back next Friday to see how things are going, I suspect an SNS or something would be the next step.

I tried to give her my finger to suck yesterday and it seemed like she couldn't do it - her tongue was just not doing the right motion and she didn't suck. She's not really a "sucky" baby, but has sucked my finger a few times before and it was different.

I guess I just feel like I have given nearly 9 weeks of my life (and my DS's life in a way) to getting BFing going and I still don't see the light at the end of the tunnel where this will go smoothly and easily and I can leave the house!

Is there a specific brand of paci that works better? I will ask the OT about that at our next appt. So far DD has not had any bottles or pacis.

Thank you.
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#4 of 4 Old 04-01-2006, 04:54 PM
 
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As far as pacis go, it depends on what your DD likes. I know some families that have tried many different kinds until they find one that works. It all depends. I would keep trying to offer her your finger for now. I can check with a friend at work to see if there is anything she would recommend. I would just keep up with what you are doing. She will figure it out, eventually. Some babies just have a bit more trouble. Keep talking to your OT. She should have some other ideas for you.

Good luck!!

Nena, Wife to S since 1995, mom to G (my wonderkid) since 2000 and R since 2006 (my snuggley boy who was diagnosed with mitochondrial disease in 2007)
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