Special Needs

Dysphagia early on?

Hello everyone.  My little one is only 3 months old.  He has had a bad "sucker" since birth and we abandoned breastfeeding the second week home (I also had a super low supply and was already supplementing).  He has been SUPER fussy all along (with friends, relatives, nurses, docs all looking at my with those "she's just a first time mom" eyes).  Doc thought maybe reflux and started Zantac at about 6 weeks.  He started looking up from abotu 7-9 weeks and was starting to "talk" and smile.  Then at about 9 1/2 -10 weeks he started screaming again.  Doc thinks he outgrew Zantac and started Prilosec.  Then asked about his feeding and ordered a swallowing study.  He does have dysphagia, but adding the thickener makes it too hard to get out and his intake has gone way down.  (Plus the added "bonus" of constipation, the one thing I WASN'T worried about before:)  So we have a follow up with the SLP Monday and are going to look at uping his calories.  Also will have an MRI and a visit to the GI specialist.  Just wondering if anyone has delt with this?  Wondering if CP is the problem and if they'll even be able to diagnose something like that this early.  So proud to be a momma, just want to help my little man thrive.  Any thoughts/advice would be SO welcome.  TIA.

Re: Dysphagia early on?

  • Is he getting OT for his feeding difficulties? I'd probably start there since that's a pretty basic place to start and could help. Is his reflux under control now? I've heard Prevacaid and Nexium often work better than Zantac.
  • My son has neuro issues and struggled with BF-ing due to an inability to latch and suck, due to low muscle tone. He also has dysphagia. You could say he has CP because he does have a brain injury called PVL which can cause muscle tone issues (high or low tone). This brain injury can be seen on an MRI, so hopefully that should give you some information.

    Due to your LO's dysphagia, he should qualify for speech therapy with a feeding specialist who can help you find a way to get the right thickness without making it too difficult for him to get the fluid. Definitely let your docs know right away  if he is unable to get enough fluids down.

    It sounds like you are pursuing all the right avenues to get help for your little guy. Don't be shy about speaking up if you notice things that don't seem right. GL! :) 

     

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  • My oldest has oral stage dysphagia and had horrible reflux as an infant/toddler. She was on reflux meds and thickened feeds. One thing we discovered was that Dr. Browns makes a Y cut nipple which allows the thickened formula to pass through much easier making feeding a lot simpler for everyone involved.

    Definitely try to get into an SLP or a feeding clinic now. DD1 wasn't fully diagnosed until she was almost 3 with dysphagia and we still have feeding difficulties, but they are lessening as she gets older. She also has low muscle tone in her trunk, but not CP. They've never really given us a reason for it, its just sitting there on her chart.

    Good luck with everything.

  • How did you know the Y cut nipples were safe (no aspirating?).  Also, not sure if they'll let us since he's only 3 months old.  The Doc Brown level II was shown to be safe, but he's having trouble and falling asleep from the effort.  Also, I HATE how those bottles get gunked up with the thickener and I can't tell how much he's really taken until it all SLOWLY settles back down after a feeding.  You didn't start the thickener until age 3? Thanks for your reply.
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  • Not sure if the reflux is really under control next.  Pedia thinks her GI friend will recomment Nexium next.  Thanks for your reply.  SLP meeting Monday.  Should be getting a team eval (including OT) soon.
  • Thanks for the reply. Can't wait to see what the MRI says so we can get interventions in place ASAP when/where needed.
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  • Lydia started the thickener at about 6 weeks. We tried a variety of things but her frustration level was super high. My mom mentioned that when I was born she used an X cut nipple (I was a preemie with no suck reflex) and that maybe somebody did something similar. A few google searches later and we found the Dr. Brown Y cut nipples. The opening, while larger to allow the thickened formula through, doesn't drown the baby like some of the faster flow nipples without being thickened.

    Basically, we found it was safe through trial and error. We weaned off the thickened feeds around age 2 when we also weaned her off the bottle and formula. She now is fine with water/juice type liquids but will not eat things like applesauce or soup or anything that she cannot physically pick up with her fingers.

  • My LO was dx with aspiration due to dysphagia (has laryngeal cleft) when he was 2 months old.  At that age we thickened his liquids using rice cereal- though we ended up having to use Y cut Dr. Brown nipples bc the thickened drinks wouldnt come out of nipple well (used for thicker drinks....you can buy at Walmart....Babies R Us etc.)  That way he was able to increase his intake...but still have thickened liquids.  When he was older we switched to simply thick (still used y cut nipples until moved to straw cups etc.)  Please let me know if I can answer any questions! GL! 
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  • I was wondering why they didn't have us add rice cereal (or SOMETHING with nutritional value) instead of the simply thick.  Can't wait to ask that tomorrow.  Also, how (without more radiation from another swallowing study) would they be able to know if a faster nipple flow, or Y cut nipple was safe???  Also thinking, why wouldn't we go BACK to a slower flow nipple and NOT have to add this thickening gel?  Again...can't wait for our appointment tomorrow.  Thanks for the input!!!!

  • I would try another medication.  Zantac and Prilosec did nothing for us, our only answer is Prevacid.  Our GI said something about how babies metabolize things so fast and the way prilosec acts causes it to wear off much sooner than it should.   

    also, when you thickened the formula did you increase the nipple size?  We couldn't use thickeners (simply thick/thick-it) because of constipation issues, DS would scream and scream.  So we used rice cereal.  The only thing DS could take was Enfamil AR ready to feed.  It was thick enough to keep it down, but think enough to fit through a regular nipple.  Eventually the rice in it was just too binding for DS and we switched to regular powdered enfamil and oatmeal. 

    We went through months where DS would eat 8oz a day. all in half oz increments and screaming the whole time.  Actually your LO is the exact same age when our Failure to Thrive struggle started.  Have you discussed thickening formula with cereals (oatmeal has great fiber in it and is easier to pass than rice) versus the commerical thickeners?

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • I will call for Prevacid asap!  It was a rough eveing!.  Thank you for the info.  We had recently switched to Doc Brown's level II nipple and when the test was done, that was the one he was aspirating with (wish I would have thought to bring the level I).  So the told us to use this same level II with the simply thick.  He is sometimes getting 2-4 oz, so I gues that's something (was taking 5 oz before).   They told us we would NOT be using rice ceral or oatmeal because it is "too lumpy." Cant't wait to meet with them tomorrow!!!  So far he can still have a BM, but it's more effort and thicker.  What nipple were you using?? 
  • image teacherannie:
    I will call for Prevacid asap!  It was a rough eveing!.  Thank you for the info.  We had recently switched to Doc Brown's level II nipple and when the test was done, that was the one he was aspirating with (wish I would have thought to bring the level I).  So the told us to use this same level II with the simply thick.  He is sometimes getting 2-4 oz, so I gues that's something (was taking 5 oz before).   They told us we would NOT be using rice ceral or oatmeal because it is "too lumpy." Cant't wait to meet with them tomorrow!!!  So far he can still have a BM, but it's more effort and thicker.  What nipple were you using?? 

    We were using Level II and III for us because DS has severe hypertonia aond couldn't coordinate his tongue and suck strong enough for a Level I.  I used to have to lay him flat on his back and tap the bottle just to get him to take the 2 oz required to get out of the NICU.  If you plan on thickening I would ditch the Dr. Brown's.  That stupid brown rubber vent piece always clogged (where those slots are) etc.  Also, one bottles Level I is another one's fast, another one's slow, etc.  If you turn a full bottle upside down and count the number of drops in 10 seconds it will give you a rough estimate of what your DS is able to handle swallow wise.  The Dr. Brown's Nipples also fit the Playtex Ventaires, thats what we switched to when we started thickening.  The rice/oatmeal will be lumpy but you can make it EXTRA thick and use a cereal nipple.  Our GI told us 1 Tbsp/oz, it makes a very thick formula that may be even easier for your LO to eat because it has good bulk.  You will need a rice cereal nipple (the Dr. Brown's y-cut) and you will have to play around with the amount of cereal in the bottle for it to flow well.

    For us it was a long battle after getting the thickening right.  He was so uncomfortable and so used to being in pain that he had a strong bottle aversion.  So we started with 1-2 oz and just kept trying and let his esophagus heal.  If he cried we took the bottle away completely and tried again 20 min later (like I said he was only eating 8-10oz a day so we had to try as often as possible).  It may be a struggle even after you figure out the consistency issues simply because around 3 months they can start associating action with pain/discomfort.

    Are you using nectar or honey consistency simply thick?  I think Nectar consistency is about 1.5-2tps oatmeal/rice per oz.

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • image teacherannie:

    I was wondering why they didn't have us add rice cereal (or SOMETHING with nutritional value) instead of the simply thick.  Can't wait to ask that tomorrow.  Also, how (without more radiation from another swallowing study) would they be able to know if a faster nipple flow, or Y cut nipple was safe???  Also thinking, why wouldn't we go BACK to a slower flow nipple and NOT have to add this thickening gel?  Again...can't wait for our appointment tomorrow.  Thanks for the input!!!!

    LO had 9 swallow studies in about 1.5 years.  When he was still in the hospital the SLP came to us everyday to observe and evaluate his swallowing and having liquids thickened (after dx of aspiration)....so she looked for clinical signs of aspiration and we adjusted from there.  For us a slower nipple was not an option...he still aspirated.  I would make sure you are working with an SLP that is experienced in swallow therapy...that way you can learn how to detect signs of aspiration and can work with the clinician on adjusting the thickener as needed.  For what its worth I LOVE simple thick compared to ALL other thickeners.  Power thickeners were awful- continued to thicken drinks over time. Simply thick is great- I can thicken a whole pitcher of milk while maintaining consistency.  We had major GI issues when using rice cereal to thicken...I preferred getting his calories elsewhere.  He was on nutramigen and then elecare after that due to food allergies and milk protein allergies.  GL! 

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