*AsOctoberFalls *

Re: *AsOctoberFalls *

• AsOctoberFalls member

  April 2012

  Wow, thanks so much for the information! 

  How did you know he had a swallow issue?  Did they just decide to do a swallow study when he was hospitalized to determine what caused his pneumonia?  

  What does the speech therapist do during his session?  Does your speech therapist come to your house?   They referred us to one also, but I'm waiting to hear if insurance will cover it.  I guess I don't really understand what good it's going to do. 
  

  DS has no issues gaining weight.  However, he won't drink the thickened formula.  They want him on honey consistency, but they don't want us to make the hole in the nipple bigger because they say it will defeat the purpose of the thickened formula.  The problem is, DS gets mad when he sucks the bottle and doesn't get anything out, so instead of trying harder he just swats the bottle away.  Our attempts at feeding the thickened formula so far have NOT gone well.

  They said he was okay with solids.  (I guess they fed him a barium solution that was a pudding-like consistency, and they said it was fine).  Does your DS do well with solids also?

  DS's pulmonologist ordered the swallow study because he's been coughing since he was about 3 weeks old, and the cough was not responding to asthma treatments.  However, the cough actually stopped before the swallow study.  (They had upped DS's reflux meds as well as the asthma meds, but I personally think it's the reflux meds that made the difference).  Since DS won't take the thickened formula, the pulmonologist said it was up to us if we wanted to worry about it since the cough is gone.  I talked to the lady who performed the test, and she said that the test showed penetration that was almost below the larynx, but not quite.  Her recommendation was that we should proceed with the thickened formula because she thought he would probably aspirate at times.  I'm not sure what to do.  Hopefully the speech pathologist can help us!

  How long do you have to keep your son on thickened liquids?

  

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• isacdimi10 member

  April 2012

  DS had issues swallowing from the night he was born. The pedi first said he was just too new and some babies don't have the suck/swallow/breath thing down. At his 2 wk appointment I explained he was coughing and gagging all the time and his chest rattled. I was told it was acid reflux and to put him on rice cereal and an antacid.The amount of rice cereal was minimal so it didn't thicken his formula much. 

  At 1 month they upped his antacid when I said he was still sick. Then a few weeks before his 2 month check my DD had a check up. DS had what I thought was a mild cold on top of his normal issues.  I asked DDs pedi if she could check DS to ensure it was a cold and not an ear issue. She told me I needed to take him immediately to the ER and she would call ahead so they would meet me down there.

  I took him in and his pulse ox was 89 (normal infant pulse ox is 98-100) the put a mask on him and he only went up to 92. The did an xray and discovered he had bilateral pnuemonia and had only approximately 10% function in his lungs. They figured he had pneumonia from almost birth and decided the only thing he was doing since birth was drinking. His barium swallow came back that 25% of the liquid was passing into his lungs.

   

   

  She comes to our house about once a week. In the beginning the speech therapist worked exclusively with DH and I about how to hold him, what his tongue should look like while drinking, tips on how to keep him alert while eating.  She still works with us but she's been trying to convince DS to drink from a sippy cup (which is humorous).
  

   DS does well on solids. It was actually a rush to get him to eat solids (more calories from solids is less time at the bottle). We were told if he didn't tolerate purees or finger food we would end up with a feeding tube.

  DS is on thicken liquids until further notice. Every so often someone (pedi, speech, me) pushes and tries to lessen the thick but he always reacts the same way and starts going down the tube. We were told he could be on this forever or one day he'd grow out of it.

   

  DS had extensive damage done to his lungs from the liquid build up. He will probably end up with an asthma diagnosis and he's more likely to develop upper respiratory issues. He's had pneumonia 4 or 5 times. Because of this if DS even has a cold he develops sleep apnea. So he is on an apnea monitor at night
  

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• AsOctoberFalls member

  April 2012

  First of all, I'm so very sorry you're dealing with this.  The damage to his lungs is really sad.  I hope he doesn't develop asthma!  I know how it feels to know something just isn't right with your LO but to have your doctor write you off.  When I first started complaining about the cough (DS started coughing at about 2.5 weeks old), the pediatrician said the same thing... it's reflux.  I took him to the pediatrician probably 4 or 5 times... I made videos of him coughing... she didn't do anything.  Still said it was reflux and she refused to even prescribe reflux meds.  (I'm still bitter at this lady... I always tell people NOT to go to her when they're looking for a pedi!)

  It was so awful...he'd cough all day long, but at night, you could set your watch by it.  He'd wake up with coughing fits that would sometimes last an hour, and this would happen 3 or 4x per night.

  The new pediatrician also thought reflux.  He'd prescribe Zantac, and the cough would get better for 2 weeks, but it would always relapse.  He referred us to a pulmonologist, and the pulmonologist thought it was asthma and started treating asthma.  That didn't work either.  Eventually the pulmonologist scheduled all these tests.  It turns out that he has reflux AND this dysphagia issue.

  I'm not sure what we're going to do.  Hopefully we will know better after we meet with the speech pathologist. Since his cough is under control now (between new dosages of asthma and reflux meds), the pulmonologist said we can just do nothing about the dysphagia.  I'm terrified that if we do that, he'll develop pneumonia.

  DS's swallow study actually showed deep penetration, but no aspiration.  The lady who did the study said he likely would aspirate under the right circumstances.  She said if it were her child, she would do the thickened formula.

  My question is, I wonder how many kids have this issue, but we don't know it because they never develop problems.  Obviously your son's case is severe, but how many others are like my DS?  Is it necessary to treat?  Ugh.  It's so difficult to make these decisions!  Obviously we all want what is best for our children.

  Do you ever feel like, "Why does my poor baby have to deal with this?"  I struggle a lot with that, then I feel awful for feeling that way because it's not like we're dealing with cancer or something truly awful.  

  Anyway, thanks again for sharing your story.  I hope your precious son gets better.  
  

  

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