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Need Help

post #1 of 2
Thread Starter 

Hello,

 

My husband and I are feeling stuck.. Background: Our son, Michael, was born full term, and we left the hospital thinking all was pretty normal.  We soon had feeding troubles.  At two months, he was admitted to our local hospital for FTT.  It was determined that he was aspirating and on top of this had metopic craniosynostosis.  He had a g-tube placed, we've since had corrective surgery for the cranio, and he's had a team of specialists following him.  Further testing concluded that he also has a submucous cleft and laryngial cleft.   He's had frequent ear infections, leading to ear tubes and has had his adnoids removed.  He's had multiple swallow studies which do not appear to indicate a structural problem.  His pediatrician told me that Michael has the worst refluex he's ever seen, so he's been on reflux meds since 2months.  We only recently had an impedance probe, which revealed normal results (on meds).  After a visit to the endocrinologist, we found that his hormone levels were normal.   We've had genetic testing (even a second opinion), but neither revealed any known syndromes. 

 

Sounds like a lot, but the most stressful piece is the feeding. 

 

Our issue is that Michael keeps going through cycles of vomiting and subsequent upper respiratory infections that have lead to pnemonia.  He also is not growing--he's at the bottom (not even on) the growth chart for length and is around the 3rd percentile for weight. We hoped that the laryngial cleft repair would fix the problem, but it hasn't.  He gets a wet sounding cough, he starts pulling at his ears, and then will cough, leading to vomit after every tube feeding.  It seems like his coughing/gagging on mucus leads to the vomiting.  The cycle is:  wet cough, vomiting, ear and eye infections, antibiotics for upper respiratory infection, 1-3 weeks of being healthy, the cycle starts over again.

 

I don't know what to do now.  Food allergy?  We stopped gluten a long time ago.  He gets Pediasure through his g-tube and tastes of gluten free, mostly pureed foods.

 

If you have experienced something like this and have any suggestions, please send them.  We'll keep trying things and praying.

post #2 of 2

hola.gif  I don't have any experience with what you are going through, but there are some awesome moms around with a wide range of experience. Welcome to mothering.

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