Posted By Posting
Nov 07, 2009
lovemypies
Kayt 10, Aubrey 5, Justin 2 and Jacob 4 months-Tracheomalacia, reflux, apnea and aspiration on swallowing.
Update onJsacob
ok, so they decided to do another bronchoscopy... we had it done on Tuesday after one full month of thickening all his liquids to 1/6 nectar and his lipid levels are the same...100. Now the dr's are talking about it being reflux related, wanting to do MORE testing and put him in the hospital for it. They are talking Motility meds, fundo.... So... here is my question. My kids is healthy. Never had pnemonia even tho he has been aspirating since birth. I was told by the Lactation nurse that she thinks it is ok for me to nurse him in a modified way where I would pump past letdown and nurse him on hind milk only which is thicker than foremilk. We did this in the office as she observed and he did great with it. I do not physically see anything wrong with him, except that he is a noisy eater at times, sometimes gets fussy if I eat wrong. I just think that doing further things at this point does not make any sense. What woudl you do? I feel like tellinging them that I don't want anything else done, and to just see how he does. If he gets pnemonia or starts having complications from the aspiration, other than just that number on a paper in the office.... then I will do other things, but why fix something when there are no symptoms? FRUSTRATED!!!!! They also want to do RAST testing... we had him poked twice in the office, they dug around in his arm for over 20 minutes and did not get even ONE DROP of blood.... is it really worth it? I just want him to be a normal kid!!!!!!!! We started nursing again with the guidence of a LC and he is doing great. At first he spit up almost every feed but now that he only does about 7 oz total of thickened milk/day his motility seems better and he hardly spits up at all anymore. We have another pulm apt in Tucson next week for a second opinion.
Nov 07, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
there are a lot of reflux kids that do well with modified liquids and modified breast feeding and DO grow out of many of the scares they have as infants. If you feel he is healthy and his is growing and eating and doing fine- then tell them! he is your baby, just as we have to be great advocates to get care for our kids, we also have to be great advocates to get the right type of care. Sometimes the older they get the better control they have over swallowing, other times just growing and getting taller, which adds length to the esophagus is a great help against aspirating below. I would seek more advice about the allergen testing and definitely stick with LLL! they sound wonderful! I do hope you find the right guidance to help you make these tough decisions but no matter what, ask your dr the pros and cons of every option. you can tell them no, let's wait, and they have to respect that. good luck to you! *hugs*
Nov 07, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
PLEASE, Don't take this the wrong way......I would be very very careful taking medical advice about aspiration from a L.C. they are not trained, medically, to spot those issues.

I would wait it out and see what the Pulmo has to say about it.

Have you had a swallow study done yet???

I can totally relate to wanting a normal child, I really can. but, aspirations, even minor one, over time can lead to permanent damage.

Really, I don't want this to come across the wrong way, I really don't. Just be careful. We had to learn not to take medical advice from our old S.T. as well.

Check with your
doctor first!