Posted By Posting
Jun 20, 2009
I haven't seen you post in a while, but you told me to ask you if I had any more fundo questions. Holden has begun aspirating. Also we talked about his LES being wide open the same as your son's. I just want to be prepared if we continue to have respiratory issues. Just wondering how to get up with you!
Jun 20, 2009
mom to 4 kids with probable
Mitochondrial Disease
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
Connective Tissue Disorder,
Visceral Hyperalgesia, and more
Many meds
Sorry to butt in..My son has also had the fundo, he has severe aspiration,what would you like to know?
Jun 20, 2009
I was going to ask her about why they didn't do a g-tube first. I was curious if it was for the same reasons my docs are telling me. I also knew her son had the open LES, very similar probe results (202 episodes with 98 being full esophagul), as well as the sleep apnea like Holden has. Holden's pulmo said in April that his bronch was normal but I was reading the full report and it did show minimal aspiration but I guess the pulmo would consider that normal. It has been in the past couple of weeks that things have gotten bad. He has been choking all the time. Then he wakes up with breathing issues (constant cough that makes him cough so hard he pukes-not your typical congestion cough) Our current GI, pulmo, and ENT are telling me that if he has any aspiration issues or not sufficient weight gain by our appointment June 30th they are referring us to the surgeon. We cancelled our appointment June 30th with them and are going to a new GI. Anyhow, I always hear the bad stories but I knew hers was a good one and I am worried that his LES is wide open. I guess my main question was what were her son's reasons for not trialing the G first and what were her docs telling her about it. Holden just sounded very similar to her son. Thanks for helping.
Jun 21, 2009
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Sorry I haven't been able to respond I am vacationing and not able to respond very easily because I keep forgetting my password. We didn't do a g-tube because my son didn't have any eating/weight issues. He was gaining weight like crazy mainly because he always comfort fed with formula. That was a lot of his problem he ate so much that he was constantly refluxing. We decided on the fundo for many reasons beside the aspiration though. The week we finally consented to surgery my son had 3 ALTES where he turned blue and stopped breathing and we had to call 911. Besides his bad probe results he also had severe esophagus damage and continued to have that damage even on super high doses of meds. So all that combined with aspiration pneumonia and the apnea was what pushed us over the edge. I wish I consented earlier now knowing how much happier he is but like you my husband and I needed to know in our hearts that we had exhausted all options before surgery because it is life altering. We got 3 opinions all the same before we consented. I hope you find the answers you are looking for. Let me know if you have any more questions. Jessica is a great resource too as well as Baby Quinns Mommy. Keep us posted after your second opinion.
Check with your
doctor first!