Posted By Posting
Mar 12, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Can we talk about aspiration and long term reflux?
It has been over a year and half since Lorenzo has had a significant aspiration episode, but yesterday he went down for a nap showing no signs of respiratory troubles, and woke up gagging and coughing on reflux and now has a horrible junky cough, which is much worse when he is lying down and has no accompanying signs of URI, so I'm guessing he aspirated some of the reflux. How long does it usually take for signs of infection in the lungs to appear, if it occurs? And how concerning is it that he is still doing this at nearly 3 years of age?

I'm feeling pretty confused about how to proceed with him. He still has sleep apnea episodes and still has a pretty weak immune system (though much better than it was last year, thanks to alternative therapies), but he doesn't show any signs of pain from acid in his reflux and the reflux episodes don't seem to distress him all that much. His sleep is still horrible and now he suffers from terrible bouts of insomnia. His weight seems fine at 29 pounds, and he is developing well, but his energy level is much lower than any other kid his age I know. Basically, he continues to compensate well for the challenges reflux bring his way, but the damn disease just does not seem to go away. I'm not sure what, if anything, would be helpful for him at this point, and yet it's hard to accept that this is just going to be the nature of his life forever. I could use any advice or support those who have preschoolers/older kids with reflux can offer about how to proceed when it becomes clear that reflux is here to stay... :( TIA

Mar 12, 2010
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I feel your pain. Ella will be 5 and she still has reflux. It was hard to get into the mindset of the fact that she has a disease we will now have to learn to manage, much like her asthma, that she will have good and bad days.

I will say the two things that have helped us most (once the acid was under control) is watching her diet and making sure she does not get constipated. Regarding her diet we watch the size of her meals as well as limiting the amount of liquid she drinks with food. We also eliminated tomato/tomato products, citrus fruits and juices, chocolate and anything spicy. We just recently (yesterday actually) got her allergy tested so we will see if that provides any additional insight into triggers.

The aspiration issue is scary!! Ella also dealt with aspiration and apnea. I know how hard it is... thankfully that portion of it is MUCH better. She also has asthma and having that treated correctly has limited a lot of the cruddy coughs we were getting. You may want to have a pulmonologist look into the lung/breathing/aspiration issues.

What we were told about the aspirations were that if she was coughing with NO fever then that was fine. We were told to monitor her for fever as long as she was still coughing but that coughing was actually a sign that she was trying to get it out of her lungs on her own. I would def mention it the next time you talk to the DR and see what they think for your little guy.

I will be thinking of you both!!
Mar 12, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Thanks Jen. We are due to see both the ped and the pulmo for his 3 year, so we'll talk it over with them, but there is just nothing like hearing from parents who are actually living with it. It just feels so confusing sometimes, trying to figure out how much to put into efforts to make things better, and how much to just accept as the state of affairs. Naturally I want it ALL to be better, but I know that there are times when a balance needs to be achieved, and that's the tricky part...
Mar 12, 2010
molson1525
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+.
I just wanted to say I know exactly how you feel. My three year old who has had anti-reflux surgery still struggles with reflux although no where near where we were pre-surgery. It has taken me over 3 years to except that this is his baseline and this is probably how it is going to be for him for the rest of his life. Some weeks it is so easy to forget that he even has reflux because he acts so normal and then we have a day like we had a couple nights ago where he literally screamed and cried all night long from foods ingested and constipation that I wanted to cry too. It is really hard to balance the worry and feelings of wanting to help them with just letting them live their life. I really don't think a lot of their symptoms bother them nearly as much as they bother us as parents. We have apnea and aspiration issues here too and it is hard not to think about it when they cough and choke. I agree with Jenn though watch for fever and wheezing if you think it is aspiration and just keep doing what you are doing because you obviously are doing a great job as Lorenzo has come a really long way in the last year.
Mar 12, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Thank you so much. It helps immensely just knowing we aren't alone, and that my own feelings about it are shared by others. I realized at some point, when I saw Lorenzo have a huge reflux episode as he was painting one day, that there is nothing unusual to him about it at all -- he has been doing it since the day he was born, and "if it doesn't hurt, what's the problem", I imagine him saying. Like you said, it is so often much more distressing to me than it is to him...
Mar 13, 2010
johnniesnewmommy
I haven't been on here in a long time but just stopped by and saw your post. Johnnie aspirated all the time if he was even close to laying down. So much so that he refused to crawl, he would scoot sitting up until he learned to walk. He has also been diagnosed with EE. In December we went ahead and had a fundoplication done. I was so scared and fought it for so long but when the reflux was not getting better and looking at all the other problems he was having we decided it was worth trying to see if it could alleviate some of his problems. It has been a life saver for him. He has not had a single episode since that required a breathing treatment. He was on them almost every 4 hours for over a year. He always sounded raspy and I joked we were going to dress him as darth vader for halloween. He came home from the hospital and laid down on the floor. I cried! For the 1st time since he was 2 months old, he laid flat and he did it himself. His lungs are so much better that we have not needed any meds at all, much to the dismay of his lung specialist who still warns that although he seems 100% better he still has asthma. I will not go around without his inhaler but im thrilled he hasn't needed it. I know this surgery has it's risks and doesn't always fix the problem and sometimes needs to be redone. All I can say is that it has been a God send for us.
Mar 15, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Thanks for your input. Lorenzo isn't a candidate for surgery at this point, but you can bet that if the subject comes up I'll be here hollering for more information! I'm glad Johnnie is doing so well after his surgery! He's absolutely adorable...
Mar 20, 2010
momma bear
Aspiration
If your child has aspiration, a history of aspiration pneumonia, gets sick frequently, and has GERD, and this hasn't abated by the age of 2 despite interventions, I would recommend that you ask your pulmonologist or ENT about testing for a laryngeal cleft. Here's a parent to parent forum for the rare congenital deformity which is almost always accompanied by reflux: http://laryngealcleftkids.ning.com/
Apr 12, 2010
brigitte
Brigitte, mother of two girls diagnosed with reflux from birth. Ashley now 6 yrs was a silent refluxer and would choke many times a day. Outgrew at age 2. Recently started complaining about reflux. Yougest daughter has milk protein allergy. Still on Neocate and Prevacid at 2.5 years. Aspirates occasionaly.
When aspirating, signs of infection in the lungs will take 3-4 days to appear. They won't see it on an x-ray before that. When my daughter aspirates, she will cough non-stop that night and will not sleep much the subsequent nights (probably because of lying down with fluid in the lungs). My daugther is 2.5 years and I am also disappointed that this is still happening. I am now very careful not to give her any liquids before bed time. She also had more frequent aspiration episodes when not on Neocate. The Neocate is probably much easier and quicker to digest. We recently had a very scary episode last week where she had a reflux one morning in the car and seriously choked on a piece of food (from her breakfast) that came up in her oesophagus with the reflux. This is when you realize that it needs to stop. How did you find out that he had sleep apnea?
Check with your
doctor first!