Introduction - multiple breathing/feeding issues
AsOctoberFalls
member
Hi everyone. I've been lurking for a while and I'm not really sure that I belong here, but sometimes I feel like I don't belong on "regular" boards either.
My 10 month old DS is a joy, but he has some issues. It started with a cough when he was 3 weeks old. His pediatrician said it was reflux and he'd outgrow it. I took him to see her at least 5x about this cough before switching pediatricians. The new pedi referred us to a pediatric pulmonologist.
The pulmonologist diagnosed DS with asthma at 6 months old and began treatments. However, the cough didn't go away. This led to a barrage of other tests. In the end, we found out that DS has reflux, esophogeal dysphagia with aspiration, and possible asthma. He also has food allergies. He's tested negative for everything, yet still reacts in severe hives to certain foods. (I haven't figured out what the trigger is yet).
These issues aren't really major. He has to eat thickened liquids and is at increased risk for pneumonia. He is on daily inhalers and reflux medication. We have to be very careful with food introductions and very strict on what he can and cannot eat at daycare. Despite the fact that these things are easily controlled, I feel really stressed. I struggle a lot with the "why my baby" thoughts, and I feel so awful for feeling that way because I know that it could be a LOT worse. Still, it's difficult to know he's not perfect. (Even typing that makes me feel bad, but that truly is how I feel sometimes).
I feel jealous of all my friends because none of their kids have any issues at all and my kid has several. I feel detached from people discussing their "normal" children sometimes. I also am really struggling to work full-time while trying to fit in TONS of doctor appointments, since DS sees 3 different specialists (pulmonologist, allergist, and speech pathologist... they deal with the dysphagia).
So anyway, since I've been lurking here a long while, I figured I should introduce myself.
Re: Introduction - multiple breathing/feeding issues
Welcome!
At last check P had 13 doctors and 4 other providers (therapists, etc) involved in her care (and we have a few more to add since then). And she is no where near as 'sick' as many many kids. The perspective, of knowing it could be worse is kind of a coping mechanism. Kind of like throwing cold water when you are barreling down the tunnel of why me why me and feeling sad. I have to do it on a monthly basis.
It's normal for you to feel that way because your child is having to go through things other children don't and you as a parent are experiencing things many others don't.
If you've been lurking I would hope you would have seen we are a group of fairly laid back accepting ladies who will offer any support/info that we can
I know a couple other parents here have food allergy issues who may be able to offer advice.
And kudos to you for following your gut instinct and finding a new pedi.
One question, did your LO cough ALL the time? We have night time coughs but both girls are off reflux meds now (Peyton has been for WELL over a year) so they have thrown around 'cough variant asthma' however a neb treatment before bed doesn't really seem to change the cough. Which can be fairly bad and even result in puking from coughing so much.
Welcome!
Thanks for the welcome! This does seem like an accepting board, but I wasn't sure I'd be welcome because so many are dealing with so much worse than we are. I just didn't want to offend anyone.
DS coughed during the day some, but at nighttime it was just constant. He'd have coughing fits that would last an hour or more. He coughed every day of his life from 3 weeks to 8 months. The albuterol inhaler and two rounds of oral steroids never seemed to help. He was on reflux meds that did seem to help somewhat, but only for a couple of weeks, then the cough would come back.
The cough went away completely once he was on Flovent inhaled steroids and the max dose of Zantac for his weight. They aren't sure which medication did it, so I believe they are going to try weaning him off the asthma meds in August at his next appointment. They just want to let him be stable for a while first. The pulm did say at our last appointment that he is doubting the asthma diagnosis, mostly because the cough never responded to the oral steroids or albuterol. I also suspect the reflux was causing the cough even though DS never spit up and had no other symptoms of reflux (reflux was confirmed with a chalasia scan). This is mostly because the cough always responded to Zantac and went away completely once the dosage was at the current level.
The dysphagia didn't cause the cough in his case, but they are treating it anyway because it can be really dangerous.
Did your girls cough when they were on the reflux meds? I post on the asthma board on babycenter, and it seems like asthma is misdiagnosed a LOT, especially cough variant asthma. I've learned in my research that TONS of things can cause a cough. (Our pulm also did allergy tests and was going to do a bronchoscopy if none of the other tests gave us answers). I'm especially wary since the breathing treatments don't seem to help.
Hope this helps a little. Night time coughs are the worst...it's heartbreaking to listen to.
Yeah I remember that they both coughed on the meds too. M just quit her meds like 2 weeks ago and she was coughing then too. She has had an upper GI (while she was on meds) and it didn't really show anything.
Theirs may be allergies but allergy meds don't seem to help either way, you can hear a little bit of congestion. I had asthma (really bad) as a young child. I know the allergy dr I took P too for it last year also is an asthma dr (but not a pulmonologist) maybe i'll just kinda keep an eye on it but make a game plan to try and figure out the cause.
Thanks for all the info!
DS1 was born with Esophageal Atresia (EA) and Tracheoesophageal Fistula (TEF). We are very much in a similar place as you -- along with his dairy allergy that produces hives.
Has your LO been checked for eosinophilic esophagitis (EE)? Has TEF been ruled out? Have you had esophagrams completed?
I mean, the symptoms you describe are very much in line with EE, or a missed fistula. That is SO crazy that there's no "real" allergy, but LO is still having hives.
Welcome to the board!!
ETA: I guess I should add that DS1 is repaired, but his esophagus has an anastomosis where he was connected, and a bit of tracheomalacia. He also has a hiatal hernia, and is on Prilosec in oral suspension twice daily to ensure that no stomach acid aggravates the anastomosis and causes scar tissue to close the esophagus completely.
Have they ever had a swallow study done? The radiologist who did our swallow study said that one of the primary reasons kids get referred for swallow studies is a chronic cough and cold symptoms that don't seem to go away. DS sounded congested much of the time (though not all of the time), and I attributed that to the daycare funk. But now that he's on thickened liquids, there is no congestion at all any more. Heck, other people have even noticed it... "Hey, your son doesn't sound congested like he used to!"
Of course the fact that you had asthma as a child would make the likelihood of your kids having asthma fairly high, but so much of what you've described reminds me of the things our pulmonologist has discussed with us. I am absolutely thrilled with our pulm and how thorough he's being, but he didn't start out with all these tests. He started out with asthma meds and went to the testing when they didn't work. So I'm wondering if that's a pretty typical direction.
I hope you can get to the bottom of it!
No to all of that. It's like you're speaking a different language - I've never even heard of any of these things! Off to Dr. Google! In all seriousness, I've written all of these disorders down and will ask the doctor about them.
I know that if none of the treatments worked, our pulmonologist's next step was going to be a bronchoscopy to look at the structure of his lungs and esophagus, as well as a referral to a pediatric GI specialist. Since he's no longer coughing, I believe they're no longer planning any of that.
Thank you for the info. I will DEFINITELY look into these things more. So far we've just been told that he'll likely outgrow the swallowing issue because it's probably due immaturity in the portion of the brain that controls swallowing.
The hives stink. He had a reaction yesterday to either papaya or kidney beans (not sure which). We're seeing a new allergist in a few weeks and are hoping they can help us more. The last allergist did a scratch test, and DS tested negative for everything, so they told us to go ahead and give him peanuts, eggs, chocolate, etc. since he didn't have any allergies. They also refused to prescribe an epi-pen. It was a total waste of an appointment.
Hi!
My kiddo has different issues, but I just wanted to say that I can relate on the emotional side of what you are feeling. My DD has some issue with eating (not sure what yet, still going to docs to figure it out), but, at first, I felt like I shouldn't post here, but there wasn't another place that really 'fit'. I did post here for the first time 2 weeks ago, and the people are so nice! There is a range of what people are going through, so it seems very welcoming. I also can relate with saying that I wish my kid was doing things on a 'normal' trajectory. For instance, my DS ate food in a normal range, loved new foods once we introduced them, etc. My DD ate 6 oz every day this weekend (is also suffering an ear infection, but 6 oz isn't outside of her norm) and screams like I am stabbing her when I try to get her to eat purees (anytime). My friends all have kids who are holding their own bottles and eating tons of foods right now, and I am scared crapless that my DD is going to have a seizure or something because she hardly eats at all. It isn't fair. Plus, I still have major hormones going on (not sure about anyone else
) but that doesn't help with all of this. Just wanted to reach out and give ya a virtual hug- hope everything turns out okay!
Very true. Thanks for the welcome. I hope you can figure out your DD's feeding issues, too. It's really sad and difficult. DS had another allergic reaction to something he ate this weekend. I feel scared to give him new foods. I understand how you feel! Even though the issues are different, the feelings are the same.
Hello. Hope you don't mind me commenting. I am an SLP and am currently pregnant with my first. I saw the board and decided to come lurk to get a reality check on the parent side of things for my professional self.
If your son has a dx of dysphagia with aspiration, this most certainly can cause a cough. If anything is consistently getting into your lungs, it can cause a perpetual infection/irritation and cough. Additionally, people can aspirate their reflux, especially while sleeping. Aspiration can eventually lead to aspiration pneumonia. Since you have this dx, I'm assuming they have already done a VFSS (video swallow study), but if you haven't please get one done. As pp mentioned, it is important to rule out treatable structural causes and not just treat the symptoms.
Again, hope you don't mind me posting and I hope you get some answers for your DS!!
I don't mind at all! I appreciate your comments. He did have a VFSS that revealed liquid penetrating the lower larynx (but not actually reaching the lungs). We have an appointment for an oral feeding evaluation next week, and I'm hoping to understand what we have to do in the future. I also hope he outgrows this! I'm scared there is something structural going on, but as far as I know, they're not pursuing this.