Having a little snack at the Children's Hospital.
Wow, where to begin with yesterday's appointment? At the beginning I suppose.
Apollo weighed in at a whopping 20.7 pounds. He may just make it back on the growth chart yet!
The ENT did a larygnoscopy as we expected. Seven months ago, at the age of 10 months, the larygnoscopy showed inflammation of the adenoids, esophagus and voice box. These findings along with his other symptoms led to a diagnosis probable milk allergy and severe acid reflux. The expectation was after being on reflux medication and off of all dairy, the stridor would disappear and he would gain weight and begin sleeping.
Well, the stridor has disappeared, except when he eats, but he doesn't sleep or eat well and is only gaining weight because of his high fat diet. And while the stridor is better he now retracts constantly as his normal form of breathing.
Yesterday's laryngoscopy showed HUGE adenoids and nodules on his voice box. The ENT said his adenoids were large and inflamed last time but now they have grown exponentially. The nodules are also new and likely causing the noise when he eats (the extra saliva from eating getting caught in the voice box and causing the wet, raspy sound). The nodules could be caused by any number of things, but some of the causes are: inadequate airflow, allergies, and reflux. Obviously any of these three could apply to Apollo.
The ENT, while a competent doctor, was lacking in people skills and bedside manner. He was nice, but none to clear in his explanations, even when we asked direct questions. He told us that while the pulmonlogist wanted him to do a rigid bronchoscopy, he thought his upper airways looked fine. "But if we're going to put him under anesthesia, I'd really like to remove his adenoids. They are much bigger than last time and really need to come out." I could see Chuck's posture stiffen as the ENT went on and on about the need to remove his adenoids and said nothing about the bronchoscopy. I was equally anxious. Once we could get a word in, we both asked, in different ways, if he was planning to remove the adenoids while he did the bronch or instead of doing the bronch. He finally assured us he wanted to do it in addition to the bronch. Chuck and I are fine with this, we actually had Jubilee's adenoids removed several years ago due to extreme snoring, chronic runny nose and dark circles under her eyes.
The good? The doctor is going to do the bronchoscopy and remove the adenoids while he's already under the general anesthesia. Surgery date is set for December 20th. The ENT believes removing the adenoids may very well solve his sleep problems (though after 17 months I'm not holding my breath on that one) and from reading on the internet I am hoping it will allow him to eat more.
The bad? This doctor believes Apollo's windpipe (trachea) looks fine. Even though the pulmonlogist is convinced it is obstructed and causing the reflux, feeding issues and retractions. Chuck asked the ENT if the adenoids would cause Apollo to retract while breathing. His answer? No.
He had no interest in pursing the reasons for Apollo's retractions. These are the same retractions that our family doctor, who has known Apollo since the day he was born, is concerned about. We very much got the feeling that the ENT can't see past Apollo's Ears, Nose, and Throat….
When we brought up his feeding issues, he asked if he has been seen by the GI doctors.
*sigh*
A never ending trail of doctors and no answers. The thing is, his adenoids are not causing the retractions and shortness of breath when he is active. That can clearly be heard with our without a stethoscope. That, too, is not explained by huge adenoids, nor by GI issues. And while the reflux meds give him relief, he should not still have severe reflux at 17 months of age…Unless, as the pulmonologist contents, something is pressing on the trachea and causing the reflux.
A tired baby ready to head home…
The Ugly? More hope, but no answers. Doctors who can't agree on a diagnosis. A possibility that if the rigid bronchoscopy shows nothing, Apollo will have to have a flexible bronchoscopy done by the pulmonologist. Oh, and the ENT says he believes Apollo will be "a very allergic kid". Blech.
So there it is. Forgive me for the rambling, but I am trying to get this all done while it is fresh in my mind.
So frustrating! It’s so hard to get a satisfactory answer when you’re just pushed from pillar to post, dealing with different people all the time, and all with their own agendas. I really hope that you can find some answers soon.
He looks such a big boy in that last picture though – not a baby any more.
The medical world is so strange. I really dislike it. I don’t get how you can be sitting in front of a Doc with a child who is laboring to breathe and the Doc not be concerned? Maybe you and Chuck are to nice and you need a really mean bossy person to speak to the Docs… 🙂
So the Doc thinks something must be pushing on the trachea, are they going to do an MRI of the outside of the throat? Honestly, when they do the bronch thing they are not going to see the out side of the organs to see if any thing is pushing on them… all they could see if there was anything on the inside of him.
Very frustrating.
Good luck, I wish I could do something to help, but besides have sympathy I don’t what to do…
-Sarah.
Poor Apollo! Poor you! I will be praying that his surgery goes well and that the doctors find out out why Apollo is having these issues. I’m so sorry you’ve had such a difficult time with the ENT, I pray that the doctors don’t put him in the ‘too hard’ basket.
My mother battled for years to get help for my brother, he is intolerant to steroids, so instead of the doctors taking him off steroids (to treat his severe asthma) they decided he had ADD and prescribed him ritalin and anti-depressants! He wasn’t even 5! My Mum started writing letters to every doctor in the country (and overseas!), until one took her seriously and found an alternative drug to control my brothers asthma.
If this surgery doesn’t solve Apollo’s breathing and reflux issues, maybe you could start bombarding doctors and children’s hospitals with letters and emails?
That is all too frustrating.
I’m with Sarah though. My first though is, if the doc thinks something is pushing on his tracha, yet thinks it is clear, why are they doing a bronch? The should be looking on the outside to see if there something outside his bronch that is pushing on his trachea.
Hoping all goes well! Maybe removing his adenoids really will solve all the problems =]
So sorry to hear the frustrating details and still so little information. We will be praying for all these things (doc. visits, info., Apollo’s health, strength for you and Chuck).
I was going to ask if they’ve done an MRI with contrast? That can help them find what’s going on because they can look slice by slice.
I know insurance can be a real PITA about stuff, but what about a second opinion? Maybe see a doctor that can listen instead of know everything? That the ENT is ignoring what the pulmonologist says as well as ignoring the obvious breathing distress in Apollo doesn’t bode well for getting answers.
I’ve been round and round through health issues with my daughter and have run the gauntlet. Wish I could help.
Adenoids being enlarged can cause breathing issues such as retractions and shortness of breath. It can also cause a child to not want to eat leading to weight loss or no weight gain. Apollo does not looked malnurished at all. Although he may not be “on the growth chart” every child is different. There are MANY children not on the growth chart as infants, toddlers and young children and then they catch up. Growth charts are not a one size fits all. Just because doctors don’t “seem” to be listening doesn’t mean they aren’t. If I have had more than one MD recomend not doing a bronch. I would not put my child through this. Praying for you and all of your children.
My daughter still has laryngoesophageal (“silent”) reflux, and she is now 6. She gets recurrent sinus infections because of the reflux into her nasal passages. (yuck!) The allergist/immunologist we took her to last spring told us that sometimes obstruction in the throat – such as enlarged tonsils or adenoids – can cause or exacerbate reflux, because it can create a negative pressure, much as squeezing the rubber part of an eye dropper can suck liquid up into the tube. So it is just possible that removing Apollo’s adenoids will be helpful in treating his reflux.
On a less optimistic note, she also said that refluxing gastric juices can cause regrowth of lymphatic tissue – in other words, it can make adenoi and tonsils grow back. So the ENT does actually have a vested interest in clearing up Apollo’s reflux.
Good, good luck to you as you try to figure this all out!
Any chances of a second opinion in regards to this? I understand how frustrating it is to wait for answers and still end up with more questions then answers. navigating the medical world can be exceptionally frustrating! I’ve found that when it comes to health we often have to fight the doctors to get answers. Hope those answers come for you soon.
Angie- at this point we are just hoping the problem shows up in the broch and that removing the adenoids helps.
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AndreaB if you click on this link here you will see "the criterion standard diagnostic modality is still direct laryngoscopy with rigid bronchoscopy and possible rigid esophagoscopy." This is how they diagnose the type of tracheal issues the pulmonlogist believes Apollo has.
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Kate- thanks for the input. We would love it if the root of his problems are simply his adenoids!
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Jill- I certainly wouldn't push for a medical intervention if it were against the doctors advice, etc. Perhaps I didn't word it well in my post (I was simply trying to get things down for my own records). The ENT does want to do the bronch, but he sees it as a way to "rule out" tracheal issues rather than to find one. And it was the ENT who told us the adenoids could not be causing the retractions. Apollo's size wouldn't bother me in the least if he could: eat, sleep, breath and if he were a generally happy guy. But none of those things are true and he is miserable most of the time. I agree, the growth charts are not something I usually pay any attention too, but in this case it is one more symptom of something being wrong.
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🙁 The whole situation sounds blech! I really wish you had some answers or at least could feel every medical person was on the same page. I don’t understand how the ENT could not be concerned about a baby’s breathing struggles. It seems like a pretty big deal to me if the kid can’t breathe! Praying the adenoid removal fixes some problems!
I am sorry, I was praying for more solid answers for you. Will continue praying for a solution to be found quickly for him, poor guy.
I would definitely push for the bronch as well, not just because the doctor wants it done. It can really answer some questions, 2 of my brothers had to have it done and they are no worse for the wear. For one, it was essential for him due to severe allergy/breathing issues. He was 2 and he doesnt remember it, it would be wonderful if a solution for Apollo was found quickly and this may be a big part of the answer.
Have you considered Mayo? There have been several difficult-to-solve-cases resolved there.
They specialize in cases such as these!
I will definitely be praying for poor Apollo!
Sarah, if you go back and read the comment section, I left a link to a website that explains tracheal issues. Bronchscopy is actually how they diagnose obstructions/rings/slings of the trachea.
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Remind me, has he ever had an echocardiograph? Has he had pulmonary function tests? For some reason, I am just a bit worried about a congenital heart defect with pulmonary hypertension. But that’s a pretty long shot.
I have a child with kidney disease and growth issues.My son is also a “very allergic kid” even tho he is now 11. He is also very high energy so all g rowth is nearly nonexistent. I have to also deal with multiple specialists who will not or cannot provide coordinated care. Please remember that you HIS PARENTS ARE APOLLO’S ONLY TRUE ADVOCATES and that NO QUESTION IS A DUMB QUESTION. I also follow what the doctors want, but I also follow my mother’s intuition at times. After the DEC 20th surgery, follow your gut. Praying…..
Could you email me your home address? I would like to send your family a Christmas Card….I feel as tho your family is a friend. ssmazzon@hotmail.com
I understand if you do not want to do this…no pressure.
Also: Mayo Clinic is an amazing institution. If you feel you want to go there…I have a person from my little bitty one stoplight town who can help with scheduling. Let me know…….We are six hours from there, but lots of people with weird issues go there for help…..
I pray for Apollo that having his adenoids out will help a great deal. I am wondering if an MRI of the neck would be helpful. MRI in littles requires sedation so maybe they could do it while he is already asleep. Have they considered doing an U/S of the neck and an ultrasound of his heart. You can have congential heart issues without having a murmur. Just a few ideas. I am a nurse and as a parent the medical field often aggravates to me. Hang in there and lots of prayers.
A little slow on reading this as my family is currently in the middle of a “December Birthday Blitz” but wanted to let you know that I’m still praying for Apollo… and you! My daughter will be 18 in a week and we have been dealing with a chronic (as in every single minute of every single day!) migraine that has lasted for almost 26 months. The doctors (She currently sees a neurologist at Children’s) just don’t have any answers and she is just ready to give up. Hopefully they can find some answers for you sooner rather then later!!!
Jodee- ugh, so sorry for your daughter. She must be miserable.