Hospitalization AFTER endoscopy

[Anonymous]

Ok so Doctor is now saying perhaps Ian’s allergic to Elecare! Possibly that’s what’s been causing the congestion around feeds. I told her that only started in the hospital-isn’t it possible it’s one of the meds? Reflux causes congestion right?? Please don’t tell me the only thing he’ll tolerate is now off the table??!! Anyone heard of this? He’s been on it for almost 4 months-wouldn’t that have showed up earlier?

All blood tests are normal except for Ige level pending. Meaning it hasn’t come back from lab yet. Coincidentially, that’s the blood associated with allergies.

Tracy

[Anonymous]

So the GG level was normal?

The allergic to Elecare sounds odd to me. Unless he has a corn allergy
I guess? But if he’s only been congested since being off the Prevacid,
sounds more like reflux congestion to me. Plus, if he were allergic to
elecare, would that have shown up in the biopsies they took during the
endoscopy?

[Anonymous]

EXACTLY! I’m losing my mind over here. The congestion started in the hospital when he was still getting prevacid through iv but much lower dose than used to. They did have sugar in his fluids-maybe that? Although I’ve only used bsugar in a couple of bottles to get him eating again…It all sounds raspy in his throat. Maybe ear infection related? But did the ear thing come from reflux congestion or is it vice versa? She also said we could go back to prevacid but it would have to in compounded solution because she won’t prescribe solutabs. CMON!

GG levels includes a bunch separate tests-all have been normal except the IGE one is still not in. Of course, that’s the one we want to see.

Many crying/screaming fits today and can’t sleep. Eating is difficult but he’s trying to bull through. I”m so sad that he’s feeling way worse. Its’ so hard to figure out what is going on. With no allergies in our families, this just blows me away.

Tracy

[Anonymous]

It really sounds reflux related to me – hence the raspiness too. Did
you ask her about using Pepcid or Zantac until the Prilosec kicks in? I
definitely would. What is her problem with solutabs?

I know others have posted on here about low IGE levels so hopefully they will chime in soon.

I’m sorry to hear he’s having such a hard time – hopefully that sweet little boy feels better soon.

How many days now on the Prilosec?

[Anonymous]

Laryngomalacia may affect the epiglottis, the arytenoid cartilages, or both. When the epiglottis is involved, it is often elongated and the walls fold in on themselves. The epiglottis in cross section resembles an omega, and the lesion has been referred to as an omega-shaped epiglottis. If the arytenoid cartilages are involved, they appear enlarged. In either case, the cartilage is floppy and at endoscopy is noted to prolapse over the larynx during inspiration. This inspiratory obstruction causes an inspiratory noise, which may be high-pitched sounds frequently heard in other causes of stridor, coarse sounds resembling nasal congestion, and low-pitched stertorous noises.

Laryngomalacia is the most common cause of chronic inspiratory noise in infants, no matter which type of noise is heard. Infants with laryngomalacia have a higher incidence of gastroesophageal reflux, presumably a result of the more negative intrathoracic pressures necessary to overcome the inspiratory obstruction. Conversely, children with significant reflux may have pathologic changes similar to laryngomalacia, especially enlargement and swelling of the arytenoid cartilages.

Occasional inflammatory changes are observed in the larynx, which is referred to as reflux laryngitis. Because the epiglottis is often involved, gravity makes the noise more prominent when the baby is supine.

In severe cases, when it may be associated with gastroesophageal reflux, feeding problems such as choking or gagging may occur.
Noise is often increased when the baby is supine, during crying or agitation, during upper respiratory infection episodes, and in some cases, during and after feeds.

[Anonymous]

Hi Marsha-

Wouldn’t an endoscopy show that? Also, he’s not normally congested-just this week and not a really loud cough. Just persistent. Sounds like bronchitis and raspy. He did have croup a few weeks back and that cough lasted only one day…Am curious though. What do you do to diagnose and treat it? Not sure I understood everything you wrote.

Thank you!

Tracy

[Anonymous]

Poor Ian. I hope he feels better soon. It is so so rare to be allergic to Elecare, he would be one in a million I’m sure. He has been on Elecare for so long that it is strange he would be allergic all of a sudden. Hopefully the meds will kick in soon. I reduced Tylers dose a few months ago (big mistake) and it took about a week to kick back in. Are you dealing with allergists at the hospital? GI docs know about allergies but it is not their speciality, I would be looking to an allergist for a second opinion on the Elecare allergy…..

[Anonymous]

I copied that from a medical website – that’s why it’s hard to follow. No, and endoscopy won’t show it. The ‘malacias’ (laryngomalacia, tracheomalacia, bronchialmalacia – you can have one or more at the same time) are largely ignored by doctors because they correct themselves by the time the child is 2 years old and their is nothing you can do to fix it. A lot of doctors don’t even bother telling you about it, even if they see the symptoms.

However, I believe that it should be taken more seriously in the medical community because people go around thinking their baby has Croup, when they don’t (it’s called ‘stridor’ from sagging floppy airways- ea/tef kids are misdiagnosed ALL the time). And not understanding why they have re-occuring pneumonia, and why they seem to sometime have apnea spells (my son couldn’t sleep on his back until he was 21 months old because his soft trachea would partially collapse if he laid on his back!) Also, my son was 1 year old before he stopped sounding congested while drinking his bottle – maybe he still does, it’s hard to tell because it SOOO easy to get used to the sound you don’t realize it isn’t normal.

You should hear my son’s cough since he was born – he sounds like he’s smoked 4 packs a day!!! His cough is still more raspy/bark and “bronchial” sounding than other kids, but I stopped noticing it a long time ago. His cough sure turns a lot of heads when we’re out in public though! (I’ve also gotten used to that).

I want to stress that NO DOCTOR every told me anything about the ‘malacias’ just that his “cough” is from his ea/tef (could they be more vauge?). I only discovered information on it by talking to other moms and I know that the ‘malacias’ are reflux related not solely ea/tef related because I have read several posts on this site that describe their babies symptoms just like the kids born with ea/tef that also have reflux. I’m really glad that I discovered to lay him on his stomach on my own, but it sure would have been nice to know WHY my son couldn’t breathe while laying on his back.

Ea/tef is ‘esophagus not connected to the stomach and a small piece connected from the esophagus to the trachea’ – he was surgically repaired at 3 days old. I have learned most of what I know about reflux and the malacias from a ea/tef forum – which prompted me to feverishly search the internet for more info. While I was surfing one day and came to this site and was amazed to read all of these children that were born w/o birth defects having all the same complications that the ea/tef children have. I was so in the dark when my son was younger, I really want to try to help people and make sure they are informed whereas I was not.

Also, know that these things tend to all be tied together (reflux, malacias, feeding issues, lactose intollerance, low immune systems from outta wack ph levels from excess acid, respitory infections)

I have even read that Larygomalacia CAUSES reflux because the floppy airways don’t let all the air out of the lungs when you exhale and the constantly inflated lungs push on the stomach and cause reflux. And when you reflux all the way up to your larynx (sp?) and if your larynx if floppy, its hard to keep stuff from ‘going down the wrong pipe’ (which also makes it hard to drink formula), so you can aspirate acid into your trachea, and if your trachea is floppy -when you cough, you won’t dislodge the acid, and when the acid stays it can cause a bacterial pneumonia. And it’s one big vicous cycle.

Make sure your child is on the highest dose of PPI to make sure the acid is lessened and does not go up the esophagus so far. Especially if he already has ulcers.

I could go on and on – can you tell?

[Anonymous]

Tracy

It is so strange about the Elecare. Yes, it has corn, but it is not in the same form as teh corn you eat — it is modified and therefore the body should really not have a reaction to it (or so i have been told). As for the sugars — my understanding is that while they can create discomfort and can create tummy issues, they would not give an allergic reaction (ie allergic reactions in the digestive system are really caused by proteins themselves).

I hope you figure out what is going on, but it sounds like reflux. Don´t know if it is reflux on its own or combined with malacias but to me, you are describing Matthew at 4 months old, when all of the sudden his reflux was HELL; he was throwing up through nose constantly and painfully and lots of vomit. For Matthew, we had not stopped giving the medicines, but he was trying to sit all day and that was putting a ton of pressure on his stomach. If Ian has been sick a lot, babies who are sick produce A TON of acid and maybe the medicine was just not enough to neutralise it… and you switched from one med to the other and the new one has just not kicked in??

I hope you find out what is going on wiht him. Also is he teething?

[Anonymous]

I really agree with you Thais-it makes no sense that elecare would cause him an allergy that would coincide with a hospital visit (that’s when the congestion started). It’s still pretty bad today-can hear it in his throat, but he hasn’t had congestion like this months. Just some viruses but even with croup-cough was bad for just one day. I’m sad to give up the solutabs-because I never saw reflux symptoms on them. The puzzlement is the ulcers but he is teething and did have (we think a stomach virus) that made it all act up and I’m guessing another drug coldn’t have fought it off any better. I also think taste has been an issue.

He woke up several times crying again last night and sugar thing makes sense to us with all the syrups he’s taking…he’s also having screaming fits during the day which I haven’t seen in awhile. Discouraging thing is doctor won’t go to solutabs if we go back on prevacid (we’ll decide at end of this week). She says the makers of prevacid have a limit on the ammount they can give (unlike prilosec-….HUH?). She doesn’t want us distributing the medicine and prefers compounded. I like her alot but she is SO by the book sometimes (she wouldn’t even prescribe Miralax when Ian was constipated). Can’t blame her though, she’s only met Ian when he had ulcers all over his esophogus.

I do know this though-Ian is WORSE. He’s eating but it’s the same struggle it has been for the last month. I’m sure we’ll have peaks and valleys again.

Hoping for a miracle!

Tracy

[Anonymous]

caoimhe wrote:

Discouraging thing is doctor won’t go to solutabs if we go back on prevacid (we’ll decide at end of this week). She says the makers of prevacid have a limit on the ammount they can give (unlike prilosec-….HUH?). She doesn’t want us distributing the medicine and prefers compounded.

Tracy, that is the most bizzarre thing I’ve ever heard!!!! It doesn’t even make sense. What does that mean?

I can’t remember all Ian’s history so forgive me. I know he’d taken the solutabs, but was he on them prior to this situation? I remember someone stopping the meds and couldn’t remember who it was. What was his dose?

I hope he feels better soon.

[Anonymous]

Also emailed you Tracy… So sorry that Ian is having a rough time and
really hope the Prilosec kicks in soon. Is he on Pepcid or Zantac at
least in the meantime?

[Anonymous]

Thank you Lori.

Yes, it was us. We weened Ian off prevacid (we were dealing with a different dr. at the time) because he did so great on Simply Thick for a month. Two weeks with no meds and he was great then one day, woke up and was doing weird wriggly, gas, constipation like, bearing down thing while eating. We started prevacid again just in case but thought he was backed up. But this went on for about a month so I think the prevacid was ok then – we never saw ANY signs of reflux-arching, cry during spit up, or anything. Of course, he was bottle refusing so we probably were seeing symptoms manifest in a new way?

I agree I think that’s bizarre advice on the solutabs (we were on 30 a day). I’ll have to fight that one I’m sure.

This is so disheartening. He’s just fussy all day long since hospital. We’re on day 5 of prilosec…WHEN will it kick in .. Or is something else going on? We did start Simply thick again to help keep formula down but now I’m wondering if he’s getting gas from that? Totally stumped!

Tracy

[Anonymous]

If he has that many ulcers in his esophagus, maybe it will just take more time. Maybe they’ll have to heal before Ian feels better? Did you say that he was on carafate? That would help with the healing and help to coat the esophagus from any more acid that comes up. Maybe be on just Carafate until the ulcers heal and then switch to prilosec or prevacid?

2. Sucralfate (Carafate)

This is an aluminum-containing, sticky sugar that binds to open, irritated areas in the esophagus or stomach. The catch is that sucralfate requires acid to become active. It also requires an irritated area. Because of these two factors and since it has to be given quite frequently (4-6 times/day), it is not highly useful for the treatment of acid related disorders. Note sucralfate should not be used with antacids or with H-2 blockers or with PPI drugs. This is because as was stated earlier, sucralfate requires an acid environment to work.

[Anonymous]

I agree with the rest on how this doesn’t seem to be an allergy to elecare. What would they give him if he cannot eat that? I am hoping and praying things get better soon!

[Author]

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