I posted on another board about Eric's choking and one woman wrote back trying to make a point that you HAVE to make the doctors listen.
Her child had a heart problem, and when she talked about the child's symptoms it made me think in a new direction. I'm going to copy and paste everything here so you can read.

Sorry if it's confusing. I just don't know how else to do it.

Anyway,
I asked if choking WAS really normal for a toddler, and after some "No, I don't think so" posts here's what I wrote.

Thanks everybody! :)

I don't know. I mean it's normal for us, but it makes me wonder.. Is his fast eating caused by discomfort or what? And yeah,
I think if he would slow down he wouldn't choke as much, but when I try slowing him down he doesn't eat enough. It's like he saying "Let's hurry up and get this over with!" Is this because he's just got too much he rather be doing or is it because he still really hates to eat because he's not comfortable? Only he knows for sure, and he's not talking. LOL

I guess I'm just having one of those "Is my kid as O.K. as I think" moments. It's hard when they are off meds. You always wonder if your missing something. If you are doing the right thing by not giving it to them.
It's nuts what you think of, and how you watch everything.

I have brought it up to all the docs. They are the ones that say it's completely "normal", so Got me. I mean are they saying it's completely normal for a refluxer, or completely normal for any baby?

It will get brought up again at his appointment Thursday.
I figured out that he only needed to gain 2lbs to get back on the chart at a healthy 5th percentile! I've got my fingers crossed, but I don't think he did it. Not when his clothes are falling off him. My brother came in from out of town and said he looked WAY bigger than Christmas time, so maybe.

Anyway,
thanks for your input

Here's what she said:
bring it up at every appointment until they answer the question. When my daughter was born I noticed some unusual thing about her that I didnt deal with my older son. She always sounded like she had a cold like chest congestion, her hands feet and forehead were always sweating, she hardly ate 2 oz every 4 hours, and she wasnt gaining any weight. I brought that up every time I seen the doctor but he didnt notice anything wrong. Finally at her 5 month check up he said she had a heart murmur. We finally found our answer. She had heart surgery in December and she is doing great. Her weight is still low but she has been behind the first 9 months of her life so she has som catching up to do on her weight. She is 13 months old and weighs 14 lbs. People tell me all the time "isnt she too young to be walking?" but shes been walking since she was 8 months old at that time she weighed 9 lbs. Anyway, keep ansking.

-Jennifer-

Then me again
Jennifer,
Eric isn't sweaty like you describe, but he has always been congested, like he has a cold.
First it was explained that it was because of all the fluids they take in when they are born, "He'll eventually clear up" then because of his reflux. Yes, reflux can cause some bad side effects with breathing, (and he has them all) but now you have me wondering. My Mom and I both have heart murmurs, and I think my sister too. My Mom just had open heart because the valve that had the murmur her whole life had built up calcium and wasn't working right anymore, it effected her lungs and breathing more than anything else because of the back flow of blood into her lungs.

Anyway,
How important is the sweating thing. I have never really seen Eric sweaty. In fact he's the opposite, and seems cold (except his head) most of the time.

Did your child not gain because of not taking in as much as she should or do you think it was because her heart had to work over time? Eric's intake is really good now and has been since around the 9 month mark, but he continues to be bellow 3rd percentile and falling. (I don't know this for sure because he hasn't been weighed since Jan, but I know I'm not going to be happy when they go to weigh him, I can just tell).

Got anymore info for me? Maybe a good site about infants heart murmurs and the symptoms?
Thanks

I wasnt saying that your child may have a heart murmur I was saying that the doctor did not catch on to the symptoms that I was pointing out to him. But it is in the family. I have a cousin that has one and my BF's uncle also has one. Since you and your mother both have heart murmurs it wouldnt hurt to get it checked out. You can get a ECHO, it only takes about 20 minutes.

The reason why she wasnt gaining any weight is because her heart was pumping double making it hard for her to gain that weight. The calaries that she was taking in the heart was using up.

One other symptom of a heart murmur is not eating enough. They dont eat enough because they get tired right away. My daught sucked on a bottle 24/7 which was not normal.

You can look up more info at www.webmd.com

-Jennifer-

LOL
Jennifer
I know your weren't implying that Eric's choking had ANYTHING to do with his heart.
I completely understand where you were coming from. I'm so sick of doctors that don't listen
I could puke!

It's just so odd that he's not gaining.
I've been looking into different things, and when you talked about her eating, constant cold like congestion, and the FTT
a light bulb went off.

I remember thinking that his not eating wasn't related to his reflux and the docs all saying that it was. And now his eating is good and he still doesn't gain?
It's a long and complicated story, but anyway,
You just got me thinking, ya know.

Thanks



So what do YOU all think IRD ladies?
I mean I just remember back at how tired he was when he wasn't eating. He was sleeping at least 20 hours a day (with zantac and hardly any food). and then before zantac he couldn't sleep at all because of his heart burn, but he wanted to all the time. He still sleeps a lot 12 to 13 hours at night and a 2 to 4 hour nap everyday, and he doesn't ever fight sleep. In fact he wants to go to bed and I usually feel like I'm forcing him to stay up (still can't go to bed right after food). Sometimes sleep will fight him, and his reflux will wake him, but it's never him fighting sleep.
I have felt like his reflux is under control for quite a while, but still he's bellow 3rd percentile.

I plan on bringing it up on thursday, but just wanted your thoughts. I value what you ALL have to say, you've helped me through so much since I first posted here.

You may be on to something, Minnie. It's certainly worth asking the questions.

If something is puzzeling you, then you keep searching. If you are concerned, definitely talk to your dr about it. After reading your post it made me think of another grandmother (we e-mail each other a lot) that I met on this site and her granddaughter has reflux, of course, but also a heart problem that makes her very, very tired! I had forgotten about that until I read this post.

Best wishes
Jean

I'd definitely get it looked at. (his possible murmur)

Emma's ped is hearing from me in May b/c her last EKG was not long enough to record her arrhythmia (the test only ran for 10-15 seconds!). I want the test redone (even though it's probably not serious). I don't want to wait any longer.

Let us know what you decide to do.

Keep asking the questions. Stephen has a heart murmur that is meant to resolve itself but it was a very prominant feature in his earlier life. Not so much now. But he is underweight, so I shall be asking about it soon as he's meant to be going for another heart scan but we have yet to hear anything......

It never hurts to ask a question Minnie. I would hope that they would have detected a murmur by now but often they only listen to the chest and a murmur can go undetected for a long time. With a history of it in the family it is worth having it checked out.

Also, I think just the fact that he is "failing to gain" can make him so very lethargic. It sure did Iain. He was 16 months old and spending most of his awake time in a supersaucer. He would not go anywhere if we put him on the floor. He did not intake well at all and I was begining to have big time concerns about a kid who never moved and napped so much (with frequent wakings, but needed a lot more sleep than one would think even with the interuppted sleep. Does that make sense?!) He looked washed out and pale, sweaty when he moved at all (it seemed an effort). Once Iain started to intake and gain his energy level went up and he finally crawled up the stairs for the first time when he was 18, nearly 19 months of age. My other two were up by 10 months and 7 months of age. Clearly he had no energy. He is so much better and has so much more energy that we laughed when he started to do "normal" toddler things like take things apart and investigate. He missed so much because he had no energy to just be a toddler. Just a thought. I know Eric is "FTG" (failure to gain:wink: ) but what you describe with Eric is what Iain went through as well. He had a slight murmur at birth and it cleared up by 2 months of age. I will check him again as it has not come up again but a heart murmur that causes such problems likely is a high enough grade to be detected relatively easily. Just my complete non-graduated from any medical school opinion.

Keep us posted.

Oh, and Iain was cold all the time. I was so afraid for him as it was a bitter winter here and he had absolutely no body fat to keep him insulated. Indoors in a house that was set to 74 degrees he was still like an iceberg. Yet when he moved it was a sweaty critter almost instantly.

This thread has really hit home for me and is making me quite nervous. On top of her reflux, feeding aversion, non-eating etc., Hailey often seems uncomfortable and is typically crabby, clingy, and very difficult in social situations. But no one has ever taken us seriously about her problems saying that she'll outgrow them. This is what is freaking me out: She's always been severely sweaty... and I mean SEVERELY. Her hair gets wet during the day, and when you pick her up at night, she's wet, but the only response I've gotten is "maybe you dress her too warm"... which I don't. The added concern was that my first daugher was born with an asymptomatic ventricular septal defect which closed on it's own at around a year. Now I'm wondering about Hailey. OMG, sometimes it just seems like there are too many things to be concerned about.

Lori, mom to Hailey (05/31/05)

Don't freak out yet.:wink: I just remembered starting a thread on my sweaty critter and here it is:


http://www.infantrefluxdisease.com/forums/showthread.php?t=6794&highlight=sweaty


Not all kids who sweat like this have a murmur. Iain still sweats up a storm but he has lost some of the other symptoms (like feeling like an icicle all the time). Boys in general sweat a lot. I did an informal poll of my friends who have healthy boys and they all sweat too. Not to the same extent Iain does but still.

If anyone has a concern get it checked. Again, a heart defect that would cause such a FTT would be easily detectable. A very mild one may be missed. Do not fret yet, but bring it up with the ped for the next visit.

I just re-read that other thread and realized I have never brought it up with the ped nor have I checked Iain. Ooops. I will now to rule things out but I truly feel that this is a FTT issue we see with kids who are not intaking well. It takes them so very much effort just to move and stay up, let alone be active. Most of their calories are just going to sustain them not to have them grow.

Thanks Leigh,
Ya know the more I thought about all this I came to the same conclusion as you. If he had a murmur that was causing problems it would have been loud (or weird) enough for someone to notice. Plus Eric is very strong. I know that sounds weird, but he is. His muscle mass is so hard and strong. He amazes me. He's very active while he's awake and never stops moving, but at the same time he breathes like he's running a marathon all the time even while sleeping.

I just for the life of me can't figure out why Eric is still bellow 3rd. I mean could genetics make a baby that small? It has to be some kind of outside factor doesn't it?

Regardless I WILL still bring it up and have the doc take a GOOD listen to his ticker, and the choking will get brought up too.

Thanks everyone!
(((BIG HUG)))

I think you have come to a good conclusion Minnie. Ask the dr, get him to have a good listen and let him know about the history.

Just to let you know my elder son Cooper is always hot and is perfectly healthy most of the time.