Hello everyone! I just ran across this part of the website (conditions and syndromes). The more research I do, the more concerned I become in regards to Ava and the possibility that she may have a "condition/syndrome."

My basis for concern is that most conditions list problems with feeding/swallowing as a sign. Ava has a significant problem with at least one of these (swallowing); however, I'm not sure of any of the other symptoms. She's only 11 months old...is that too soon to diagnose this stuff?

She has a GI appt. tomorrow morning...her first one. Should I bring this concern to him? Or am I just being ridiculous and researching TOO much?!?! Is it possible that her swallowing issues could be isolated and not associated with anything bigger? I know that tests would have to be done, etc., but I didn't know if there was any experience from mommies with difficult swallowers that didn't also have a condition/syndrome...did that make sense?!?! :)

It's hard to say without having more information (i.e., your doctor taking a look and perhaps running some tests).

It is good to have information and, as you said, it is possible to have too much info. That being said, it sounds as if you've done your research (good for you!) and I would go into your doctor armed with the information you have, along with Ava's symptoms and see what s/he thinks about further testing, etc. It's not too early to diagnose syndromes, etc. and it is good to know the potential problems. If you can, try not to worry about these things until you speak about all of this with your doctor. (Easier said than done, I know!)

I'm sorry--I've been away and I need to go read your other posts, so forgive me for sounding ignorant if you've already answered these questions...but what doctor(s) are you seeing? Are you seeing a GI? Have you seen a speech therapist (feeding/swallowing clinic, etc.)? What sorts of problems is Ava having with her swallowing? Does she have oral-motor problems or is she gagging on foods because of a behavioral issue? (Both need to be followed, but there is a difference.)

Hi Mary! No worries about not knowing Ava's problems. :) Basically, she is having issues eating solids and now (after introducing solids), taking her bottle as well. I posted a link to a video in the questions thread; however, I don't think it's still there. She's gagging on what I give her, but she still manages to get it down - she keeps her food at the front of her mouth and seems to struggle with her tongue before finally letting it go down (also with a struggle).

She is due to see a GI tomorrow morning - her first appt. However, is this a question for him??? I have two separate issues....one with her constant projectile vomiting and the other with her feeding behavior. Can both be addressed with the GI? Two therapist will be evaluating her at the end of next week....so maybe they can say better.

I know that tests are the only way to know for sure. But like you said, waiting and not worrying until then are easier said than done. :(

http://www.dropshots.com/day.php?userid=154575&cdate=20060707&ctime=202826

Above is the link to the video I posted last week - not sure if you saw it or not. But this is how she eats, every time.

Thanks again for your help and suggestions...I'm just totally paranoid that something incredibly serious is wrong with my lil girl. However, the swallowing is the only apparent "sign" to me right now....

It's very normal to be worried about the possibilities! :-)

Thanks for the video link. You know, I probably would bring it up to the GI. Even if this is out of his area (which I think it is), he needs to know what's going on. The last thing you want is a GI telling you to up her caloric intake, etc. and not know that she can't get solids down--and he can perhaps give a referral to a speech therapist/feeding clinic. (I *think* you mentioned that you might be going to an ST at the end of the month...?)

I have found in our dealings with various specialists that it's better for each doctor to know EVERYTHING that's going on (even the stuff that's out of their realm). This way, there's no way that even something little (that could be important) can be missed.

Thanks again Mary. Yes, I did mention that Ava will be seeing a ST and an OT next week. I'm with you on telling the GI. In fact, I think I will take that video with me to the appt.

She can get the solids down eventually, so yeah, I would agree that she doesn't need additional calories or anything like that. It's just the WAY she does it that raises a red flag with me - I don't know what the websites are really talking about when the mention a "swallowing problem." I mean, she has a problem, obviously, but is that a sign???

Sorry, I don't mean to be asking you all this, for I realize that you are not a dr. :) I just wish I could find someone else whose baby had a swallowing problem and didn't have an unfavorable diagnosis.

Hi Amanda,
I saw the video link, that is so helpful. I wouldnt worry about a syndrome/condition....it is very common for kids with reflux to have oral motor problems...which is what this looks like to me. Oral Motor problems mean they have low muscle tone in their mouth and as a result have trouble coordinating the muscles in their mouth to work together efficiently to chew, swallow, and speak.

They can develop oral motor problems through the lack of use of the mouth muscles caused by reflux or they could be born with underlying muscle tone issues--this isnt a syndrome in and of itself.

What is her other development like? She was saying "na na" in the video like it meant "more" for her--this is good for a 10 month old. Does she say any other words? Mama? Dada?

Oral Motor problems can effect their speech development, in addition to the chewing and swallowing so early intervention with speech and occupational therapists will help. They can strengthen the tone in her mouth if that is really the problem (I say this because I said I think it looks like oral motor--I am not a therapist, just an experienced mom....in other words I could be wrong!).

I would tell the GI about it most definitely--it is very related to reflux. Acid reflux happens when the LES (Lower Esophageal Sphincter Muscle) relaxes when it should close. This is a muscle tone issue. The muscles used in the mouth to chew and swallow are connected to the muscles in the pharynx that continues the swallow to the muscles in the esophagus, which are connected to the stomach--also a muscle--which continues it all the way through--all muscles. They are all also controlled by the same nerve--the vagal nerve, which is the longest/biggest nerve in the body. It is very common for these problems to exist together....again dont worry about a syndrome!

It IS possible to research too much!!!! Read and learn, but then draw the line and leave it alone. If you cant research without it becoming a source of anxiety to you, then dont do it--it isnt worth it. Just limit yourself to the basics and find a doctor you can trust. If something comes up that you feel you must research, set limits for yourself so you dont go overboard with it and let it get the best of you.

Something to think about though--nothing you know or dont know will change the prognosis for your child. I know for me, I had to decide to stop reading the statistics and stop the reasearch because it depressed me (my son has a chronic illness). I had to choose to let it go because the doctors and medical books do not determine the quality of my son's life regardless of what he has or doesnt have, they arent in charge of his life--the Lord is, and only He knows the number of his days. Nothing I do/know or dont do/know will change that. This helped me to let it go and I am a much happier person now even though my son hasnt changed a bit--he is still sick!

Thank you Carla. That post was incredibly insightful and appreciated.

Thanks for calming my fears about the "syndrome" thing - and for the much needed "lecture" on limiting my research. It's just so hard when there aren't any answers and you're basically left to diagnose this on your own. I wouldn't say that Ava's ped isn't helping....just not as quickly as I would like. :( But I think that's my own issue.

Ava does say "dadada" and "mmmma." That's about it at this point though - oh yeah, "ba" too.

I didn't realize that the chewing all the way down to the digesting was controlled by one thing...that really explains a lot for me. The only other thing I can think of that may be inhibiting her is that she seems to have some sort of issue with the roof of her mouth. It's almost impossible to get in there and see; however, it looks like there's a little bump or something. Almost like, where the roof is supposed to peak and angle upward, she has a something that comes down....???

Whatever, I guess it'll be up to the doctors to decide what to do. Thanks again though for easing my fears about Ava - it's so incredibly hard to be a first time mommy. I'd like to think that I made her perfectly....and it's just such a blow when it doesn't necessarily work out that way. :( Ugh, gotta go cause now I'm crying at work....

Hang in there Amanda...it will get better, I promise! My daughter Chelsea is 4 and a half now and doing well now!! We had a rough first few years with her. She has a lot of oral motor problems (among some other things) and it is hard to deal with all this as a first time mom. No one does it as quickly as you want them to because you just want them to do something to fix her. Nothing will be a quick fix--it may not be a fix at all--that is probably what I would advise you to come to terms with....not only that but there may be nothing to fix! Every child was created differently and beautifully--when we have issues with our children, they are our issues to get over and they are usually based on our pre-expectations of what we *think* it is supposed to be. No one's child is perfect, even if some appear to be! When I stopped trying to make my experience as a mom fit this mold I thought it should be, and stopped comparing my children to others, and looked at them for what they really are--beautifully created little human beings, it made things easier.

Another thing I do that helps me get through is to come up with things to be thankful for that directly relate to what is depressing me. An example for your daughter may be instead of being depressed over the way she eats...resolve to be thankful that she does eat. She has the ability to learn to eat more efficiently with help and you will get the help--another 2 things to be thankful for. In doing this you turn your perspective from focusing on the negative to focusing on the positive instead.....it helps me everytime.

I dont say this to lecture you BTW, I am speaking to myself at the same time.:wink: It is hard but I have learned a thing or two since becoming a first time mom!!

Thank you Carla. Oh no, I didn't think you were lecturing me at all! I know that, even if you were, I probably need it. I have extremely high expectations, especially being raised in a family where there were NO medical problems....Adam's family has none either. So it was basically a sure thing that I would have a "healthy" baby.

But when I hear what you're saying, I realize that I DO have a healthy baby - just not perfect, and no baby is perfect, so that makes her completely normal. :)

And yes, I do view the drs. as God!!! I know they're not; however, I depend on them for some answers. And I guess it just aggravates me when I'm short-changed, in a way. I mean, she can't talk to me and I can't read her little mind, so I'm at a loss half of the time. :(

Yes, I am very fortunate to have a child who CAN eat, like you said. She could need a tube and be failing to thrive, etc. So I definitely see where you're coming from there. I guess my main reason for beating myself up over this is that I'm basically helpless in this whole scheme of things. I can do my best by her, but it still doesn't change anything....and really, that's what's breaking my heart. I'm so afraid that something else is going to be found wrong and I just won't be able to understand it.

I want her to be a happy little girl and not have to worry about sitting in her own puke and coughing and gagging to the point of vomiting. That's not fun. :(