High arched palate & future problems ???

[Giraffe]

This might not be the right place for this, but it's somewhat on topic & might become a special need issue (at least a minor one). If there is a better place let me know.

My 10mo little guy has a very high arched palate. It has already caused some issues & his pedi mentioned the very real possibility that he will need a palate expander in a few years.

BFing was the first major hurdle. I saw probably 6 LCs, read up as much as I could, tried the SNS & all kinds of stuff. I ended up EPing & then supplementing. He's now on formula because in addition to his feeding problems my supply gave out completely by 8mo. We even had trouble finding bottles that worked well for him to latch on to properly. We did find one though.

Now that he is starting to eat some purees we are having more problems. Food actually gets stuck up in the arch & he sometimes has trouble getting food to the back of his mouth to swallow it. This is getting somewhat better with practice, but it's frustrating at times for both of us.

Anything in solid form isn't working. Piece of fresh fruits & veggies, freeze dried fruits & those little puff things are impossible for him to eat at this point. To add to it he is showing signs of food sensitivities so we also have to be cautious of that.

He still has a pacifier & we're letting him keep it. One LC gave me some research articles that explained how palate shape was partly formed by sucking motions in utero. It's probably a little late for it to help, but it's not interfering since there is no BFing relationship.

His teeth are very crooked & spaced poorly. The front of his gums also arches upwards a little. I'm certain this is just a sign of things to come with future dental problems.

I'm also concerned with potential speech difficulty & the palate expander. I was hoping maybe someone here had some experience. I know the palate expanders are sometimes used before cleft palate repairs. I've heard 2 mostly positive experiences with them so far. Any stories of personal experience or suggestions would be very much appreciated.

[LynnS6]

Well, I don't have a personal (as in my kid) story, but one of our neighbor's daughters had just what you described. She had an extender for about a year from 4-5 and some speech therapy because she was hard to understand. She's in 1st grade, and as far as I can tell, she's fine. I don't interact with her as much as I do with her twin sister because she's not as interested in the things that my kids are doing (and honestly, I don't like her personality). But developmentally, she appears fine.

[KimPM]

You might start looking for a good feeding therapist. Most likely, an SLP (speech language pathologist) who specializes in feeding issues will be your best bet. An SLP has a good knowledge of the anatomy and workings of the mouth. Ask around to doctors, physical therapists, occupational therapists, call around to those you don't know and tell them specifically what you need in a feeding therapist. You may just find a good one that way. Getting one soon may help prevent some learned food aversion. You may also want to consult a nutritionist to suggest good food ideas, given his challenges.

My DS has a little bit of a high palate, but mostly it's texture sensitivity and some oral motor issues. We went through some feeding therapy and had great results with an SLP/feeding therapist. He still occasionally has a bit of trouble, and I don't know if it's miscoordination w/ chewing and swallowing, or if it gets stuck up there in the palate. But overall he's doing pretty well considering.

FWIW, my DS's speech is fine, just his eating is affected, not his speech. Your DS could be different though, but I was just pointing out that speech and eating aren't necessarily connected.

[2boyzmama]

My son has an extremely high arched palate, so bad that it took us and the drs a LONG time to rule out a cleft of the hard palate. Breastfeeding was a HUGE struggle, but we managed somehow.

Dr Brian Palmer is a dentist who has done some extensive research on it, you should google him and find his webpage. He has a slide show with some fascinating (but somewhat gorey because some pictures are cadavers) information about palate development.

Does your son show any signs of Pierre Robin Sequence? (link in my siggy) A cleft palate is NOT a necessary part of the sequence, just a recessed and small lower jaw that leads to the tongue placement being wrong in-utero which forms the hard palate wrong. Putting a name to it isn't necessarily helpful (as in, it doesn't mean there's suddenly a "cure") but it for some reason made me feel better, you know? And PRS is sometimes related to genetic syndromes, the signs of which might be very subtle, so it's worth reading about at least. My son's syndrome, for example, has such a huge range of clinical presentations, that sometimes it isn't diagnosed until much older (sometimes not even until you have a child more severely effected and the drs start testing family members...)

I had a somewhat narrow palate as a child and wore a palatal expander for a short time when I was 9 years old. It made a big difference! I never had any speech impairment, but did require serious orthdontics I expect my son to need LOTS of orthodontics, too.

As for food...my son had major feeding issues. We discovered that puries were really difficult for him, he couldn't transfer them from the front of his mouth to the back. He also has severe dysphagia, so that contributed. Then we tried the softer solids, and that was a disaster, exactly what you described happened: they'd get all mushed up in his palate and get "stuck". We learned to do careful palatal sweeps after every meal because a few times I thought he was done eating and would put him down to play, and an hour later he'd be choking, and I'd find food that was presumably stuck in his palate that whole time. It got scary a few times.

He actually did better with foods that were a harder consistency, which meant he wasn't really on table foods consistently until well after his first birthday, and after he had enough teeth to be able to chew some. He has learned to compensate by NOT chewing, because if he chews too much, he loses his food. It freaks his speech therapists out a bit, they saw on a swallow study that he made no attempt to chew meat, and they panicked saying he was a high choking risk because of it. But if he does chew it, then he DOES choke.

We have altered some of his foods...for example, he can't eat regular bread, but does better if it's toasted. So even a PBJ is toasted for him. We are careful not to put too much peanut butter on the piece of toast, though, or it gets stuck. We have learned to let him choose how big of bites of food he takes (for example, we won't cut up a banana to give to him, we'll give him the whole banana so he can control how big the pieces are). We've had to learn to trust that his body will tell him what foods to eat, and how to eat them. It's scary, because I WANT to cut his grapes so he won't choke, but if do, they get stuck in the palate and he DOES choke. Catch 22 kind of.

I'd say that you should have him evaluated by a craniofacial specialist...find out if there's a cleft palate team at any of the hospitals near you, they can evaluate his palate very carefully to make sure that there isn't a hidden cleft, and there will be a feeding specialist on the team who will give you ideas on how to feed him.

Oh, something I forgot...my son does MUCH better with foods that are very strong flavored, spicey especially. It might be more because of his dysphagia, but he seems to be able to track food better in his mouth if it has a very strong flavor to it. He'll eat salsa with a spoon! I think that the flavor just makes him more aware of where the food is in his mouth. We add garlic and pepper to a lot of his foods, which seems odd for a two year old, but is really helpful.

Speech is a big problem for my son, but he also has hearing loss, dysphagia, oral hypotonia, a dysfunctional soft palate, an upper lip that has no movement, and likely a neurological issue (apraxia) that is all contributing to his lack of speech. It's hard to tell how much (if any) of his speech problems come from his hard palate shape.

[tanyalynn]

Both my kids have somewhat high, arched palates--it hasn't caused problems so far, but I've been reading about cranial-sacral therapy and considering it to see if we can widen their palates now, while they're young (my kids are 2 and 5). I'm hoping we can avoid dental work when they're older--but they're 2 and 5, so it'll be years before I know the answer.

Sometimes (often? I can't tell) posterior tongue ties go along with high, arched palates, and so tongue mobility can be restricted. There are some doctors out there, apparently, that will clip posterior ties in older kids--I'm not sure about this for my kids, but I'd look into it more if we were having other problems. Dr. Coryllos wrote a paper for the AAP on tongue ties and seems to be one the best-known docs for recognizing TTs (not just classic anterior ties, the ones that cause a flat shape or even a heart-shape at the tip of the tongue, posterior ties are in a different place)--if you want to read about it.

[Giraffe]

Thanks! I called DF's stepmom today to see if she had ideas or thought bringing him in would be a good idea. She's a nurse at our pediatrician's office. She said the one we saw last time (and intend to keep seeing) is very good about referals and listening to parental instincts when they know something is not going well. This ped was the first one that actually acknowledged the arch in his palate at his 9mo WBV. We had seen 2 other doctors before and they weren't concerned. She said we might come in to see about getting a referal to a specialist, maybe even the cleft palate clinic in our area. We have medicaid which can make things tricky sometimes, but we'll find a way.

I guess it's time to start researching local doctors/clinics/therapists. I have also heard of a good pediatric dentist from the LCs I have seen. I'll look into some other things this could be a symptom of because like one momma said, some things are rare & often not diagnosed quickly.

He has a rather large head (97th%) in comparison to his 20% height & 40% weight. I know growth charts don't mean much sometimes, but his head growth was sudden. A CT ruled out fluid or tumors so for now it has just been diagnosed as a big head. He does also have a slightly smaller lower jaw. It's still undecided if he has a mild tongue tie. It has a slight heart shaped point, but he can stick it out really far. The LCs we saw still aren't sure.

Thanks again!

[tanyalynn]

Originally Posted by Giraffe

It's still undecided if he has a mild tongue tie. It has a slight heart shaped point, but he can stick it out really far. The LCs we saw still aren't sure.

But a heart-shaped tip is an anterior tie, and a posterior tie is totally different. My daughter's tongue is shaped like a spear and sticks out forever, but I still think a posterior tie is likely based on her palate and how these seem to go together. My son's got a mild heart-shaped tip to his tongue, I think he's got both anterior and posterior ties. Seeing a posterior tie is really tricky, you'd need to ask the person how often they diagnose them--if they rarely diagnose them (and they're someone people go to for nursing/eating type issues) then they may be just missing them.

[Giraffe]

I'll look into a tongue tie too & get more info on the terminology. The LC said that it is really unusual to have a high palate without a tongue tie accompanying it. We discussed that he might have one, but they weren't sure so they referred me back to the ped. The ped we had at the time was very dismissive. He thought that as long as he could eat from a bottle then it was nothing to be concerned about. The new ped understands our concerns & is willing to help. I'm glad we switched.

Unfortunately, it seems that the LCs I went to don't get to help to their full ability a lot of the time. BFing rates seem pretty low here & they were actually quite shocked that I came in with as much info as I did. It never ceases to amaze me at how often I hear women at the WIC office refuse to even try to BF. That's a topic for a different board though. It would be my guess that these LCs don't get a chance to diagnose problems because many give up rather quickly. These women were fantastic. They spent lots of time with me in the office & on the phone. I've been keeping them updated too so I'm sure I can give them a call.

[EXOLAX]

Originally Posted by Giraffe

The front of his gums also arches upwards a little.

What do you mean by this? Do his gums arch up where his teeth come in or is it more up at the top by his upper lip frenulum or is the notch along the lines of one of his columella following his lip?

I'm asking only because of our own experiences with our ODD. She was born with a cleft lip, her palate was not affected but she had a slight notch in her gums where her cleft was on her columella. In x-rays it showed how the cleft also affected her gumlines, which wasn't visible.

I would suggest if you have concerns/issues with it to get him an appointment with your local craniofacial or cleft lip/palate team. The wonderful thing about the teams is that you are seen by every associated specialist at once. It makes for a long appointment but really speeds things up. You would see a plastic surgeon, a dentist, geneticist, speech pathologist and ENT. They could rule out any other underlying issues and give you some great pointers/info on the palate itself.

[2boyzmama]

Originally Posted by Giraffe

I'll look into a tongue tie too & get more info on the terminology. The LC said that it is really unusual to have a high palate without a tongue tie accompanying it. We discussed that he might have one, but they weren't sure so they referred me back to the ped. The ped we had at the time was very dismissive. He thought that as long as he could eat from a bottle then it was nothing to be concerned about. The new ped understands our concerns & is willing to help. I'm glad we switched.

Unfortunately, it seems that the LCs I went to don't get to help to their full ability a lot of the time. BFing rates seem pretty low here & they were actually quite shocked that I came in with as much info as I did. It never ceases to amaze me at how often I hear women at the WIC office refuse to even try to BF. That's a topic for a different board though. It would be my guess that these LCs don't get a chance to diagnose problems because many give up rather quickly. These women were fantastic. They spent lots of time with me in the office & on the phone. I've been keeping them updated too so I'm sure I can give them a call.

Hm...this actually seems kinda opposite to what happens in PRS. BUt I do remember also reading something about that on Dr Palmer's webpage (did you find it yet? If not, I'll look it up for you) In PRS, when the lower jaw is receded, the tongue is in the wrong anatomical position, and it balls up in the roof of the mouth in utero, which causes the high arched palate. It would seem to me that if there's a tongue tie, the tongue couldn't reach the upper palate to malform it...?? But, if the LC you're talking about is the one I *think* you're talking about then I would never dispute what she tells you, she's a wealth of information.

I sent you some other information, hopefully that helps!

[Giraffe]

I'm really going to have to learn some terminology.

It's the bottom edge of his gums where his teeth came in that is arched. It's not arched up a lot, but it is noticeable. There is a rather large gap between his top front teeth. He has 4 top teeth & 4 bottom teeth so far.

I'm very visual so maybe pics can help.

Here's a newborn pic of him yawning. I'm not sure if you can tell much & it appears his palate has gotten worse over time. The edge of his gums that are showing is where it arches up slightly.
<a href="http://s276.photobucket.com/albums/kk34/jarethremycallison/?action=view&current=Picture939-1-1-1.jpg" target="_blank"><img src="http://i276.photobucket.com/albums/kk34/jarethremycallison/Picture939-1-1-1.jpg" border="0" alt="Photobucket"></a>

I don't have any good open mouth or teeth shots. This shows his head size/shape though. He's really not scrunched in the sling either. His foot is just under the tail of the sling if that helps give perspective on his head size in relation to the rest of him.
<a href="http://s276.photobucket.com/albums/kk34/jarethremycallison/?action=view&current=Picture197-1.jpg" target="_blank"><img src="http://i276.photobucket.com/albums/kk34/jarethremycallison/Picture197-1.jpg" border="0" alt="Photobucket"></a>
(I know pacifiers arent' the greatest thing, but that type in particular provides lots of comfort to him. He won't take any others & doesn't use it very often.)

[2boyzmama]

He does have a big head! Both my boys have rather large heads, but it's more obvious in Connor, who isn't even on the growth charts for height/weight, but has a head in the 65th%!! What I noticed about your little guy's head, though, is how prominent his forehead is. I know they did a CT (or MRI?) but that would be something I'd keep a photo record of so you can note any changes.

Man, check out his eye lashes!!! WHY do boys get such long eye lashes??!

I'd say check out that dentist that was recommended to you, try to get a referral to the cleft palate clinic, contact early intervention, and then go from there. Once the wheels start spinning, things will unfold.

Oh, and don't forget to update us

[Giraffe]

I pasted the HTML. I'll try with the IMG code:

http://i276.photobucket.com/albums/k...e939-1-1-1.jpg

http://i276.photobucket.com/albums/k...cture197-1.jpg

I'm looking at the Dr Palmer page now & will look for others. I've been back & forth between this thread & the boys mostly. They've taken naps at weird times today.

[EXOLAX]

Originally Posted by Giraffe

I'm really going to have to learn some terminology.

It's the bottom edge of his gums where his teeth came in that is arched. It's not arched up a lot, but it is noticeable. There is a rather large gap between his top front teeth. He has 4 top teeth & 4 bottom teeth so far.

Sorry about all the terminology... It could be nothing, or it could be something, but the arch in the gums struck me only because our of our experiences with our ODD. Her notch in her gumline was obvious only because she also had a cleft lip there. I could be reading more into your situation. FWIW the columella's are the parts of the upper lip that form the 'columns' of the cupids bow. It's typically where cleft lips are seen (though sometimes they can be centrally located). So if the arch in his gums is left or right of center, under one of the columellas' it could be an indication of something else (or nothing at all). Combine it with the high arch in his palate and I would suggest having anything else ruled out.

If you can get a referral to a craniofacial clinic I would still highly suggest it. The OT's there can help with feeding and give insight into a speech difficulties he may have, and the dentists can take a look a the teeth and gums and rule anything else out. They can also look at the palate and assure that it isn't a submucal cleft.

FWIW I had a palate expander for an under bite and didn't have any issues with it. The only thing I recall was having to deal with food getting caught between it and my palate, but things could have changed in the past couple decades.

[Giraffe]

This has been a great thread for me. You mommas are so full of info. Thanks for clearing up terminology & making recommendations. This babe has certainly been full of surprises. I will follow up with the ped soon to work on getting referrals & try to get an EI eval soon too. It may be a while before there's an update of any kind, but I'll be back.

[bmkimlev]

I have twin sons who are 8 months old. One of my sons has a lymphangioma on his scalp. He has had it removed twice already and getting ready for a 3rd surgery. My other boy has a high arched palate. It has not been diagnosed yet from a doctor. I plan on making an appointment in the next couple of weeks. My other son's condition is taking precedence at the time. My sons palate is however very high and I have noticed the freeze dried fruits and puff snacks getting stuck in the roof of his mouth. Only one tooth has grown in the top and it seems to be crooked, in the wrong spot, and coming out of the front of the gum line instead of the bottom of the gums. Please keep me updated on your child's condition. I am trying to gather as much information as I can before I make an appointment for him to be seen. Good Luck!