Monday, March 12, 2012

Ear tubes, lip ties and old wounds.

Several months ago David and I realized that Juliana's hearing was muffled. She didn't look when we called her name and she wasn't crying when the dog barked loudly. Shortly after this realization we learned that she had Kabuki syndrome and that hearing loss could happen in kids with Kabuki. We added an ENT doctor and audiologist to our long list of specialists.

Today was our third visit with the ENT. He's been keeping an eye on Juliana's ears and they have shown some improvement overall (thanks to GAPS, of course). These days we know that Juliana is hearing - she looks when we call her and she's also shown us that her speech is beginning to develop. Today we discovered that her right ear is looking much better but her left ear is looking worse. At this point it seems like we have given things enough time to improve and that intervention is appropriate. She will be getting tubes sometime in the next month.

I also asked the ENT to look at Juliana's mouth; specifically I wanted him to check out where her upper lip meets her gums. Nichole recently discovered her daughter's lip tie and it seems to be common among several GAPS kids. Of course I immediately checked Juliana's mouth and it seemed like she had one, too. Today's visit gave confirmation that Juliana does indeed have a lip tie. It will also be fixed at the same time she gets the tubes.

Here's the part that hurts: I've seen over a dozen people for Juliana's feeding issues. I've seen multiple doctors, I've seen lactation consultants, I've talked to LLL leaders. I've seen alternative practitioners that seem to be one step away from being voodoo doctors. I've seen three therapists that specialize in oral motor therapy. I knew to bring up tongue tie with several of these people but I've pretty much been blown off because Juliana doesn't have an obvious tongue tie. But not a single one of them has ever mentioned lip tie. It didn't cause her GI problems although it can do just that in some babies. But I will always wonder how it impacted her inability to nurse. She tried so hard but she just couldn't. It was hard to know at the time if the inability was due to tachypnea (maybe initially) or to low tone (her hypotonia is mild) or to GI pain (maybe).

I would like to end this post on a happy note, but there is none when it comes to this walk down memory lane. I am astounded that we could see so many 'experts' and yet never once have we had this very simple problem identified. It adds to the feeling that I am playing a mad game of catch-up; learning all the things that I need to know to help Juliana but sometimes not learning them until it's too late.

4 comments:

  1. I've never heard of a lip tie until now! And we had multiple feedng issues, including a few hospitalisations for failure to thrive. And I did heaps of research about possible causes. Just goes to show. Sadly I've now come to expect most doctors not to know too much about anythng and realise that it is largely up to us to figure things out. A big burden for any mum to carry. But thank god for the internet. Sophie is at her Nana and Grandpa's today and i can't wait for her to get home to check her mouth out!! (and am also havign a fw tears wondering if this could have been a contributing factor to the feeding issues)

    I still harbour lots of resentmnet about lots of things doctors didn't pick up, even with me begging for help and offering suggestions. It took until 4 months to get Sophie's reflux diagnosed, by which time I think her pain/feeding association was so strong that nothing ever managed to make her breast or bottle feed well (I'd suggested reflux many times but was told it was a milk supply issue, just a fussy baby, all in my imagination etc etc). Am so so upset adn angry abotu teh pain she went through, at least some of which could ahve been avoided. Luckily she didn't have the same pain associations with solids and so solid feeding was not an issue for us.

    I soooo understand what you mean about playing a mad game of catch up. Sophie is 2.5 now - the precious "zero to two" window is gone. There are so many things to do! So little time! But I've heard some amazing stories from Mums starting therapies with kids at later ages (even up to age 12!) and having great results - so maybe we should cut ourselves a break and realize we can only do what we can do. You are an amazing Mum, don't forget it :)

    (One last thing - I'd HIGHLY recommend joining the casana/apraxia email list - I've learnt SOOO much that has been of help to Sophie from people off that list - apraxic kids deal with feeding issues, speech issues, some have dietary issues, most have fine and gross motor delays etc - info from that group has been as useful to me as GAPs!)

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  2. This makes me want to cry. I sooooooo have been battling this with the lip tie thing! The absolute frustration that therapist who are evaluating for feeding issue do not take a look at the function of the mouth first makes me want to kick someone. Sorry, probably not very encouraging. I could totally commiserate! As for the ears, I know it may be a bummer to be looking at tubes, but I know that we waited too long with my 6 year old to do everything - too long for the tongue tie, too long for the tubes....and it all has complicated things. I am praying the tubes will help get another level of healing going! *hugs*

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  3. ohmigosh Sophie has a lip tie. I can't believe it. So many feeding/reflux problems and maybe some avaiodable. Like you am feeling gutted. ENT appointment in 2 weeks time will talk to ENT about it then.

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  4. We saw our SLP today and I mentioned it to her since I thought maybe I might be blowing the whole thing out of proportion. But no, she agreed that it could definitely make nursing difficult and could even make drinking from a bottle difficult. This wasn't Juliana's only problem but it could have easily contributed to the other problems to some extent.

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