Friday, March 9, 2012

Bumpity Bump Bump

There is no doubt that the road toward feeding Ellie is one that has been bumpy.  I used to joke with other moms about Dorie from Nemo (just keep swimming, just keep swimming!).  Then I realized I had transitioned into more of a foot dragging trudge than a swim.  Lately it has included a few breath taking sucker punches.

Ellie recently had her first post-GAPS seizure, and has been having some neurological complications ever since.  Most of these involve her eyes, and they certainly may amount to nothing. But we learned that she appears to have been having regular seizures prior to going GAPS.  It was an initial sucker punch, but one that I came to terms with quickly.  It is not hard to make the leap from what we are already dealing with to neurology. There are lots of medical connections between the intestine and the brain.  And the seizures are obviously controlled.

Sucker punch number two came shortly thereafter.

We recently took Ellie back for a second O.T. evaluation regarding feeding therapy.  One year ago she was not considered far behind.  Now, she has no problem standing out as that bottle fed almost-preschooler.  We received good tips on body brushing and pressure points to desensitize her hyper-sensitive self.  The body brushing was not received well by her, and I believe it is because of her head to toe eczema as a result of a recent trial.  I continued with the pressure points and massage instead of brushing, and it has been working! One improvement is teeth brushing.  She has been asking me to brush her teeth regularly when she has never allowed me near her mouth much before.  The result was a new discovery.  Wait for it.....

Ellie has a lip tie.

What? You were hoping for something a little more dramatic?  Doesn't seem like much of a big deal?  WELL....*ahem* let me TELL YOU THE DEAL.

Ellie has had a panel of doctors since she was 10 weeks old attempting to understand and explain her feeding difficulties.  She has been scoped, poked, prodded, and pricked.  She has had two complete OT evaluations for feeding issues, and been continually re-evaluated for an EGID. She had chronic respiratory issues, coughing, reflux, and unexplainable 'asthma but not really asthma' symptoms.

Noone. has caught the lip tie, and the therapists never even looked in her mouth.

Now, we are not talking a small lip tie. We are talking a cant-pull-her-lip-away-from-her-teeth-and-why-does-she-have-such-a-gap-in-her-teeth sort of lip tie.  And yes, I know 'well, that can be clipped easily and corrected with surgery.'  But here is the deal.

1.  Our insurance does not cover O.T.  We pay over $600 a month out of pocket and get no O.T. benefits until after our extremely high individual deductible is met for Ellie. (as in thousands of dollars deductible)
2.  Our insurance will cover minimal costs for a surgery to correct this.
3.  The longer it goes, the more trouble she will have correcting speech and feeding habits. I listened to the 'oh that will just go away and is nothing' doctor suggestions for my 6 year old's tongue tie.  Dozens of complications, one frenulectomy surgery, and permanent speech problems later, I wish I had never listened.
4.  Did you know that in the first few months of life a tongue tie or LIP TIE can cause: colic, reflux, GERD, feeding refusal, constant feeding, distended belly from air swallowing, just to list a few.

Uh. Yeah.  That number 4 would be Ellie.  And would be classic infant FPIES symptoms.

*deeeeeeeeeeep breath*

Once I was able to inhale deeply and step away from that sucker punch, I was able to look at it a little more objectively.  Do I think that the root of all Ellie's problems and what led to her FPIES diagnosis was a lip tie?  NO.  What I *do* think is that it was another factor that made things that much more complicated, and are certainly complicating things now.  I did a quick (very small) poll and found four other lip tie or tongue tie's in the FPIES community.  Isn't that interesting?  Lip and tongue tie's are considered mid-line markers, if you would like something to visit doctor google about.

So we will be tackling the lip tie next, which now so easily explains why the girl can not get her lip onto a spoon no matter how hard she tries.  And though it may not explain all of her beginning journey, it certainly shows how each individual babe has an incredible amount of factors that add to their overall health.  From now on when I hear of that mom having trouble breastfeeding I will most certainly remember to say - hey! have you checked for a tongue or lip tie? they say they are nothing, but our experience says otherwise.  it could be an easy fix now that saves you and your babe in the long run.

And how will we pay for this surgery? Beats me.

I have picked up my feet and moved from trudge to a steady forward motion that sounds more like a bumpity, bump, bump.  This is partially in accepting that there will be sucker punches coming our way and I need to be prepared to roller-coaster right over them.  I am not sure I will ever get to the point of waving my hands in the year and screaming in delight as our car heads down for the next challenge, but at least now I am in a place where I can remember we will head back up the other side.


  1. Ok, all I can say is OMG!!!!!! I can't believe that!!!! That certainly explains a LOT! I know first hand that tongue tie wreaks havoc on a newborn so I can imagine the issues a lip tie could create. Wowza. Praying for you as you deal with this new issue!

  2. Wesley has one too! I noticed it when he was fairly young, it never interfered with his nursing but he does have trouble eatting off a spoon. The first person I asked about it was his dentist because he does have a separation in his front teeth from it. The dentist's response was that it would probably have to be clipped as he got bigger but it is also common that they fall and bump their mouth and naturally break. Not that you ever hope for a face fall for your child I hoped we would not have to have it clipped. He accually bumped into a friend's couch last spring and partially split it. I don't know if we will have to do more but for now it has helped some.
    I am amazed with you that it has taken this long for Ellie's to be discovered. Hopefully freeing her lip with lead to a nice leap of progress.

    1. yeah....last week I said 'what should I wish for? That she falls on her face and busts the lip tie?' seems junky either way. with the amount of falling she has done it is amazing to me she hasnt. glad to hear Wesley's is resolving on it's own!


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