Post Procedure Confirmation

I didn't talk about the trip to the dentist for over a week. To anyone.  Daddy and I didn't even talk about it, and spent the week fighting nasty fights spurred by guilt and anxiety.

The revision site for Big Sis does not go between her teeth, and the muscle is still very obvious there.  I was worried that the surgery did not release enough of her lip, and that the surgery was incomplete.  The photos included in Dr. Kotlow's literature show revision between the teeth with severe lip tie.  How was I to find out if the surgery was complete or not?

Big Sis Before

Big Sis After

As for Ellie, obviously hers was not complete.  Now what?  Could I seriously take her anywhere except for someone who would put her under general anesthesia? We can't mess around. She will now need to see either Dr. James Jesse in L.A., or Dr. Kotlow in NY, but neither of them use general anesthesia.  We can NOT allow another event like this.  Will we ever get her into a dentist chair again?

Ellie Before

Ellie After

Over a week later I began to process things with a friend.  She suggested emailing Dr. Kotlow about the procedures, and ask him the questions directly.  Was Big Sis' procedure complete?  Would he recommend just doing a general anesthesia with Ellie considering her history and this experience?  So I did.  I sent the before and after pictures, along with a very brief email.  I purposefully left out the name of the dentist who we saw. I have no desire to bash him publically or appear as if that was my motive.  And at one point the receptionist had said she knew Dr. Kotlow personally, so I really did not want to bring that up.

The following morning my phone rang, and when I answered it I heard "Hello, this is Dr. Larry Kotlow in Albany, New York." Say WHAT? That caught me off guard. WOW!  We chatted. Actually, I mostly just listened.

Confirmed: Dr. Kotlow would have cut between her teeth and saved her the complication of additional orthodontics in the future.  Not all dentists do this.  He is not concerned about her lip which looks resolved; he is concerned about her teeth. She needs a palate spacer immediately.  It's not too late to go back and finish the procedure.

Confirmed:  The experience with Ellie was set up to fail.  She would have been in the chair for 90 seconds in his office.  He does not recommend nitrous oxide.  He does not recommend valium.  Obviously she still needs the procedure.

I can not explain how grateful I am for that phone call.  The top tongue and lip tie specialist in the world  took the time to call and answer my questions.  This confirmed his rock star status for us.  A doctor who cares about what he does.  Who takes the extra time out of his day incredibly busy day to phone a very upset mama.

Big Sis has recovered nicely.  She still has a little residual anxiety, but the revision site is almost entirely healed and thanks to some homeopathic remedies she had almost no swelling or pain.

Two weeks later and we still have one angry, angry little Ellie on our hands.  I prayed for three days that she would not turn inward like she normally does. On day three she started yelling. And screaming.  And hitting.  And yelling a lot more.  I have spent at least three times every day watching her escalate in frustration over anything or nothing.  Screaming which becomes banging her head, hitting herself, and then rocking her on my lap until her yelling stops and she cries.  And in the middle of it all God is gracious.  I have prayed for two weeks straight - I have begged - that she wouldn't refuse food other than her bottle and clamp her mouth shut permanently, and those prayers were answered.  Instead of regressing she has decided she wants to eat.  For the first time in her life she shows signs of understanding the difference between 'liquid' full and 'solid' full, and is asking to eat bites.  She is eating puree for the first time since she was 10 months old!

As for our next steps, we are looking for a functional orthopedic for Big Sis' palate spacer. And I have no idea how, but it looks like we may need to go to New York.

The Rest of the Story

("Botched" part two)

We arrived at the dental surgery appointments with nervous anxiety.  We had preconceived ideas of how things would go, and I comforted myself by reminding myself it would go quickly. They were ready to go when we got there.

Ellie went first.  I took her back to the room and placed her in the chair, and then ran out to the car to get the Valium bottle we had forgotten so that they could log it in her chart.  They covered her with a blanket to make her comfortable, which was my first major mistake.  I allowed that, which in retrospect was a major invasion on her little sensory issue body.  Fine for 99.9% of the population I am sure, but was not o.k. for Ellie.  Then again maybe not.  It seems a bit scary to me for any 3 year old to be put into a dentist chair and then covered with a blanket.  When I got back I was asked to wait out front and told it would be better if I was not in the room.  I figured since it was a fast procedure and I was not thrilled with the idea of watching, that would be o.k.

Time went on and she was not done. We were reassured several times that she was fine, not crying and just sitting in the chair. They were waiting for her to go to sleep. This bothered me tremendously, as we were told prior to coming that the goal was *not* for her to be asleep, just 'relaxed'.  Time ticked on.  We had an additional dosage of Valium left, because per doctors orders I had dosed her low.  We didn't know how much she would need.  They asked how I administered it and said they were going to give her the remaining dose.  Uhm...O.k.  I said I would get her water and they said, no worries we have ours.  I was not prepared for this.  I froze. And I totally regret allowing this.  FPIES complications allow for cross-contamination fears and I did not like the idea of them feeding her anything with anything.  Was the water filtered? Did they use a cup with wax? I decided that one time, small amount would be fine.  It did not occur to me until later that Ellie barely lets her daddy and I feed her anything.  Had she been scared that they had fed her? How did they get her to take it?

I also had not gone back to the room to check on her.  Every time I got up I was reassured everything was fine.  She wasn't that far away, and I didn't hear her crying.  I was told she was asleep, and then told she wasn't, and then told they were just waiting for her to go to sleep. And then told the dentist gave her nitrous oxide, and that he had checked and it was perfectly safe.  At this point I began to get angry, but felt totally and completely trapped. I desperately wanted this procedure done and successful, but had no information on laughing gas, was not told it was a possibility, and the idea that they found a document saying it was 'FPIES safe' was laughable alone. Those types of documents do.not.exist.  We were an hour in.  And at this point I did not go back to check on her; I took their word that she was o.k.  I regret it terribly.

At this point we were so far behind they said they were going to go ahead and get Big Sis situated and ready.  My anxiety and feeling of being overwhelmed because immeasurable. Two kids in separate chairs at the same time.  We went back with Big Sis to the room next to Ellie.  They also gave her a blanket, and another dose of Valium since she wasn't sleepy enough.  She was a trooper.  She had no fear and barely wanted us in the room.  Daddy said he was going to check on Ellie. I said I couldn't look or I would just go get her and the procedure will be done. And that's what I should have done. I should have gone and got her and called it quits then.  I thought I was doing the best thing by staying away because she would not go to sleep if I was there. She HAD to go to sleep for them to do the procedure.  She MUST have the procedure. We don't have the money to go to anyone else.

Daddy said he thought Ellie could hear us in the next room and she was stirring.  I told Big Sis to talk quieter and was horrified.  All three of us were next door where she could hears us, and she was alone and scared.  We backed to the wall between and I peeked in on Ellie.  She was not moving and I couldn't see her clearly.  She was being monitored but I couldn't stand it anymore and went in. Daddy followed close behind.

What I found will be etched in my mommy mind forever.  I have never, nor do I ever wish to see again, the look of fear that was on her face when we approached the table. I don't really remember what happened in what order for the next 45 minutes or hour.  She was wrapped in a heavy blanket, her body stiff as a board, her mouth clenched shut so that her jaw muscles were visible and her eyes huge.  She was not crying.  She was not moving.  I was worried about the medication so I checked for breathing. It was shallow but there. I asked her if she was breathing ok and she nodded a little.  She never opened her mouth.  She saw us but did not move, or even turn her head.   I stroked her forehead and said 'mommy is right here'.  Large crocodile tears rolled down her cheeks but she still did not cry or relax her jaw.  At some point we backed out of the room to try and get her to sleep. Somewhere in there we heard Big Sis start to cry and I went to comfort her. I had told Ellie I was right there and going to check on Big Sis.  As I walked away her lip began to quiver and more tears.  Big Sis was ok. Her fear and crying was from the shot of Novocaine.  It was impossible to be in both places at the same time. I heard Ellie call a cracked "mommy!"  Daddy stayed and kept an eye on Big Sis, and I hurried over to her.  She was sweating.  I pulled back the blanket and her arms were stiff and stuck to her side, her fists clenched.  She did not hold her comfort bear.  'Owie lip' she said.  That was from the novacaine shot.  It wasn't until the next day that I realized she was so afraid to open her mouth that she didn't cry, and she didn't call out for me.  That makes me want to vomit.

I picked her up and comforted her.  It took many minutes for her to relax and for her breathing to return to normal.  Maybe if I held her she would go to sleep and they could do the procedure?  No way.  It didn't take long for her to continually beg to leave to the other room.  I can't say I blame her.

Procedure done for Big Sis, and called quits for Ellie. Big Sis did great and he had to 'cut more than he had thought, and he could have cut more'.  We received instructions on how to care for the revision site.  For Ellie, we were told they had started and done one quick swipe with the laser but it was nothing to even check on.  It was nothing that needed cared for and even worth mentioning.  Later I discovered a milimeter of a revision site when it started to tear at home and bleed.  She would not let us near her mouth and I had not known.  I thought there was 'nothing', so I had not even given her motrin or homeopathics for pain.

By the time we left we were stuck in construction and traffic.  It took us over 4 hours to get home.  Maybe 5.  I cant remember.

Botched

Confession time.  This last 10 days I have been a wreck.  Our laser surgery experience was so bad that I have not wanted to think about it, talk about it, or even come close to blogging about it.  I have been so busy dealing with fall out, disappointment, questioning God, and fear for our next steps that I have had no problem ignoring everyone who asks how it went.

*deep breath*

I did an incredible amount of research on tongue and lip tie.  One of the newest doctors on our rock star list is actually a dentist.  Dr. Kotlow is the leading tongue and lip tie specialist in the world, and maintains a very busy dental practice in Albany, N.Y.  Unfortunately there are only a handful of dentists in the country that can perform the minimally invasive and extremely fast laser surgeries that he does to correct tongue and lip ties.

We are limited on money.  If I had the money I would have loaded up the girls and flew them to N.Y. for a fast procedure that would have changed their lives.  Within 24 hours they would have gone from limitations to freedom, but there was no way I could see that as a financial reality.  Air plane tickets, place to stay, rental car, figuring out Ellie's food for travel, and the cost of the procedure (because we all know how great dental insurance is) were all expenses that made me have small panic attacks.  So I spent months searching for a doctor within driving distance.

There is one doctor recommended by Dr. Kotlow on the west coast.  He is in the L.A. area and known for being an excellent pediatric dentist, as well as having the ability to perform the procedures that Dr. Kotlow does.  I called their office and spoke to their receptionist at least half a dozen times.  Each time she sweetly reassured me that Dr. James Jesse could do the procedure, and that the girls would not need sedation.  What!  This was my major hang up.  In their office they have the parent hold the child and help restrain for the procedure. No matter how fast the procedure was, I could not imagine subjecting Ellie to that.  Her years of poking and prodding have caused her to ask 'doctor hurt me?' before we enter any appointment of any kind.  I did not want her associating me holding her down with the procedure, and felt that if she was awake she would most likely never open her mouth for a spoon again.  I prayed and prayed and prayed, and every time I thought of taking them to L.A. and holding her down, or expecting big sister to sit still, I wanted to vomit.  The cost of travel down seemed out of reach as well, and at the time we did not have a reliable vehicle that we could risk driving that far.  It all seemed like the wrong choice.

I kept calling until I happened to find a doctor that was closer and within a 2 hours drive.  He is not  pediatric dentist, but is known for being a most excellent laser dentist, which I confirmed with Dr. Kotlow by email.  This doctor is familiar with Dr. Kotlow and his procedures, and I was told by the receptionist that he had attended Dr. Kotlow's training.  They don't typically do children between the ages of 2 and 6 because they do not sedate them and they do not have restraints; they, too, expect the parent to hold the child.  However, they heard our need, and wanted to help.  They researched sedatives and those that Dr. Kotlow uses, and they worked with us, as I had multiple emails back and forth regarding compounded solutions for Ellie.  I insisted we find something, because I really wanted the girls to be relaxed and as 'out of it' as possible. The receptionist continued to remind me that the "goal is not to knock them out completely - just relax them enough so that they don't fret/get too anxious/be very wiggly during their appointment".  They scheduled both girls on the same day, half an hour apart. Daddy took the day off and it all seemed stressful but like it had worked out.  The procedure is 10-15 minutes from start to finish, so we should be on the road and headed home within an hour.

The week prior to the appointment there was complication after complication regarding the sedatives.  The first one didn't work at all, the second on was out of production, and the third one we were unable to do a trial run prior to the appointment.  The girls' previous pediatrician expressed his concern about the procedure and was not on board.  But this was the only dentist we could get to, who knew of all three mouth ties, and we are running out of time for big sis.  I prayed non-stop for months and saw this as the only option, and the best option.  In spite of my anxiety, I was excited - excited for what this would mean for both girls.

That day did not go as we had hoped.

That morning we got up extremely early, loaded up the girls, packed our lunch and all of Ellie's food, and headed to the dentist office.  We planned to arrive in town early to administer the sedatives because we did not want to do that in the car on the way there and then watch for symptoms, etc.  We left early enough to avoid Ellie falling asleep in the car, in hopes it would help with the procedure.  We were well planned out.

We got stuck in traffic and were 30 minutes late arriving to a local park where we fed them a small lunch and gave them their sedative (Valium - the easiest to compound, and best suggested sedative by our respected doctors).  They did not have enough time for it to entirely kick in and were only groggy and goofy, but that was ok because we (they) only wanted them relaxed, so I had to let that go.  Off to the appointments we went.

(part two)

Chew

Ellie began refusing food and being fed at about 10 months old.  She has not taken a spoon ever since. A combination of associating food with pain, never allowing her to put things in her mouth for normal development milestones, not being able to eat food, and an entire list of other factors have created a toddler who is almost 3 and still on the bottle ... or so we thought until recently.

Specialist appointments and two feeding evaluations have left doctors saying her delays are not physical, but are entirely developmental.  They all agree she needs intense therapy and now has full body hypersensitivity.  We were introduced to body brushing and the importance of desensitizing the mouth.  The toothbrush introduction went semi-o.k.; the body brushing was way too much for her to handle.  Instead we use our hands to put pressure on various areas of her body and help bring awareness to things other than her mouth and butt.  We especially use this when she gets a bump or bruise because her sense of pain is completely exaggerated.  One skinned knee brings hysterics, and I quickly learned that if I grab her and begin applying pressure to other areas of her body she has an easier ability to calm down.

About 4 months ago I was attempting to 'brush' Ellie's teeth when I discovered what appears to be a class 3 (perhaps a class 4) lip tie.  I soon learned there are lip ties, anterior tongue ties, and posterior tongue ties. Having one increases the risk of having another, so I want to be sure she is examined for all three.  Research has also shown that there are only a handful of doctors in the country who are trained to diagnose and treat posterior tongue tie.

Big Sister was born with a class 1 tongue tie, and it is one of the biggest mommy regrets I have.  I listened to the pediatrician who said 'oh tongue ties are over diagnosed - she will be fine', and the result has been speech and feeding issues.  It took months of fighting to get her a frenulectomy at three years old.  It could have been a no risk office procedure when she was an infant.  She has gone through feeding and speech therapy, and at 6 years old she still has trouble swallowing and speaking.  There is a chance she has an untreated posterior tongue tie.  NOW I know that tongue and lip ties are most likely completely underdiagnosed.

For 4 months I have searched for someone to examine both girls, as well as fix the problem.   Finding a doctor, oral surgeon, or dentist who is trained in posterior tongue tie, uses a laser, and also does pediatric sedation, is almost an impossibility. The Intenational Affiliates of Tongue Tie Professions, founded and led by Dr. Kotlow of NY, has given me help on the search; yet everyone I called was either unable to treat the posterior tongue tie, did not do pediatric sedation, or could not do a lip tie this severe.  We are applying for Ellie to be seen at the local Shriner's for her spine and mouth, but this is of no help to Big Sister. I began to think I would have to fly them both to New York.

A friend looking for her own kids led us to a pediatric dentist 2 hours away.  He does not do pediatric sedation, but is experienced in posterior tongue tie and considered an excellent laser dentist by Dr. Kotlow. Not covered by insurance, an evaluation will cost me $75 per kid.  Tomorrow morning we get up extremely early to make the 2 hour drive to Sonoma, and I think this will be $150 well spent. And I believe Ellie is ready.

On the final day of Team Ellie, I was witness to one of the biggest miracles I had seen in some time.  At Ellie's last O.T. evaluation it was strongly suggested that we feed her meatballs.  Meatballs she can feed herself, are safe, and provide new texture.  After at least 6 months of trying to bribe, beg, and manipulate her to eat a meatball, on May 10 she asked for one, put it in her mouth, and spent 45 minutes carrying around, sucking on, and attempting to bite pieces off of meatballs.  I was floored.  She has slowly progressed from that day, and now she will willingly feed herself soup and participate in dinner. I can no longer let her carry around food that she is not ready for, because she may take a bite!

It is not in the plan for either girls to receive surgery tomorrow morning, but I am anxious for the information an evaluation will give us.  Big Sister needs to eat without gagging, and Ellie needs to learn how to chew.  It's not often I am excited about a doctors visit!