Speech, Feeding, and Occupational Therapy

Ellie received her first feeding evaluation when she was around a year old.  She began refusing a spoon at 10 months of age, and had several other sensory and milestone issues by 12 months. Since we were also in the limited foods, and FPIES what-should-we-feed-now guessing game, the feeding evaluation seemed to go nicely with the nutritionist recommendations. We had a great evaluation and she recommended follow up, but insurance didn't pay.  She had given me several things to work on and it took months to come close to conquering those, so I had no desire to go back for more of the same. 

Her second feeding evaluation came around the time she turned 2.  This evaluation was focused a lot more on her increased sensory processing issues, and what the therapist called being 'hyper aware'.  Ellie still had lock jaw and would not let me feed her a spoon or brush her teeth at this point.  Of course she was still on primarily broth at the time, so I think we became a feeding therapist worst nightmare.  Instead of suggesting foods, she focused on introducing us to skin brushing to help Ellie begin to process exterior input a little better.  Insurance didn't cover this either so we did not go back.  At home Ellie did not tolerate the skin brushing at all, and some very knowledgeable friends suggested trying pressure therapy so I did.  This worked for quite a while, especially during her sensory melt downs.  

We have better insurance now, and so I asked for Ellie to be referred for evaluation again.  Her neurologist felt she needed to begin with an extensive neuro-psych evaluation to eliminate Autism first (whatever?!).  I figured that would get us in the door to finding an appropriate therapy team for Ellie. So we went. Four hours later and a team of doctors and interns staring at us through a one way glass, we were told she does not have Autism (duh), and that she is on par for an average preschooler. In fact the doctor said it was quite remarkable the growth and adjustment that had been made in the last 12-18 months, to which I gladly explained was due to her change in treatment (we started GAPS).  We were then referred for speech evaluation, feeding evaluation, and occupational therapy evaluation, and told she appeared neuro-typical aside from controlled, food-induced seizures.

In addition to still being on a bottle, Ellie has been hugely attached to the pacifier (which we call a soother and she calls a soo-soo).  We told her that she could get a prize when she threw them all in the garbage. The conversation went something like this:  


Me:  Big girls don't have soo-soos.  
Ellie: I not big girl. I Ellie.
Me:  Are you a baby? You are not a baby! Baby's have soo-soos.
Ellie: I not a baby. I Ellie.

bear, soo-soo, blanket

So I figured we would be toting that stubborn girl's pacifiers around until she went to college. Alas, on the one day of the year I said I would never leave the house (Black Friday) Ellie walked over to the garbage, tossed them all in, looked at me, and said "What my prize?" Off to the store we went for her heart's desire - a stuffed tiger like her sisters.  It made this mommy sad that she simultaneously gave up her bear, which she has used for sensory soothing since she was an infant. Bear, soo-soo, and blanket were the must have trio for sleeping, and woe were we if we went out and left any of them at home.  She is hanging on to the blanket still, occasionally asks for a pacifier, but poor bear doesn't even get a glance.  Sad, sad day.

Last week we headed off for her fourth feeding evaluation, and arrived to find we were working with a speech therapist. Hmm.  I went with it.  She was very warm and put a lot of effort and energy into helping it be a productive appointment.  She had reviewed Ellie's super thick file and was more aware than most of the doctors we have encountered.  I did not have to go through her medical history much at all, which was incredible.  In fact, I think I might fill out one of those nice 'star reports' that they have in the office the next time we go in.  She admitted she did not have many specific foods to suggest, but gave me great ideas instead.  She suggested dipping activities, and to not focus on Ellie actually eating but to just get her to the table by making it desirable and fun.  My biggest hang up was that all of her MD approved handouts recommended ridiculous things for therapy.  Cheez Whiz? Seriously? But Ellie warmed up to her nicely and we went home armed and ready to cut up pancakes with knives, and play basketball with toothpicks and meatballs.  This all seemed quite ridiculous to me, but within a couple days Ellie was asking to feed me and joining us more at the table.

chair outside drying....

She has also always sat in the same chair eating her bottle the same way for 2 years now. The house is filled with tragedy whenever the chair must be washed and temporarily unavailable.  Now she has been eating her bottle in various places around the house! 

Overall we are making progress. It seems like a crawl but we are still moving in a forward motion.  I have been convinced her lack of chewing is due to her lip tie, but a friend's daughter (same age, same diagnosis, same lip tie) just began chewing away, so I am no long so convinced.  My absolute biggest hope is that we can get some solids into her and that might trigger a full night sleep.  At this point in the game my body is dragging from waking up multiple times every night. Thank goodness Daddy helps with that!

Lip-Tie

Last Friday we loaded up the girls and headed to (city removed)* for a much anticipated, long sought dentist appointment.  We were not disappointed.  The office of (dentist name removed)* was fantastic with it's fresh flowers and beautiful decor.  His lovely receptionist/scheduler met us with a kid friendly grin. She happens to be a licensed O.T. which I find to be a complete score for the dentist.  And the visit started with Ellie's first non-house pee-pee on the potty, so we were off to a good start. 

Big Sister was the first to be examined.  (Dentist) took a look and announced her tongue looked great - no posterior tongue tie! Hooray!  However further examination showed that she has a severe lip tie (from his description I am guessing it is a class 4), and a very high, misshapen palate. He believes the palate issue is affecting her sinuses, breathing, sleeping, and swallowing.  It has created a cross bite making it hard for her to chew, and he said sometimes it can even effect the tonsils.  He said the lip tie will be easy to fix with the laser, and then very kindly explained that the palate issue was due to her mouth muscles.  The summary:  confirmation of my mommy fear. My listening to her initial pediatrician about how tongue ties are no big deal resulted in her mouth not growing right.  My solace was someone finally validating what I see when I look in her mouth - a palate that could hold one of those round, rubber, bouncy balls from a vending machine.  It only took 6 years. She will need an orthodontic spacer retainer for the roof of her mouth, and she needs it now to avoid further complications or surgery in the future.  When I asked how long she would have to wear it, he said he was sorry she would have to wear it from 4-6 months.  4-6 months? Piece of cake! After 6 years of worry and knowing something was wrong, I am certain 4-6 months will be nothing.  Unlike Ellie, Big Sister has gone through extensive speech and feeding therapy yet no one ever diagnosed her lip tie and palate issue (insert giant exasperated SIGH here). This is the first time we have had answers and a solution. This makes me ecstatic.

Next up was Ellie.  Following Big Sister's brave lead she climbed up into the exam chair without coercion.  Getting her to open her mouth was a whole other issue.  She insisted on clenching and baring her front teeth each time he asked to see them, and no matter how many times I explained 'say ah' she did not open her mouth.  I finally was able to pry her teeth apart so that he could take a general look and count. And then I carefully lifted her front lip so he could see the tie - to which he said, 'hers is actually worse'.  Wow!  Big Sister's class 4 already extends into her palate, so what does that mean for Ellie's? A worse class 4, I guess.  He said her tongue appeared o.k., but was unable to see into the rest of her mouth, so he will complete her exam when we come back for the laser surgery.

The surgeries are important.  In addition to speech and feeding issues, both girls would have a gap in their front teeth that is never able to close due to the muscle in the way.  I only wish we could have discovered the need and gotten the treatment sooner.  I was thrilled to hear that (dentist)'s office focuses on providing education about the treatment of tongue and lip ties to the local agencies that work with infants.  There is a huge gap in knowledge regarding feeding issue and GI symptoms in infants.  If you have not had a chance to investigate Dr. Kotlow's work, it is quite remarkable.  His paper titled "Infant Reflux and Aerophagia Associated with the Maxillary Lip-tie and Ankyloglossia (Tongue-tie)" took my breath away and then reduced me to tears when I found it.  Not every FPIES child, or GAPS kid, or child with GI issue has a tongue or lip tie; but I was horrified to discover the number of them that do.  There may be some medical and nutritional reasons for that, which should be reserved for another post. 

We head back mid-July for two lip-tie surgeries and a retainer fitting. Details to be worked out include the oral sedative for both girls.  I am hoping to get it compounded for both, but forgot to write down the name of it.  One of my absolute favorite things about (dentist) is that he is a doctor who is still learning.  What a gem to find!  When we called to make our appointment he did not have the ability to give a sedative of any kind to a pediatric patient.  Because of the need for my girls, and my friends infant and toddler who also saw him recently, (dentist) sought out a solution.  By the time we arrived for our consultation he had an answer for us, knowing and recognizing Ellie's limitations.  Can you see my grin? I'm a happy mamma!

*name and city of this dentist have been removed after the writing of this post. procedures did not go well (see this post) and while this dentist was not spiteful or intentionally harmful in any way, I do not wish anyone finding this blog to feel we are referring to him for a pediatric patient.

Onward...with patience.

Onion has been removed from Ellie's broth for about 4 days now, and we are seeing quick recovery. Her eczema is clearing and she seems to be moving back into the realm of more normal poo. Hooray! But once again we are in the place of 'now what'.

She finally had her feeding evaluation which has given us a few ideas of how to work on getting her to swallow, and so we have focused on getting her at the table with a bowl of water and a spoon, or meatballs, or puree, or zucchini of some nature, in hopes of moving more towards a 'full belly' feeling. She licks food, or feeds me. And says 'mmmmm'. Or pretends to chew. Or eats rocks and paper.

We have worked hard at making the food in the house 'safe' for her. Even though she can not eat it, we are focused on removing things that would actually hurt her (like corn or soy). That way we can spend less time screaming 'stop don't touch that' and more time letting her explore. Luckily we almost always have some sort of meat on the table that she can chew on without worry. Except for chicken, which should be ready for butcher the end of July.

So overall we are moving forward. I suppose. Patience has never been my gifting, and this waiting-for-healing-thing is certainly difficult. (can you hear it in my tone?) Or perhaps it is just this up-twice-a-night-every-night-for-two-years-thing that is wearing me down. Or maybe it was the full vomit reaction she had this weekend after attending a birthday party where she was inadvertently included in a cloud of aerosol sunscreen that was not intended for her, reminding me of how sick she really is. Or.....

I am going to choose to blame it on the fact that it is gloomy and raining on one of these last days of June. And remind myself of this all too familiar scene, which makes me laugh every time. Those people who wake up whistling? They drive me nuts.

We Won't Be Keeping This Doc

A few weeks back we had the opportunity (insert sarcasm here) of attending our long awaited appointment at the local pediatric GI office. We met the doctor who Ellie was assigned to after our favorite GI relocated. I truly thought I had low expectations for this appointment, but they just were not low enough. Luckily I had spent a lot of time praying about it, and when the doctor walked in I just knew that he had no information to present. He did not appear confrontational; he appeared intimidated. And that helped me to have grace for him.

That being said, he still did not conduct a thorough examination of Ellie, and he did not appear to have taken much of a look at her file. He already knew how upset I was that I did not get an earlier appointment, and that I had been waiting to speak with him about the very extreme results of her sugar intolerance test. The appointment started like this:

Dr: Hello I am Dr. M. So you were a patient of Dr. B's?

Me: Yes.

Dr: And you saw him regularly?

Me: Yes.

Dr: And how is she doing?

Me: Well OK. She has not been able to move forward in trialling foods.

Dr: And why is that?

Yeah. Why is that exactly? Maybe her sugar intolerance? Maybe her FPIES??? I don't know Doc. You tell me. I was not impressed.

I did request a entire panel of blood tests to be done since we had not had anything checked since taking her off the formula and beginning GAPS. He also wanted to the blood work for the same reason. Fast forward about 20 minutes to the end of the appointment.

Dr: I am going to go put in the referral for speech and food therapy from my desk. There is a huge wait and that will take months for you to get her in. I think three months is a good time for her to reschedule...well...there is that matter of weight loss...so lets make it two months. (He walked toward the door)

Me: OK.

Dr: Bye Ellie (waves at Ellie, and leaves)

Time for a referral out.