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.

Boil, Blend, Repeat

Things around here are hard.  There is truly no coating that over with much, and certainly not anything sugary or filled with corn.  Everyday we boil, blend, and repeat. And repeat again.  In the middle we work, do laundry, try to feed the family, and look around at the things we don't have time to clean.  Then there is home school, the research, the doctors appointments, and....well, you get the picture.  The last thing I enjoy doing is adding another regular activity to the every day schedule.

Long before going GAPS I investigated the issue of disposable diapers.  Conversations about butt rashes, diaper creams, and diaper choices are common in the FPIES community.  How could it not be with so much revolving around poop? I too, participated in the investigation of which diapers had corn, which did Ellie seem to be ok with, and the reality that her uber sensitive self should probably be wearing cloth and not disposable.  But like mainstream thought, I had examined through the lens of 'what can we get away with' and not 'what we truly should be doing'. 

We switched Ellie over to cloth diapers and her skin improved.  I had no doubt that it was beneficial for her. But then came the laundry and the time involved.  It's work to keep cloth diapers clean, and to figure out how to keep a child who seems to pee 12 cups in one shot from peeing all over the house.  It wasn't just a matter of pee filled diapers, either. It was pee filled beds, and pee filled car seats, and an entirely new hurdle for even leaving the house.  Over time we became more lax, and back to disposables we went.  First it was just when leaving the house, and then it reversed to only using cloth at night to help contain the pee.  And I began to complain of the cost of disposables again. And the old way of thinking was back. 

"These disposables are probably not the best for her, but she seems ok....look how well she has healed that she can tolerate them....and she always did ok with Huggies...and the expense will be short lived once she is potty trained....and holy cow who wants to wash an FPIES poop off of those cloth diapers anyways??" 

The little beads that were left on her skin when I changed her diaper bothered me still, but they didnt leave a rash and any other diaper either had corn or caused a rash.  So onward we went.  Until recently.

Recently Ellie had a staph skin infection.  It was extremely heartbreaking to feed her the anti-biotic which I knew would be damaging her intestines and set us back on the healing journey.  She had never had staph before. In fact, all of our battle has been largely tied to fungus and those corkscrew little demons that can burrow right into the gut and leave gaping holes.  I had never stopped to consider other bacteria, such as staph or strep.

And then over twitter came a link to an article on disposable diapers.  I glanced through the article quickly, and assumed it would be like most of the other articles I read - discussing how landfills were full of them, and how our government was probably putting them in capsules and burying them in the ocean or some other environmentally damaging tragedy.  What I was shocked to find actually came near the bottom of the article and just happened to catch my skimming eyes.  Staph.  Staph. huh? STAPH!

Here is what I read:

One of the dangerous chemicals inside disposable diapers is called Sodium Polyacrylate. Even the “eco-friendly” diapers contain this chemical, too. This is the chemical added to the inner pad of a disposable that makes it super-absorbent. When the powder gets wet, it turns into a gel that:

• Can absorb up to 100 times its weight in water.
• Can stick to baby’s genitals, causing allergic reactions.
• Can cause severe skin irritations, oozing blood from perineum and scrotal tissues, fever, vomiting and staph infections in babies.

What in the.....

A quick google search confirmed.  This is another one of those 'common facts' that no one cares to share, or even thinks is important.  Dear Jesus, forgive me.  My eyes had been opened to risks so long before, and I couldn't deal with the thought of more laundry.  I was ashamed.

My 8^th grade teacher required the entire class to memorize a fantastic little quote. It has bounced through my mind repeatedly in the last few weeks.  Having been a professional educator now for more than 10 years, I feel confident in saying he would be pleased that I still have it tucked away in memory. While in junior high I had absolutely no idea what a little jewel this quote was.  I remember thinking it had everything to do with me not wanting to complete my homework, and this quote was meant to rub it in.  Now I see the incredibly important life lesson behind it.  Here it is:

"Perhaps the most valuable result of all education is the ability to do the thing you have to do when it ought to be done, whether you like it or not." - Thomas Henry Huxley.

I was not exposed to the second part of this quote.  The entire quote by Mr. Huxley goes like this:

Perhaps the most valuable result of all education is the ability to do the thing you have to do when it ought to be done, whether you like it or not.  It is the first lesson that ought to be learned and however early a man's training begins, it is probably the last lesson that he learns thoroughly.

Indeed.  The last lesson that he learns thoroughly.  And in my case, must learn repeatedly.

Ellie survived her round of compounded keflex, but her skin still struggles.  We have transitioned her back to cloth diapers and the laundry has begun to pile up.  I have no idea if we will see a significant change in her skin after this, but I can be comfortable knowing I am not giving her a staph infection (or cancer).  And I also do not find it coincidental that in conjunction with the anti-biotic, her pee amounts have decreased significantly (what was in her bladder?) and she has begun to sleep for longer stretches for the first time. 

Only God's grace would allow that.  In the end I may get more sleep!

Her First Antibiotics

We were making fantastic progress with Ellie on the bone broths and meats. Thanks to the many blessings of others we have been able to provide her with just about every bone broth imaginable. Each animal has a different diet and provides different nutrients. We often think of this when eating the staples fish, beef, or chicken. We don't often think of the other meats as offering even more.

Once she had been on the bone broth and boiled, pureed meats for a couple of weeks we began the process of introducing vegetables. We used the GAPS introduction diet as our guide. We started with de-seeded, skinned, boiled green zucchini. Removing the seeds and skin helped take out any fibrous parts that would irritate and inflame her healing intestines.

We then moved on to onion. She didn't seem to do great, but we moved forward. I added in carrot, and threw in a little garlic. I could have added them in too quickly. The onion could have been too fibrous. The carrot could have been too sweet. The garlic too starchy. Or perhaps I just got to excited at the idea of her eating food. Whatever it was, we had our first 'fail' since the start of broths. And it seemed to hinge largely around the carrot.

At this point I realized things were different. It as not a typical, confusing, and extreme FPIES reaction like we had seen in the past. And I began to understand that what I was seeing was an intolerance - the inability for her body to handle a particular food. And the differences between FPIES, intolerances, and allergies began to make sense.

I removed the garlic and carrot, but she did not heal. I removed the onion and still no improvement. With just zucchini we began to see respiratory symptoms. Back on just the broth and meat. And a low grade fever.

Off to the pediatrician we went. Diagnosis: sinus infection and ear infection from reflux. Treatment: Her first ever round of antibiotics. 10 days of compounded amoxicillian (sp?). A slight increase in her probiotic. And a surprise. No typical antibiotic diarrhea. Or constipation. Or problems. Instead we saw a white tongue, return of full body eczema, and an otherwise very happy toddler.

Interesting. Antibiotic therapy is used to treat colitis and intestinal disorders....sometimes.

The white tongue and eczema was fungus overgrowth. Compounded powder nystatin was added to her mix.

And she got better. Zucchini back in, and moving forward again.

Ellie Had a Little Lamb!

While cleaning the freezer I was excited to find a few jars of beef broth that looked unbroken. This was great news since we were out of lamb and fish. I very carefully removed three unbroken mason jars of beef broth from my garage freezer, and being careful not to bump them on anything, I placed them in our bathtub to thaw. I was able to save them, so I did not have to make beef broth again right away. My mom was kind enough to make the fish broth for me the first time, and offered to make it again, which helped restock my broths. All I had to remake immediately was the lamb.

I was worried I would over do the beef broth if I did not rotate them enough, so we put her back onto formula and almond milk for two days. In an effort to get caught up.....here is a quick synopsis:

Adding the formula back in confirmed that it has been causing symptoms for Elianna. Her reflux and upper respiratory symptoms returned quickly, and I am now convinced that the corn based formula has caused her body to be in a state of inflammation for her entire little life.

The almond milk has not sustained her, and was causing her to be malnourished. This was a horrible recommendation by the doctors, who in their defense, have nothing other than trial and error to guide them. She needs the calories and additional nutrients that the formula provides while we transition her off and onto the GAPs introduction diet (with modifications).

We went one more round of broths: one day beef, one day lamb, one day fish. The results were fantastic! NO signs of reaction or symptoms. We eliminated the almond milk from her bottle entirely, and today we took a BIG STEP!

I made the lamb bone broth, and then pureed up the meat, bone marrow, fat, and other parts we have come to know as 'icky'. I poured the broth into small mason jars, and then added 2 rounded tablespoons of the lamb meat puree to each jar. Once shook up, it completely dissolved into the broth, making it possible to feed her in her bottle. And today that is what she ate! Correction: she CHOWED!

I was really worried that she would be turned off by the texture and that I would not be able to get it liquefied enough with my regular-joe-blender, but she did not seem to mind, and I think she even liked it! Let's hope the other meats blend up that easily.

To complicate matters and make the guessing game more fun (sarcasm there), she contracted a virus this week, and two nights ago her fever reached 104. Thankfully we have some corn-free compounded acetaminophen and ibuprofen in our cupboards, which brought it down to 100. After two late nights battling fever, the lamb broth with puree and some added formula was her drug of choice today. I feared that the amount she ingested would increase her chance for reaction and we would be in horrible shape by tonight. She drank almost 60 ounces of broth just during the day today, with a nap from 11:30 to 3:45! I was so afraid she would wake up screaming or that it was the start of a reaction, but when she woke up she looked better than she has looked, well...ever! With the bottles and the puree we let her paw at in her highchair at dinner, she ate about 4 teaspoons of lamb puree today.

MY FPIES BABY IS EATING MEAT!

Life Continues: A Jump to the Present

From September until now, life has continued to push forward. Elianna has successfully passed and can eat these foods now: apricots, peaches, plums, cherries, and nectarines. She has had small 'licks' of blueberries and grapes, but not enough to call them a pass. I spent the last few months canning, freezing, drying, pureeing, fruit leathering, and whatever kind of preserving I could think of while the pit fruits were still in season. All I kept thinking about was what were we going to do when they were out of season and I had nothing to feed her? Thankfully I grew up in Northern California and had access to fruit straight from the orchard. Family friends have blessed us tremendously with cases of fruit 'to feed that baby'. Not all organic, but not processed or coated with anything in any way. Best of all, the fruit helped solve the problem with constipation.

In the meantime she ate a crayon and had a reaction. Safe, non-toxic crayons have soy.

She began eating large amounts of hair, fuzzies and string. We are now watching and wondering if it is PICA.

We finally head back to the allergist for atopy patch testing. (More on that in another post)

Her eczema has become full body. Some days she just has reflux and stomach pain and we cant figure out why. And she has had lots of diaper rash problems that are getting worse.

We realized that over the counter tylenol and motrin make her vomit and we need compounded medications for her. And I have begun the search for a safe probiotic for her.

She sucked on the adhesive on a cardboard box and had a mild reaction.

I have had to cut back at work in order to provide a predictable schedule for her, and have her home where we can practice eating. It's hard to give a toddler a tray full of puree to explore when not at home. It's hard to take her to someone's house and say 'do you mind if I vacuum your floor?' And it's hard to work full time while learning to be a suburban pioneer woman because your child can have nothing from the store.

Meanwhile the medical bills are rolling in and copayments continue. Now the GI wants us to send her to speech and occupational therapy for food therapy.

And I am thankful. Thankful that she has never been below the 90th percentile. Thankful that we now have 5 safe foods. Thankful that she is growing, less puffy, and turning into quite the little toddler full of personality. She never stops talking (we think she is fluent in Chinese). And her laughter is contagious.

We are making the necessary adjustments in our family, and working hard to accept the changes. They are not easy, and some days are definitely harder than others. But we have hope.

Info for the FPIES- Ibuprofen for Your L.O.

Interesting info I discovered today: pharmacist at the local compounding pharmacy said it is possible to mix Ibuprofen into a topical gel for those not able to take it orally. This would include some items such as corn, which Ellie can't do, but could be an option for others.