It Took All of TWO Minutes!

LittleM has had extreme feeding (specifically swallowing difficulties)for her entire life. She has seen more than her fair share of medical providers for various reasons, and SPECIFICALLY fo rher feeding issues. She has been unable to eat properly which in part has led her to be diagnosed as Failure to Thrive for 3 years.

Provider after provider – we have been told that there was no diagnosable reason for her difficulties. Then one day, after some research on LittleM’s behalf, Kelly Rice of Sovia Therapy (our occupational therapist) came up with an idea. Could LittleM have a posterior (hidden)tongue tie? We researched this and thought it made sense. Then the diagnostic battle began. It was at this time, with this diagnosis in mind, that we took her to the ENT and Oral Surgeons. They both said, “NO tongue tie.” They were sure, adamant, but my gut said they were wrong.

Later we traveled over 2 hours to see a pediatrician. She had no additional degree or training, but an interest in tongue tie. Dr. Penny Soppas is considered to be an expert, but with her gentle nature and humility, she did not want to take on that label. Though she could not definitively diagnose LittleM’s tongue as tied, she clearly recognized the abnormal range of motion and suspected “hidden” tongue tie. After consulting the International Affiliation of Tongue Tie Professionals (of which she is a member) with LittleM’s history including photos and videos Dr. Soppas was certain that LittleM indeed had a posterior tongue tie.

Dr. Soppas told us that there was a pediatric dentist in Albany, NewYork, and that he was the ONLY one she would recommend for this severe and unusual tie. We opted to try a form official therapy before going for the surgery. This therapy given by Kelly Rice of Sovia Therapy, did a great deal for LittleM’s ability. It was really a game changer. The tongue tie was released to a noticeable degree and LittleM’s ability to swallow improved. But it wasn’t enough. After LittleM aged out of Early Intervention we had to make a decision. Would be keep going hoping more therapy would completely release her tie or get the surgery. I prayed and prayed about this and finally felt that the answer was clear.

Yesterday we woke up at 4:00am. We were on the road by 5:30 and arrived in Albany, NY at the office of Dr. Kotlow at around 11:30 in the morning. The evaluation to diagnose LittleM’s posterior tongue tie, maxillary lip tie, and abnormal jaw positioning took all of 2 minutes. With a little silver measuring tool for the tongue, a light, and the eyes of probably THE leading expert in this area, it was all confirmed.

At 1:30pm yesterday, Dr. Kotlow took LittleM to the room with the dental laser. About 15 minutes later he returned with a less than hysterical, but sobbing little girl who just kept repeating, “You were so scared, you were so scared.”

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Laser incision of the Maxillary Lip Tie

Note the space between the 2 front teeth. This is an obvious sign of lip tie.

Laser Incision of the Posterior (Hidden) Tongue Tie

Not how NOT hidden this incision is...hmmmm....strange it is SO difficult to find!

Though she was clearly traumatized by the event she was not in a lot of pain and it was DONE! By 3:30pm we were back on the road. We stopped to give the kids dinner around6:00pm and LittleM was in some pain. Trying to eat made it much worse. “When you get your lip-tie fixed, that makes your carrots hurt your liptie,” she kept saying. After giving her a little benzocane to numb the area, LittleM proceeded to eat an entire meal WITHOUT a water wash. She used puree to wash her food down, but she could never even do THAT before. This was new and clearly improved!

We arrived home with 2 sleeping children last night at 11:00pm. Within less than 24 hours this 3 year old problem was corrected. This is not the end of the road to fix the damage done. LittleM will have a short recovery from the surgery. It is important to make sure that the tissue doesn’t reattach as it heals. Then we will have to begin helping her to re-learn all of the adaptations that she taught herself in order to swallow. The habit of swallowing with a “water wash”will have to be broken. She will have to build enough strength in her tongue and neck to swallow correctly. Even with this work ahead, I feel confident that this is a pivotal moment for LittleM. I think she proved that at dinner last night!

3 Years of Intensive Medical Involvement

All but 4 of these professionals were seen or consulted with SPECIFICALLY for LittleM’s feeding issues. Some of them were only seen for a one time consult but most of them were long term providers.

THESE GUYS TOTALLY MISSED IT –Some of them really should have known.

1 Pediatric Maxillofacial Surgeon

1 Pediatric ENT Surgeon

2 Gastroenterologists

3 Pediatric Allergists

1 Chiropractor

1 Neurological Chiropractor

1 Nutritionist

1 Physical Therapist

2 Occupational Therapists for Feeding

4 Pediatricians (from 2 Practices)

1 Family Medicine Doctor

1 Pediatric Endocrinologist

2 Evaluations by speech therapists

THESE FOLKS GOT IT RIGHT

1 (of the 3) Occupational Therapist for Feeding

1 Pediatrician with an interest in tongue tie

1 Pediatric Dentist

LITTLEM’s SYMPTOMS

Infant Feeding Difficulties

Lost too much weight in hospital as newborn due to inadequate feeding

Unable to Latch on Properly

SUPER Long Feeding Times (ALWAYS over an hour for 4 ounces)

Syringe Feeding

Inability to use a bottle (tried more than 10 bottles before finding one that was workable)

Gagging

Reflux

Vomiting

Drooling while feeding

Motor Planning Difficulties with Feeding ONLY – unorganized suck swallow breath pattern

Abnormal range of motion for tongue(unnoticed)

Failure to Thrive

Older Baby Feeding Difficulties

Long Feeding Times

Motor Planning Difficulties (Self-adapted so not as bad now)

Reflux

Gagging

Difficulty taking a spoon

Abnormal swallow pattern of purees(V-Shaped swallow)

Inability to swallow anything other than Stage 1 purees (even thicker purees refused)

Complete lack of ability to swallow solids of any kind

Abnormal range of motion for tongue (beginning to be noticeable)

Failure to Thrive

Toddler Feeding Difficulties

Inability to swallow solids without a significant “water wash”

Inability to swallow some solids even with a “water wash”

Abnormal swallow pattern of solids and purees (V-Shaped swallow)

Very extended meal times

Inability to take adequate calories through eating

Bottle Feeding in order to take adequate calories

Some speech problems – despite above average communication skills

Gagging

Motor Planning Difficulties (Completely Self-adapted)

Abnormal range of motion for tongue (completely noticeable)

Failure to Thrive (until recently)

You Can't Stay Here Mold!

What a month…I feel like that is all I have the energy to say, but there is so much more to be said! If I had to sum it up in one sentence I would say: we found out we have mold (and have confirmed that it is a part of the problem), but I have peace that it is all going to be ok.

It all started when we noticed that the dingy grey discoloration that we had noticed on LittleR’s closet ceiling was spreading. We sent a sample to Mold Labs and sure enough – it was mold. Though a bit disconcerting we didn’t worry too much. We did wonder if this explained why LittleR would always wake up with a “snuffy nose” or if it was part of the reason for all the respiratory distress. We moved LittleR ‘s bed into LittleM’s room and put the kid’s toys in his room. I figured that short exposure to the room during the day would be ok. Wrong.

I had told our immunotherapy tech. what was going on for the purpose of explaining why we had to delay further treatments (you cannot have low dose immunotherapy unless you can ensure that your environment is free of allergens). Two days later I got a call from our now retired physician. His first question really got my attention; “Can you move out?” Ummmmm……No. Realizing that this was so serious that our environmental medicine specialist doc who is retired (he now works one week per month) who we were scheduled to see during his next work week on May 11^th called me from “vacation” on April 13^th AND ASKED US TO MOVE OUT OF OUR HOME – this really freaked me out.

He told me what to do since we could not move out. I followed his instructions, but still started freaking out inside. We were to seal off the problem rooms entirely, get a GOOD HEPA air purifier and run it in the kid’s bedroom 24/7, support the kid’s immune and respiratory systems with stinging nettle, and FIX THE MOLD. This doctor who isn’t the biggest fan of medications and knows that I am not either told me that if the stinging nettle and homeopathic allergy supplement that we had already started didn’t work we would HAVE to put them on Cingulair in order to prevent a reactive airway cycle like the one we couldn’t seem to get out of all winter.

We started exploring the house to see what was going on with the mold. It didn’t take long to realize that the attack is FULL of it. With all of the exploration we must have stirred up a significant amount of mold, because the kids and I all got sick. I could feel it in my throat and lungs. They started coughing and I just knew we were in for a vicious cycle of respiratory illness. This was bad.

Then I heard from the Lord “loud and clear” in my heart that we were doing what he wanted us to by following the instructions of the doctor. The very day that Doc called me I was looking for a new doctor since he has retired. I was praying – well more like yelling – in my head. Just as I asked, “Who is our new doctor God?” The phone rang and it was Doc about the mold. This was one of many confirmations that we were to follow his instructions. God impressed upon me that discovering this mold was a blessing. This was an opportunity for us to eradicate at least a part of what has been making the twins so sick. The fact that disturbing the mold made them sick was also a blessing. This too confirmed that the mold has in fact been making them sick. One thing that the Lord spoke to me in such a gentle and gracious way is that He would take care of them during this time of waiting (as we gather quotes and wait for the work to be completed). He was been so faithful. The kids came out of the illness amazingly – no reactive airway CYCLE. The mold is still here but with the interventions that the doctor prescribed, the children are well.

Though it took me about 24 hours to get past my panic, I am confident that this is a good thing. I am confident that this is Divine Providence and I declare that because I have made the Lord my refuge, and the Most High my dwelling place, no evil shall befall me, nor any plague or calamity come near my home. You can’t stay here mold. Ha!

I also declare that the effects of the mold – as well as the kid’s immune system dysfunction, and all the other aspects of their illness, have already been defeated and will be overcome by the blood of the Lamb and the word of our testimony. And I declare that LittleR and LittleM’s testimony is this: Jesus was wounded for their wrong-doing, Jesus was bruised for their sin; the punishment of their peace upon Jesus, and by HIS stripes LittleM and LittleR are healed.

Voices in Your Head

Jesus said that his sheep know his voice.

Prior to the last year or so I knew this to be true but I had never realized just how tangible his voice is. I grew up in a denominational experience that (at least in my perspective) nurtured the idea that God speaks only through a “still small voice” or the “peace of God.” It wasn’t until I came to my adult years that I truly encountered the person of Jesus Christ in my life. This was driven by many personal experiences, but precipitated by my reaching the absolute end of myself. In that place – at the edge of the pit – I knew that there were only two options. As I called out to the Lord, I knew that he would either answer me or I would plummet into that pit to the end of my existence. Even then, when I barely knew His voice, He answered me loudly – and immediately. That was a number of years ago, and it marked the start of my journey with Jesus. Prior to that event I just didn’t realize that I could truly hear His voice.

Since that first experience with the Lord, I have heard him many times, but still His voice has not been all that clear most of the time. How is it that “his sheep know his voice,” but we have such a difficult time figuring out what he is saying? I have realized more recently that there is just so much going on inside of my head that I often have a difficult time discerning who is saying what.

Have you ever considered just how vast your own inner dialogue is? A recent study reports that the average person speaks 16,000 words per day. With this in mind I cannot even imagine how many words we think. Recently I have been working through a healing prayer ministry. The idea is to allow the Holy Spirit to heal inner hurts caused by events and/or people of your past. Through the educational piece of this ministry, I have been learning a lot about this inner dialogue and where it comes from. There are so many factors creating a whole lot of noise.

Consider the following “voices” in your own head:

Your own Voice… not so simple when you realize that your own thoughts are based on truths, untruths, things others have said to you, things others have done to you, things you have learned and witnessed, things you have believed…this list can go on and on. Yes, we are talking about your own thoughts, but they are based on SO many factors and each of those things is also filtered through the difficult thing called perception. This complicated matters even more.

The Voice of Others… we are all tasked with weeding through the influence of others words and actions on our own lives. There is a song I love by a band called Sleeping at Last. It sums this all up for me stating, “We are made of love and all the beauty stemming from it, we are made of love and all the fractures caused by the lack of it.”

The voice of the Enemy… here we go, right? I don’t believe in some enigmatic force of evil that simply exists in the universe. No, I believe that there is a “person” – an Enemy – that is evil, and that this Enemy works to further separate all of human kind from our Lord and Creator. I do not think for a moment that just because I am covered by the blood of Jesus that the Enemy (or his minions) do not “whisper” into my ear as much as they are allowed to (consider Job). I believe that the dominion of the Enemy is at least a factor in the foundation of each of our belief systems, and that this begins long before any of us comes to faith in the Lord (consider our inherent sin nature). And don’t think I believe we can’t overcome this one – I believe that though we rejoice that are names are “written in heaven” we have “authority…to overcome all the power of the enemy.” (But we have to recognize the need and exercise the authority!)

His Voice…this is the whole point of the thought right? How do “his sheep know his voice?” It is not as if the Lord is speaking to us in an audible voice (not saying he won’t, but it is not commonplace). This is an inner communication through the power of the Holy Spirit.

So where am I going with this? I have come to realize that there is just so much noise in my own head. I believe Jesus when he says that I know his voice. I am one of his sheep after all. What I have come to realize though is that this is a matter of discipline. This is truly a matter of holding every thought captive to Christ. The only way I can know for sure if something I think is from God (or at least in line with the truth or His will) is to hold it up to the light –God himself. I have become better at hearing His voice, but have also come to realize that when He speaks to me about something that I agree with I hear His voice and KNOW it is him. Then there are those times when I hear Him, but I am not real thrilled with what I hear him saying and then I wonder, “Is that God or is that me?”

This is especially difficult when I am trying to listen to Him regarding the kids’ health and treatment. It is even more complicated when things are not going well in this area and when there are times of waiting and times of silence. Still, I trust in His word. I trust that I will seek him and he will be found by me.

Jeremiah 29:12-13

Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

Hebrews 11:6

And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.

James 1:5-6

If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.

I have a really cool story to share concerning this concept, but I have no more time to write today. Next time I write I will share how listening to his voice multiplied $230 into $580 and provided some much needed peace about the latest “unknown” for the kids’ condition!

Hunker Down...A Long Road

God is good (as we say in my circle of girl friends) all the time.

The last 5 months have been pretty difficult ones. As I reported previously, the twins spent most of November, December, and January plagued by infection after infection. It was only recently that I realized that we had become pretty lax in making sure that we were truly following the healing protocol and giving enough time at each new step.

Today we had our third appointment with our new doc. Dr. Chris is actually a neurological chiropractor who we began consulting in order to rule out any subclinical or subtle neurological explanation for why LittleM cannot swallow. Even after releasing her posterior tongue-tie (which was very severe) this kid still cannot swallow without washing her food down with a large gulp of water. Just image how full she gets this way – on water – not food. It is definitely a problem. It is this reason that she still has to drink most of her nutrition.

Dr. Chris is literally the first person I have found who can truly carry a conversation about FPIES in relation to the immune system in relation to the respiratory involvement, in relation to the neurological involvement… This doctor has been dealing with this issue on a daily basis from a holistic approach long before he met us. This is SO refreshing!

Here is the plan:

Blood Work

Dr. Chris is ordering a number of tests. He is looking at things that have not been looked at like thyroid function, ANA, C-Reactive Protein, Cortisol, and other things as well. Most reassuring is that he is listening to EVERYTHING I am telling me, assuming that I am telling the truth and trying to determine how it all fits together.

We have always said, “These things are a piece of the puzzle, and our doctors don’t even admit that there IS a puzzle.” It is pretty shocking that we have found this kind of medical collaboration with a chiropractor, but hey, I’ll take it!

Diet

Dr. Chris wants us to further restrict the diet until there is significant healing. He is thinking that we may see enough healing in a matter of months to THINK about starting food trials again. As of now, we are not to introduce any new foods (except avocado).

We are adding a supplement that is designed to heal the gut lining. For the first 2 weeks we are to remove all other supplements including probiotics (Dr. Chris explains that the probiotics can be leaking from the damaged gut lining and antibodies may be produced to those as well).

Consultation

Dr. Chris is very humble. He repeatedly tells me that he doesn’t know everything and points out things that are “his opinion.” Today he actually told me that he is not 100% sure of what we SHOULD do, but he is extremely confident of what we SHOULD NOT do.

To that end he informed me that there may come a time when we want to consult with an immunologist that he works with in North Carolina. This man doesn’t see patients. He consults with doctors. He would take the history and labs and then actually do research. He is over $300 per hour! It may or may not come to it, but WOW this is something new!

Lip Tie

Dr. Chris advised us that while trying facial release therapy may be in order to treat LittleM’s newly discovered lip tie, he doesn’t recommend that we give it very long. He feels that it is imperative to get this resolved as soon as possible. After trying to simulate the effect of a major lip-tie in my own mouth and then trying to chew and swallow, I am inclined to schedule the surgery as soon as we can.

LittleR also has multiple lip ties off to the side of his mouth on both sides, but I am not sure if this is restricting his ability or not. I am assuming (simply by the fact that it takes him so long to eat) that it is.

Hunker Down

The main message that Dr. Chris conveyed to me is that we are only in the infantile stages of “attacking” this condition. He warned me that this was going to be a long road, and that there were many issues going on right now that we can’t even THINK about addressing because with the immune system in the state it is in, these issues would not remain resolved.

My favorite thing that he said (only since I KNOW it to be true and people think I am over-reacting), is that the twins have NEVER been “immune-neutral” in their lives.

Muscle Testing: "This isn't working."

It has come to my remembrance that I once mentioned muscle testing in a post some time ago. We had heard about it from our doctor’s office and knew nothing about it – just that it was supposed to be a way to determine (better stated, discern) what foods the twins may or may not react to. Muscle testing, we were told, would be a good indicator of what NOT to try. We were told that if a food “failed” we should consider that food unsafe, but if it passed, we should consider it a “maybe.” We were not told much about how it would work, but that it would be the body leading the whole thing. At the time we didn’t think much about it. We had absolutely NOTHING to go on, and so we figured it would be worth a try…either it would work or not – nothing gained nothing lost.

We went to see a chiropractor who was said to be good at the muscle testing. He was younger and nice enough, but a bit rushed with us. Nevertheless, we were absolutely AMAZED at the results. Shawn would hold each child on his lap with a given food placed next to the chest of the child. Then he would raise his arm up and outstretched and hold firm as Dr. M tried to push the arm down. If the arm stayed up this was a “strong” sign and the food was a pass. If the arm went down this was a weak sign and it was a fail. As I mentioned we were AMAZED with the results. Each child passed and failed a number of foods. LittleR failed more than LittleM; this made sense to us. I was so glad that Shawn was the one who was the “surrogate” since I knew he would be skeptical if he had not actually felt what had happened. No kidding, on the failed foods his arm would simply give way – there was nothing he could do about it, and on the passed foods his arm would NOT go down. There was truly something to this.

We took our list and went home ready to use it as a guideline of what to try next and what to stay away from.

Fast Forward

At one point the same woman at the doctor’s office recommended that I go and have some muscle testing done to help determine what was going on in my body that doctor’s couldn’t answer. I made an appointment with the same chiropractor and had the opportunity to experience the phenomenon for myself. I too was AMAZED at the results of the testing and even more AMAZED at what happened when Dr. M. attempted to use the same practice to determine my course of treatment.

Dr. M. tested multiple points on my body that would “tell him” which parts or systems of my body were not working properly. I help my arm up as he tested different things. My arm was very strong for the most part. I was a little weak when he “tested” my digestive system, but when he got to my thyroid my arm FLEW DOWN to my side. I had been tested for thyroid dysfunction a number of times and had even had more specific testing done to determine that the thyroid looked “good enough,” but I had always suspected that there was perhaps a sub-clinical issue with it. This was AMAZING. I was shocked at the TRUE reaction my body had.

Now it was time to test the treatment. Dr. M. left the room and returned with a couple of supplements in his hands. He placed them on me and began to test again. To my amazement my arm was weak for one and very strong for another. Dr. M. explained that the strong reaction was the right supplement and then told me that we would test for the correct dosage. I was excited! The next thing out of his mouth gave me a whole lot more information than I was expecting.

He said something about how open I was to this and that was why it was going so well. Then he finished, “now just open your mind.”

“Oh SHIT!” Was the next thing that went through my mind.

Yes, I swore about it in my head. I suddenly KNEW what was going on here. I remember all too well my days of “opening my mind to the universe.” I knew that I was NOT interested in opening my mind to ANY spiritual realm that was not firmly rooted and PLANTED in the GOD of the universe. I IMMEDIATELY began repeating the name of Jesus in my head.

“Jesus, Jesus, Jesus…” I kept going.

I was lying there in complete panic, but calmly calling on the Blood that never fails.

Dr. M. was pushing on my arm - testing. “The correct dose is one pill.” Nothing.

“Two pills.” He pushed again, but my arm didn’t move.

“Three pills.” He was going a bit faster now, but again pushed on my arm.

“Four pills.” He paused then went on, “Five, six, seven, eight…” He quickly ran through the numbers up into the teens, and then simply stated, “This isn’t working.”

OH. MY. WORD. I certainly knew what was blocking this “power” from revealing itself. I wanted out of there. I was conflicted about the results though. Dr. M. just told me to start with 2 pills a day. I purchased the supplement (which I have never been able to bring myself to take), went home, and researched muscle testing (Applied Kinesiology) and the occult. I was shocked (but not so much since the experience I had just had) to learn of its roots in the occult, and I thankfully educated on how the practice didn't fit at all with my faith.

I found the list we had gained from the children’s muscle testing and threw it away.

Ephesians 5:11

Take no part in and have no fellowship with the fruitless deeds and enterprises of darkness, but instead [let your lives be so in contrast as to] expose and reprove and convict them.

Colossians 2:8

See to it that no one carries you off as spoil or makes you yourselves captive by his so-called philosophy and intellectualism and vain deceit (idle fancies and plain nonsense), following human tradition (men's ideas of the material rather than the spiritual world), just crude notions following the rudimentary and elemental teachings of the universe and disregarding [the teachings of] Christ (the Messiah).

http://www.gotquestions.org/kinesiology.html