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.