I am the mother to twin children who HAD FPIES - Food Protein Induced Enterocolitis Syndrome. Their condition prevented them from eating food. They used to survive with Nutramigen AA, a prescription medical formula...that was before we found the GAPS healing diet....and that was before Divine Healing! Today...no foods are off limits! This is the story of God(the Father) working it all out! To Him ALL the glory.
Thursday, May 24, 2012
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.”
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
3 Pediatric Allergists
1 Neurological Chiropractor
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
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)
Inability to use a bottle (tried more than 10 bottles before finding one that was workable)
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)
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
Motor Planning Difficulties (Completely Self-adapted)
Abnormal range of motion for tongue (completely noticeable)