Ido's Story

[Galit's letter is presented to the champions of breastfeeding, so that we fortify our understanding of the ramifications of our work on the life of the patients and their families over time. Please try to imagine what these children and their parents could have gone through in the coming years had we not been fortunate enough to help them. Dr. Furer]

Hello to all,

I would like to share my personal story with you, with the hope that maybe it will help someone and I'd be very happy if you circulate it among as many parents/doctors as possible or to whomever you see fit …

My Ido is fourteen months old.

On the day Ido was born the doctors called me and explained to me that my baby has a "tied tongue"..

I didn't really understand and asked them what it meant, and they explained to me that it might cause problems with breastfeeding and maybe problems with the sounds sh and s, which can easily be solved by a speech therapist.

I nursed Ido for five months. I then began giving him ground food, followed by solids. The child ate well and exhibited no special problems.

From the age of six months, Ido began losing weight, he nursed less, and at 7 months I had no milk left.

He began to breathe solely through his mouth (which was open most of the time) and his tongue stuck out.

Starting at seven months old, he began to constantly contract ear infections and to lose his appetite (which is normal for a sick child). At the recommendation of our physician, we gave him the Prevenar vaccine, which brought down the infections- but his appetite did not return, and he preferred drinking from a bottle, mostly milk, to eating solids…

The antibiotics that he took no longer had an effect on him and he had to be given stronger antibiotics through vaccines, and this hurt his liver and kidney functions, among other things, and greatly weakened him.

In the meantime, Ido continued losing weight (from the 75^th percentile he went down to the 25^th and then to 10^th and then to 1). He was constantly sick, and too tired to eat, he received antibiotics…got well for a week.. ate (only ground food – the minute he hit a lump of anything, he would spit it out and wouldn't continue, and milk) and then it happened all over again. I couldn't feed him sitting down since his mouth was open (the more he grew – the worse it got), and if I fed him with a spoon, all the food spilled out, and I wasn't even able to insert a spoon because there was no room for it in his mouth, and so I had to feed him slightly lying down and with liquid food…

His immune system weakened – and he tended to catch all types of viruses my daughter brought in from kindergarten (he was with me at home). Every time he caught something, it would last for several days in which he would not eat anything, and the doctor explained to us that it takes him longer to recuperate because he is so weak…(on those days he was hardly awake, he slept hours upon hours, day and night)…It got to the stage that Ido was awake for two to three hours a day and even that, not always. On the days in which he did not sleep that much, he would whine and cry endlessly, and it was impossible to calm him down. He was agitated, not calm, very dependent, very skinny and his development also suffered as a result…

He underwent many blood tests that showed that he contracted CMV (Cytomegalovirus) and he was extremely weak, gaunt and pale (there were even moments when we feared we might lose the child… and we prayed to get through it).

The doctors were concerned that it might be celiac, they told me that he should undergo ear tube surgery… and on the way "it's advisable to remove the tonsils"… They sent me to sleep labs (where they weren't able to test everything and wanted us to come again), they checked for blood diseases etc.

One time, Ido contracted throat infection and we took him to the emergency room fearing dehydration. We were greeted very nicely at the emergency room, where concern was expressed over the fact that he had not gained any weight in four months and in the last month he had even lost weight.. (they were less concerned about the problem for which we came)… We were there for 5 days and they didn't come up with anything. A different professor came in every time and tried to guess the nature of the problem. They finally `decided' that the child has "eating problems" and referred us to a dietician, a speech therapist, follow up etc..

In the eating-disorder clinics they claimed that it was for psychological reasons that the child could not swallow…

At the same time we also began homeopathic treatment. The homeopath obviously said that there was no need for an ear tube surgery. He gave us some powder… and told us that we need to give him "richer" foods so that he would gain weight, but the child could not even swallow hot cereal.

And then, one day when I went to pick up my oldest daughter from kindergarten… one of the mothers who heard me talking about Ido's problems approached me and gently asked if I'd ever been told that he has tongue-tie… I told her that I had, but that the most that tongue-tie could cause was in nursing and there was no problem in that, and so I hadn't thought about it. She then told me that tongue-tie can cause many more problems and gave me Dr. Roee Furer's phone number in Jerusalem (02-6236319, 0547-424400). At the same time, I conducted an extensive search in the internet, and discovered articles about the problems that can be caused by tongue-tie, and apparently nursing is just one of them… (and if you ask me, it's not the main one either)… speech problems is also a minor issue which can be fixed… Apparently, tongue-tie harms the breathing tract, the tonsils; it causes sleep disorders, eating disorders, problems with oral hygiene, the entire teeth structure.. ears, nasal discharge etc.. etc…

(If interested in Dr. Furer's article go to http://roeefurer.blogspot.com)

I called him, and he already saw me that next day and tried to calm me down… what upset me was that everyone at the clinic were babies, several days to several weeks old… they still didn't care who held them…

The little ones came out crying and were immediately calmed after a few minutes of breastfeeding (mothers arrive after having been sent there by lactation consultants, who, apparently, are very familiar with this issue, while other physicians – including ENT specialists - are unfamiliar with it and do not accept it).

Ido had to be sedated because of his age, and he went in hysterical, only because the doctor took him from me. It ate at my heart that he had to go through this, at this age.

I must note that the clipping took exactly one minute. Afterwards, they called me in and the minute I picked up Ido, he calmed down.

As for today – merely two weeks after the clipping… the child is eating…for the first time he is able to eat food which is not ground up.. his tongue is no longer sticking out… his breathing has improved miraculously! (although it's not fully regular. So I will take him for a check up, in case he has to have some more clipped.. sometimes two cuts are required.)

The child is calm, he plays, he laughs and most importantly – he has already gained 300 grams... he no longer has a runny nose, which was an inseparable part of him…

I am telling this story in order to make people aware of this issue..

This year was extremely difficult for us…every week we saw all kinds of doctors who thought that I was just a hysterical, impatient mother. Only when he stopped gaining weight did they start taking me a little more seriously.

The doctors claim that despite everything, he will need a tonsillectomy since for an entire year he breathed through his mouth, which "agitated" his tonsils, and caused recurrent infections – Dr. Furer teaches that a free tongue scrubs the tonsils in every swallow, and the germs can no longer settle on them. He also told me, without examining me – only from hearing me talk, that I too have a tied tongue …and slowly I realized that I also had many problems with my ears when I was little, and I had an operation… and since the age of three, I'm a regular at dentists and, later on, at an orthodontist's…

Apparently, the tongue is an inseparable part of the ear-nose-throat medical profession, and it would have been only right, had at least one of the doctors I had seen, would have noticed! (I met at least 5 E.N.T. doctors!☺). The day after the clipping, I went into a forum for child surgery to find out more about the connection between tongue-tie and ENT problems, and this is the answer I received from a professor, whose name I'm withholding. Listen to this! "Tongue-tie has merely cosmetic significance, except for a possible interference with nursing, and this has not been proven fully, either. Beyond that, there is no connection between the partition in the tongue and other complaints and certainly not ear infections…"

It is unfortunate that tongue-tie is defined as a problem related only to breastfeeding, while it might cause additional and more severe problems. There are various levels of tongue-tie. It is important to remember that tongue-tie can cause a problem in nursing for one person, and none for the other, and there may be future speech problems, and maybe not. The same applies to the other issues I mentioned. The picture is complex and requires examination, but somehow, it is all tied together.

And another amazing story –

I have a daughter who is a bit older, she is two years old, and I was unable to nurse her and she tended to spit up a lot. I gave up after a month. In her case, no one said anything to me at the hospital. Today when she is two years old she hardly eats anything, except for puddings, cottage cheese and other cheeses, soups (only the liquid and not any vegetable)…Up to now I thought that it had something to do with being spoiled. And, later on, after talking to Ido's doctors, I began to think she had serious eating problems. This week – after Ido's miracle, I looked at her tongue – and discovered that it was also tied! (This phenomenon is hereditary, and usually when one child has it, the other may, as well), and I feel so guilty about my daughter not having eaten for several days and me thinking that she was being spoiled … She wakes up hungry at night very often, and the only thing she can eat is liquid yogurt..

Next week we'll go to get her tongue clipped as well. I'm scared to death, but know that it will help her eating, for a start, and in the future with other problems.

This came out a little long… (and I really did try to make it short and not go into details about all the agony we experienced in the course of the year)… If possible, pass this story on to as many people as possible – and if anyone has any questions, I'll be happy to answer them and share my experience.

And a gigantic thank you to Meital, Tahel's mother – who pointed me in the right direction…as far as I'm concerned, she saved my little one…

Pessach, 5768 Galit.

[Postscript – Ido returned to the clinic to have a second clipping. He was chewing a roll, smiling and active, without the congestion, redness, snorting and weakness which were apparent two weeks earlier. His sister also had her tongue clipped – and within two hours they `attacked' a crust of bread for their pleasure! One month after the treatment, Ido is eating schnitzel without help from a psychologist…his weight is gradually increasing. Dr. Furer May 20, 2008]