The Second steps to overcoming Oral Aversion: Massaging lips, and front gums

After you have read the post: First steps into overcoming oral aversions: Touching the head, ears, and face, AND you have followed the exercises in the first post for a few days, you are ready for this post.  Please do not skip the steps in the first blog, they are so important to connect your baby or child to your touch and your interactions.  When your child is connected to you emotionally and they feel safe with your touch always, then and only then are you ready to move toward the mouth.

If you start these next few steps and your child shows no interest in your fingers close to their mouth, don't be discouraged.  You may need to show them gently they are safe by backing off to the sides of the mouth but always returning within ten seconds.  You do not want them to continue the behavior that they simply need to show displeasure and they get away from oral stimulation.  Therefore, if they show displeasure (not pain) continue with the exercises for at least three seconds to start.  Then move back to massaging their head or ears, anything they like.  Also, make sure you are talking and interacting through all this for comfort and fun.

Remember, we are the parents, and although there may be very good reasons our children have developed an oral aversion, we need to teach them to cope and develop in that area.  We make our children sit in car seats, do their homework, and take medicine when needed.  As parents we need to make sure we help children develop the skills needed to eat, even if they don't like it.

Step 1

After you do the usual head, ears, and face touching, and you feel the child is engaged and comfortable, softly rub the inside of your pointer finger across your child's lips.  Tell the child what you are doing.  Name the body parts.  Sing songs about the baby's body parts.  For example, you could softly and happily say, "These are your good lips, they are soft and red.  You have nice lips."  If the child is receptive move your finger around their lips, as if your finger is lip gloss you are applying. Do this all while talking and engaging the child.  Move then away from the lips to a familiar place on their head or cheeks.  You may want to do this three to five times before moving on.  You may need to do this for a few days until the child is used to you putting your finger on their lips.  But if you are persistent with calmness and fun, the child will eventually allow you to touch their lips willingly.

Step 2

Only when the child is very comfortable with you massaging and touching their lips, AND the child's lips are naturally open and relaxed with your touch, gently take the soft, inside tip of your finger and briefly touch the wet inside of their lip.  Just do this quickly, then draw back to something comfortable.  Do this at least three times.

Step 3.

Take your pointer finger again and slide your finger gently but quickly into the inside of your child's lips, with your pointer finger pad touching the front gums.  You will need to play with the pressure, but always start softly at first.  Your nails should be clipped so as not to scratch in inside lip.  Feel the top gums first, then the bottom.  Then, and only then, move back to another part of the body.  You may need to stop there for the day, but always go back the next day.  Be persistent with happiness and calmness.

Step 4

After touching the front gums, you can do a circle in a clockwise rotation all around the inside of the lips.  Baby's love this when they are calm and engaged.

Step 5

Take the child's hand and allow them to touch their lips, the inside of their lips, and inside front gums.  You may need to guide them hand over hand, finger over finger, but help them connect their hands to their mouths if they are not doing it yet.  Also, make sure you don't fight them, but be determined to always come back to the mouth.


Please don't hesitate to leave comments, suggestions, or questions.  Good luck, stay calm and persistent.   Next blog will be about putting your baby's fingers and hands inside your own mouth with intent. 

First steps into overcoming oral aversions: Touching the head, ears, and face.

If your child has developed an oral aversion, it is usually because they don't feel safe with food or other items in their mouth.  Their fear can be based in a real safety concerns because the child has aspirated or has pain from reflux. It can also be based on sensory integration issues where there is not a true threat to life but the fear of something unknown and very uncomfortable.  No matter the reason for oral aversion, their fear, pain and sensory problems are real and need to be addressed sooner than later.

Many therapists will tell you not to put food or items in the child's mouth until they "show" they are ready for anything in their mouths.  I disagree.  The more the child gets accustomed to oral stimulation and various sensory stimulation, the more the child will overcome their aversions.

The first way to overcome oral aversions is to use your loving, caring, clean fingers near your child's mouth.  Many children with oral aversions have already had stress from pain and doctors in and around their mouths.  They very well may already have an NG-Tube causing them to feel uncomfortable.  These kids will be nervous and possibly combative.  That is why you need to be calm, patient, and playful while doing these exercises.

This first blog will only focus on the outside of the mouth, but if done daily you will be prepping the child for stimulation inside the mouth. 

1. Rub the baby or child's head softly.

Simply sing and talk to your child while rubbing their head.  Be nurturing and look the child in
the eyes.  Get the child's attention to what you are doing by slowly and patiently relaxing the
child and engaging the child.   Be patient and don't allow the child leave by finding other
engaging  songs to draw the child's attention to you. This works especially with children ages
three and under.

2. Move from the head to the ears.
       
Gently run your fingers over the outer edges of the child's ears.  Talk to the baby about the ears.
Keeps talking engagingly.  Move the child's  own hands to his or her ears to rub them as well
and connect the idea that their hands can make this good feeling on the ears as well. Gently pull
on the bottom of the ears in many different directions.  This will help open up the ears through
the Eustation tubes and allow them to feel sensations run from ears all the way into the back
of the throat, or pharynx.

3.  Touch the jaw and cheeks.
     
After the ears move your fingers softly to the child's jaw.  Massage the back of the jaw in gently
circular motions.  Then run your fingers along the outside of the jaw bone down to the chin.
Keeping the child calm and engaged in your activities through songs are important.  Finally,
without any pressure, run a long finger along the outsides of the cheeks up to the corners of the
mouth.  Continue doing this gently until the child is relaxed and feels the movement.

4. Nose down to corners of mouth.
       
Put your thumb and pointer finger at the bridge of the nose.  Keeping constant contact with th
child's skin, and with a bit more pressure than the other massages, slide the thumb and finger off
the nose to the outsides of the nostrils, then out and around to the corners of the child's mouth.
Do this at least three times.

5.  Jaw to mouth
       
While still keeping the child engaged through soft songs and talk, take your thumb on one side
of the jaw and middle finger to the other side of jaw.  Start on the large chewing muscle on the
jaw, putting a bit of pressure on the jaw.  Then gently but with a little pressure, slide your fingers
forward making the cheeks move forward with your fingers.  Stop at the edges of the mouth. The
lips should be bunched up loosely between your spaced thumb and middle finger.

Do these exercises every day, perhaps even twice a day, until you feel like the child is comfortable and you are ready to move into the mouth.

Next blog will be about moving your fingers into the child's mouth.

Tracheostomy and Feeding: 

The first steps into eating is massage

Most children with trachs have them because there is an underlying problem with breathing.  If you do not have the comfort of normal breathing you can't eat.  (Think about how difficult it is to eat when you have tight nasal congestion, or think how difficult it would be to eat after you just ran a fast sprint.) Therefore, the trach helps give children more comfort and safety breathing, but it does not necessarily allow for normal breathing and swallowing coordination.  In fact, the trach can anchor the natural neck movements and laryngeal movements needed for swallowing.  In some instances a child may require a tracheostomy for their airway lifeline, only to develop dyspahsia.

There are various ways to help strengthen swallowing and loosen the neck muscles to aid in breathing and swallowing.

 1.  Gently massage the neck muscles.

              Tight neck muscles pull the collar bone and rib cage up, making breathing more  labored, but they will also put the chin and larynx down.  We want these trached children to be able to move freely and without pain.  Many parents have told me they are concerned about massaging around the neck because the tracheostomy is there.  It is very important to not compromise the tracheostomy, but don't be afraid of the child's neck muscles. 

2.  Gently massage under the jaw

               With one hand softly supporting the jaw, take your thumb and massage the underside of the jaw.  You will gently press up and out toward the chin.  You want the tongue to move as well inside the mouth with the up and out motion of your thumb.


3.  Loosen the jaw with massage.

                  Start by gently massaging the muscle at the back of the jawbone.  Use circular motions forward and back, then in opposite directions.  When the child's jaw joint is loose enough, you can carefully move the jaw side to to side.  Place your thumb on the muscle in the back of the jaw with soft pressure.  Then with your other hand use the thumb and forefinger at the chin and push ever so carefully to the side.  Repeat on the other side.  


 The most important thing to remember is not to be afraid of touching the neck and trach area.  Those muscles need to be loosened and massaged. 

Feeding Therapy Introduction

 For those of you without tube feed children, you probably don't know why a child would need feeding therapy.  Well, there are truly children in this world who refuse to eat.  I don't mean being a picky eater, or one who struggles to eat vegetables.  I am talking about kids that have had so many physically traumatic medical events, or children with heightened sensory issues, or children who have suffered allergies, GERD, or constant vomiting, that their ability and desire to intake orally is not sufficient enough to survive.  Not only are there medical reason for food refusal, they have developed behavioral issues because of the medical issues.

Many may also wonder why parents and guardians would put forth Herculean efforts in order to get their children to eat orally when the child has a g-tube?  Some parents do decide to not push for oral feeds, and that's their prerogative.  However, there are parents like myself who want to push their children to perform tasks like other children their age.  We want our children to develop normally and meet important developmental milestones. We desire our children to overcome the heavy challenges placed in front of them.  We want our children to sit down with their friends and family and eat, just simply eat.

How do parents and therapists most effectively help a child with a feeding disorder eat?  There are many philosophies about how to best help a child eat.  I think the answer for each family will be based on the severity and medical needs of their children.  However, a family must be careful to follow the philosophies that are based on scientific evidence, not ones that are based on "feel good" ideas.  Always ask a feeding clinic what their success rate is and how that rate was determined.   If there is a high success rate you can feel confident you can find some success there as well.

You will also need to look for clinics that follow a multi disciplinary model. You need a pediatrician or GI doctor following closely with the feeding.  You will need Occupational Therapist and a Speech Language Pathologist as they help build the muscles and swallowing skills needed to eat orally.  You will need a nutritionist to follow your child's weight gain. You will need a behavior therapist to modify behavior that prevents your child from eating.  Even if you do not have a clinic that has all the disciplines together in one place, you will want to find doctors and therapists that will coordinate with each other.  As the parent you may need to be the one that coordinates the professionals and make sure they are all working together for your child.

You will find many clinics that focus on making the child feel good in the meal, and making a meal a happy time.  This may be a good place to start getting the child with eating disorders to be able to touch the food and become desensitized to the different textures of food.  In some instances this therapy can help kids who do not have severe feeding disorders.  However,  for most severe children it does not help them change their behaviors when it come to eating enough to support themselves.  For this advanced therapy behavior modification with strict protocols prescribed by a BCBA (Board Certified Behavior Analyst) is needed.   Behavior analysts observe and record behavior,  then they use solid data which indicates what works to reinforce or change behavior. These behaviorists are the real magic makers.  They tie all the therapy and medical needs into real behavior changes.

Watch out for therapies that want the child to only touch the food, kiss the food then throw away, or to chew the food and spit.  You must be very careful not to increase the child's inappropriate behavior toward food.  This may seem like an good way to get the child to eat, but any therapy that allows the child to "escape" from actually swallowing the food will ultimately lead to that behavior being reinforced.  That is why you really need to find a clinic or behaviorist that understands how critical it is to work on intake, not just food exposure.

Infant vomiting.....What is normal?

When babies are born almost all of them have "spit up."  You carry around your burp cloth and make sure your visitors have the cloth when they hold the baby.  It's embarrassing when your baby spits up on the lady down the street who just dropped by to see the new little one.  Baby spit up seems to be the norm, something we all expect and plan for.

A GI doctor once told me it IS normal for babies to have reflux, no not just the spit up, but reflux.  Why?  Babies have small stomachs and eat frequently.  Some babies love to eat and overfill.  Also, babies' esophageal sphincter, (the opening into the stomach from the esophagus that controls food getting into the stomach and staying there) may not fully be developed completely yet.  Babies muscle tone is low compared to adults, so sitting up straight and core control is not developed and therefore leads to reflux and vomit.  Take assurance parents, it is very normal for your baby to spit up.

So when does vomiting and reflux go from normal to a problem?  There are three things to look for that will indicate a problem:
   
                 1. The baby is not gaining weight.

                 2. The baby is in pain.

                 3. The baby begins to refuse food.

1. If the baby frequently vomits during feeds, or if the baby vomits all the feeds given at most feeding times, he or she will not gain appropriate weight.  That is why if you notice too much vomit, I suggest you go to pediatrician and have your baby weighed and talk openly about your worries.  Something underlying may be going on and should be addressed, especially if the baby is not gaining weight.  If the baby vomits a lot but continues to gain weight, there is not cause for concern.

2. If you notice your baby crying a lot after spiting up, if you notice the baby retching in pain, if you notice your baby arc his or her back, you can suspect your infant is in pain. Sometimes there is more reflux than what you notice.  You may only be seeing the baby vomit some of what is coming up into his or her esophagus.  There is acid in the stomach and when it is constantly refluxing silently or with vomiting into the esophagus it will begin causing irritation and many times pain in the infant.  This is a problem because you do not want your baby to be in pain and also it can lead to food refusal.  You should talk to your doctor if your baby seems to be in pain and ask the doctor about acid blocker medications.  These medications do not prevent reflux or vomiting, but it will neutralize the acid so your baby's esophagus is protected and has less irritation.

3. A baby may begin to reject feeds for a many reasons, but the most common reasons are pain associated with reflux and vomiting,  sensory issues, or breathing/aspirating issues when feeding.  Many times the baby is refusing consistently because there is an underlying issue.  If your child refuses food consistently you need to make an appointment to talk to your child's pediatrician.

Above all, always trust yourself and your child.  If you feel the baby is vomiting too much for any reason, please talk to your doctor.  However, always remember reflux and vomiting in infancy is the norm so try not to get too worried. 

Micro What?!?!?!?!

I've been absent writing posts for too many weeks, however I needed time to digest new information we found out about Mason.  I hope that by writing this post it will help me come to terms with the new information and hope others out there will be able to help me.

When Mason was about a year old our pediatrician sent us to see a geneticist at Walter Reed Army Medical Center.  We had the long interview, the physical examination, and a chromosome test.  At the time, 2007, the genetic testing wasn't as sensitive as it is now.  In 2007 there were no genetic syndromes found that could explain Mason's medical problems.

In 2014 after Lila, my youngest child, was also found to have the laryngeal cleft that Mason had, the ENT doctor at John's Hopkins referred us to a Genetics once again and explained there was a newer, more sensitive test and that Genetics was very different now than when Mason was a baby.

You see, as I understand it, for years doctors could only count how many Chromosomes a person had because the sensitivity of the testing and the cost to perform more in depth testing.  They could only count the recipe books so to speak.  However, once testing became more sensitive and more cost effective the doctors could count the actual genes and DNA in the body.  They could count the lines and words inside all those recipe books.

We took Mason in January to see the Geneticist at Johns Hopkins hospital in Baltimore, MD.  We again went through the long family history, explaining every medical or interesting fact about members for both sides of Mason's family.  We started with grandparents and ended with Mason's first cousins.  The genetics team decided that Mason should have blood drawn and the in depth genetic testing done.  They noted that although there wasn't an outright trend on Mason's dad's side of the family, there were enough strange medical issues to have him tested.  We also noted that Mason's cousin on his dad's side had a 16p13.11 deletion.  We didn't know what that meant, but mentioned it to them anyway.

After four weeks of waiting I received a call from the genetics councilor.  Mason did in fact have 16lp13.11 micro deletion like his cousin.  I was shocked because their symptoms were so very different.  I was also scared and devastated to learn that the little boy who I wanted to grow out of all these problems, would most likely not ever fully grow out of them at all.  He was missing parts of his genes!!!!

I cried for many days as I tried to come to terms that my little boy, the boy I put so much effort into making healthy, had a deficiency that I could NEVER cure, only treat.  I know many parents have gone through this same process, with even more devastating news about the genetic issues their child carried, and I took hope in the support I knew I could find.  However, it was my little boy that didn't have all the DNA he needed.  It became scary.

We were told at an appointment soon after that first phone call more about the syndrome.  There are such a wide array of symptoms and issues that can be associated with this micro deletion.  Mason did fall into some of the more prominent  issues, but not all.  There was story after story about different symptoms and problems. It became hard to understand what to look forward to or what was the norm.  But that is the interesting thing about genetics, all humans are so varied even with genetic abnormalities.

We were told my ex-husband also had this same micro deletion.  So much of my failed marriage and my ex-husbands struggles to function successfully in life and relationships became very clear.  This comforted me but also scared me of what is in store for my Mason, especially with his schooling and social skills.  The geneticist reminded me there wasn't the focus on early intervention and special education when Mason's dad was in school and that we have already have a good head start with any problems that may come his way.  I took courage in that.  I also took courage that there are things we can look out for preemptively.  We can get his heart checked just in case something was overlooked.  We know that his struggles in school are based on this deletion and not a lack of us doing everything possible.  I know that his feeding difficulties were not solely because he had been NPO for so long or the cleft,  but because almost all cases have shown feeding difficulties.  Many things came into focus.

Now the next scary step is to get all my children tested for 16p13.11 micro deletion.  They all have a 50% chance of missing these important development genes.  I currently have that in the works but it takes a while to get insurance approval.  In the meantime I am researching and trying to remain as calm as possible.  I am looking at the amazing human Mason is, that he has survived very difficult issues at a very young age.  He is a fighter that has an indomitable spirit.  He is just the person to succeed and overcome despite the fact he is missing parts of his genes.  He is amazing!!!!

To Nissen or Not to Nissen?

I wish I could say that when the doctors told us about Mason's need to have a Fundoplication I studied it out thoroughly before I made a decision.  I did not.  I trusted the doctors that this was a life saving surgery for him, but I later doubted I had made the right decision.

He was vomiting most of his feeds at 6 weeks old and barely growing.  Not even the NG tube with continuous drip feed was helping keep all he needed to grow inside his stomach.  When the doctors told me about a surgery that would prevent him from vomiting, I was all for it.  It was an amazing thought that this Fundoplication, or Nissen ( named after the surgeon that pioneered it) was just what Mason needed to make him stop vomiting.  Knowing that he needed a tracheostomy and a g-tube placement I understood the importance of protecting his airway from vomited materials.  I agreed heartily to the Nissan along with the tracheostomy and gastrostomy. 

However, it was not the miracle I was hoping for and many parents I have met in hospitals since then have voiced the same concerns.

The Nissen is a surgery where a surgeon wraps the top part of the stomach around itself to make it very tight so no stomach materials could reflux out.  The surgeon was able to perform the surgery laproscopically on little Mason to save him the trauma of a cut from his public bone to his chest bone. I begged the surgeon to try it laprosocically,  - not sure why - just mother's intuition.  I was highly grateful that they did perform it with only three small cuts, but he was a baby weighing only 6 lbs so it was a difficult surgery laproscopically . 

At first it seemed that the surgery was successful.  He was not vomiting.  However he started vomiting a few days after of surgery.  He did not vomit as frequently as before, so that was good.  I was happy, but not fully satisfied as I was hoping for a miracle.  I noticed that it seemed to take him much more effort to vomit now and he seemed to be more in pain with the vomiting.  The Nissen gave us time to help him grow and keep more food in, but it also stressed me at the pain he exhibited when vomiting.  As he got older all the tests showed that his Nissan was in place and working, yet obviously it wasn't working fully as he was still vomiting.

Doctors suggested that we should redo the Nissan as it is possible for the wrap to get lose.  At that point I started researching the surgery more thoroughly.  This was also during the time Mason was inpatient at Kennedy Krieger Institute learning how to eat orally.  I was surrounded by other pediatric patients who had had Nissens performed.  I saw children retch violently but  were not able to vomit.  Yes, they kept their food in, but the retching was agonizing to watch.  Our roommate, a two year old little girl, became sick with a virus.  Her mother had the same illness.  The mother was able to vomit while her daughter simply retched and gagged without being able to rid her body of the virus in her stomach.   At that point I was grateful that Mason was still able to vomit.

Most G.I. doctors noticed how small Mason's stomach was when they performed an endoscopy .  I have asked if his stomach were so small  because the Nissan made his stomach smaller.  Various doctors stated it could have been a possibility the Nissan made his stomach smaller, but it is just a theory.  He struggles, even now, to fit a normal sized amounts of food in his stomach.  Although I cannot blame the Nissan for that fully, it is always in my mind.

This is my overall feeling and opinion about the Nissan.  If your child's life in in danger because there is a high risk your child will aspirate (choke) on stomach materials when refluxing, you absolutely should consult your doctor and consider the Nissan.  However, if the doctors are recommending a Fundoplication to help with weight gain or just simply to alleviate pain from reflux, I would think more carefully on that and do more research.  Our G.I. doctor said studies show that more people are dissatisfied with the surgery and have other issues like bloating, painful meals, difficulty swallowing, and retching.  Most patients that I have talked to or have read about seemed to swap one pain for another.

If I would have known all I know now about the Nissen when the doctors first suggested it,  I believe I still would have agreed to it.  There are three distinct reason I would have gone through with it: 1) because at the time he had already had a life threatening aspiration,  2) he had an abnormal Larynx which made it more difficult to protect his airway,  3) he was vomiting with every feed making it more likely he couldn't protect his airway.  Yes, the Fundoplication did bring other problems but I believe it helped him live.  Am I frustrated that he still vomits and that he has a terribly small stomach, but it was a necessary evil to help him live.  Will I agree to Nissan, No.  I feel we can work his nutrition other ways with multiple small meals and his night g-tube feeds.  Right now it is not worth the risk to put him through that surgery again.

These are simply my experiences with the Fundoplication, please make sure you discuss them fully with your doctor and read all you can about it.  Always look at the risks vs the benefits from any surgery.  If the possible benefits are worth more than the risks, go for it.  If you are unsure, pause and research more.  Remember this is just my experience with Mason's Fundoplication, it is simply observations and opinions, look to medical journals and your doctors to make a final decision.