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!!!!