WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, July 3, 2013

Tube or Accessory?

Before you start screaming.. there are some very clear cut patients who clearly need a tube for survival. However, there is also a growing population of patients especially pediatric who aren't so clear cut. Especially in the last year I have had folks ask me, well if she really had Mito wouldn't she have a tube? A stereotype has been born. Though I can understand the basis, there are far more children sporting tubes in their bellies then ever before..

Medical intervention, or Prevention? Medical Necessity? Or Quality of Life?(this one is a hot topic!)What it seems to come down to is that it is up to the patient and their GI Dr. right now. I think it also depends on the disease process. I have met some seriously seriously ill patients in the Mast population(chronic and at times life threatening diseases)whose Drs. would never prescribe tube feeding..who survive on less then 4 foods for years. I have met a lot of allergy patients who are skeletal and have fewer the 2,3 or 4 foods, but no tubes recommended- I know plenty with gastroparesis from many different diseases, again tubes are the very last resort. Same story in many chronic illnesses populations. Seems like we have hit a new time when it is up in the air and based often on the Drs. individual theories and guess work on disease progression- Times are changing. Thankfully, there are still GI Drs. out there that support the choices we have made with Abby and our use it or lose it belief. It is also wonderful that Drs. seem to be creating individual protocols for each patient, if a tube works better for a particular child and is preferred by their family is it hurting anything? I don't know. I don't know if our use it or lose belief may hurt Abby in the long run, 18 years on the clock and so far so good but it is all up in the air for now. Maybe 5 years from now, tubes will be a thing of the past and the debate with it- we can all agree that would be great! :-)
This is the link I forward when I have been asked about tubes and why they see so many Mito kid's plugged in.

Failure to Thrive:

Here is the Government definition: (Via Medline Plus)

Failure to thrive refers to children whose current weight or rate of weight gain is significantly lower than that of other children of similar age and gender.


Causes
It is important to determine whether failure to thrive results from medical problems or factors in the environment, such as abuse or neglect.

There are many medical causes of failure to thrive. These include:

Chromosome problems such as Down syndrome and Turner syndrome
Organ problems
Thyroid hormone deficiency, growth hormone deficiency, or other hormone deficiencies
Damage to the brain or central nervous system, which may cause feeding difficulties in an infant
Heart or lung problems, which can affect how nutrients move through the body
Anemia or other blood disorders
Gastrointestinal problems that make it hard to absorbe nurtients or cause the body to have a lack of digestive enzymes
Long-term gastroenteritis and gastroesophageal reflux (usually temporary)
Cerebral palsy
Long-term (chronic) infections
Metabolic disorders

Complications of pregnancy and low birth weight
Other factors that may lead to failure to thrive:

Emotional deprivation as a result of parental withdrawal, rejection, or hostility
Poverty
Problems with child-caregiver relationship
Parents do not understand the appropriate diet needs for their the child
Exposure to infections, parasites, or toxins
Poor eating habits, such as eating in front of the television and not having formal meal times
Many times the cause cannot be determined.

Symptoms
Children that fail to thrive seem to be much smaller or shorter than other children the same age. Teenagers may not appear to have the usual changes that occur at puberty. However, it's important to remember that the way children grow and develop varies quite a bit. See: Normal growth and development

Symptoms of failure to thrive include:

Height, weight, and head circumference do not match standard growth charts.
Weight is lower than 3rd percentile (as outlined in standard growth charts) or 20% below the ideal weight for their height.
Growth may have slowed or stopped after a previously established growth curve.
In general, the child's rate of change in weight and height may be more important than the actual growth measurements.

Children who fail to thrive may have the following delayed or slow to develop:

Physical skills such as rolling over, sitting, standing and walking
Mental and social skills
Secondary sexual characteristics (delayed in adolescents)
Babies who fail to gain weight or develop often have a lack of interest in feeding or a problem receiving the proper amount of nutrition. This is called "poor feeding."

Other symptoms that may be seen in a child that fails to thrive include:

Constipation
Excessive crying
Excessive sleepiness (lethargy)
Irritability
Exams and Tests
The doctor will perform a physical exam and check the child's height, weight, and body shape. You will be asked questions about the child's medical and family history.

A special test called the Denver Developmental Screening Test will be used to show any delays in development. A growth chart outlining all types of growth since birth is created.

The following tests may be done:

Complete blood count (CBC)
Electrolyte balance
Hemoglobin electrophoresis to check for conditions such as sickle cell disease
Hormone studies, including thyroid function tests
X-rays to determine bone age
Urinalysis
Treatment
Treatment depends on the cause of the delayed growth and development. Delayed growth due to nutritional factors can be helped by showing the parents how to provide a well-balanced diet.

Do not give your child dietary supplements such as Boost or Ensure without talking to your health care provider first.

Other treatment depends on the severity of the condition. The following may be recommended:

Increase the number of calories and amount of fluid the infant receives
Correct any vitamin or mineral deficiencies
Identify and treat any other medical conditions
The child may need to stay in the hospital for a little while.

Treatment may also involve improving the family relationships and living conditions. Sometimes, the parent's attitudes and behavior may contribute to a child's failure to thrive.

Outlook (Prognosis)
Normal growth and development may be affected if a child fails to thrive for a long time.

Normal growth and development may continue if the child has failed to thrive for a short time, and the cause is determined and treated.

Possible Complications
Permanent mental, emotional, or physical delays can occur.


So this clearly states that weight though considered is not as important as overall development. This explains the "healthy" look many have..

I am not certain what nutritional testing is done during this process. I know that Spectracell actually can tell the Dr. the level of nutrition and micro nutrition at the cellular level, I wonder if this is used to help decide? Might be helpful to tell whether a child is just petite or is lacking necessary nutrition. It might also help monitor whether they are able to actually absorb much from their formula's,I know plenty of patients that don't seem to thrive on it either.. growth is not the only indicator for nutrition. There have been wide spread studies indicating that many obese patients are actually malnourished.. lack of nutrition can affect a child's cognitive development and future success academically.

I think this is a candle being burnt from both ends for many. May the answers come quickly,and tubes become an intervention of the past.

5 comments:

Jenna said...

I know looking back I hate that my mom did not get a feeding tube. I wish so much I could go back and time and know then what I know now.
If my mom had had a feeding tube her quality of life would have been so much better the last few years. Nutrition is so vital as you know and when it is so hard to eat you keep getting worse until you die. On my mom's death certificate it says she died of malnutrition.
I LOVE LOVE LOVE Matt's tube. I hate when people look down on it. Last summer Matt did horribly. He stopped drinking because when he would he would choke. For a child who survived off formula even before a tube drinking is IMPORTANT! Not getting hydration and nutrition gave him a really bad tick, that once he got his tube is now gone. Praise God.
Matt's quality of life has improved drastically since he got his tube.
I don't think this post was directed at Matthew, but it feels very personal. I wish the world would change their views on tube feeding.

Diane said...

Oh Jenna that is awful about your Mom! Where were her Drs? Dying of malnutrition surely her Drs had to have seen how medically necessary it was to prevent loss of life? That is just awful and I would be the type to sue - that would be neglect on the part of her treating Drs. in my mind.

It is complex- we don't know if what we are doing is right for Abby or not- and I said as much, it is a very difficult and complex decision. I know many families with children with tubes feel a lot of pressure to justify, but those of us who have opted to not to go down that road as a treatment plan get the same pressure. From being accused of withholding comfort, to ruining her quality of life and even some consider it as endangering life, the pressure is as bad for those who opt to take a different path. Drs. aren't a lot of help- there are just as many who feel when in doubt "tube um" as those who say, "use it or lose it" I get frustrated being asked constantly, " are you sure Abby has Mito? She doesn't have a tube".. It is frustrating for you and and me. Hugs- I am so glad hear Matt is doing better since getting the tube.

Jenna said...

It would frustrate me a lot to hear that. I know many mito patients with out tubes. If a tube isn't needed that is a good thing. I try not to judge either way. It is a personal decision.
The reason my mom didn't get a tube was really because of lack of knowledge. Since Matt has a tube I have given so much thought to the day that my mom and I signed the advanced directive we were asked about life support. My mom was so healthy back then, I could have never thought of keeping her hooked up to keep her alive. I really didn't know that a feeding tube didn't mean just sustaining life. We signed the paper work so light hearted.
Now days I make it a point to try to educate people. I don't know if my mom would still be alive if she had a tube, but I do know the last few years would have been very different.
It is awful there is so much pressure both ways. People fought me a lot not to get a tube for Matt, it scared them. I knew for us it was the right decision.

Diane said...

hang in there Jenna! between our two children, it is a very good example at how incredibly different and unique our Mitochondria can be affected! Two totally different presentations, with two completely different paths to treatment needed.
I wonder if at some point I cannot create foods to keep Abby fed, what she will chose? that is where we have it easier, since she is 18 now, some of the burden of those decisions have been lifted. It was harder when the decisions were all on me.

Have a great 4th of July!!

Jenna said...

You too have a wonderful 4th of July!

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