New Symptoms. What to do.

Gallery


Over the course of my daughter’s 14.5 year life, we have had new symptoms pop up every couple years. This year was no exception. She began fainting. It first happened on the beach at 8:00 in the morning. If it … Continue reading

Communicating With Doctors


Here are some previous posts about communicating with doctors and other medical personnel.  This is one of our most important AND challenging jobs as parents/managers of chronic, complex care needs.

Keep Asking Questions

Doctors and Communication: You Don’t Have to Get Angry  

Managing Fear in Medical Emergencies

In All Honesty

Carefully Controlled Hunger


As the mother of a child with a sensory processing disorder who doesn’t eat much orally, I am always on the alert to help her overcome the oral aversiveness that rules her life.  Little Miss is fed by g-tube for typically 100% of her calories, although she CAN eat.  There are no structural or functional problems that prevent her from eating by feeding herself.

That being said, in the past Little Miss was at risk of literally starving to death rather than eating enough to stay alive.

However.

Moving from elementary school to junior high provides a desire on her part to feed herself and be like other kids.  Positive peer pressure DOES exist!

Her school offers pizza at lunch twice a week, and she wants to be a big kid. She eats pizza for lunch! I send along real silverware so her teacher can cut it into tiny pieces (otherwise she will not eat it). Her blended meal typically comes home untouched on pizza days.

But on to the title of this post: Carefully Controlled Hunger is a technique encouraged years ago by my daughter’s speech pathologist (who was a feeding specialist). What this means is NOT feeding overnight (then the child isn’t hungry during the day), and underfeeding enough to keep my child hungry without endangering her health.  This was very difficult for me to master, emotionally, as we had come so close to losing Little Miss due to her refusal to eat as a baby. Of course, Little Miss’s doctor had to help us find the right calorie count to use this technique.  It wasn’t something we could figure out ourselves.

Now, she is 12. The effectiveness of this method has another opportunity to succeed.  When she is quite hungry, she goes right to the refrigerator and gets out a hot dog. She cuts it up, microwaves it and eats it herself. Or she will ask me to make pizza.

We recently had a few days when she has self-fed three times in one day! It wasn’t enough calories, but it was exciting!

Another key for us in getting our daughter to self-feed:  we have dinner together as a family most evenings.  We all sit down to a meal and I make sure to provide something she usually eats.  We all talk and laugh and eat – together – and this has proven to be a good strategy as well.

Never give up. Never.  Keep trying things.  It is amazing how much it helps my caregiver-exhaustion to have her eat just one meal!

Probiotics


My daughter is fed via g-tube for medical reasons.  This doesn’t actually have much to do with today’s post on probiotics, except for one thing which I”ll tell you at the end.

According to Merriam-Webster’s dictionary a probiotic is “a prepartion containing live bacteria (as lactobacilli) that is taken orally to restore beneficial bacteria to the body”.  Translation of probiotic:  for life.

History shows probiotics in the form of fermented milk products have been around for literally thousands of years. They were used to improve appetite, and treat dysentery (diarrhea).   Eastern Europeans have long been found to live  more than 100 years, still actively enjoying life. Frequently one of the notable differences in their lifestyles is consumption of yogurt (which contains probiotics)! A Nobel Prize winner in physiology and medicine in the early 1900’s discovered that many disease-producing organisms failed to develop, or died, in milk that contained lactobacillus.

Research has been done in countries around the world about the benefits of probiotics. The most prominent healthy bacterium in the small intestine is lactobacillus acidophilus.  Bifidobacterium bifidum is the healthy bacterium in the large intestine.  The super strains of these two bacterium  have proven antimicrobial and antifungal characteristics. There are lots of claims as to what probiotics can do. Whether or not they are all true is still being researched around the world.

Studies show probiotics:

  • can shorten the duration of infectious diarrhea in infants and children (such as rotavirus and C.diff)
  • reduce antibiotic-associated diarrhea
  • keep harmful microorganisms in check
  • aid digestion and nutrient absorption
  • contribute to immune function
  • may help people with Crohn’s disease and irritable bowel syndrome
  • may help maintain urogenital health (like the intestinal tract, the vagina is a finely balanced ecosystem)
  • may alleviate symptoms of eczema, asthma, and allergies

Probiotics are present in a normal digestive system. I have seen the benefits in my daughter’s health (and the rest of my family) from regular use of probiotics.  It is always best to work with a practitioner familiar with probiotics  to know which bacteria are best for your child.  We are blessed that our M.D. is PRO probiotics and mentions them at almost every visit!

The advantage for my g-tube fed daughter is that I can feed her the yogurt or the probiotic capsule (dissolved in water) through her g-tube, without resistance!  I dissolve the capsule enough to get the probiotics from inside it, pull the water and healthy bacteria into a syringe and voile’!

References:

Harvard Medical School “Family Health Guide” Sept. 2005 update

University of Michigan “Health System” March 6, 2006 newsroom update

“Pediatric Views” February 2007 article “Understanding pros and cons of probiotics” Children’s Hospital Boston interview of Athos Bousvaros, MD

http://www.usprobiotics.org

The Power of Probiotics by Natasha Trenev

All of us have something to offer!


KarmaTube: Johnny the Bagger.

This is a short video and it points out that all of us have something beautiful to offer.  Whatever our limitations, whatever our kids needs, there IS something of beauty and value that comes from within us – planted there by God.

Yesterday Little Miss and I were at the doctor’s office verifying that she has strep throat.  After the exam we walked out of the exam room and the two docs were standing there in the hallway.  Little Miss broke out in song and dance “move like a funky monkey” – eliciting smiles and laughter from the docs.

This is a pattern throughout her life – the joy coming from her is infectious and a gift to everyone she shares it with!

You and your child have that something as well!  If you don’t know what it is yet, you will!

G-tube Care and Pointers


Instructions about care of g-tubes was woefully short 9+ years ago when Little Miss got her first one. Doctors, nurses, surgeons, hospitals all fell short in helping us know how to best manage a g-tube.  I have learned many things:

1. Keep it dry as much as possible. Even let the sun get to it once it is healed. At night when sleeping, uncover the area to allow air to circulate.  One of our biggest problems emanated from too much moisture seeping out and onto the skin.

2.  Once the site is healed, bandages and ointments are not usually needed. A “flat”/low profile button is easier to manage than one with a tube protruding.  If ointment is prescribed for hypertrophic tissue, etc. be SURE to get it only on the designated area.  (Yes I have a story about this.  Maybe another time.)

3.  If anything looks strange, have your doctor LOOK AT IT. (Yes I have a story about this also. Maybe another time.) All the verbal description you can manage doesn’t compare to having it eye-balled by a doc.

4.  Check the balloon volume every 4 – 6 weeks. How does the volume reduce?  I don’t know.  But it does.  If it has reduce significantly there must be a leak and it is time to replace the button.  Little Miss’s balloon has 4 cc or ml of water in it usually.  This is enough to keep the whole thing from popping out, without taking up too much space in her tummy. 

5. Insist with your insurance company that you need at least two spare buttons on hand.  We had only one spare years ago and when we had to change the button and the new one leaked we were up a creek.  Currently, we have two at home and one at school. Just in case.

6. Keep an old button and glue it to the tummy of a doll.  You can even punch a hole in with a nail or any of multiple tools and render a doll g-tube fed. This was helpful to our daughter although she doesn’t care about it now, at nearly age 11.  Kids always like knowing they are not the ONLY ones!

more pointers to come…. stay tuned.  If you have any questions, just drop me a comment or email!