Thursday, January 26, 2012

Feeding Therapy

Does your child need feeding therapy? Has your child experienced an oral aversion (refusing to eat)? Has a highly sensitive gag reflex? Has or still has reflux? Been diagnosed with failure to thrive? Then chances are you may s/he may need feeding therapy.

The "journal to oral feeding". I can tell you from experience. Is not easy. Its a long journey and once again a journey that doesn’t resolve when you are ready, it’s all up to your child. If your child is tube fed than it might take longer.

 This is how it went with my son; He had a g-tube, he had reflux, he was (is) failure to thrive, he was trached and on a ventilator.

My son would suck on a pacifier early on and once the trach was placed we slowly tried to give him the bottle. He would take about an ounce or so, but that was it. It was just too hard for him to coordinate that suck swallow and breath thing and chances of aspirating were high.

So...we backed off for a while. We continued to work with early intervention (EI) on oral motor exercises.

When Collin came off the ventilator we introduced the bottle again. No interest. Sippy Cups? Nope. We continued introducing anything and everything we could think of. Eventually he accepted. His first food? An M&M! We were ecstatic! Long story short…there is no right way or a right answer with feeding therapy. Just keep plugging at it. Don’t give up.

Feeding Therapist

A feeding therapist is typically, an Occupational Therapist or a Speech and Language Pathologist.
We started with early intervention and when our son turned three we were fortunate enough to have a  therapist who specialized in feeding come to our home. (she’s still here..every Monday).

How does the therapy work? Its different with every child. Its truly an art not a science.
De-sensitizing and working on those facial muscles seemed (an still is, so important) for my son.
The tools that worked best for my son were the z-vibe and also the chewy tube.

For some great tips on feeding check out these New-Vis.com and Mealtimenotions.com both great resources for tube fed kids.

Feeding Therapy Programs

If you tried all you can think of and don’t think your getting as far as you think you can go (listen to your mummy tummy) these programs or programs like them at your local Children's Hospital.

Attend workshops if you can. I have attended some and they are informative and worth while. Below are some recommendations of feeding programs I have heard great things about:

Childrens Hospital Richmond - Feeding Program

Kennedy Kreiger Feeding Disorder Program

Childrens Hospital Feeding and Swallowing Program

Prior checking out these programs, don't forget to check with your medical teacm, chances are they have resources and feeding therapy programs that are not listed and may also be familiar with the programs above.

For a great source of nutritional information check out Feeding Underweight Children.





Friday, January 20, 2012

Choosing a Home Care Agency & Team

Do you need to hire a home care agency for your baby once s/he comes home?

The thought of such can be overwhelming, after all on top of caring for your medically fragile child, this could mean there would be 'strangers' (nurses) in your home caring for you child as well.

For us the visitors didn't stop there. There was the oxygen delivery guy and weekly deliveries medical supplies. Eventually our German shepherd just stopped barking.

Take a deep breath, most likely before you leave the NICU a social worker at the hospital will have an agency in place for you before you get home.

Here are some tips on how I worked with our agency:
  • Once the agency was established and nurses were almost ready to start I asked the agency to have the potential candidates meet us at the hospital prior to them coming into my home.
  • I asked the nurses questions about their background: Have they worked with children before? For how long? Were they experienced in pediatric ventilation and tracheostomy's? G-tubes? Did they smoke?
  • Most important, I observed how the nurse interacted with my son and how comfortable my son was with them. (You can usually tell if this person will be a good fit within the first 15 minutes or so).
  • If something doesn’t feel right to you investigate, ask more questions, talk to the agency about it or move on the the next candidate... Use your instincts.
If at anytime we were in need replacing a nurse at home, we would have the agency send potential candidates to our home prior to starting their assignment.

Once at home, be prepared to do some weaning of staff. Reality is some nurses will work out, some won’t, but don’t let this discourage you. It takes time to establish a “good” home care team.

Sometimes there are lulls in time and it may seem as though your nurse is just a babysitter and your not sure what you can have her do. It can feel awkward, but the most important thing is that you like and trust your nurse. Don't be tempted to reduce your hours in any way. This could result in losing your nursing coverage, besides good nursing can be hard to find.

It isn't uncommon for the home care agency to do a background and skill screening on the nurses (this is what happened in our case). If your not certain, contact agency and ask. Then conduct your own “type” of background check if you feel you need to.





Monday, January 16, 2012

What is a tracheostomy?

"Your child needs a tracheostomy"...That had to be one of the worst things I ever heard and one of the hardest decisions we ever had to make.

All I could think about were those horrible smoking commercials and the lady with a hole in her throat and an artificial voice. Was my baby going to be like this?

I can go on and on and tell you all I know about a tracheostomy but instead I will refer you to a fabulous website called tracheostomy.com. There is no way I could explain about a tracheostomy is better than this website can.

This website will give you all the information you need to know and more, what happens during/after surgery, the care of...even about decannulation.

There is also a message board on this website that you can participate in where I guarantee, you will meet some amazing people.

I just can't say enough about the creator of this website, except that I am thankful to her. Her website truly helped me through some difficult times.

What I can share with you is my own personal journey about a tracheostomy.

It was certainly a difficult decision to have the surgery done for our son, and once we were over the initial shock of the whole thing we could now see that it was truly the best decision.

We were finally able to see his beautiful face (entirely), enjoy his coo's (as only a baby can do) see him smiling! He was able play on his belly, learn to roll over, he could suck on a pacifier and drink from a bottle (sometimes). We had some sense or normalcy, finally.

Most important he no longer needed to be sedated and we could hold him more often. He also started to put on weight and grow. It was the best feeling.

I hope you get to check out tracheostomy.com and I hope you have as great of an experience as I did.
I have also met some wonderful friends through this website an I pray you can do the same.

For some inspirational stories check out Trachkids.org 







Sunday, January 8, 2012

Sensory Processing Disorder (SPD)

Wikipedia's definition of Sensory Processing Disorder (SPD) is …a neurological disorder causing difficulties with processing information from the five senses (sight, sound, touch, taste, smell), and the sense of movement (vestibular system), and/or the positional sense (proprioceptive).

It is also known as Sensory Integration Disorder or Sensory Integration Dysfunction.

It has been said that preemies are at risk for Sensory Processing Disorder because they are born with a very fragile nervous system to start with, then they are poked and prodded everyday for months. This certainly can’t help their sensitivities!

Does your child cry a lot, is s/he constantly leaning against you, trouble sleeping? Does s/he find rocking or swinging calming? Does s/he flap and see, over stimulated? Love to play with messy things, mud, play doh or food! (my child does) or do they hate these thing and prefer to no go near it at all? Is s/he out of playing hard one minute, crashing into things (and people) the next? Do crowded places bother him? S/he loves to be hugged or hate it?…These are just a few signs and all can be an indication of Sensory Processing Disorder.

My son he had all of the above symptoms. There are certain triggers that set him off too. For example flashing lights, when a sickness is coming on, spinning, after surgery and just recently I noticed a trigger for him is blue food dye (this could be food allergy related, but is certainly triggers his SPD!).

So from a “mom’s” point of view… If you suspect your child has SPD, I can’t stress enough that you try to find an occupational therapist (OT) who is SIPT certified or someone supervised by a SIPT CERTIFIED therapist.  It makes all the difference in the world.

An SIPT certified OT is additionally trained to diagnose and treat SPD.

While most OT's know about SPD, they can’t diagnosis and are only trained in the basics of the Sensory therapy.

I can personally say there is a difference in an OT who is SIPT certified verses one who is not.
How do you find a certified Occupational Therapist?
If you live in Massachusetts, North Shore area I highly recommend getting an evaluation from Dr. Tara McCormick at the Kioko Center.

While your child is in treatment try to remember that sensory therapy is an art not a science. What works for one child doesn't necessarily work for the next. Try to continue some treatments at home to help ease SPD symptoms.

Things we used in therapy were swings,  weighted vests,  modulated music.....and many more.

Below are some items that we use in our home to help our son when he's in sensory overload;.

Body Sox (small, medium or large) My son loves to put his stuffed animal in this and climb in.


Play Tents and Tunnels..

 In&outdoor swing; for days when they need calming and soothing activities.

Trampoline;I really like the handle on this trampoline especially for children (like mine) who has balance trouble.

Frog Bean Bag Set: I will layer these on top of my son when he is overstimulated or when he is sleeping I use it in lieu of a weighted blanket.

For additional information about SPD check out the The SPD Foundation.

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Saturday, January 7, 2012

Blendarized diets for tube feedings...

Ever think about trying a blended (homemade formula) diet for your tube fed child?

 I did, mainly because once in a while I wanted my baby to get some 'real food' experience. But found a couple of other benefits.

After some research I found a few forums that recommended easy recipes.

I would make a formula at least once a week (but would not keep it for more than 12hrs, suggested keep is 24). It was great to see my my son experience real food.

There was period of time when my son wasn’t digesting his formula as quickly as he should have been and his reflux was pretty bad. He was on Reglan (a medication that increase the movement of the stomach) for a while.

I was amazed at how well my son tolerated the home-made formula, his motility was better and it improved and his reflux a great deal.

Below is an easy formula that I used for my son.

I got it off a newsletter from a support group called Kidswithtubes.com. (the support group is no longer active, but serves as a great resource).

Our nutritionist did nutritional analysis on this recipe said she was all for it, we did a little tweaking of the recipe to add more calories and nutrition.

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The following formula recipe uses baby food and other readily available grocery items to produce a formula that provides approximately one calorie/cc.

This formula contains a variety of foods to provide the calories, protein, vitamins, and minerals your child needs. Depending on your child’s daily intake, a vitamin/mineral supplement may be needed.

Remember; please consult with your doctor or nutritionist before changing formulas or implementing other nutritional changes in your child’s diet:

Blended Tube Feeding Formula:
  • 3 C whole milk (or soy milk)
  • 2 C fruit juice
  • 2 jars strained vegetables (8oz)
  • 2 jars strained meat (5oz)
  • ¼ C Light Karo syrup
  • ¼ C non-fat dry milk powder
  • 1 tbsp vegetable oil (I used canola oil)
  • 6 tbsp baby rice cereal
  • ½ multi vitamin with minerals (I used 1 packet of carnation instant breakfast)
Mix well, pour into clean bottle or containers, cover and refrigerated. After mixing, the refrigerated formula may be safely used for 48 hours. Any formulas left over after 48 hours should be discarded
To provide a more balanced diet, rotate meats, fruits and vegetables that are included in this formula.
  • strained meat; alternate chicken, turkey, veal and beef
  • fruit juice:;alternate orange, apple, cranberry, grape and pineapple
  • strained vegetables; alternate green beans, carrots, peas, squash and sweet potatoes.
Prior to each feeding, the amount of formula needed should be measured into a separate container, covered and slightly warmed slightly.

To warm the formula, place the container with one feeding into a pan of hot tap water for 15-20minutes or use a microwave on low setting for approximately one minute (when using a microwave be sure to shake the formula or stir with a clean utensil to avoid hot spots. Do not overhead the formula as it may cook, get lumpy and lose valuable nutrients.

Because of the chance of bacterial growth and food poisoning, do not use formula removed from the refrigerator for more than two hours.


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For nutritional information and more about blended diets check out Feeding Underweight Children.

Inspire has some great support for any type of GI issue from reflux to tube feedings and g-tubes. For many parents all they use is homemade formula's and even create their own!

Feeding Tube Awareness has some good information on there site to guide you through feeding tubes as well.

Also check out; mealtimenotions.com Marsha Dunn Klein, MEd, OTR/L and Suzanne Evans Morris, PhD, CCC-SLP have written a book that contains other recipes for homemade formula’s.

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