Eat Happy!

Eat Happy!

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**The information provided in this BLOG is in no way intended to diagnose, treat, or cure any illness. This information should never replace the advice of a doctor. Please use this information as you see fit. This information will pertain differently to each child, each adult, and each family.**

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Saturday, May 19, 2012

March of Dimes: March for Babies Mother’s Day Weekend


March of Dimes: March for Babies

Last Saturday was Washington, DC’s March for Babies walk for the March of Dimes.  For those of you who do not know, the March of Dimes is an organization whose mission is to help moms have full term pregnancies and focus on the diseases that threaten babies.  They also have a Prematurity Campaign.  There are lots of interesting and disturbing facts about premature babies on their site.
Last year was our first year walking and Ian was 8 months old.  Adjusted age, he was 5.5 months.  We walked with our Reston, VA Hospital NICU team.  Ian was the team’s ambassador!  It was very emotional and also very uplifting.  This year, we had some out of town guests and were not able to make the Reston walk.  We decided to do the Washington, DC walk the following weekend.  The walk was held at Nationals Ballpark.  There were over 1500 people.  Our team raised over $3,000 for the walk.  Again, it was a very emotional, but very uplifting day.
This year Ian was 20 months, 17.5 months adjusted age.  He was able to walk during parts of the march and was running down some of the DC streets having a blast!  It was wonderful to see such a smile on his face, enjoying the outdoors and all the people.  Since the walk began and ended at inside the stadium, everyone had the chance to march around the warning track and even cross home plate.  The Jumbotron featured each team, or family, as they crossed home plate.  It was pretty awesome to see Ian on the big scoreboard!
We had beautiful weather and all the children, babies, and family were in such good spirits.  It made me so happy to see so many “in honor of” t-shirts.  There were also quite a bit of “in memory of” t-shirts.  I find these families to be the strongest.  As emotional of a day this is for families such as mine, to be able to fight and support when your preemie is an angel must be the strongest fight ever.  The love and support for these teeny-tiny babies was overwhelming!
I have included a few photographs from our day.  We took the metro into Washington, DC and then participated in the walk.




Here is a photograph of Ian from the NICU, and one from the walk last year (2011)


If you would like to support March of Dimes’ March for Babies, please visit:
Mother’s Day
Since mother’s day was the same weekend, we celebrated on the same day.  It was very nice to have the two events coincide.  This was my second mother’s day.  Last year, my first, half of it was spent in the car... however; the first half was spent with family and one of Ian’s great-grandmothers.... very very special!!
We had a nice dinner and Ian played with the boys until he was laughing very hard.  He had such a good day.  Between getting up at 5am to leave for the metro, being at the walk in the sun for hours, and then staying up for family events into the evening.... he was really ready for a good night’s sleep.  All in all, it was a fantastic day and I felt very blessed to share it with my favorite little boy.




Thank you to everyone who helped make this March for Babies 2012 year special........ babies, families, nurses, doctors, and support from areas all over the country!  We are forever grateful for all that you do!





Friday, May 11, 2012

Blenderized Diet

I know that I have mentioned this in the past, but I thought I would revisit since I am going to be adding a section of resource links for this topic.  The blenderized diet made small improvements for Ian, but unfortunately was not able to provide him enough relief.
Another reason for revisiting this topic is it can provide a lot of relief for retching after Nissen Fundoplications.  The exact reasons are unsure, and multiple theories exist.  Regardless, hundreds of people have been able to find relief and relief for their children.
Almost any food possible can be used in blenderized diets.  They can be for both oral and tube feeding.  There are lots of ways to follow through with this diet.  There really is no WRONG way, just precautions.
Although there are lots of ways to carry out the diet.... one thing seems to remain true.  While there are lots of loyal followers to all types of blenders, the Vitamix seems to outperform them all.  A friend of mine who manages the Real Food for Real People site mentioned that he thought it would pulverized a cell phone if he wanted it to.... and you know what..... I believe him!
When we were using this diet for Ian, we invested in a Vitamix.  And I do say investment.... this is not you $75 Cuisinart blender!  But it is well worth the money spent!
Please use these resources if you feel the urge or inclination to dive into the blenderized diet.  it is a wonderful way provide full, healthy nutrition that does NOT come out of a can.  A long time ago, this was all that was used for tube feedings, as formulas and medical foods were not formalized at this time.
Resources:
Pureed by Gastrostomy Tube Diet Improves Gagging and Retching in Children With Fundoplication
Food For Tubies: Real Food for Real People
Making your own food for tube feeding
Homemade Blended Formula Handbook
blenderized diet.com
Vitamix.com
Blenderized Food for Tubies Page- Free Facebook Login
Blenderized Diet Group- Free Facebook Login

Nissen Fundoplication Complications

Recently, Ian has been missing some of his Benadryl dosages throughout the day.  This was purely by accident.  Although, since missing them, he does not seem to be effected.  Upon making this discovery, we contacted Ian’ surgeon at CHOP to inquire about the potential for weaning the medication.
As you will recall, Ian has been taking the Benadryl to suppress the vagal response.  As I take myself back to Ian’s initial CHOP visit for the retching, I remember him saying at the GERD clinic that Ian had a strong vagal affluence.  What I did not know if this is a potential side effect from the Nissen surgery.  I discover this tonight by accident.
We were told by the surgeon that instead of giving Ian 4mls of Benadryl every 6 hours, to try only giving it to him at night before bedtime and see how he responds.  I decided, because I am the analytical person that I am, to research how Benadryl exactly helps with vagal response.  I recall doing this back in December with little popping up.  I stumbled across some information and articles relating to 5HT-3 receptors and antihistamines but nothing showed strong correlations.
Vagus Sensitivities and Gastric Surgeries
I decided upon a whim to research Benadryl (diphenhydramine) with Nissen, emetic reflex (vomit reflex), and vagal response search words.  What began appearing was a little disturbing.  The hightened response is very strongly linked with gastric surgery, laparoscopic Nissens in particular.  I remember my uncle, also a surgeon who has performed this on adults, speaking about this pre-surgery.  He mentioned retching was a potential side effect following Nissens... I was not aware it coordinated with vagal responses and nerve sensitivities... especially since Ian had been retching in the productive forming of vomiting prior to surgery.
Initially is seemed as though the retching was simply unproductive vomiting... meaning he was doing the same thing as before... but the food was staying in this time.  Little did we know, the reasons for the retching were completely separate from the reasons for the vomiting.  Ian’s previsouly vomiting was from GERD, and the current vomiting urge, shown in the retching, was from the vagus nerve.
Animal research has also been completed to help understand this connection.
Nissen-type fundoplication and its effects on the emetic reflex and gastric motility in the ferret
Hypoglycemia
I have listed a few of these links here and will be adding them to a section identifying Nissen Fundoplication Potential Complications.  Another complication of course is the previously discussed post-prandial hypoglycemia.  There is a whole section of resources dedicated to this complication since Ian has such trouble.  This complication has to do with escalated gastric emptying either early, or late after eating.  Early is 30-60 minutes after eating and late is 90+ minutes after.
gastric dumping
Dumping syndrome: a common problem following Nissen fundoplication in young children.
Dumping syndrome after Nissen fundoplication.
Dumping syndrome following Nissen's fundoplication: a cause for refusal to feed.
http://www.ncbi.nlm.nih.gov/pubmed/6427440



Dumping Syndrome Following Nissen Fundoplication, Diagnosis, and Treatment

journals.lww.com/jpgn/fulltext/1996/10000/dumping_syndrome_following_nissen_fundoplication,.6.aspx

One of the latter interested me since Ian has had such refusal to eat since the surgery.  In combination with his adverse memories of eating a vomiting, this may play a part in why he no longer wants to eat.  Due to the effect on the vagus nerve, stomach, and intestines from the gastric surgery, eating may no longer an enjoyable and desirable behavior.  With therapy and specialized diets and routines, it seems as though this can also be a managed side effect for most.

Diarrhea
Since I seemed to be on a role here, I was intrigued.  I started looking for articles including gastric complications and Nissen Fundoplications.  I noticed that there were others.  Of course, as we already knew, vomiting from vagal sensitivities was common.  Another “ah-ha” moment when I stumbled across the word “diarrhea!”  Well, if you haven’t caught some of the earlier blogs....... Ian has been struggling with pretty persistent and sometimes severe diarrhea.
No one ever mentioned this being potentially originating, or escalated form the surgery.  As I read further, since the vagus nerve innervates the stomach, causing the potential for the previously mentioned complications... it also contributes to bowel function.  This happens in multiple ways.
First, since the gastric emptying is escalated causing the dumping syndrome, food enters the bowel and moves through much faster than normal, curtailing the amount of time in the large intestines used to absorb water.
Secondly, the rise in glucose from the dumping syndrome causes extremely large amounts of insulin to be released.  Late dumping syndrome is correlated with carbohydrate digestion (as opposed to early dumping syndrome correlated with fat digestion).  Since carbohydrates are not digested and absorbed properly in the small intestines because of unstable glucose levels... things do not arrive properly into the bowel and may be partially undigested.  Larger, undigested particles will draw water and can created looser stools.
Thirdly, and most apparent, the vagus nerve innervates the intestines and first 2/3rds of the colon.  If the vagus nerve is sensitized by gastric surgery, such as Nissen Fundoplications, then potential side effects could appear as diarrhea.
All of this concerning diarrhea has been unknown to us until tonight.  I feel that CHOP never mentioned it specifically because it did not seem to be causing Ian severe issues with weight and hydration when it came to the diarrhea.  but you know me, I am always looking for explanations.  With Ian, sometimes they are the only ones I get!

Dysphagia



Oral Dysphagia is another complication that can follow Nissen Fundoplications.  This symptom can also occur simply in the rpesence of GERD, regardless of gastric surgeries.  Simply stated, dysphagia is difficulty in swallowing.
These are some resources available to inquire about dysphagia.  Most of them center around gastric surgery complications in pediatric patients.
The effects and efficacy of antireflux surgery in children with gastroesophageal reflux disease: a systematic review.
The evolution and long-term results of laparoscopic antireflux surgery for the treatment of gastroesophageal reflux disease
A review of laparoscopic Nissen fundoplication in children weighing less than 5 kg






Treatments
Treatments are varied and numerous.  Although, it does seem as though these are chronic and sometimes permanent side effects.  However, it has been shown that with careful monitoring, they can be very well managed.
*** An off-label and unconventional treatment for the gastric dumping is corn starch.  The corn starch delays the time the food remains in the intestines and the bowel.... allowing for a more stable blood glucose level, and decreasing the risk for diarrhea.
cornstarch for post-prandial hypoglycemia
cornstarch for hypoglycemia
*** Another treatment, as Ian has been taking, is an anti-emetic medication that suppresses vagus nerve sensitivities with nausea.  Anti-emetics work in a few different ways.  They can either block signals in the vomiting center of the brain in the medulla oblongata directly, block receptors in the stomach and intestines that trigger nausea in the brain, and/or act directly on the stomach by increasing the rate at which it empties and moves food through the bowels.  These reasons are why the Benadryl helps with nausea.  This too, is an off-label use of a medication.
Vagus nerve issues can arise from sensitivities from gastric surgeries, or from vagus nerve damage during surgery.  Nerve damage is rare and is difficult to prove since similar side effects can occur without damage.
Other Resources
Intractable hiccup: an odd complication after laparoscopic fundoplication for gastroesophageal reflux disease.
Motor and sensory function of the proximal stomach in reflux disease and after laparoscopic Nissen fundoplication.
Postoperative Gastrointestinal Complaints After Laparoscopic Nissen Fundoplication
Nissen Fundoplication and Gastrointestinal-Related Complications: A Guide for the Primary Care Physician
[Modifications of the glucose curves and gastric voiding of children with Dumping syndrome after laparoscopic Nissen surgery].
http://www.ncbi.nlm.nih.gov/pubmed/21520550


*****Please also see my post concerning Blenderized Diets as treatment for post Nissen Fundoplication complications

Saturday, May 5, 2012

Stair-Master

Ian has mastered the stairs!  We finally took all of our baby gates down and he is *walking* down them without holding on!!  I am so proud of him.......... and terrified at the same time.  Watch him go......

video

Wednesday, May 2, 2012

“The hearing ear is always found close to the speaking tongue”


Ian’s Ears
An excellent quote by Ralph Waldo Emerson.  This is what we are hoping will happen soon with Ian.  Last Thursday, Ian had a bilateral myringotomy with tube placement.  This is just a fancy name for saying he had tubes put in his ears ;)
We arrived early in the morning for the surgery and were back in our own home four and a half hours later.  It was amazing!!!!!!!!!  This was a very new experience for us.  I was awesome to be able to have a surgical procedure completed with anesthesia and then come back home.  After all the admissions and procedures and surgeries, we were more than happy to oblige!
Ian had the tubes placed for multiple reasons.  Yes, he did have 4 ear infections in the last 12 months, but the main reasons for the placement was for fluid accumulation and treatment tolerance.  Ian has been harboring fluid in his ears for over 9 months now.  Even though it remained uninfected most of the time... (I thank my xyltiol nasal spray theory for that one, thank you very much!)... it had been present so long that he acquired Glue Ear.



Glue Ear is a condition where negative pressure is produced from altered eustachian tube functioning.  It stems from a condition called Otitis Media (ear infection) with “Effusion...” or (OME).  It can be the result of a chronic ear infection, or from a viral infection.  Over time, this fluid can become very thick and impairs hearing considerably.  I guess it wouldn’t be enough for Ian to get “just lots of ear infections.”  This OME is highly correlated to eating while lying down, especially in the first two years of life.

GLUE EAR

Well, if can happen....... it seems like it most likely will with Ian.  he has had to deal with so many complications from treatments.  Since he eats overnight every night, with his G tube, since September, this did NOT surprise me.  The pediatric ENT said that he was able to break, suction, and extract all the fluid that had thickened inside Ian’s ears.  he placed the tubes without any problems.
The tubes remain for a period of about 6-12 months.  Hopefully, they fall out naturally, and on time, and Ian will not need more.  However, sometimes, when the causes are continuous, multiple sets are needed.  We do not know how long the tubes will last, nor how long Ian will be receiving overnight feedings.  With his volume sensitivities and lack of oral eating at this point, it does not seem to approaching anytime soon.
It seems as though Ian has already started to trend to progression.  He has started saying  the “du” part of DUCK and we sometimes even get the “c.”  the days after the surgery, he even started saying da-da a lot.  It seems as though his hearing is much clearer........... although I don’t know if he listens any better!  The time-out chair is still getting use ;)  Hopefully, this will be a big step in the right direction!!

Feeding the Bed
This morning we had another feeding tube disaster.  In the tubie world we call this “feeding the bed.”  A person with a feeding G tube button like Ian’s wears and extension.  One end hooks into the tube and rotates to lock it in place.  The distal end is an open “female” port.  This is wear the feeding bag attaches to the extension.  There are usually two ports on the distal end of the extension.  The feeding bag tubing connects by a “male” end, a barb.  The plastic barb end secures into the rubbery port on the extension.  This is supposed to be a *tight* connection and most of the time doesn’t cause any issues.  A handful of times, the attachment becomes loose, or even disconnected.
What happens now is instead of the feeding bag that is hanging overnight pumping into the extension and into the belly, it pumps into the bed.  Since the barb is not connected to anything, to food is pumped directly into......... NOTHING!
We don’t know how long Ian was disconnected and feeding the bed this morning.  After doing this many times, you begin to be a pretty good judge of how much is in the bed.  This morning looked like about 6-8ounces of his 17 ounce feeding.  This doesn’t mean it was detached that whole time.  What I left out before is that when the port and barb are not connected, not only are you “pumping” food in nothing and onto the bed..... but the extension is now unlocked and not connected to anything.
Extensions must be unlocked in order for anything to flow through them.  When they are unlocked and not connected to a feeding bag tube, contents of the stomach are released.  At times, when air needs to be “vented” or “burped” out in a release, or when tummy contents need to escape and decompress before re-entering the stomach, this is a good thing.  however, when a child is sleeping overnight, this is a bad thing!!  Ian had also been releasing all of his gastric contents onto the bed.  Any formula in his belly was running out, along with bile and other gastric secretions.
The result is a HUGE mess..... and an awful smell.  See, when gastric contents are released, it usually smells like vomit!!  Although, it is usually smelled because someone has released the contents by actually vomiting, not leaking all over the bed.  Sorry for the vivid pictures being painted here, but this is what happens.  AMT does sell a clamp, along with other manufacturers and their deices.  These help to prevent “disconnects.”  These are wonderful, but do have their cons.
The one we use does get in the way overnight sometimes when administering medications through the smaller port in the extension.  The clamp sometimes covers or blocks the port.  Three in the morning is not the time when you want to start moving tube equipment around in the middle of the night.......  However, after this morning, I think it is WAY worth the effort to avoid troubles like this one!!  Feeding the bed is no fun!
Here are a few pictures and videos to give you a run down of what feeding, caring for, and working a G Tube button can be like.  There are other types of buttons, but a lot of the basics are universal.


AMT MINI ONE G Button                                                   Continuous Feeding Extension

Port End of Feeding Extension with Feeding Bag Barb Inserted ............. and with CLAMP attached


AMT G Tube Button Introduction: About Ian’s G Tube Button:
How to clean and replace an AMT G Tube Button like his:
Continuous Feeding with Ian’s AMT G Tube Button:

To Eat OR Not To Eat
Ian is also beginning to improve on his feeding skills.  He attends weekly feeding therapy and has been making progress.  Today he tried some Chex from ChexMix.  he ate the rice and corn Chex at my initiative, but refused to eat the wheat Chex.  He only ate the other because I put it in his mouth, refused to let him spit it out, and made him chew it a few times.  Luckily, he liked it and continued to eat them.  We will be visiting with his feeding therapist tomorrow morning.  It seems as though things are moving so slowly that we hardly ever make any progress, but if I look over the long term..... it feels as though we have traveled much farther.  It has been 7 months since his G tube went in and he has gained over five and a half pounds.  That’s a long cry from vomiting every morsel.

Staircase to Playtime
One of Ian’s favorite things to do now is walk the stairs........ yes, you heard me right....... WALK the stairs.  We have taken down all the baby gates because he has mastered the  stairs.  Now, he simply walks them.  He used to bump on his bottom sometimes, or maybe go down backwards..... Then for a while he would walk down holding on to the staircase spindles.  But no, now he just walks up and down without holding anything.  How his legs are long enough to do this I have no idea.  The kid is barely 30 inches tall and thinks he 6 feet tall.
Sometimes his little foot will catch some behind him, but miraculously, he doesn’t let this get in his way.  He is very flexible and drags it behind him with his unbelievable balance until he manages to work it out.  I am going to try and catch a good video here soon and post it.
he also is putting his own clothes in the hamper each day and picks out books for bedtime.  Each day he amazes us with new things.  While we are excited and happy about watching him develop and progress, it is somewhat sad to see all the previous milestones we delighted in, disappear.  As he begins to talk more, I will miss the babbling and cooing noises.... as I miss the needing help to crawl up on the couch.
His little bendy legs get him just about anywhere.  Today, as he crawled onto the couch, he managed to get his leg up high enough that his knee was at nose level, then pushed himself up and onto the furniture!
Another day, another night of the life of a tubie toddler is gone and we are preparing for a whole new round tomorrow....... who knows what might happen next!?!?