Eat Happy!

Eat Happy!

Disclaimer

**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.**

**Resources are listed to support information associated with this BLOG. These resources support copyrights and are permissible. Information presented outside of this BLOG needs to incorporate resource sites to maintain legal status.**

**This BLOG and its information may be shared at no request; photographs will need permission from the blogger.**

Thursday, December 29, 2011

Mucous........ Retching......... Xylitol

I would like to take a moment to talk about Xylitol.  I have decided, as a dental hygienist, that it is time for me to share some information that is not nearly as public as it should be.  I have taken numerous courses on this topic and feel that it has a multitude of benefits to mothers, children, asthmatics, allergy suffers, those with recurrent infections, as well as the average individual who gets the occasional cold.  In a sense, xylitol can help all of us.
Over the years of schooling and continuing education courses, many leaders in the field, including Anne Guignon and Amy Nieves, have brought forward information pertaining to xylitol and biofilms that other hygienists and medical personnel have placed in the corner.
**This information is in no way intended to diagnose, treat, or cure any illness.  This information should never replace the advice of a doctor.  As a dental hygienist, I am well versed in the medical realm and the world of xylitol; however, as a dental hygienist holding a license in the state of Virginia, I am not licensed to diagnosis.  Please use this information as you see fit.  This information will pertain differently to each child, each adult, and each family.**
***Please also be aware that this information is gathered from a collection of resources throughout my education.  Anne Guignon, Amy Nieves, and the authors of the booklets are listed below as resources.  This information is copyrigted and should not be used without the acknowledgement of their research.***
And now, on with the information...
Xylitol was founded back in Finland during WWII.  During the war, Fins needed a sugar that was easily available and affordable within their own country.  Within the birch trees, they discovered a 5 carbon sugar called xylitol.  Xylitol is a sugar alcohol, much like sorbitol and mannitol.  This particular sugar, while tasting as sweet as sucrose, it metabolized differently and is much healthier for the body: upper respiratory, systemic, and dental.
Here are some interesting facts:


1) Helps prevent bacteria from forming Biofilms
**Biofilms are three dimensional gatherings of bacteria that adhere to a surface within the body.  They continue to irritate and grow as they flourish.  They are multi-layered and create “slime.”  They are present in 60% of chronic wounds and infections.  They are resistant to antibiotics and create a barrier to healing.**
The bacteria that form these destructive biofilms process xylitol poorly, and hence promote the flourishing of healthy bacteria throughout the upper respiratory tract and the mouth.  The xylitol disrupts the biofilm integrity and creates a more neutral and healing ph.


2) Cleansing Properties
The xylitol also help to wash and cleanse the upper respiratory tract.  The xylitol inhibits the growth of certain bacteria, such as streptococcus pneumoniae, that cause ear infections and other respiratory infections.  By washing the passageways, the bacteria are unable to stick and create biofilms.  Thus, the eustachian tubes, throat, and nasal canals remain clearer.
While helping the sinuses, the xylitol helps to “unstick” bacteria and naturally washing away the biofilms.  The biofilm is the slime that creates upper respiratory troubles in many cases.  It can also remove other pollutants, thus helping asthma and allergy sufferers.  It is also important to mention that these types of bacteria are usually antibiotic resistant.  These bacteria that are removed by xylitol are anaerobic, meaning they thrive without oxygen.  Antibiotics do not kill anaerobic bacteria.  This is why some people with recurrent upper respiratory problems and/ or recurrent ear infections are unable to find relief with antibiotics.
**The above statement is in no way intended to poo-poo antibiotics.  They are a wonderful part of medicine and certainly have their place.  However, I feel that often times they are “over-used” and are considered a “blanket” to cure all things.  Please be aware that both xylitol AND antibiotics are important in medical illnesses.**


3) Blood Sugar and Diet
Another awesome fact about xylitol is it has an extremely low glycemic index, which ranges from 1-100.  The glycemic index of xylitol is 7.  This means that it is a great way to help hypoglycemia, and stabilize blood sugar.  Diabetics, of course, should always check with their healthcare provider before adding, or substituting xylitol into their diets.


4) Dental Benefits
Xylitol is also an important way to fight cavities.  As a 5 carbon sugar, xylitol is processed differently by the bacteria inside your mouth.  It helps keep teeth strong and helps with dry mouth as well.  The xylitol reduces the biofilm build-up on the teeth, often referred to as “plaque.”  IN such, it decreases the occurrence of cavities.
NOW, as it pertains to Ian and some special needs children...
Ian was recently diagnosed with chronic sinusitis.  He had previously been treated for colds and the likes, but apparently, they left behind biofilms that continued to grow.  He then, gathered acute bacteria on top of that.  While taking the antibiotic helps with the acute infection, xylitol can also offer benefits to the more chronic biofilms that form in the passageways.  If only taking the antibiotic, the body “heals” by getting rid of the acute problem at hand, but leaves behind the growing biofilms that make him more susceptible to catching the acute trouble-causing bacteria.
We started giving Ian xylitol through a nasal spray and it has helped tremendously.  We used to do it occasionally, but regular use is the best way.  It helps Ian keep his passageways clear, since he already struggles with both mucous formed by his hypersensitive vagus nerve and issues with post-nasal drip not getting past his Nissen stomach surgery.  As a result, all the “dripping” backs up in his throat and creates retching and gagging, and vomiting of mucous.
The xylitol helps keep biofilms at bay, and helps to clean out all the “gunk” that has formed in the back of his upper respiratory tract that the antibiotics are unable to remove.  We also use a toothpaste gel that has xylitol in it to help with his acid levels from vomiting.  The xylitol helps give him a neutral ph and helps prevent erosion of his teeth and cavities from all the vomit.
Xylitol comes in many forms.  I have listed some sites below and company names.  Feel free to browse around and let me know if you have any questions.  Overall, I feel as thought xylitol has helped reduce Ian’s retching and gagging, and decreased the amount of mucous forming that has been causing him so much trouble.  As a dental hygienist, this information had been in front of me all along, I simply never placed all the pieces together.  I hope this information can help others.
**Once again, this information is not appropriate for every person and should be used in conjunction with diagnosticians.  However, please be aware that many medical personnel are “behind-the-times” on xylitol and may offer resistance.  Xylitol is not harmful and the only side effect is a laxative effect over 60+ grams daily usage.**
gums, candies, sprays, mints, supplements, medications, vitamins
4-12 grams daily is sufficient
it should be listed within the first 3 ingredients
*can be fatal in dogs and ferrets*
Resources:
Omnii Products
~ Xylitol pamphlet from wright and lenard
~ Xylitol, an amazing discovery from makinen, jones, an peldyak
~ MID: Minimal Intervention Dentistry. A Vision of Caries Management in the 21st Century Wendy Fitzgerel-Blue RDH, BSDH Amy Nieves, RDH
~ Anne Guignon: what does biofilm have to do with chronic disease, persistent wounds, and recurrent infections... VDHA 4.17.2010 presentation, Richmond, VA~ COPYRIGHT

Tuesday, December 27, 2011

Possible Chiari

This morning while we were visiting the pulmonologist, of all people, we got some interesting news!  We were discussing Ian’s habit of retching and all of the mucus he has.  Not only does he think Ian has chronic sinusitis, which is creating LOTS of mucus drainage that is unable to flow past the Nissen, causing it to backflow and causing him to retch, cough, gag, and spit it up........... but........... he would like Ian to have a head MRI.  While at the appointment, he mentioned that there can be some neurological reasons for Ian’s symptoms in reflux.  He thinks there might be a second reason for the reflux, other than the prematurity and underdeveloped lower-esophageal sphincter muscles at the base of the esophagus.
He asked if Ian had a sacral dimple..... which he does!  A sacral dimple is literally a depression, or dimple, at the base of the spinal cord... right above little baby Ian’ butt crack.  This is an area where there was some type of discrepancy in the formation of the spinal cord.  Ian’s was discovered in the hospital NICU.  They are often associated with spina bifida.  Ian had an ultrasound in the NICU and the dimple is “closed.”  There is no exposure to outside access, hence, no spina bifida and no need for surgical repair.  We have known this since Ian was born.
Now, for the interesting part!  The reason he was asking if Ian had one of those is it can go hand in hand with what he is looking for in the MRI that could be causing so many problems.......... an Arnold-Chiari Malformation!  This is a malformation of the brain where it is “downplaced” into the opening of the base of the skull.  This opening is called the foramen magnum, and the spinal cord travels from the brain, through the foramen (hole) and down through the vertebrae.  In this malformation, a portion of the base of the brain, such as the cerebellum and brain stem are forced down through this foramen.  This can cause all types of issues with the vagus nerve, which is a cranial nerve.  Nausea, reflux, mucus, and all sorts of things.  This malformation is formed during the early stages of embryonic development and is in no way associated with his prematurity.




There are three types of malformations depending on the degree of the placement.  Various symptoms may or may not occur.  Many are asymptotic until adulthood and it is not discovered until the condition worsens.  The pulmonologist believes this is more common than realized.  He has mentioned previously that Ian has a large head, and he does, in relation to proportional growth percentiles.  He would like Ian to have a head MRI done.  The frequency of the malformation in the population is debatable since many with a “I” classification never have symptoms or do not well into adulthood.
The treatment for this is surgery.  Surgery is the only way to *permanently* fixed the malformation.  We have a call in to the hospital to get the MRI scheduled.  The idea is out there, but not too far out there.  It may help us gather another piece of the puzzle.




Ian's vagus nerve, as shown above, is the one affected if this is the case.

Ian is also now taking Nasonex to help with the chronic mucus produced by the aggravated goblet cells in the glands over all the months of reflux irritation.  This should help less *drain* into the esophagus and less *trying* to get past the Nissen.  When it cannot pass through the Nissen, and backs up, it creates coughing and retching, and snoring!!  He also gave us an antibiotic for the chronic sinusitis infection he believes is present.  This 20 day medication will help him calm and clear his sinuses.
When we hear more about the MRI, we will follow up.  We are looking forward to seeing if there are any neurological reasons for Ian’s current issues.

Thursday, December 22, 2011

Messy Play

Ian had some fun time with Messy Food Play the other day.  He played with chocolate syrup, graham crackers, and Cheez-Its.  He also enjoyed his electric toothbrush.  The food and the oral stimulation satisfy his need for oral feedback and also help him become "safer" with food since he is so averse.  It's messy, but productive!  We have also played with jelly and pudding, but chocolate syrup seems to be the favorite so far.

He ate a few more goldfish this morning and didn't gag or retch at all!  Baby steps!





Noddles Nissen

We made Ian a Build-A-Bear with a G Tube button just like his.  We used one of his old buttons.  We named him Noodles Nissen since "Nissin" is a noodle company and Nissen is the name of the reflux surgery he had.  He giggles and has a cute hoodie in Ian's favorite color- Red!  All I need now is a little backpack for him like Ian has.







Wednesday, December 21, 2011

Go Fish

Ian ate three goldfish this morning!!!!  There was a little gagging and it took a long time to chew and swallow, but he ate them!  He also chewed on a teething biscuit this morning.  He pretends to use the sippy cup, but doesn't tip it all the way.  With a little help from mommy, I think he got a tiny bit.  Yesterday, while Nana was watching him, he also ate a fish and played with the teething biscuit.

We had feeding therapy last Friday and we have been doing messy play and "food kisses."  He likes the chocolate syrup the best!  He has had a lot of mucus the last couple days and CHOP has put us on a "Pedialyte plan."  We did one whole day of Pedialyte only.... then today we are mixing the food as we did before, only using half Peptemen JR and half Pedialyte.  He has not had any retching since we stopped the regular feeding pattern.

The mucus is formed when the vagus nerve senses danger.  Since Ian's vagus nerve is hypersensitive, it is very easily stimulated and produces mucus.  This causes him to snore and sound very congested.  He gags and retches on the mucus, causing him to spit up often.  The "danger" is present whenever Ian has any vagal stimulation, such as a sneeze, cough, reflux, swallowing pain, postural changes, and so on.

Tomorrow, as long as today goes well, Ian will be back up to the full strength recipe, which is actually about 3/4 strength Peptamen JR.  We continue to do feeding play sessions and occupational therapy sessions at home each day with different sensory toys.  I am still working part time (Monday and Tuesday only) so that I can be home Wednesday-Sunday with him.

I spoke with the nursing agency and Virginia Medicaid yesterday.  They are reviewing our claim for nursing care and I sent them the last bit of information today.  Hopefully, as the new year rolls in, we will have a nurse at home several hours a week to help care for Ian.  Two sets of hands with him are always a plus!

As the holidays roll in, I did exactly what I said I wouldn't do... I blew the budget for Ian's Christmas gifts.  We did not buy him a lot for his first birthday, so I decided to get him more for Christmas.  Several of his gifts are actually sensory and feeding therapy tools.  See, here I go making excuses for everything I bought! ;)

Ian does not seem to be overly interested in the Christmas tree.  He is trying to chew on some of the ornaments, but isn't as excited about the lights as I thought he would be.  I am excited about wrapping all of his gifts and seeing him tear the paper... although at the rate he has been playing, he will probably step on all of them, just as he does his toys now.  Our family room already looks like a toy store.  I can only imagine where we will put everything.  I continue to package up toys he no longer plays with and will most likely look to donate some after the holidays.

Sunday, December 18, 2011

Five Steps Forward and Three Steps Back

Ian’s progress seem to be yo-yo-ing back an forth lately.  In good Ian fashion, he does well on a routine or treatment for about 4-5 days and then resorts back to his retching and gagging and coughing.  Inconveniently, it seems to always reach to edge during the weekends.
This morning he woke himself up and had 3 major episodes, all with spit ups.  The spit ups seem to be getting to be more prevalent.  CHOP told us that this is overall a good thing because it means the Nissen isn’t too tight; however, with him retching so much, it means more spitting up than what should be happening.
He is still on the same routine and recipe for food and is being treated for blood sugar instabilities.  Overall, we are still at an improvement from where we were before those treatments.  Five steps forward and three steps back... I suppose is still two steps forward.  We are continuing the Benadryl, but he may have acquired a tolerance to that.  he has also gained a little weight, so he may have outgrown the dosage.
His post-prandial hypoglycemia is being treated with microlipid and 2 T of corn starch in his “meals.”  They can add a little more for this treatment, but they may also want to increase or change some medications.  The surgeon said they only use the medications when they have to, and they may decide to try a few other things first.
I have sent an email to CHOP this morning to hear what we will do next.  Most of Ian’s am retching episodes seem to be either triggered or exacerbated by mucous.  He seems to only be able to “fix” this by spitting it up.  His vagus nerve doesn’t seem to be “eased” enough.  He also has trouble during the daytime, but mornings are worse.
Last night, we tried VICKS Vaporub and the vaporizer with the Vaposteam to try and help keep him “open” more easily, but it did not help.  It actually may have made it worse because everything was loose, and moving around more.  The Benadryl should help dry things up, but it isn’t doing enough of that right now.
I am curious to see if any nerve medications will help Ian, but I’m not sure they will want to jump to those yet, or if they would do anything to ease the vagus nerve during mucous exacerbation...
We began feeding therapy again on Friday and between food play and “food kisses,” we are beginning to expose him again.  We are presenting opportunities everyday, multiple times a day, for him to play with and touch foods.  It is amazing how incredibly smart he is that he knows every single food from a toy, even if he has never been exposed to that food before.  All toys will go in the mouth, and no food will... smart little cookie!
We continue to play with the Nuk brushes, textured spoons, and battery operated vibrating toothbrushes.  He likes the toothbrush... good boy!  Last night, we used strawberry preserves and smeared them all over the tray and the spoons and brushes.  He did let some of it get into his mouth with the brush and from my finger.  Most of it was spit back out, but he still had the exposure.  Later on, when we went to put in him into the bath, once I removed the preserves from his cheek, he had a large red rash underneath.  I suppose this is his way of telling us he is allergic to strawberries!  We will now have to keep record of this and watch it carefully.  It subsided in about one hour and was a flat rash, no bumps or scratching.
He continues to be absolutely adorable and makes us smile everyday.  He does not seem at all interested in the Christmas tree and doesn’t even seem to know it’s there.  he seems much more interested in the laptop and electronics, as well as climbing on top of everything!  SPROUT TV is still our #1 channel and Sesame Street makes multiple daily appearances in our home, alternating with Baby Einstein of course.
He did have a good report at the ped on Thursday, no infections or troubles from their end.  He is now 21 pounds and is back on the growth chart for height.  Proportional growth does seem to slowly being happening.  With his feeding belt on and such, he does need to go up a size, but is wearing 18 months clothing in general, right where he should be.
He is all boy and is perfect in every way according to the surgeon.  We are just still struggling with the food and digestion an someday it will all be gone, hopefully.  Plowing through yet another day, week, month, and year...  Looking back, one year ago, Ian fit into his stocking, hard to believe... 5 pounds to 21 pounds!
Please continue to pray for Ian as he perseveres and works through his challenges.

Wednesday, December 14, 2011

G tube Care

To all the tubie mommas and tubie daddies out there, I was able to stumble across a wonderful combination of ingredients.  I recently spoke to a fellow tubie momma who used to use a cream called Greer's Goo on her daughter's G tube stoma.  After some research, I was able to find out that the cream has zinc oxide (diaper rash cream), hydrocortisone 1% (anti-inflammatory cream), and nystatin (antifungal).  The only prescription portion of this recipe is the nystatin.

Since Ian has a Nystop nystatin powder prescription, I combined about 1/4 of a container with his prescription triamcinolone cream (also an anti-inflamatory cream) along with about 2 ounces of Calmoseptine, an OTC cream notorious for G tube irritation.  Calmoseptine is 20% zinc oxide and very similar in nature to diaper rash cream.  It also has some cooling menthol in the mix.




I mix all three of these together.  Ian typically gets the Nystop powder, Traimcinolone cream daily and occasionally gets the Calmoseptine when red and irritated.  Now, I am able to save some steps and do everything at once.  I combined the ingredients and noticed an improvement right away.  We apply this recipe twice daily to his G tube site.

Leaving other "names" out, I also stumbled across a fellow blogger who uses a similar combination.  OTC hydrocortisone 1%, OTC zinc oxide diaper rash cream, and OTC clotrimazole cream (another antifungal).  This recipe was created at home by a practicing pharmacist.

I apply the new recipe twice daily and hope to continue to see improvement.  Ian's G tube gets tugged and pulled at times during his continuous feeding hours.  He also wears a G tube protective belt to shield any extra tugging and a G tube protective pad.



Combining all of these together, Ian's G tube stoma has really never looked better.  For some, it will be easier to get the Greer's Goo cream as a prescription; however, this cream must be compounded and needs to have a special pharmacy nearby.

*** As always, it should go without saying that none of this should be considered diagnostic, or therapeutic advice.  It is simply what has worked for my tubie and a few others and I wanted to share.  This information should never replace the care of a licensed medical professional. ***

Thursday, December 8, 2011

Still Happy

I'm still on a high from yesterday's GREAT appointment and took a lot of time today "sharing the wealth" with lots of parents, families, and support forums.  Anything that can provide opportunities is a plus in my book.  I know Ian's case is rare (preemie with sugar issues post-Nissen and severe reflux non-respsonsive to medical treatment pre-Nissen) but... I am willing to bet it is a lot more common than realized!


"Success seems to be largely a matter of hanging on
after others have let go."
~William Feather~



Be persistent!  Don't give up... just take breaks :)  ... like Ian! haha



Wednesday, December 7, 2011

CHOP Update 12.7.2011 visit

CHOP Update:

I apologize for the medical lingo and I tried to keep it in simple terms, but unfortunately, without the medical details, understanding Ian remains a medical mystery... Go figure!!!


Today we visited with the surgical reflux, post-Nissen clinic at CHOP.  We saw the surgeon who usually works with the ‘troubled’ Nissen kids.  I wish we had seen him 6 months ago!  He reassured us that the surgery needed to be done, and that we made the right decisions by doing so.  He also mentioned that more than 1 out of 15 kids seen at the clinic had the Nissen due to mismanagement, and never really needed it.  That made me feel much better about Ian having his Nissen done.
He talked to us a lot about the things that could cause retching.  He mentioned that it is usually never an allergy.  Those kids give skin and stool indicators and Ian had none of them.  He said it was on the list, but very low on his list.  Other reasons are volume and food composition.  He feels strongly that Ian’s food composition needs to be tweaked until it is perfect for him.  This includes looking at osmolarity (richness) of the food, the kind of milk protein (whey is better and leaves the tummy faster) and fats (long chain triglycerides are best because they do not affect the vagus nerve).  Which led him to his next reason.....
The vagus nerve is a very long nerve running through the chest and abdominal cavity.  This nerve is wired to the nose, mouth, throat, lungs, tummy, ears, and all other upper body organs.  He feels that Ian has a strong vagal affluence, meaning that his vagus nerve is extremely sensitive.  Any cold, allergies, ear infections, and tummy troubles will immediately lead to nausea and produce retching, and will cause all feeding schedules to stink!  By “poking” one of these, it “pokes” them all.  Eventually, this will improve over time.  It is also managed by the Benadryl Ian takes.  Benadryl suppresses the vomiting reflex in the brain and calms the vagus nerve.
We also learned that preemies are famous for their blood sugar instabilities.  He told us that someone born at 29 weeks has about 1/7th of the liver glycogen they should.  This means that they are set up for blood sugar instabilities because the glycogen usually “buffers” the blood sugar levels.  No one had ever mentioned that to us before!  While the body has made up for the glycogen deprivation, the sensitivity to blood sugar variance remains the same and is worsened by the Nissen.  He referred to it as Ian’s “sugar-stat” instead of a thermostat.  The body continues to over-compensate and has extreme highs and lows in blood sugar, leading to vomiting, retching, sweating, and redness or paleness.  He feels very strongly that a major component of Ian’s issues are blood sugar related.
Ian had just finished eating before we arrived, so in January when we follow up, he will be tested for blood sugar levels at certain times after a feeding to see the levels.  Apparently only 10% of post-Nissen kids have troubled “sugar-stats.”  Leave it to Ian to be one of them. ;)  The doctor mentioned that the fact that Ian stopped retching on continuous feedings leads him even more-so to this.  By buffering the sugars and stabilizing Ian’s insulin, the retching can cease by a huge majority.  This would be done through what he called “formula hacking” and the right fats and sugars.  Formula hacking is done by taking a food and then adding, diluting, and rearranging what is in the mixture.
When Ian gets sick and has a horrible time, we will be giving him pedialyte only to keep him hydrated and will need to follow up with them and follow whatever guidelines they recommend.  His meals will need to change for a while when he is ill.  He did tell us that other things can add to the retching, but that these were the big ones.
I was curious if Ian experienced hunger since he only gets such a small amount of food at a time, over a long period of time.  He told us that he would not because his blood sugar, insulin, and energy is on an even keel all the time.  But that as we went along and improved and moved toward giving bolus feedings, (larger amounts at one time) that it would return.
Once we find Ian’s “happy zone,” with fats, calories, and time of meals, things will begin to improve.  His tummy is now only half the size it was before the Nissen and it does constrain the vagus nerve.
Our goals are to 1) minimize retching as much as possible, 2) have proportional growth of height to weight (since Ian is short and chubby he said) ;) and 3) get as close to possible to a nearly normal life!  Mouth feeding is the long term goal and he did say that it would most likely take a few years to get there.  We will move Ian to bolus feedings from continuous as time goes on as well.
He also took away the anti-spasmodic drug because he said it does nothing for what he needs.  He told us that GI would really have nothing to offer us and that we should only have the clinic make changes to his regimen.  In general, the new plan is to drop his volumes, and condense them by using the right sugars and fats... which he said were longer chain ones- polysaccharides.
When Ian has a bad episode, he said putting a cold washcloth on the face actually helps.  This is an old-wives-tale that actually works.  Apparently cold startles the vagus nerve and ceases the nausea... who knew???
We have a new “recipe” of making Ian’s food.  We are staying on the same formula/ medical food we were the last 2 weeks, only adding different things.  One of them is cornstarch!  I had no idea, but cornstarch has the same long chain dextrose sugars that help the “sugar-stat.”  The other fat we are adding will help lower the richness of the food and stabilize the sugar because it has different sugars in it and will also help his motility.  It is also loaded with calories!  He told us that if Ian’s blood sugar is one of the big problems, the new fat we have been adding WILL help... another reason he thinks the sugar is the issue... because Ian has been doing great the last week or so.  The cornstarch does thicken the food a little, but not enough to cause problems.
The other change is Ian now eats for 6 hours instead of 7.  That gives him 2 hour break between his meals instead of 1, leaving him with more “free play” without his pump.  Rough-housing daddy loves this idea!!!
We will revisit them in one month to re-evaluate.  If Ian has a bad week during this time, he also gave us a Rx for an anti-nausea medicine that works a little differently from the Benadryl.  By using both, we can “double-tackle.”
We will continue feeding therapy and Ian has no restrictions on what he is allowed to eat by mouth.  As long as it is voluntary, anything that produces a positive response is allowed.... apart from eating Cheerios off of the Target floor of course! :)  Apparently sugars and fats “prime” the stomach for eating.  So a spoonful of sugar really does help!  The dental hygienist in me cringes at the thought of feeding Ian a spoonful of sugar... but a mom’s gotta do what a mom’s gotta do!  We’ll see...
Finally, the surgeon told us that the retching quickly becomes a behavioral response.  Kids will find that it gets them attention and begin doing it with non-anatomical reasons.  He reassured us to be nonchalant unless things get really bad and to not let him run us around with retching.
** On a completely “non-retching” note, Ian is thriving developmentally and is giving us a run around all over the house.  He is laughing and smiling and happy as can be.  He is sleeping well through the night,  He loves his bath-time and really loves when he can get into the shower with mommy or daddy and play in the water.  He is working on teething again with his first molars and is chewing on everything!!
He is having a fun time with his occupational therapy and is doing very well with his sensory issues.  He loves playing in the rice and beans and pasta shells at OT and is progressing onto “wet-sticky.”  I don’t even like the wet-sticky, how can I expect him to like it? :)
We are getting ready for the holidays and the house is still for sale.  I don’t think we will be going anywhere until the springtime.  No matter what, we will surely have a fun time watching Ian play with all the boxes and ribbons!
He is such a joy, everyday, no matter what happens.  I continue to feel blessed that he was brought to us, and will continue to work as hard as we can to fight for him.  So far, it has brought us to the right place, over many many months, and we are on the right path now.  These doctors are true gifts that we have finally found.  The others in the past, some good, and some very debatable!  The doctor today even told us we were smarter than probably half the doctors we had seen.  He said they simply don’t know how to respond to kids like Ian... Well, finally, we have found someone with the same philosophy as our family!  Hooray for a GREAT DAY!!!

Sunday, December 4, 2011

Initial Entry

Many of you know that Ian is receiving care at The Children's Hospital of Philadelphia (CHOP).  He visits the surgery department and the gastroenterology specialists.  These GIs are a sub-specialty in pathology and motility.  They have offered many new ideas and suggestions that other medical providers have not.  We like them very much.

Over the last few weeks, since out first visit there in November, Ian has been experimenting with various feeding regimens.  Currently, we are using the backpack and he is doing three 7 hour feedings each day.  He gets one hour off in between each, leaving him attached to his backpack-pump 21 hours out of the day.  He has acclimated well and has been down this road before.  He is a  little clumsy and unsteady at times, but will only get bigger and stronger and continues to improve with this.

He is trying a new food, Peptamen JR, which is made by Nestle.  It is a Rx food and is whey protein based.  While Ian does have a milk and soy food intolerance, he seems to do better with the whey than casein.  This is due to the fast gastric emptying it provides in comparison.  He is still "no food by mouth" (NPO) by choice.  We have messy play with food and continue to provide opportunities for him to play with and experience foods.  He will place foods into his mouth and sometimes play with them, but does no chewing or swallowing.

The surgeons say his Nissen Fundoplication (fundo) is still very new and much healing is yet to take place.  The surgery was done 9.21.2011.  Another large component of all this is simply prematurity.  The GI tract does not mature until week 37,38 and with Ian being born in week 29, he missed much of this time.  Hopefully, it will catch up in the future and he will no longer need the tube.  No one can tell us yes or no on the longevity questions.  The ball is in Ian's court.  It is our job to include him in as much occupational therapy and feeding-speech therapy as he requires to make advances.

Our current obstacle now that the Fundo has taken care of the vomiting, is retching.  He continues to "vomit," but since he can not at this time, he retches and gags.  We were at about a dozen times daily, but with the help of Benadryl, we are down to once or twice daily.  Who knew Benadryl suppressed the vomit reflex in the brain.  Apparently, there very well could be a central nervous system component that causes hyper-sensitization of the visceral lining in the GI tract.  Ian also takes an anti-spasmodic medication to help with the "cramps."

Along with the vitamins, Prevacid, Probiotic, and lung medications, he seems to be improving, slowly.  We will visit CHOP again on Wednesday of this coming week, with the surgery department.  They run a Post-Fundo, reflux clinic with one of the top surgeons for these issues in the country.  I look forward to what he, his nurses, and dietitians have to offer.  This will be our first meeting with them.

Look for updates!