Tubie Tidbits

For those of you who are interested in a little more information about feeding tubes, I thought I would share a few things that I've found to be very helpful.

Once Silas' feeding tube surgery was scheduled, we stumbled across Tubie Friends.  They sew feeding tube buttons into Build-A-Bear stuffed animals and make them available for kids with feeding tubes.

We contacted them before Silas' surgery, and they rushed our order so he could get it as soon as possible.  It arrived the day of his surgery.

It was nice for him to have a stuffed animal with a "button" like his that he could play with and get used to.  (He liked learning how the different tubes and extensions hook and unhook.)  We named ours Fudge.  We took Fudge to school, and the school counselor used him to tell the other kids in Silas' class about his feeding tube.

You'll notice that Fudge has a piece of cloth around his button.  We eventually bought Silas something like this from Button Buddies.  Feeding tubes can "leak" throughout the day.  Some people prefer to leave it open to the air.  We tried this, but the leakage was irritating Silas' skin. It was also making his granulation tissue worse.  (Granulation tissue is a red, fleshy tissue that often develops around feeding tube incisions.)  At first, we tried using gauze, but the strings would often stick to him and become very difficult (and painful) to get off.  The Button Buddies have been wonderful!

Another great resource that I found was the Feeding Tube Awareness Foundation.  (That's their logo at the beginning of the post.)  Here are a few of their pages that you might find helpful:

About Feeding Tubes 

Different Types of Feeding Tubes - Silas had a NG tube over the summer and then transitioned to a G-tube button.

For Friends and Family

Products - I just love their logo.  I'm planning to buy something from their store soon.

Note:  You can click on any of the highlighted words above to follow the links.

Janel

More Surgeries

Silas has been recovering VERY slowly since his G-tube surgery.  It was about 3 weeks before he really started playing again, and it's still sore to the touch.  He's been at school, and the year's off to a good start.

from a few months back...

On Tuesday, September 11, my mom had surgery to remove a mass from her abdomen.  They originally found the cancer four years ago.  It had started in her appendix and spread throughout her abdomen.  She had surgery to remove it as well as chemo.  The doctors said she would need to do this again every 3-4 years or so.  This spring, the cancer had regrown to the point that they needed to operate again.  She went through another round of chemo before having surgery.  In August, she found out that is was growing again.  They went back in to remove the largest of the growths.  There are others that they were unable to remove.  Please pray for her as she recovers from the surgery.

Last week was Mitochondrial Disease Awareness Week.  Ironically, Autumn had an appointment with her Mito doctor in Atlanta.  They have never known whether Autumn's mitochondrial problems are primary or secondary.  Some new tests are coming out in the next few weeks that could possible help us find out some of the answers we've been looking for.  Keep your fingers crossed.

The day after our trip to Atlanta, Autumn had the surgery to remove her ear tubes.  That went very smoothly, and it hasn't set her back a bit.

Janel

The First Week of School

Our school's Open House was the Thursday before school started - just three days after Silas' surgery.  He was in no mood to travel, but we thought it would do him some good to see a few friends.  He's such a people person.  So, we borrowed a wheelchair and rolled him in.  We were right.  He smiled as we ran into several familiar faces.  But even though he was in the wheelchair, just riding around for an hour completely wore him out.  We met the new teachers, left all the new school supplies, and headed home.  Looks like it's going to be a good year.

On Friday, I had a meeting with the 504 Team in order to have Silas' 504 Plan in place before school started.  It went really well, and I was relieved that they were so understanding.

Silas was no where near ready to go on Monday, so I didn't even try to wake him up.  So, I was able to spend the first day with Autumn.  Here she is before we left the house.

And here she is in her new classroom.

The structure at school is good for her, and she loves being there.  Sometimes when Criss takes her to school, he'll joke with her and try to get her to run away to the beach with him for the day - and she always refuses!  She likes school that much.  (Me on the other hand, I would go to the beach in a heartbeat.)

Tuesday morning, we got Autumn to school on time while Silas was sleeping in.  As soon as he woke up, he stated adamantly, "I want to go to school."  He had yet to walk more than a few yards, but if he wanted to go, I'd help him get there.

He was still irritable, and would not let me take his picture, so I snuck these of him from behind as we were leaving the house.

We wouldn't have won any races, but we VERY, VERY slowly made it down the long hallway to his classroom.  I wasn't sure how long he'd make it.  The goal was for him at least get to meet his new classmates.  First, the counselor came in and talked to the class about Silas' tube - giving everyone time to ask questions.  Then, they were going to read a book and make a craft - so he decided to stay for a bit.  (Craft time is his new favorite thing.)  He was still in such bad shape that I sat in a room down the hallway - just in case.

He stayed a few hours before he needed to leave.  He even let me get a picture (the front view this time) before we left his classroom.

Wednesday and Thursday were about the same - he went for 2-3 hours each day.  And on Friday, he made it almost the whole day.

So much for having the surgery done before school started so that he wouldn't miss any school...  At least school was motivating him to move.  When we got home on Tuesday he said, "Don't forget you owe me quarters for all that walking."  J

Janel

G-Tube Surgery

What a busy two weeks it has been!  Silas had his G-Tube surgery on Monday, August 13, and it's been crazy ever since.

When the GI doctor originally wanted to do the surgery in September, I had commented that I hated for Silas to miss a lot of school once the new school year had started.  The GI doctor said, "He'll only be in the hospital one night" - leading me to believe that recovery wouldn't take all that long.  That was far from true.

Even before Silas left recovery, they had trouble managing his pain.  The morphine they gave him didn't do the job, and they had to give him additional meds.  Once he was out of recovery, the doctor only wanted him to have Tylenol, which did very little for the great amount of pain he was in.

During his time in the hospital, they gave him a few, small bolus feeds.  He wasn't even back on continuous feeds (or walking more than a couple feet) before we were kicked out of the hospital.  Silas reacts to so many things that I'm sure it was for the best.  However, when he was discharged, I couldn't believe they were sending him home already.  He was in no condition to leave.  Just riding in the wheelchair was almost unbearable.

The good thing about leaving was that I was in control of everything that went into him again - and we could get rid of the IV.  The sooner we stopped putting new things into him, the sooner his reactions would end.  Thankfully he hasn't gotten to the point of those crazy screaming spells he gets when he's reacting to things.  But his colon's messed up again, he ran a fever for a week and a half, his skin is all dry & itchy, he's having random pains, and he just hasn't felt well - not to mention the "standard" pain from the surgery.

How do you convince a six year to walk when he's in terrible pain?  (The doctor wanted him walking as soon as possible to work out the stiffness and pain.)  $$$  That's right...bribery.  He probably has more money than I do right now.  We started offering him quarters (and sometimes nickels, dimes, or dollars) for walking.  We were trying to get him to walk from his room to the living room (or vice versa), so we would leave them along the path.  Once he made it to a coin, it was his to keep.  And at one point, his grandmother was matching whatever we gave him.  What a deal!

He did make it to school some last week, and today's his first (hopefully) full day.  My next post will have some of our "First Week of School Pictures."

Janel

"Weeping may tarry for the night, but joy comes with the morning."  Psalm 30:5b

There's No Place Like...

…the doctor’s office waiting room. J  Just when I think we’re nearing the end, another appointment creeps up on us.

For example, Autumn had to follow up with her neurologist this summer.  The neurologist wanted us to have Autumn’s hearing checked again (along with a number of other things).  The subsequent visit to the audiologist led to today’s visit with the ENT.  Today’s ENT visit now has us scheduled for surgery in September. L It reminds me of the book, If You Give A Mouse A Cookie.

Autumn’s had ear tubes put in twice.  The second set of tubes has been in 3 ½ years now, and they are long overdue to be removed.  You see, they are supposed to eventually fall out on their own, but there are a select few (like Autumn) who have to have them surgically removed because the tubes decide not to come out on their own.  It’s not that I’m worried about the surgery.  (If I’m counting correctly, this will be the 9^th time she’s been put to sleep for a procedure.)  It’s just that I would like to be one of those “normal” people who doesn’t know all of the nurses in One Day Surgery on a first name basis. J

Here’s a review of all the places we’ve been just since May…

·         May 1.  Silas saw GI doctor.  Tried Entocort.  Think about NG tube.

·         May 3.  Autumn had to see Orthopedist.

·         May 10.  Autumn & Silas supposed to go to the dentist on the same day.  Autumn had a fever, so I had to reschedule her appointment.

·         May 21.  Autumn goes to Dentist.  Find out she has two cavities.  (Maybe because she likes to eat the toothpaste and not actually brush her teeth?  Just guessing.J)  Of course, they’re on two different sides of her mouth, so they can’t be done at the same time.

·         June 5.  Autumn goes back to Dentist for cavity #1.

·         June 18-19.  Silas sees GI doctor that morning then is admitted to hospital to get NG tube.  We stay overnight at hospital.

·         June 21.  Autumn goes to Dentist (yet again) for cavity #2.

·         June 27.  Autumn sees her Neurologist.  Had to go to Children’s for lab work afterward.  Doctor had us schedule follow-up appointments for the heart doctor, audiologist, and doctor in Atlanta who did Autumn’s testing for mito.

·         June 28.  Autumn follows up with GI doctor.

·         July 3.  Autumn sees Pediatrician about ADHD medication.  (The ones we tried last year made her CRAZY!  Have to find something different for the new school year.)

·         July 9. 

o   Autumn sees Audiologist in AM.  She finds some abnormalities.  Have to see ENT.

o   Have Silas’ arm x-rayed at doc-in-the-box.  Buckle fracture.  They don’t have anything waterproof or removable.  Have to see Orthopedist.

·         July 11.  Silas sees Orthopedist and gets brace for arm.

·         July 12.  Silas sees GI doctor.  Gained 5 pounds with NG tube.

·         July 23.  Autumn sees cardiologist.  Everything still looks good.

·         July 24.  Appointment about Autumn’s ADHD medication.

·         August 9 (today).  Autumn sees ENT.  Has to have surgery to remove ear tubes.

In case you lost count, that was 18 appointments.  And still to come…

·         In August

o   Silas’ G-tube surgery.  Will stay overnight in hospital.

o   Meetings with Silas’ school about starting school with a feeding tube.

o   Autumn has follow-up apt. about new ADHD medication.

·         In September

o   Autumn sees Mito doctor in Atlanta.

o   Autumn’s surgery to remove old ear tubes.

Makes me tired all over again just thinking about it.   But one day...

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning nor crying nor pain anymore, for the former things have passed away,”  Revelation 21:4.  (In other words, no more doctor’s office waiting rooms.  Yeah!!!)

Janel

Tube Time

The last time I wrote about Silas, the doctor had just scheduled him for an NG tube.  We had talked with him a lot about what was going to happen – and thank goodness, he didn’t remember his first NG tube experience (when he was 2).   To give him something fun to think about, I promised him a trip to the hospital’s gift shop after it was over.

We were admitted to the hospital, and all-to-soon the nurse came to take him for the tube placement.  It’s done in a center room on the same hallway as his room.  The room’s not very big, and they asked that only one of us go with him.  I (very quickly) voted that Criss go.

Although Silas returned to the room with a look of pure shock still on his face (trying to take in all that had just happened), they praised him for doing such a good job.  After he had a moment to gather his thoughts, he said, “I want to go to the gift shop,” and off we went.  His eyes landed on a large, plush, Spider Man ball, and his mind was made up.

Here is Silas leaving the hospital with his new supplies the next day.

Three weeks after the tube was placed, we had another appointment with the GI doctor.  In just three weeks, Silas had gained 5 pounds and grown 1/3 of an inch!  The doctor was very pleased, and I was happy with how much healthier he looked with a little more meat on him (not that he was horribly underweight, but he had not gained any weight in nearly a year).

Our local Children’s Hospital has been in the middle of computer system changes as well as constructing a new building.  The GI doctor wanted us to see him again in two months (Sept.) and talk about G-tube surgery at that time – after the hospital had finished moving into the new building.

Our initial feelings were relief at having a little more time to process all of this.  But, as the days dragged on, Silas would comment on how uncomfortable the NG tube was and how he was growing tired of having something taped to his face all the time.  He also preferred not to have to start school with the NG tube – since it’s so much more conspicuous than the G-tube.  So, I eventually called to see if there was any way we could get it done sooner.  Why postpone the inevitable?

At first there were no openings until September, but just this week they called because there was a cancellation.  We go in a little over a week.  It’s the week before school starts, so that is good.  Besides not having to start school with the NG tube, he won’t have to miss school to have it done.

In the midst of all of this (a few weeks ago), Silas was complaining of arm pain.  We’re still not exactly sure when he hurt it.  We went to a local doc-in-the-box who said Silas had a buckle fracture and wanted to put his arm in a splint.  When I found out it could not be taken off and was not waterproof, I decided that was just a little more than I could handle at the time, and we left with it in a sling.  We then saw an orthopedist who said it wasn’t too bad, and he let me choose between a waterproof cast or a (removable) brace.  Of course, by this time, Silas was all excited about getting a yellow cast (his favorite color) that all of his friends could sign.  I talked him into the brace, and the doctor found a gray one that people could still sign.  (Yeah!  Problem solved.)  The brace also helped us avoid another appointment to have a cast removed.

During the day, Silas wears the backpack that holds his feeding pump and other supplies.  At night, he has a pole that everything hooks to.  It’s very cute to watch him roll his pole down the hallway after he wakes up each morning.  I smile every time I hear those little wheels rumble.

Janel

Silas - Late Spring & Summer 2012

After our many failed attempts to find a medication or other treatment that would relieve Silas’ symptoms, we went back to see our GI here in Alabama.  We had not seen him since last August – prior to our trip to SC.

I brought up how concerned I was about Silas being malnourished for so long (as determined by his pre-albumin levels).  He said we could put in an NG tube (that goes through the nose and into the stomach) to see if Silas still tolerated Elecare.  Elecare is the one thing that Silas always did really well on (if he wasn’t eating anything else with it).  The problem was that he refused to drink it any more.  It smells bad and tastes even worse.  When he quit drinking it four years ago, he ended up in the hospital for 2 ½ weeks.

I wasn’t surprised that the GI doctor mentioned some type of feeding tube.  He’d never mentioned it before (other than having it in the hospital), but it’s something I always knew was a strong possibility.  What really caught me off guard is that he wanted to put in an NG tube first.  Silas had an NG tube during that 2 ½ week hospital stay.  It was the single most horrific experience of our lives.  They take this long tube and shove it down your nose – all while you are awake!  I’ve mentioned before that it took FOUR adults to hold him down and a FIFTH to put in the tube – and it had to be reinserted multiple times.  I had promised myself that we would never do that again.

The second thing that that surprised me was that he said we would put Silas on continuous feeds.  This entails Silas either being hooked to a pole or wearing a backpack (that holds the feeding pump) almost 24/7.  I definitely wasn’t expecting this.  However, with the amount of inflammation and problems in his digestive system, this would provide the best chance of him absorbing the most nutrients.

I also asked the GI about other medicine options.  I knew there were supposed to be options that were stronger than the anti-inflammatories he’d been taking but less problematic than systemic steroids.  He said we could try Entocort.  It’s a steroid, but it stays in the digestive system.  The GI said it’s only recently been out long enough for a generic to come out and people to actually be able to afford it.

So, the plan was to first see if Silas would drink vanilla flavored Elecare (slightly flavored nastiness).  Second, try the Entocort.  Third, consider NG tube.

Well, he refused to drink the Vanilla Elecare, so we had a talk.  (He’s really good about things sometimes if you try to explain it to him.)  I told him he had a choice (not meanly but matter-of-factly).  He could learn to drink the Elecare, or we could put in a tube that put it into his tummy for him.  We’ve met someone with a G-tube and backpack before, so he knew what I was talking about.  We looked at pictures of tubes on the Internet.  I told him to think about it.  Later that day, he said, “Mommy, I think I would rather have a tube.”  Sigh.  Who could blame him?  I don’t think I could drink large amounts of it every day either.

We moved on to the Entocort.  Second day he took it, he spiked a fever.  This is what he does when he’s reacting to something.  Found out it contains sucrose – which he’s never done well with.  Since this was our last hope before a tube, I wasn’t giving up easily.  We tried again, this time we started with one (he was supposed to take 3 each morning), then worked our way to two, and finally back to three.  First day on three, he ran a fever again.  We went back to two.  We did make it on two for three weeks (which is the amount of time they say it can take to kick in).  However, it caused all kinds of issues, and we had to quit at that point.

After talking to the nurse, we were scheduled to drop by the GI office and then be admitted to the hospital to get the NG tube.

Janel

Silas - Spring 2012

It’s time I caught you up on all that’s happened with Silas (and I’ll warn you now that it’s a lot of information).  From our week-long trip to see Dr. M in South Carolina, we found out that Silas has inflammation in his colon and small intestine consistent with Crohn’s disease, a disaccharidase deficiency, fructose malabsorption, bacterial overgrowth, and multiple food/environmental allergies. 

The question I had from this point was – Which is primary?

Generally, you don’t have this many unrelated things going on.  They are likely related somehow.  It could be that Crohn’s is primary, and the inflammation in his intestines has caused all of these other things to go wrong.  The problem is that Crohn’s disease in young kids is rare, and it would be extremely unusual to see Crohn’s in an infant – which is when all of his problems began.  It could be that the disaccharidase deficiency is primary, and that his inability to digest sugars caused the inflammation, which caused all of the other problems.  Or, there could still be a different problem (that we haven't found yet) causing everything.  No one seems to know.

The problem is that unless we figure out what his primary problem is, we may not be able to treat it effectively.  And nothing we’ve tried so far has made that much of a difference. 

Here are some of the things we've tried these past few months…

·        First, we had to eliminate the new food allergies they found.  This is the one thing that’s actually been helpful.  Eliminating foods is the one thing that always works.  (That’s why we’re down to about 3 foods).  Since we were already avoiding all forms of sugar, he was eating a lot of meat.  After the allergy testing, we had to eliminate beef and pork.  Beef was the one he was eating the most, we could see a definite difference when we removed it.  The testing confirmed a suspicion I had that hamburger patties were bothering him.  Any time he had one, it was nearly impossible to get him up and out the door for school the next morning.

·        Second, they had us swap his anti-inflammatory from Balsalazide Disodium (Colazal) to Apriso, which is supposed to be more effective in the small intestine (where is inflammation is still active).  We first tried it in the capsules (since he is good at swallowing things).  He had problems with the capsules increasing symptoms, so we finally had to open the capsules and give him just the granules.  He wasn’t any worse this way, but we didn’t see any improvements either.

·        They then had us try Sucraid.  If his primary problem is the disaccharidase deficiency, there is something called Congenital Sucrase-Isomaltase Deficiency (CSID).  People with CSID take Sucraid with every meal to help them digest sucrose.  He was screaming after taking it for just two days.  We had to stop.

·        Continuing with the CSID theory, we tried another digestive enzyme from Kirkman Labs.  It increased his symptoms as well.

·        During this time, I came across some very detailed information about the CSID diet and the foods that contain the smallest amounts of sucrose and starch (the primary problems in CSID).  I fed him a couple foods from this diet.  He threw up for NINE HOURS that night!

·        I called the doctor in SC again.  He said the one thing we hadn’t tried was an antibiotic to get rid of the bacterial overgrowth.  Silas took it for a couple weeks.  It might have helped slightly while he was on it, but it was nothing to write home about.

·        Blessed Springtime!  Silas always feels better in the spring and summer.  It was a great relief when the warmer air began to move in, and he at least had some relief from the cold temperatures.  Even his teacher commented on the difference in his behavior.

At this point, I wasn’t sure what to do next.  Our GI doctor here in town (though super friendly) has been very slow to act and keeps saying that he still hopes Silas will outgrow this.  Well, it’s been 6 ½ years already, and he keeps getting worse – not better.  Sitting around and doing nothing just isn’t an option.  We had gone to see the doctor in South Carolina because he sees a lot of patients with eosinophilic disorders – which is what we were looking into at the time.  I’m not sure if continuing to drive to SC will be helpful.

In the middle of trying to decide what our next step should be, I decided to go ahead and visit our GI doctor here in town to see if all of these new findings would give him any new ideas – or at least inspire him to be more proactive.  It was that visit that lead us to this…

And I haven’t even gotten to this yet…

Janel

More Test Results

The nurse called yesterday with more test results.  Silas' disaccharidase levels are low across the board.  She said this is very unusual and would indicate that there is damage to the lining of the small intestine.

Silas had already failed the fructose malabsorption test, and this new finding would explain why he has problems with other simple carbs - including sucrose and lactose.

She said they would likely want to do further testing to try to get a better look at the small intestine (since the endoscopy and colonoscopy can't go very far into the small intestine).

He's been taking the new medicine (Apriso) since last Saturday.  At this point, he's doing worse.  He's had problems with capsules in the past, so yesterday we started taking the medicine out of the capsule for him to take it, and we'll have to see if that helps.  I've read that the capsules can be made from beef.  I don't know if that's the problem (his beef allergy) or if they're just rough on his digestive system.

Janel

South Carolina - Test Results

The nurse called with our test results this morning.  But first, I will share a couple photos from our trip.

Here's Silas in his child-sized wheelchair following his endoscopy and colonoscopy.

And here are a couple pictures of the patches on his back from the allergy testing.

One afternoon, Silas enjoyed playing at a nearby playground.

I mentioned that we looked at Christmas lights one night.  The place we went had it set up for you to drive through to look at the lights.  At one point, there was a large field with deer, cows, zebras, etc.  Vehicles drove randomly about the field, trying to feed the animals.  Here's a glimpse of a cow who stuck his head in our van.  Criss was trying to feed him apples, which fell onto my shirt.  I squeeled as the cow started nibbling on my shirt.  Silas just laughed and laughed.

Now for the results...  They have determined that Silas has Crohn's disease.  It is especially affecting his colon and small intestine at this point.  On top of that, he has the problem with fructose malabsorption as well as multiple food and environmental allergies.  The allergies include milk, egg, beef, pork, dust mite, and mugwort (which cross-reacts with celery, apple, kiwi, peanut, fennel, carrots, parsley, coriander, sunflower, and peppers).

They are taking him off the anti-inflammatory medication that he's been taking and putting him on a new medication.  I'm not sure how to spell it, but I think it was Apreso?  The pharmacy had to order it, so it won't be in until tomorrow.

Along with the new medication, we have to make sure the allergens are eliminated from his diet as well as all forms of fructose.  This includes wheat - a fructan.  All the "ol" sugars - manitol, sorbitol, etc. also cannot be used.  We had pretty much eliminated all of these anyway because he was having such terrible problems with any type of sugar.

I am grateful that we finally have some answers and someone that is helping us through these diagnoses.  Yesterday was Silas' sixth birthday.  It has taken us six very long years to get to this point.  I only hope they can find a way to manage his symptoms.

Janel

South Carolina - Dec. 2011 (con't)

Day 4 - Thursday, 12/15/11

This was our busiest day this week - with two appointments, and I'm thankful that Silas did well through it all.  He started the day not allowed to eat or drink again (for the second day in a row).  Silas was very thirsty, but we managed to get him out the door.

We were scheduled to check in at the hospital at 8:00 for his endoscopy and colonoscopy.  He was a little nervous, and the hospital staff were so nice to let Criss go back with him until he fell asleep.  Then, the IV went in after he was asleep, so he didn't have to know about it until later.  He was back for about an hour before they came and got us.  Thankfully, he woke up with a good disposition.  He happily chattered with all of the nurses - though he didn't always make perfect sense.  :-)

Dr. M gave us the pictures from the procedure and said he didn't see anything abnormal.  However, we won't have the biopsy results until next week.  After being discharged, we returned to RMH where Silas and Criss took a nap and slept off the rest of the anesthesia.

This afternoon, we returned to the allergist to have the patches removed.  (25 patches - I finally counted.)  We go back tomorrow for a final reading.

From Dr. J's office, we went to a playground Silas had been wanting to visit.  We also tried to stop at the outdoor ice skating rink on Main Street, but they were doing maintenance on the ice, and it wasn't open.  Right now, we're about to have dinner before going to look at Christmas lights.

Day 5 - Friday, 12/16/11

Friday morning, we had to get up and pack before heading to the allergist (Dr. J) one last time.  Check out time is 11, and our appointment was at 10.  It was so good that we were able to stay at the Ronald McDonald House.  They ask for $8 per night; anywhere else would have cost us $100 or so a night.  They also have food you can eat while you're staying there, and different people/groups bring in dinner each night.

Dr. J took one last look at Silas' back (where the patches were), and we talked about the final results of the testing.  The prick testing showed allergies to egg, house dust mite, and mugwort.  Mugwort cross-reacts with celery, apple, kiwi, peanut, fennel, carrots, parsley, coriander, sunflower, and peppers - so those should be avoided as well.  Some of them may be tolerated if cooked.  (Though many of those would still trigger problems with his fructose malabsorption.)  The patch testing showed allergies to beef and pork.  These two things he was still eating, and I knew I was going to need to remove them from his diet soon because they were bothering him.  (He was starting to wake up extremely irritable every time he had hamburger meat the day before.)  Dr. J also said to leave out milk because of the types of reactions Silas has had to it in the past.  Milk was also one of his original allergies (when he was tested at age one).  Dr. J also said that prick/patch testing for milk is very unreliable.

At this point, we know of the above allergies and the fructose malabsorption problem.  We are still waiting for the biopsy results which we should hear back from sometime next week.  Then, we will have a little bit clearer picture on what our next step will be.

Silas has been very irritable today.  Can't say if it's from the prick testing (that made him so sick on Tuesday), the fructose drink (for Wednesday's test), the Jello, the anesthesia, the IV, or all of the above.  It's good to be home, and hopefully he will settle back down soon.

Janel

South Carolina - Dec. 2011

Day 1 - Monday, 12/12/11

We left home about 7:00 this morning, changed time zones, and arrived in Greenville, SC, around 1:00.  Our first stop was at the Ronald McDonald House (RMH) where we were fortunate to get a room for the week.

After unloading the van, we found our way to our first appointment with Dr. M, the GI doctor who sees a lot of kids with Eosinophilic disorders.  No pokes, just talking - so in Silas' mind, it was a GREAT visit.

We made a trip to Wal-Mart to get a few supplies for the week, and headed back to RMH for the evening.  Silas became friends with the son of one of the ladies who works at the RMH during our first visit.  He was thrilled to see his friend again this evening.  They enjoyed playing together in the toy room before we called it a day.

Day 2 - Tuesday, 12/13/11

We definitely took a turn for the worse today.  Dr. M had us start giving Silas the medications to start cleaning him out for Thursday's colonoscopy.  We also saw Dr. J, the allergist, for the first time today.

The allergist did 49 "pricks" before deciding on the items for the patch testing.  I haven't counted those yet.  They'll stay on his back until Thursday.  5-10 minutes after the pricks, Silas turned pale and started complaining of stomach pain.  He hasn't been well since.

So, we've spent the afternoon resting and washing sheets, towels, and soiled clothes.

Day 3 - Wednesday, 12/14/11

Silas perked back up just before bedtime last night.  This morning was the test for fructose malabsorption, so he couldn't eat or drink anything when he got up.

We arrived at Dr. M's office by 7:45.  He drank the cup of liquid the nurse gave him for the test, and about 15 minutes later, he threw it up all over the waiting room floor.  How lovely!

They tried again, this time with only half of the normal dose, and he was able to keep it down.  In the end, the test was positive for fructose malabsorption.  We'll have to wait for the results of the other tests before coming up with a definite plan.  The biggest problem is that the dietitian said we need to eliminate the chicken nuggets he's been eating.  You know, one of the THREE to FIVE foods he eats over and over again for pretty much every meal...  We need to completely eliminate wheat, and that was the only wheat he was eating.  We had already eliminated all other known sources of fructose.

After the visit, we walked around downtown Greenville before returning to RMH.  Right now, we're in the process of getting the rest of the medicine down him that he needs to take in preparation for the colonoscopy.  After throwing up the other liquid this morning, I'm not sure we're going to be able to get it in him.  He has, however, enjoyed eating Jello today.  Such a rare treat!

Janel

Catching Up & Mito Awareness Week

My hopes of catching up the blog once the kids started back to school have been pushed aside by daily tasks and activities.  I have a master’s degree in Elementary Education, and I’m in the process of adding an endorsement in Special Education.  I have one more class to take, and then I will student teach in the Spring.  The online course I’m taking is squeezed into 8 weeks, so I’ve been working on that constantly.

I’ve mentioned before that I sometimes work as adjunct faculty at SEBC.  I have taught a class on Children’s literature every other spring for several years now.  A few weeks before school started, they contacted me to see if I’d be willing to teach Curriculum Development this fall.  I was glad to do it.  However, the first time you teach a course, it takes a lot of time to pull it all together.  So, between taking a course through Liberty and teaching a new course at SEBC, I haven’t had time for much else.

It also didn’t help that Autumn ended up sick at home for three days of her first full week at school.  I have mentioned the new (or increased) medications they are trying with her.  It is going well so far.  I am seeing some small improvements in language and gross motor activities.  That is encouraging.  We see her neurologist again next week, and we’ll see what she has to say.  The immunologist redid the ANA Test, and it came back positive a second time.  The NK function test also showed low resistance to candida (yeast).  We’ll have to see what he says about everything at our next visit. 

Silas seems to be adjusting pretty well to Kindergarten.  We have his week long appointment on South Carolina scheduled for the end of the year.  We’re just trying to keep him steady until then.  We saw his GI doctor here in town a few weeks before school started to get some forms, etc. signed for school.  He basically said to just come back when we need him.  He doesn’t know what else to do.

Not too much longer until our Magic Moments trip to Disney World.  I’ll definitely have to write about that one.  J

September 18-24 is Mitochondrial Disease Awareness Week.  It can be very difficult to find helpful information about Mito.  I ran across the blog of a mom that has three kids with Mito.  The information she shares has been so helpful.  I am putting links to some of her posts below if you’d like to learn a little bit more about the disease.

Mito What?

Mito Fact a Day – Days 1-7

Mito Fact a Day – Days 8-14

30 Things About Living With Mito You May Not Know

Over the weekend, we were sitting together and talking with the kids.  I asked Silas if he thought he might want to play some kind of sport one day.  He said “Yes,” so I asked what he might like to play.  He said, “Golf.”  It was very humorous because no one in our family plays golf, we don’t watch it on TV, and the only golf experience he’s ever had is one night at a putt-putt type of place – and he didn’t even like it.  I just had to laugh.

As always, thanks for reading!

Janel