Saturday, March 26, 2011

GI Appointment - 3/25/11

Yesterday was Silas’ appointment with the GI doctor.  If you’ve been reading, you may recall that this is our second GI doctor.  We swapped from #1 to #2 (they’re actually in the same practice) when Silas was admitted to the hospital and I realized that #1 had been wrong about SO many things and really messed us up at times.

With Dr. Weinstein pretty much ruling out Silas’ problems being metabolic and suggesting that the answer lies somewhere within Silas’ digestive system, that leaves allergic-type disorders of the digestive system at the top of the list.  We know that every biopsy they took in Silas’ colon showed inflammation.  However, #2 has always said that he does not believe Silas has Crohn’s.  Early on (about four years ago) I had asked #1 about it being en eosinophilic disorder (too many eosinophils somewhere in the digestive tract).  He told me that wasn’t it.  Before Silas’ second endoscopy and first colonoscopy (nearly three years ago), I asked #2 if they would check for mast cells.  He said they would.  After the procedure, I asked if they had checked for the mast cells.  He told me they had.  Last year, I was looking into mastocytosis again, and I called the GI office to double check and make sure they had checked for the mast cells.  The nurse assured me that they had.

That leads us to yesterday’s appointment.  I asked #2 if he could look back and tell the number of eosinophils and mast cells they counted in the biopsies taken during the earlier procedures.  SURPRISE, SURPRISE…  NEITHER of them had EVER been counted!  Even though they had told me they were – FOUR different times.  I might be really angry right now if I hadn’t become so used to doctors who don’t really know what they’re talking about.

So, #2 is having the biopsies from both endoscopies and the colonoscopy reread and the mast cells and eosinophils counted.  I’m not sure how long this will take because he said the lab will not consider this a priority.

If there are too many of either of these cells, we could have our answer.  If there are not too many cells in the biopsies, that doesn’t rule out either disorder because Silas was on elemental formula when all of them were taken.  If the counts are normal, we will be doing a food challenge for about a month in June so we can do new scopes in July.  We will do this during the summer while he’s not in school because the effects of him needing to eat foods that bother him for the scopes will most likely be pretty bad.

Our prayer right now is that they will be able to find the answers we need by rereading the previous slides.  Otherwise, we are in for a rough summer.

“Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, yet I will rejoice in the Lord; I will take joy in the God of my salvation.  God, the Lord, is my strength; he makes my feet like the deer’s; he makes me tread on my high places.”  Habakkuk 3:17-19

“If it seems slow, wait for it; it will surely come; it will not delay.”  Habakkuk 2:3b


Friday, March 25, 2011

Field Trip Time!

On Wednesday, Silas got to go on his very first field trip.  He was so excited!  I, on the other hand, was a little apprehensive.  They were going to California Pizza Kitchen.  Silas is used to having to eat differently from everyone else, and he usually handles it very well.  However, I am always cautious about big events that revolve around food.

The weeks leading up to the trip, we talked about how he would participate in the trip with his friends, and he could make a pizza for me to eat since he would need to eat his food.  This is a system we came up with a while back.  Any time there’s an activity that involves food, I encourage him to make one with everyone else and give it to someone (usually Daddy).  That way he can still participate, but he doesn’t actually eat anything that will make him sick.

Several days before the trip, Silas came up to me and said, “Mommy, I don’t know how to throw the dough up in the air.” (You know, like they do on TV.)  “Maybe my teacher knows how.”  It was just too cute and funny.  I assured him that the people that worked in the kitchen would know just what to do.

Here is a picture of Silas standing at the counter, telling the cook what toppings to put on his (my) pizza.

As Silas sat eating his chicken and millet bread in a room full of children eating pizza, I wanted to be sad for a moment.  It often hits me at some point during such events.  I chose instead to focus on the fact that he was having a good week and was enjoying the time with his friends.

Today was my second field trip of the week.  Autumn’s class has been talking about Community Helpers, so their trip included stops at the bank, Publix, McAlister’s (for lunch), the police station, and the fire station.  Silas had an appointment scheduled with the GI doctor, so I was only able to join her for the lunch portion of the trip.  Here she is eating her baked potato.

I’ll be back soon to post about today’s visit with the GI doctor.


Tuesday, March 22, 2011

My Little Stud

Yesterday (and so far this morning), Silas has been in THE BEST mood.  It is so nice when it happens, and I try to relish every moment.  Things are starting to warm back up around here, and I can only hope that spring and summer will bring us more good days.  (For some reason, spring and summer tend to be better months for him.)

Not that Silas has been in a terrible mood.  He’s just not really been himself much.  It’s the little things that only those who know him well would notice.  He tires more quickly, doesn’t talk as much, and gets frustrated very easily.  But yesterday, he was talking up a storm.  Autumn somehow missed her bus yesterday, so I had to wake Silas up from his nap for us to go and pick her up.  Silas started talking to the lady in the school office, and I didn’t think we’d ever get out of there.  J  It was fun though.  We also had a family “Sock War” last night before bedtime.  (Criss folded some of his socks into little balls and we all threw them at each other.)  Everyone had the best time.  Things like that can make Silas tired, and he can suddenly become very agitated – but not last night.  So fun!  If you have kids, you really must plan your own Sock War very soon.

This past week, I finally bought curtain rods so I could hang some curtains I had bought with my Christmas money.  We also have a picture we need to hang, so Criss had borrowed my dad’s stud finder.  Silas was looking at it this morning and held it up to his chest.

Here’s a closer look since the words are hard to see in the first picture.

“Stud found.”  It was just too funny!

Here’s hoping for more happy days to come.


Tuesday, March 15, 2011

Autumn's Many Faces

Autumn’s had an eventful few months.  January 26 was the 100th Day of School for her Kindergarten class.  The kids dressed like they were 100 years old.  Here’s what Autumn looked like that morning.  She was wearing a crazy wig along with a shawl and walked with a cane.

Autumn was admitted to the hospital on Friday, February 11.  She had gotten dehydrated while sick with the flu.  Here she is the next day – looking so much better.  She went home later that afternoon.

The weekend that Autumn was in the hospital, she was registered for the Mercedes Kids’ Marathon.  They keep track of the kids’ walking/running during PE time at school, and they complete the final mile the day of the race.  Criss was going to walk with her to make sure she made it okay.  Maybe next year…

The last picture is from this past week.  The Kindergarten classes performed a play entitled “Friendly Neighborhood Helpers” at this month’s PTO meeting.  Autumn was one of the vegetable grocers.  The kids were SO cute, and they did a great job!

Autumn’s smile will soon have a new look as well.  She went to the dentist this morning.  Her permanent teeth on the bottom are growing in behind the baby teeth.  We’re going to have to go back soon to let them pull the baby teeth.  Not looking forward to that one.

On a happy note, nearly two years ago, someone at Autumn’s preschool who had worked with Magic Moments gave us a form to apply for Autumn to receive a “wish.”  They were a little behind on funds at the time and told us it might be a little while.  Well, someone from Magic Moments left a message on my phone today saying that we had been approved!  We should be getting forms in the mail soon with more info.  Looks like we’re going to Disney World!


Saturday, March 12, 2011

Eosinophilic Disorders

I mentioned in the last post that Dr. W and I discussed the possibility of Silas’ problems being caused by an eosinophilic disorder.  At least once or twice a year I have someone bring up the topic and ask me if the doctors have ever considered that as a possibility.  I always tell them that I asked about it years ago and GI #1 said that wasn’t it – but now I’m not sure that he actually tested for it.  We see GI #2 in a couple weeks.  I am going to ask for the exact eosinophil counts from Silas’ previous biopsies.  If they’re not on the reports, I am going to ask for the biopsies to be reread and the eosinophils counted.

There are several different disorders that involve an overproduction of cells and can lead to someone reacting to numerous substances – food and non-food.  Over the past year, we have pretty much ruled out one of these – a mast cell disorder / mastocytosis.  One of the main medications used to treat this is Gastrocrom.  Silas reacted to the Gastrocrom.  Also, Dr. I (Immunologist) tested Silas’ tryptase levels, and they were not elevated (which they should be if it were a problem with the mast cells).  Eosinophilic disorders are along the same lines, with too many eosinophils somewhere in the body.  The one getting the most attention these days is Eosinophilic Esophagitis (EE or EoE).  It involves too many eosinophils in the esophagus, but the extra cells can be located anywhere along the digestive tract.

As far as treatment…  They begin by seeing if they can find an allergic cause (prick tests, patch tests, etc.).  If allergies are found, these items are removed, and hopefully the problem is solved.  It becomes more complicated if allergies cannot be found or if the child reacts to an abundance of foods.  If this is the case, the child may have to be put on a feeding tube and given elemental formula to give the digestive system a break and get rid of the extra cells.  Once all of the extra cells are gone, foods can be reintroduced one at a time, with the hope that you can find something that doesn’t trigger a reaction.  Some people end up with 15 or so foods they can eat.  Others end up with only one or two – or nothing at all.

At this point, Silas eats mostly chicken, millet, rice, and white potatoes or potato chips.  These things bother him the least – but they still cause him pain.  And, he cannot even eat these few foods without taking three medications daily.  That is another interesting thing about the Eosinophilic disorders.  They’re not sure why, but Singulair can lessen some people’s symptoms.  Silas has been on Singulair for a while now.  Not for asthma but because it helped his abdominal pains.  When I told the doctors this, they just looked at me like I was crazy.  Maybe I’m not so crazy after all.  (Well, maybe just a little.)

Here are some of the most helpful links I’ve found concerning eosinophilic disorders:

What Are Eosinophilic Disorders? - Here is an easy-to-read explanation of the disorders.

Life Without Food - This is written by a child who has the disease.

I will end with an excerpt from an article I found here.  It’s from a piece titled “In Your Own Words” by Michelle Racioppo.  While we do not know that Silas has an eosinophilic disorder, so much of this article mirrors our daily lives (though Silas does not have a feeding tube).  Reading the last paragraph brought tears to my eyes as I thought of Silas at his own birthday party watching everyone else eat the Spiderman cake he chose - knowing he would not be able to eat any of it himself.

This disease has more questions than answers. It truly seems so unnatural to ask a child to not eat food. To trial certain foods and then have to take them way again – It is absolutely heartbreaking…  But it is him who has endured the pain, the tests, the medication, the surgery, the food deprivation, the cravings, the Everything. It is him who is our Hero. I am humbled and honored to be his mother. We have watched him with his quiet strength, develop in his faith, grow in his character, shine with empathy for others.

If you saw Sam, you would never know unless we told you that he has this disease. You would surely never guess he had a feeding tube in his stomach. He runs, plays, wrestles like all 8 year old boys do. We are grateful that he “looks” and “acts” so normal. We are grateful for all of the “normalcy” he does have in his life: his friends, his brother, his school, his grandparents, his love of baseball and video games.

However, part of what children with this disease can face is discrimination, because they do look so good on the outside, some find it hard to believe they are really sick. These kids need our compassion and understanding. The damage and pain is ravaging them on the inside, in a place you cannot see. But live with an EGID child and you will know the truth. Hold them, as they cannot sleep at night because of the pain in their stomach. Follow them as they reflux and run to the bathroom. Watch them as they play hard outside and then collapse on the couch saying ”mommy my tummy hurts so bad!” Wait for the phone call (for the third time this week) from the school nurse to please come pick up your child as he is too sick to stay. Observe them as they fast for their next endoscopy procedure. Grieve for them as they put their face in the plate of family dinner that they are not allowed to eat, but just want to smell. Cry when they decline their best friend’s sleepover because morning will be too hard to not eat favorite waffles. Celebrate at a Birthday Party until you realize everyone can eat the Pizza and Cake, except for one. Then you will know. You will know the grief of watching what a child with this disease lives day in and day out. It is courage defined.


Tuesday, March 8, 2011

Dr. Weinstein - March 2011

Last week was our much anticipated visit with Dr. Weinstein.  He is the endocrinologist who specializes in Glycogen Storage Diseases.  He sees patients and performs research on GSD at Shands Hospital in Gainesville, FL, and is associated with the University of Florida.  If any of you reading came across this site because you or someone you know has GSD, you MUST go to see him.

The trip down on Tuesday was long - almost 10 hours.  But, to be five, Silas did well, and we arrived around 7:00 pm FL time.  We stayed at the Country Inn & Suites because it is the only hotel in the area with an indoor pool, and it is only about 3 miles from the hospital.  We didn’t have much spare time, but the pool was a good way to let Silas play a bit after riding all day and before going to the hospital.

Wednesday morning, we checked into the hospital about 10:00.  Not too long after that, we met with Dr. W.  I was encouraged because he was very committed to helping us find an answer before we left.  He wasn’t sure that Silas has GSD, but he thought it was a disorder of gluconeogenesis (I think that’s the right one).  The nurses put in an IV so they could do hourly blood draws while Silas was there.  With the IV, they could just poke him once and get what they needed from the IV line each time.

Silas has been to so many doctors and been poked so many times.  He was very hesitant at first and tried to scope out the situation.  However, Dr. W tries very hard to make the kids have a good time.  There is a play room on the hallway that the kids can use.  It has toys, games, videos, crayons, paint, etc.  There was even a Wii in our room.  The kids can also take one of the tiles out of the ceiling and paint it.  And, Dr. W often brought presents.  One time, Silas picked out a Christmas video from the play room.  Dr. W said, “You chose a Christmas video.  That means you get a Christmas present.”  Silas was thrilled.

I mentioned the ceiling tiles.  Below is a picture of the tile Silas painted.  He said it is him and Dr. W playing outside together.  He had Criss help him with the sun, but Silas did the rest.  Notice the dots inside Silas’ tummy.  He said that was his chicken nuggets and bread.  The nurses loved it and had us put it where they could see it from their office window.

Dr. W began by having Silas eat his usual diet.  Nothing abnormal was showing up in his blood work, so the next day (Thursday), we added in some of the foods that we know bother him.  Even with the food challenge, nothing was showing up.  Later that day, Dr. W told us that if nothing had happened by dinner, we would be discharged.  (Our visit was originally set for one night.  However, Dr. W had said we might add a night if needed.)  He said that if the problem was metabolic, there would have been abnormalities in Silas’ blood work by this point.  I felt sick at my stomach.  I had hoped that we would finally have answers and that someone would be able to help him.

Dr. W had a metabolic specialist from the hospital drop by our room as well.  The two of them believe that Silas’ low uric acid levels are a “red herring.”  The low levels were one of the indicators that Silas’ issues might be metabolic in nature.  They now believe this is a separate, unrelated issue.  Dr. W believes the answer lies within the GI tract, and that our GI doctor is the one who will have to find it.  That was difficult to hear.  Although I really like our GI doctor, he has never been aggressive about finding a diagnosis for Silas.  Even after Silas was in the hospital for 2 ½ weeks, he kept insisting it was IBS.  IBS does NOT cause inflammation!!!  We see him again in the next couple weeks, and we will just have to see how that goes.  Dr. W mentioned wanting to speak with him sometime, so maybe that will help.

Here is a picture of Silas with Dr. W just before we left.  They are standing under the tile Silas painted.  Silas is holding up some of the toys Dr. W had given him that morning.  They had kicked the ball around the hallway together.

It was late, but we decided to go ahead and drive all the way home that night.  We knew the extra foods Silas had eaten would start to bother him at some point, and we knew it would be easier to drive at night with him asleep for most of the trip.  We made it home about 2 am on Friday morning.  I coordinate the children’s choir at our church, and we had a lock in to kick off the new season that night.  I was tired, but it went well.

Silas had been feeling pretty good before the food challenge, so it didn’t send him completely over the edge.  He was more irritable Friday through Sunday, with Sunday being the worst.  The other strange thing is that Silas developed a rash all up and down the arm that they had put the IV in.  I didn’t notice it until Saturday.  He just reacts to so many things.

One idea that Dr. W and I briefly discussed is the possibility of Silas having an eosinophilic disorder.  I will have to save that topic for next time.

“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”  Psalm 73:26


Monday, March 7, 2011

Cozumel & Other Ramblings

In the past month, we’ve been in five different states and visited another country.  I’m going to try and catch up everything that’s been going on in this post – except for our trip to Florida.  That will need a post all by itself.

We started the month driving to Georgia for Autumn’s appointment at Medical Neurogenetics.  She was sick for nearly two weeks after that.  Her fever and symptoms would be gone for a day or two and return again.  After several more doctor visits, they decided to put her on an antibiotic.  Not that they could find any infection.  They just decided they had to do something to get her well.  That was good because it was time for us to leave for our cruise.  We really had not been sure that we were going to be able to go.  When I asked the doctor her opinion, she said, “Well, there are flights out of Cozumel every day.”  That was not very reassuring.

On February 17, we traveled through Mississippi and into Louisiana.  I really must ask – is there anything in Mississippi?  Just over the state line, there’s a larger city or two.  After that, you’re lucky to find a place to go to the bathroom – much less somewhere you can eat.  The Louisiana sign is always a welcome sight.

Criss and I greatly enjoyed the cruise.  We desperately needed to get away, and what’s better than people cleaning up after you and feeding you all day?  Besides that, we had a larger room this time, and that was a nice surprise.  We boarded the ship on Thursday, enjoyed a day at sea on Friday, visited Cozumel on Saturday, spent another day at sea on Sunday, and disembarked on Monday.

For our excursion in Cozumel, Criss and I chose to explore the ocean in a two person boat.  It was a blast!  Here’s a picture of us sitting in our boat out in the ocean.

After the boat ride, we had lunch and relaxed here:

Then, we walked through some of the local shops, and bought a coconut purse for Autumn, a shirt for Silas, and vanilla flavoring for our moms.  A big THANK YOU to Criss’ company for sending us.

We traveled from Alabama to Florida March 1-4.  That information will be in my next post.  Autumn is finally feeling better – though still sometimes more tired that usual.  She keeps wanting to take a nap at school during PE time.  J

Things are continuing to fall apart around the house.  The day before we left for the cruise, a plumber came to fix the water leak in the yard.  Someone from Alabama Power finally came by to test our meter and said it is working correctly.  So, we have a heating & air guy coming by the end of this week to see if that’s what’s causing the problems with our electric bill.  Yesterday, the front door lock broke.  (Picked up a new one today.)  For several weeks now, the washing machine keeps getting stuck and you return to find the clothes still sitting in a tub of water.  Our dish washer is leaking water, and it appears that we have two vehicles leaking oil.

Had to make a run to the grocery store this morning.  I’ve come to view Wal-Mart as a necessary evil in life.  I would avoid it altogether if I could, but it’s just so much cheaper.  I’ve been learning to watch the sales at Publix, etc., so I don’t go nearly as much as I used to.  However, when I have a lot of things I need to buy at once, there’s just no way around it.  Some of you may be wondering why I have such a distaste for the store.  Well, it used to be my favorite place to shop, but around here, all of the stores continue to go downhill.  Today, there were several “20 item or less” lines open, but ONLY TWO regular lines.  I’m glad Silas was being cooperative or we never would have made it.  After we’d been waiting in one of the lines for 15 minutes (with the cashier still barely visible in the distance), a third line opened, and we finally made it out of there.

If I were one of those moms who bribe her children to be good in the store, we might have left the store with two new sea creatures that are supposed to grow in water.  And, those two new sea creatures might be “growing” in the bathtub right now as I’m typing.  But really, what mother bribes her children with a toy just to be able to buy groceries?  Surely not me.  J

If only life were like a cruise ship…