Dr. M - June 2011

Silas saw Dr. M in South Carolina on Wednesday.  We drove there on Tuesday, saw Dr. M on Wednesday, and drove back that same day.  Thankfully, they were able to get us into the Ronald McDonald House, which saved on hotel expenses.

At this point, it’s difficult to say whether or not Dr. M will be able to help us.  He is a GI doctor who specializes on Eosinophilic Disorders (EGIDs).  What I did like is that he seems to be more proactive than our current GI doctor.  There was not enough information for him to determine whether or not it is an EGID.  If it is, it would likely be EGE (eosinophilic gastroenteritis).  EGE involves too many eosinophils in the stomach and small intestine.  Dr. M said that those with EGE often have elevated eos in the blood along with asthma or eczema.  Silas does not currently have problems with any of those things.

Part of the problem is that while they have developed criteria to diagnose EE (eosinophilic esophagitis), they have not yet developed criteria for diagnosing the other EGIDs.  Since Silas’ eos numbers were elevated but not extremely high (in his previous scopes), it’s difficult to say if that is the real problem without set numbers for diagnosis.

Before we left, they did some labs.  One thing they were going to check for is porphyria.  The main result of the visit is that Dr. M wants us to return for a longer visit.  First, he wants to do another endoscopy and colonscopy.  Silas’ last scopes were three years ago, and they were all done while he was on formula (which would have reduced the number of eos).  Dr. M also wants to redo the hydrogen breath test for fructose malabsorption.  His office has a test that is more thorough than the one done previously.  Finally, he wants us to see the allergist that he works with who does patch testing.  (Silas no longer shows allergies through blood tests or skin prick tests.)

We will have to be there at least four days in order to have all of this done, but we won’t be doing it any time soon.  Because Silas is more reactive in the winter, Dr. M wants us to wait to run all of the tests.  He wants us to return when we will be most likely to see the problem.  He doesn’t want to force sickness but instead catch Silas when he is naturally having more problems.  So, that will most likely be November or December.  And again, we wait…

He wasn’t overly concerned about Silas’ nutritional intake, but he did give us some Neocate Splash to try.  It’s basically flavored elemental formula – still supposed to be pretty nasty, but for someone who can’t have sugars, Silas was thrilled to have something new (and sweet) to drink.  It will be very interesting to see if he’s able to tolerate it.  Although it’s elemental and hypoallergenic, it still has 10 grams of sugar per box.  He’s been doing so well that it will probably take a little while to know for sure.  (Not all of his reactions are immediate – especially with something new.)  He drank the first box yesterday and a second today.  His eyes were very puffy when he woke up today, but I don’t know if it was the new drink or something else.  Only time will tell.  Of course, the doctor only gave me three, so I will have to buy more (at $115 a case) to continue the trial.

Until next time…

Janel

Twelve Years

Last Sunday, June 19, Criss and I celebrated our 12^th anniversary.  Since our anniversary and Father’s Day overlapped, we celebrated on Saturday and had dinner with our dads on Sunday.

We have season passes to Alabama Adventure but rarely get to ride the “big” rides because our kids aren’t old enough yet.  So, we left the kids with the grandparents and spent the morning at the park.  We had a great time.  Going to an amusement park does, however, make me feel like I’m getting older.  I used to love riding everything they could throw at me.  Now, I don’t enjoy being thrown around and dropped like I used to.  J

That night, we ate dinner at Amore Italian Restaurant.  I fell in love with the place from the moment we walked in the door.  It’s very small, with only about 10 tables, and is lit mostly by candles.  The atmosphere is great and the food was superb!

Criss, “I thank my God upon every remembrance of you” (Philippians 1:3).

Janel

Beach Pictures

Now for some pictures from our beach vacation.

They said Autumn could get in the ocean with her cast, but we still covered the top and bottom so sand wouldn't get inside and irritate her skin.

We had a blast on this dolphin cruise.

The kids even got to drive the boat.

 Janel

Easter Pictures

I never posted any of our Easter pictures, so I will do that first.  Here are the kids in their Easter outfits.

 

They had a great time hunting for Easter eggs.

  

Nana & Papa gave this slip 'n slide to the kids for Easter (since neither can eat the candy in Easter baskets).  Silas had seen it in the store a few weeks earlier.  He loved that it had the little floats to slide on.  He's never liked sliding on his stomach because it makes his stomach hurt.  But, when he saw this slide, he said, "Look!  It won't hurt we tummies!"

Next, beach pictures...

Janel

The Happy Couple

Today was the kids’ last day of VBS at our church.  Since returning to the house, they’ve been playing pretend - mostly doctor.  (I’m currently wearing a “cast” they made for my foot.)

Just a few minutes ago, they came to the living room and said, “Look!  We’re getting married.”

Just had to share this picture.  Notice that Silas is the one holding a flower.  J  Hope it will make you smile like it did me.

Janel

A Quick Update

The day after Autumn got the cast on her arm, we headed for the beach.  That was actually the only reason that our pediatrician went ahead and sent Autumn to the orthopedic doctor.  She knew we were about to be gone for a week and didn't want us to have to deal with anything while we were gone.

Our week in Gulf Shores was really the best we could have hoped for.  Autumn's cast was waterproof, so she could get in the pool and the ocean.  (Salt water was fine, but no lakes, rivers, etc.)  We just had to run water through it each time we finished swimming.  She handled the whole one arm thing like a trooper.  She's used to body parts not always working like they should, and she's very good at adapting.  I always say that she's very resourceful.

We also restarted the leukovorin while we were gone.  The low dose is not affecting her as badly as the original doses, so we're praying we will see positive results after she's been on it for a little while.  I'm also looking for a CoQ10 that I can buy at the high dose she needs and not have to spend a small fortune every month.  The brand the doctor in Atlanta recommended was going to cost over $300 a month.  I've found another brand that we can get for around $100/month, but I'm still hoping to do better.  It’s considered a supplement, so insurance won’t cover it. 

She's not been walking quite as well this past week.  Don't know if it's the new medicine or if she just over-exerted herself swimming every day.  With Mito, there is a fine line.  You want to keep them active so they don't lose function.  At the same time, you don't want to work them too hard or their body just can't handle it.  It's so bad that she fell down the last 3-4 front porch steps yesterday.  Luckily, she was fine.  I figured they'd really flag us at the hospital if she ended up with two casts at the same time.  Oh my!

Good news!  Today was the follow-up for her arm, and THE CAST IS GONE.  Horray!  Horray!  The doctor said the type of fracture she had was a minor one and tends to heal quickly.  We’ll just hope for no more accidents.

Silas enjoyed the beach as well.  He often tires very easily and won't swim more than an hour or so, but this year, he really had a blast.  The activity and heat made his stomach hurt more than it has been, and he even threw up in the pool one day :-(  However, as a whole, things went well.

When we returned, we had received a letter from the GI doctor in South Carolina.  Silas' appointment is just two weeks away.  I hope you will be praying with us about this one.  We need definite direction and someone who can help us long term.

I need to post some pictures, but I'll have to do that later.  Have a great week!

Janel