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

Special Education & Student Teaching

Some of you may be wondering why I decided to student teach a second time.  So, I would like to share that story with you…

WARNING:  This may turn into a soap box.  J

My undergraduate degree was from Southeastern Bible College, so I graduated with a double major in Elementary Education and Biblical Studies.  After graduating, I taught first grade for six years at a Christian school, later leaving to stay home with my kids.  While teaching, I went back to school to earn my Master’s Degree (also in Elementary Education).

It was during those years of teaching in a Christian school and working on my Master’s degree that I began to have a great burden for students with special needs.  Because Christian schools do not receive government funding, they are not required to serve these students.  However, those with learning disabilities, attention disorders, and other “less severe” problems still make it into the classrooms.  Since I taught first grade, I could generally “get them through” to second grade.  I would help them during the school day or sometimes provide one-on-one help after school.  However, by the time these kids got to third grade or later, many of them just couldn’t keep up any more without extra services, and many would leave our school.  Some would even leave midway through first grade.  It broke my heart to see them go.  I loved them dearly.  The “unwritten rule” that I observed was:  “As long as you can keep up, feel free to stay, but don’t expect us to give you any special treatment.”  Now, you would never hear anyone say it like that, but that’s the way it was for the most part.  Yes, there was one special program that families could use – but doing so doubled their tuition, and it was only intended for students with learning disabilities.

This bothered me greatly.  For a while now, the public school system has realized their obligation to reach these students.  How can those who call themselves Christians refuse to help them?

Many of those who work in Christian education have been trained to object at this point.  They would say that the cost is too great.  I would argue that the cost is too great if we don’t help them.  And beyond this, if money is the ONLY reason, that is not a good enough reason.  If you look at Jesus’ life, who did He spend the majority of His time with?  It generally was not with those who “had it all together.”  The people He spent His life serving were the sick, the hopeless, those rejected or looked down upon by society – like the tax collectors and fishermen.  In addition, what are we teaching the kids in our Christian schools if they never come in contact with those who are different than they are?

For those schools that have realized the great need and begun to reach out to these students, the cost is often not as great as they feared.  I have seen various reports where schools discovered that while taking student with special needs into their schools, the other siblings in the family followed – thus filling the classrooms and offsetting the extra “cost.” 

Skip ahead a few months/years…  Criss and I take in (and eventually adopt) a foster child with delays and medical issues.  We work through years of Early Intervention, physical therapy, speech, occupational therapy, etc.  It comes time for her to attend school, and I have a great choice to make.  I graduated from a Christian school (and went back to teach at that same school for six years).  I can send her to this school or one like it – where she will be surrounded by the Christian influences I believe in - but not receive any help with her individual needs.  Or, I can send her to the public school system who is required to meet her needs but looses much of the Christian influence.  No parent should have to make this choice.  And it’s not about arguing over what’s best – public school, private school, or homeschooling.  It’s about allowing parents to have the choice about what best meets their families needs.  Families of children with special needs often have no choice.

I also I have a son with chronic digestive/allergic problems.  He is currently on an NG tube.  If we move to a permanent feeding tube, would I be able to find a Christian school to meet his needs?  Highly doubtful.  You see, it’s not just about kids with “severe” disabilities.  It’s the kids who may just need speech, PT, or OT services.  It’s about the kids with feeding tubes, diabetes, etc. that just need a nurse on the campus.  It’s about the kids who just need some help in a small group setting 30 minutes to an hour (or less) each day.

So, this is the reason that I decided to add the Endorsement in Special Education to my current teaching certificate.  In order to do that, I had to student teach again since none of my experience was in an “official” special education setting.

My ultimate vision would be to open my own Christian school where NO ONE was turned away for any reason.  I don’t know how or when this will come about – and I may never see it fully come to pass in my lifetime.  But for now, I can share my passion on this subject with you and others I come in contact with.

I could go on forever about this subject, but I will stop here for now. 

I had been home long enough that it was time for my teaching certificate to expire.  Since I had not been teaching and had no CEU’s, I needed to take 2 classes to renew.  I only needed 4 classes to add the Special Education Endorsement, so it was a good time to do it.

I appreciate anyone who’s stayed with this post ‘til the end.  We’ll move on to lighter topics in the coming days.  J

"As you did it to one of the least of these my brothers,

you did it to me."

Matthew 25:40

Janel