A bit of good news

[dad_01]

My 11 year old son was diagnosed with crohns last year. He basically presents with growth failure. He was off the age / weight chart last year but has gained 15 lbs and is now on the charts, which he is very happy with (still has a way to go, though).

He uses a feeding tube at nights, which is very very challenging. Especially now that he seems to have a painful sore inside one of his nostrils (will need to see an ear / nose / throat about this).

He feels sort of bummed out sometimes but he has tremendous fortitude.

Not wanting to sound like a bragging parent, but tonight he had his first little leage baseball game of the season. He played shortstop - a challenging position. He was up 3 times and got on base two times with hits, stole four bases, scored two runs and had two rbi's. (Sorry for all this baseball technical talk for those not familiar with baseball).

And, at his shortstop position, he made a play that his coach said was the best play of the game.

I'm very happy for my son. Sports is one of driving forces in his life, and being able to participate in sports provides a strong incentive for him to endure a lot of the discomfort that his treatments give him.

I apologize again if this comes across as a bragging father; I was just so pleased that I thought I might make this blog-type of entry.

Cheers.

 

[Jeff D.]

Hey thats awesome. Sports are a big motivator to get better quick I must say.

 

[michels1]

Thats wonderful. No need to apologize, you have every right to be proud and brag about your little guy!!

 

[BWS1982]

Ditto. I'm really happy for you guys, and glad that you're there for him, it's important (for a dad to be there).

 

[Guest]

fantastic news, and how lovely to read something so nice and positive! go ahead and brag, your little guy has done really well, and this is something for him, and you, to be very proud of

 

[Kev]

Fantastic news... And never feel the need to apologize about being a 'bragging' Dad. Far better to brag about one's children to the high heavens than to remain passive or quiet about their accomplishments. Our children deserve our praise.

 

[dad_01]

I hesitated to post this, for fear of giving the impression that winning something, like an athletic event, was important. Of course it is the participation, the attempting, that is most important. I was just happy that he could feel a sense of accomplishment in something he values so much.

In contrast, it is the postings on this bulletin board about difficulties that I feel make this bulletin board so valuable. The ability to see that you are not alone in having difficulties, and the sharing of information, and often just simply the ability to verbalize difficulties, is what I think makes this bulletin board so valuable.

 

[Jeff D.]

What are you talking about winning is everything.

I like to heat of people with IBD succeed. It's a great story and something that is good for us to hear.

 

[Kev]

Well, I'd have to disagree with my young friend Jeff... 'living' is everything. Winning is just a way some people mistakenly keep score.. However, I do agree that positives are worth recognizing, celebrating... Tho we have to deal with very 'serious' matters at times doesn't mean we should lose sight of the importance of life outside of IBD. Celebrate your sons life, his achievements; don't think of them as trivial. In reality, it 'SHOULD' be IBD that we trivialize; it isn't worth anything; it costs us sooo much... Heck, I'd trade mine for a planters wart anyday... ;-)

 

[dad_01]

Dealing with crohn's this past year has been very emotionally and physically taxing for my son. He realizes that it is not something that is ever cured, but just managed, if your lucky.

I just thought it might be nice to share a very positive experience he had in something he loves, despite having crohns. I think for him it may be sort of like a mission - proving to himself that having crohns doesn't mean the end of an activity that is so central to him.

 

[AbstractDonut]

So how is your son doing IBD wise?

 

[dad_01]

Well, it's a physical and emotional struggle. He was 15 lbs below his weight chart last spring; since then he's gone from 47 lbs to 62 lbs - a gain of a third of his body weight.

He's still on the small side and light but his energy level is much much better than last year.

He's on a feeding tube - a tube that we feed up his nose and down his throat into his stomach every night (and take out every morning); we hook him up to an intravenous system which pumps 1000 ml of this special nutrient into him while he sleeps.

It's a big effort to get the feeding tube into him every night but he wants to do it (for now). Suprisingly he pushes for it more than I do, but not sure how long this will last. Plus he's on pentasa and iron supplements.

We're also looking into alternative diets - something called specific carbohydrate diet - and are considering having him try it sometime soon.

 

[AbstractDonut]

The diet can help, though it is really hard to follow correctly and takes a while before it really heals you. If he is gaining weight what he is doing it sounds like he has a pass for the moment.

 

[BWS1982]

Hopefully the iron supp is Rx/monitored/recommended? Just concerned about toxicity, as iron is a tricky mineral...

 

[dad_01]

The diet can help, though it is really hard to follow correctly and takes a while before it really heals you. If he is gaining weight what he is doing it sounds like he has a pass for the moment.

We're anticipating trying the diet but an alternative nutritionist we've seen said he might actually lose a little weight in the beginning so we want to get a few more pounds on him for some cushion first.

 

[dad_01]

Hopefully the iron supp is Rx/monitored/recommended? Just concerned about toxicity, as iron is a tricky mineral...

Yes, the iron is reccomended by his doctor. It is Fe Tabs / ferrous sulfate.