Wait and see? Really??

[Mehita]

I stumbled upon this forum while researching answers to my questions about my son's Crohn's disease. Wow! Finally a network of people who may not think I'm crazy and overreacting!

My son is 11 years old and was dx with Crohn's via biopsy and Celiac disease when he was 8 years old. The GI doctor never felt the need to put him on meds and since the gluten free diet for Celiac is pretty low fiber, he's essentially been managing the Crohn's with a low fiber diet for the last three years.

This summer the vomiting started. First monthly, then bi-weekly, then weekly, then several times a week. His lab work came back with some slightly elevated inflammation markers but the doctor said it was normal and sent us home. Thank goodness I base 90% of my decisions on my mothering instinct because we got a second opinion and found out DS is flaring and has 6" of partially blocked small intestine due to a stricture! The MR enterography showed some inflammation, but not a ton, so it's quite possible scar tissue may be responsible. Hmmm... three years of untreated Crohn's?

He was put on 40mg pred, prilosec, and a liquid diet and has responded very well. We are now tapering the pred over the next month and just started 750mg Pentasa 2x/day. He also just started eating solid food again this week (low fiber and gluten free) and, thankfully, it's staying down.

The new gastro doctor said now we "wait and see". Is this how it really works? Will we only know if he's in remission based on a lack of symptoms? If symptoms come back, does that likely mean the stricture is due to scar tissue and surgery is the only option? Isn't 6" of small intestine a lot for a 65 pound kid to lose?

And can someone explain the enteral nutrition to me? DS is just a little guy, barely on the growth charts for height and weight. Should I ask about this?

Any other tips or suggestions for us?

Sorry for going on and on. I'm just frustrated, worried, anxious... and being his mom, I just want to fix it all for him.

Thanks for reading!

 

[izzi'smom]

Wow, you have been through a ton! First of, ((hugs))!
We have used a similar treatment plan, and were also told to wait and see. When our symptoms went away (bloody diarrhea) it was pretty obvious, but it was never for long enough to worry about anything lol! We haven't had surgey yet, so I can't help there.
Izzi's treatment (Orapred, Pentasa, and Remicade) wasn't working, which is why we are trying EN. While it can have the added benefit of weight gain, it has been shown in some cases to be as effective as steroids while being used, although it seems that when some patients stop doing EN the symptoms come back. THere is a whole thread that describes it much better than me, though
We are on week 3, and she has stopped losing weight and has a few less bm;s and less accidents, although urgency and pain seem to be the same. Her doc hasn't restricted her diet, though, and I have heard that you have to do EN only to get results.
For perspective an adults small intestine is about 22' long. I don't think surgery is ever an easy option to consider, but if I though that it would help... Good for you for getting a second opinion! and welcome!

 

[DustyKat]

Hi Mehita and :welcome:

I'm so sorry to hear about your boy...:hug:

Unfortunately there can be a bit of wait see when it comes to meds working so you do need to look to bloods tests and to Lukas' symptoms and general well being but you will know if there is improvement or not.

A stricture will to some degree already be scar tissue so the aim will be to reduce whatever inflammation is there now and then see what you are left with. The small bowel is about 22 feet long in adults and children so 6 inches isn't a lot but if he does need surgery a little more than that will be taken out. Both of my children have had small bowel resections and I still hate that they had to have them! :voodoo: But it saved their lives so it was a no brainer in their case.

Your son's lack of growth is most likely due to chronic inflammation, it is not uncommon for children with Crohn's to have this, coeliac will do that to, because of malabsorption but once he is fully in remission the tables normally turn and he will catch up.

We have an EN forum here...

http://www.crohnsforum.com/forumdisplay.php?f=161

Have a good browse through there as there is loads of info and experience!

Keep asking questions of us and your doctors and read, read, read...knowledge is power!

Good luck and welcome aboard!

Dusty. xxx

 

[David]

Hi Mehita and welcome. I'm so glad your tween has such an amazing mom I'm sorry you, he and the rest of your family are having to go through all of this

In addition to what has been said above, that your son is on the low end of height and weight makes me wonder about malabsorption of essential vitamins, minerals, proteins, etc. I would personally suggest that, at the very least (the more the merrier as far as I'm concerned), his vitamin B12 and vitamin D (especially since you're in Minnesota) be checked. Both are commonly low in people with CD. We have a vitamin and mineral deficiency database that we're working on and here is a great thread about vitamin D and Crohn's Disease.

We're here for you anytime! I wish you and your son all the best

 

[Dexky]

Welcome Mehita! I can't really add anything but my son's experience with growth after treatments began has been amazing. I know there has to be some "wait and see", I just hope it isn't too long for you. Let us know how he's going!

 

[ChampsMom]

Hi Mehita -

Ditto to all that has been said - I stumbled upon this group about a year after my son was diagnosed with Crohns.

The other tip I would offer is reduce his stress. It's crazy to think that our kids have stress, and I'm amazed at how well they appear to deal with it. But my experience says that though they appear to handle it well - their bodies tell a different story. My son has improved like crazy since we have focused on removing his stress (though it's not possible to remove all of it, we do what we can).

Also and I don't know if anyone else has experience with this but my children are in therapy (ours came about not because of the Crohn's but because issues with my ex-husband who was abusive in the home and once I was able to get him out of the house I got the boys into therapy). The cool thing about it, is the stress relieving techniques they learn, the one on one attention to speak with someone else about issues (and for my Alex he does talk about his Crohn's, how he feels around other kids who don't know, or do know, how to handle kids who are stinkers about it - it's been great!)

It's just a thought - but I have found it to be VERY beneficial for my son.

Good luck! God Bless! The folks here are awesome! I've been tremendously blessed by their knowledge as I know you will be too!

Take care!

 

[Mehita]

Thanks for all the advice. So far, Lukas is still holding steady - no vomiting in over a month! No tummy aches, no unusual bathroom issues, gaining weight (thanks to Ensure), and maybe it's just my imagination, but I think he's looking a bit taller

 

[LindaS]

Hi Mehita. I hope that Lukas continues to improve. As Dusty said, many of the medications for Crohn's can take weeks or even months to start to work, so sometimes that is the reason for a "wait and see" approach.

 

[ChampsMom]

Thanks for all the advice. So far, Lukas is still holding steady - no vomiting in over a month! No tummy aches, no unusual bathroom issues, gaining weight (thanks to Ensure), and maybe it's just my imagination, but I think he's looking a bit taller

Yeah!!! Great News! :thumleft: Glad he can do the Ensure, my son couldn't handle it. We also tried Boost (not sure if your GI has recommended it), if you son gets fed up with the Ensure, it's an alternative - more juice like than milky.

 

[Dexky]

Good deal Mehita! If he's gaining weight, I'm sure his body knows what to do with it. He'll be shooting up in no time