Awaiting diagnosis-high anxiety

[lcpalmer]

My 12 year old son is currently prepping for endoscopy and colonscopy two days from now. The doctor basically already told me to start reading up on the ccfa.org site as they are pretty sure it's Crohns. I'm hoping for some definite answers on Friday after scopes. The not knowing is hard. I'm dreading tomorrow with the prepping for the colonoscopy and I feel so sad for my son to be going through this. I keep telling him and myself that it could be much worse though. I'm hoping for a definite diagnosis with a treatment plan come Friday but maybe that is overly optimistic. Although my son isn't feeling terrible, I would love to see an increase in growth and energy in the near future!

 

[DJW]

Hi and welcome.

I was diagnosed at 12/13. It's scare. But keep in mind, if it is Crohn's, there are some very good treatments available.

My other suggestion is to be careful what you read on the internet. It had a disproportionate amount of worse case scenarios. Mainly because healthy Crohn's patients are out living life.

Sending you both my support.

 

[my little penguin]

Welcome
Pre dx is the worst since you don't know what your fighting or how to fix it
We were blind sided with Ds dx
We were told probably allergic colitis prior to the scope
Gi came out said all looked good probably just a food intolerance
A week later biopsies showed acute and chronic inflammation throughout his entire Gi tract from top to bottom as well as multiple granulomas .
He was 7 at dx and is now 11 so four years of the dance
Finding the right meds is key adding een or supplemental formula early is also key
What meds work for one may not work for the next
You get to a point the potential scary side effects don't really matter since they are only a possiblity and what will happen if the disease isn't treated is a given it known .
Ds has gain 42 lbs and grown 8-9 inches since dx
Prior to that weight and growth had stalled
He is currently on humira /mtx and partial enteral nutrition plus the crohns exclusive diet
Wishing you the best on your scope

 

[CrohnsKidMom]

Welcome to the forum, but sorry your son is suffering. My son was dx'd 2.5 yrs ago at age 8. It is really overwhelming in the beginning, but better days are ahead. The biopsies from the scopes should confirm the dx and then a treatment plan can be implemented. Good luck with the scopes and keep us posted on how your son is doing.

 

[crohnsinct]

Just fair warning. If it is Crohn's it could sometimes take a while to hit on what works. Just be patient and reaiize that each step is a step closer o finding what works. For my daughter dx'd in January we are still trying to find what is going to work for her. It is a process and like MLP mentioned what works for some doesn't always work for others. Add to that insurance requirements and there are some hoops you have to jump through before moving on. It took my first daughter just 6 months to find what works. 3 years, 8 inches and 40 pounds later I am happy to say not one flair since we found what works for her!

Good luck with the prep. The kids in general actually do very well with it and are rock stars!

Good luck with the scopes. I hope they give you definitive answers good or bad. Unknown and no direction is the worst.

 

[pdx]

Hope that the prep and scope go well for your son. Like you, I was very anxious in the days leading up to my daughter's scope, but afterwards it was a relief to finally know what we were dealing with.

My daughter was also 12 when she had her scope, and we set up our basement family room so she could sit watching TV just a few feet from the bathroom, and we also bought her a fairly large lego kit, and set that up right next to the bathroom too. Keeping her mind off the prep, while keeping her close to the bathroom, helped make the prep day not so bad. Some kind of soothing cream also helps keep the diarrhea from burning so much.

 

[Maya142]

Wipes instead of toilet paper made a big difference! Like pdx, we used distraction (ipad in the bathroom ) and that helped!

Good luck with the scopes! It is always such a huge relief to know what is actually going on. The sooner he is diagnosed, the sooner he can be treated. Hang in there!

 

[Farmwife]

Hi and a warm welcome.
I'm another Michigan mom. My girl is 6 but dx at 3. It's true the first year is hard but you'll get a new normal son.

Out of curiosity how far behind the growth curve is he?

I know we have other members kids that their only symptom was lack of growth.

I hope the scopes go well.
Also be warned after the scopes you might have to stop lot at restrooms on your way home.

 

[lcpalmer]

He isn't off the growth curve but has slowed down quite a bit. He is also anemic and CT scan showed inflammation of small bowel. Prep went much better than expected. Now I am getting nervous about sedation...

Hi and a warm welcome.
I'm another Michigan mom. My girl is 6 but dx at 3. It's true the first year is hard but you'll get a new normal son.

Out of curiosity how far behind the growth curve is he?

I know we have other members kids that their only symptom was lack of growth.

I hope the scopes go well.
Also be warned after the scopes you might have to stop lot at restrooms on your way home.

 

[Jmrogers4]

Good luck today, hope scopes give you definitive answers and you can move forward with a plan. My son was diagnosed at 10 and started off with the slow growth curve but then pretty much stopped completely. It was not until 4 years later and lots of different meds that we found the one that works for him. I will say that after the first year the meds took care of his symptoms besides the lack of growth so he generally felt well. They just weren't quite enough to knock out everything so what I guess I'm saying is trust your momma instinct and if you feel it's just not working enough, keep pushing until you find something that does.

 

[DustyKat]

I hope all went well lcpalmer and you have some clearer idea as to what is going on with your lad. :ghug:

Dusty. xxx

 

[lcpalmer]

Scopes confirmed crohns. Biopsy results
coming this week.Dr started him on steroids, which I don't love. We have to decide in next couple weeks between 6mp and nutritional therapy. Love the idea of nutritional therapy (dr said he could still eat during the day), but not sure I can convince a 12 year old to insert feeding tube every night.

 

[crohnsinct]

So sorry about the diagnosis! :ghug:

Both of my daughter's did "nutritional therapy". It you are talking about Enteral Nutrition, from everything I have read and heard and experienced, this therapy really only works if it is exclusive or near exclusive (10-20% food). My daughters did Exclusive Enteral Nutrition. They ate and drank nothing but the formula and water for 6-8 weeks with a very slow reintroduction of food. There are many others on here who did tube feeds and actually found it a lot easier than they initially thought.

The only thing is that EEN typically only works for while you are on it. It is typically used instead of steroids to induce remission and it is a tad better than steroids as it actually heals the mucosa. However, since it generally only works while on it, the docs start a maintenance med ie: 6MP, Azathioprine, Methotrexate, Biologics to take over once the nutrition therapy has ended.

There is a great book and a fast read about Enteral Nutrition. Beat Crohn's. Maybe see if you an pick that up at your local library. You can also have a peak around here in the Parents section for the thread's on EEN and also maybe in the treatment section.

I think there is a video presentation from a doc at CHOP. I will see if I can find it for you. They have been doing some experimentation with 50/50 or cycling on and off EEN for a number of months at a time and had some success.

The way I presented it to my kids was a "let's try" approach. If they hated it and couldn't continue they always knew they had the steroids as an escape clause. You would be surprised at what a kid desperate to feel better is willing to do and after the first few days what a non event things could be for them.

 

[crohnsinct]

The video link is in this thread and there is some discussion as well. FWIW we did EEN with my second daughter instead of steroids to induce remission. It worked great. We also started Methotrexate at the same time. Fecal Calprotectin of 51 at the conclusion of EEN. WE slowly introduced food and at the 50/50 mark her FCP climbed to 250...this was even with therapeutic Methotrexate levels. We waited a little longer and it eventually hit 700.

http://www.crohnsforum.com/showthread.php?t=73104

 

[my little penguin]

Second that
Ds did 9 weeks of een ( peptamen jr drank it all orally - Gi agreed to have him drink it vs tube ) no food started 6-mp at the same time
Never got to remission once food was introduced vomiting started again.

Had to stop 6-mp after 8 months due to rising liver enzymes .
He then went to mtx plus Pred
Then switched to remicade where he finally got relief

He is currently on partial en plus crohns exclusive diet
Plus humira /mtx
He drinks peptamen jr orally and has an extremely limited diet
This has kept his crohns in check when combined with humira /mtx

I will say nutritional therapy does not work as maintencd alone when the calories exceed 10-20% if you are given a free diet ( eat anything)
The diet Ds is on is different but is not being used as monotherapy but as a boost to the humira /mtx since he has been on the same dose for 2.5 years but gained 30 + lbs so getting less meds each injections

Pred is the drug you will love to hate
It works miracles but has bad side effects and takes forever to get off it without causing another flare .
Hugs

 

[momofkkcg]

I'm sorry to hear of the diagnosis. My daughter has her colonoscopy and gastroscopy tomorrow. I would like to finally know what it might be...but it's scary....