9 year old son with Crohns

[farmerswifey]

Hi Everyone, I've been reading alot of posts here and I'm so glad I've found this forum. I'm an Aussie mum and my son who is 9, possibly has Crohns disease. He has lost alot of weight and is very pale, so we did blood and stool work, thinking he may just be low in iron.

He is anemic and is iron is 2.3 (range 10-30), he is not absorbing any nutrients at all. He is small and very thin. He goes through periods that he is lethargic, and is sometimes has energy.

He doesn't have any tummy issues but randomly has blood on the toilet paper when he wipes.

He has a high faecal calprotectin level which apparently is a symtom of Crohns. He has had a colonoscopy (little inflammation), endocscopy (clear) a MRI (clear) and a camera endoscopy that we are waiting on for the results.

The gastro dr is 90 percent sure he has Crohns but wanted to do this one last test to check his small bowel.

It all makes sense. I am devastated, thinking I had 3 healthy children and now I have a child with a life altering disease.

I've been trying to read as much as I can, I'm emotional and so upset for him.

The drs have said they use EEN as a first step for Crohns kids (in Aust) so we are looking at that.

I just wanted to get all of that out. What I wanted to ask, is it possible for my son to have a mild case of Crohns, as he doesn't have stomach cramping etc,or would his mildish symptoms just mean he is at the beginning of it.

I really appreciate any comments...sad mum here x

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear about the troubles your son is having. It can be bad enough as an adult to receive a crohns diagnosis let alone when you are a parent with a little one facing this news, just know you have come to the right place for lots of helpful info and support :hug:

Please do also check out our parents forum as well so you can have a chat with the mums and dads here, they more than most can understand what you're going through at the moment: http://www.crohnsforum.com/forumdisplay.php?f=49.

I take it the docs do have your son on a treatment for the iron deficiency? From my understanding EEN can do a good job at calming the disease without the worry of meds and has a good success rate with kids so I will be keeping fingers crossed that he can be feeling well again soon.

Wishing you and your family all the best.

AB
xx

 

[Catherine]

Hi

I'm mother of 17 girl dx in January, also from Australia. Sarah first sign was anemia.

Hopefully with your son being caught early, he will get into remission quickly with en. There are lots of parents on the parents forum who children use or have used en.

As Sarah was already 16 at dx we went straight to an adult gi.

Many more experienced parents will along shortly.

 

[ellie]

Hi from another Aussie mum! I'm the "Chronie" in our family, but I have 3 young adult offspring, and can only imagine how difficult it must be to have a child who's struggling with health problems. Just wanted to say welcome to the forum - it's a supportive friendly group - and I'm thinking of you and your family..


HD

 

[farmerswifey]

Thank you so much for your replies! My son has had two iron infusions and I can definately see the difference in his stamina. They do this through the canula when he has had his procedures.

They also took a iron blood test last week so it will be interesting to see how this level is.

Thanks again xo

 

[Farmwife]

:dance:Another farm wife!:dance:

Hello and welcome,
Sorry to hear about you son.
Please feel free to join the parents forum.
I need all the help I can get with those city slickers.

Farmwife

 

[farmerswifey]

:dance:Another farm wife!:dance:

Hello and welcome,
Sorry to hear about you son.
Please feel free to join the parents forum.
I need all the help I can get with those city slickers.

Farmwife

Sounds wonderful, I'll post there soon, us farm wives have to stick together

 

[David]

Welcome to the community! I'm so sorry to hear about your son, I can't imagine how painful that must be My heart goes out to your entire family.

How long ago did the symptoms start? Did they do a biopsy when they did the colonoscopy and if so, what were the results of that?

Again, welcome. We're here for you.

*hugs*

 

[Tesscorm]

Hi,

I'm so sorry that your son is being diagnosed with Crohns... it certainly is heartbreaking to be told that news.

My son was older when diagnosed, 16 then and 18 now, and his treatment has been EN. It very, very quickly took him into remission. When diagnosed, he was in the hospital for a week on IV Flagyl (antibiotic) and began EN while in the hospital. He had lost approx. 25 lbs before diagnosis, within 3 months (six weeks of EN formula only and then reintro of all foods), he had gained over 30 lbs. After a week of being released from the hospital, he was back at school and within 2-3 weeks, he was back to almost all his normal activities (hockey, etc.). It really was a fantastic treatment for him.

I'm sure you were told all about EN by your GI but... it has a comparable success rate at inducing remission as steroids, has anti-inflammatory properties, provides all necessary nutrition while allowing bowel rest and has NO side effects!

My son has continued to use EN as a maintenance treatment, however, inflammation is returning so we may have to consider other meds. (Unfortunately, EN does not have as high a success rate at 'maintaining' remission as do medications. )

As far as his symptoms... as you'll learn, crohns symptoms vary greatly from person to person as do the treatment options. I also don't believe that your son is necessarily 'only at the beginning' of worsening symptoms, as with the presentation of symptoms, any change in the disease also varies greatly from person to person.

Please do drop by the Parents of Kids w/IBD subforum - there are lots of very friendly and knowledgeable parents who are always willing to share their experience and offer their support. :ghug:

 

[Keepingfaith]

Welcome to the forum! :ghug: It is okay to vent! Let it all out!

EN is used in a lot of countries(especially for kids)to treat Crohn's. It is mainly effective in the small bowel/upper GI. Many people on the forum have used it with success!

I have a friend with mild stomach cramps(who is 17)and her primary symptom was severe anemia. She gets iron infusions weekly and still ocassionally needs a transfusion. They couldn't find much on her scopes but the pill cam showed Crohn's in the small bowel. So it is possible to not have many GI symptoms and still have Crohn's!

 

[DustyKat]

Hi farmerswifey and :welcome:

I am so very sorry to hear about your boy...:hug:

Do you have the test results and a firm diagnosis or is it still too early?

EEN certainly would be the right path to follow straight up with a solid maintenance plan in place when that treatment is due to decrease or cease.

What I wanted to ask, is it possible for my son to have a mild case of Crohns, as he doesn't have stomach cramping etc,or would his mildish symptoms just mean he is at the beginning of it.

Unfortunately, like everything with this disease, it is highly individual and for some people symptoms don't necessarily equate to disease severity. There are some that have little symptoms and yet their disease ca be silently raging away BUT it is also quite possible that symptoms do match the disease and your boy's minimal symptoms are in fact a sign of mild disease.

Has be been growing normally or has that slowed down and/or stopped?

Dusty. xxx

 

[michaelearnest]

Sending prayers and hugs to your 9 year old, keep us informed.

 

[farmerswifey]

Hi guys thanks for your replies (and Michael, I've liked your fb page). We are still waiting on the results of the pillcam endo, hopefully this week we will get the final results. I just want a diagnosis so we can move forward.

My son started losing weight about 12 months ago....I initially just thought it was a low iron issue....little did I know.......