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Crohn's Disease Forum » Your Story » Just diagnosed -struggling with acceptance


06-29-2014, 12:42 AM   #1
jamesmom
 
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Just diagnosed -struggling with acceptance

My 11 y/o son was just diagnosed with Crohn's Disease.
For us, this adventure began back in February 2014 when he developed a fever one day. He had no other symptoms. I did not treat because he refuses to take medicine, and it went away in a few hours. A week or so later, it happened again. He developed a fever which lasted for a few hours and it went away by itself. This continued for a few weeks, and then stopped. He went for about 3 weeks without a fever. When the fevers returned, they became more frequent. He started having a fever every 3-4 days. Still, with no other symptoms. Then one day I had to weigh him for a camp application and discovered that he had lost 7 lbs, which was about 10% of his body weight. Took him to the pediatrician who ordered a chest x-ray ( which was normal), a tb test (negative) and blood tests. Primary findings from the blood tests were significant iron deficiency, high sed rate and high crp. She suspected an autoimmune disorder and referred us to a hematologist or a gastroenterologist. I made appointments with both, but was able to see the hematologist first. In the meantime, fevers became daily events. He would wake with a normal temperature, and by the late afternoon he would have a fever. Temperatures were in the 101 to 102 range, but a few times went as high at 103.6. Still not giving fever reducing medicine because he won't take it. He would sometimes get up in the middle of the night drenched in sweat. Finally saw the hematologist who said, it's not cancer, probably an autoimmune disease. See the GI doc and come back to me if you don't get an answer there. Finally saw the GI, who said symptoms are consistent with Crohns, lab tests are consistent with Crohns, we need to do stool tests and schedule a colonoscopy and endoscopy. In the meantime, still having daily fevers and lost 4 more lbs and still no other symptoms. Interestingly enough , he was fever-free the day before the procedure when he was on a clear liquid diet, and fever-free, the day of the procedure when he had to fast for half the day, and fever-free the day after the procedure, when he ate normally. After the Colonoscopy/endoscopy, the GI said there were lesions in the terminal ileum and esophagus and it's definitely Crohns. She said we needed to wait for the biopsy results before she could prescribe a treatment plan, but in the interim she put him on an adult iron supplement (Slow FE) and 750mg of Colazal. Finally, on june 26 I met with the GI who said biopsies showed the disease to be in the stomach, terminal ileum, cecum and ascending colon. Apparently, the found granulomas which makes this diagnosis definitive.She is sending him for an MRE and she wants to treat with budesonide and 6MP. We started on the budesonide, but not the 6MP. The diagnosis is so clear-cut and obvious to the doctors and I guess I should be grateful for that, but I keep thinking, how can this be Crohns- he doesn't have diarrhea, or abdominal pain or vomiting or bloody stools. How can he have Crohns disease without the primary symptoms?
06-29-2014, 01:53 AM   #2
Roy1989
 
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I'm sorry to hear about your son, this must be quite a scary time for you all!

As always, a diagnosis can bring some relief after a period of not knowing. But it raises so many more questions.

Crohn's can present very differently for everyone. Fevers can be reasonably common during a flare. Weight loss is also very common, and should be monitored very closely in somebody so young (as I'm sure you've been told). Before I was diagnosed I always attributed my slim build to a fast metabolism. Once I started treatment at age 23 I gained nearly 10kg.

From what you have reported, the Crohn's diagnosis seems quite clear (please note that I certainly have no medical background). Crohn's can affect the entire gastrointestinal tract from the mouth to the anus. This means that even while you're flaring, you may not necessarily have the classic symptoms of diarrhea, flatulence etc.

I sincerely hope that you get some quality answers soon and the treatment is effective. Remember, an appropriate treatment regime can take some time, but there can be large periods of remissions where patients can even be asymptomatic and lead a completely normal life.

Welcome to the forum! - I'm very new myself, but it's a great resource!!
06-29-2014, 05:40 AM   #3
DJW
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Hi and welcome.

I'm sorry to hear your sons ill. Colonoscopy with biopsies are the most reliable test. Unfortunately with this disease it presents differently with everyone. I had no pain or blood. I lost a lot of weight.

We have a great group of parents on this site. There is a parent subform also. I'm sure they will be along soon.
Sending you and your son my support.
__________________
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
06-29-2014, 12:59 PM   #4
Momtotwo
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jamesmom- I'm sorry to hear your son has been sick and has been diagnosed with Crohn's. It's good to have an answer and a treatment plan, but I know how difficult it is to hear that diagnosis.

My son did not have diarrhea or abdominal pain. He had rare streaks of blood on tissue but not bloody stools. He gained three pounds and grew a few inches since his annual check-up the year before. His pediatricians never suspected Crohn's. His symptoms were much more vague, and if I go through the list of symptoms on most medical sites about Crohn's, it's hard to believe he has it. But the scopes showed it. The biopsies showed chronic inflammation. A second opinion at a major teaching hospital agreed. His calprotectin was high. His CRP was elevated. On good days, I look at him and still cannot believe he has this diagnosis.

Is the MRE soon? Are you waiting until after the MRE to start the meds? Would a second opinion help? If you post where you live, some members might have suggestions for good places for a second opinion.

Some parents start their kids on EEN before using 6MP or other medications. If you not comfortable with the meds, it might be worth discussing that option with the dr.

Starting my child on long-term meds was the hardest thing I've done in my life until this point. But I don't want the disease causing damage that cannot be undone. EEN didn't' seem like a good option for us as a sole treatment.

This is a good place for support and information.
06-29-2014, 01:00 PM   #5
Momtotwo
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There is a section here for parents of kids with IBD. If you read the posts there, you will find good info.
06-29-2014, 03:14 PM   #6
Clash
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So sorry to hear of your son's dx. It sounds so similar to my son's dx journey. His started with evening fevers that would come and go and then mouth ulcers. For three months the GP kept chalking this up to something viral. It wasn't until labs came back showing slight anemia that the GP sent him to a GI. His disease was severe and located at his TI, we switched to a ped. GI and started remicade right away.

C didn't have D or really pain until shortly after the dx. His bowel movements weren't frequent or painful so it wasn't even something I considered.

Hope all goes well with the new meds.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
06-29-2014, 11:07 PM   #7
jamesmom
 
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Thanks for your posts. It was good for me to hear that there are others with non-traditional symptoms with this disease. Anyway, he had his first bout of diarrhea today. He went to the bathroom 4x in 1 hour. So, now my question, is this a side effect of the medicines, or the disease itself? We started Budesonide Friday (6/28) and 6MP today (6/30). Also, his temperature was elevated at 100.8 this evening, but lower than what we're used to. Could the medicine be working that fast?
06-30-2014, 06:27 AM   #8
Johnnysmom
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Your son's experience sounds exactly like my son's. He was diagnosed at 11 years old, and never had diarrhea. Weight loss, growth problems, and frequent fevers were his issues.

My son was on a 6 week course of 40 mg of Prednisone and 6mp was started at the same time. There were a few bumps in the road and healing took a long time (try to be patient) but he is doing so well now. He has gained 70 lbs since diagnosed almost 3 years ago and has grown 9 inches. So although I was uncomfortable with him taking 6mp it has brought back his health.

My son's labs were normal 6 days after he started Prednisone. He was also feeling a lot better and his fevers went away quickly. The 6mp takes a little longer to kick in.

I know it is a lot to take in but things will settle and you will start to see results. You can change things in the future if you don't see your son getting better but it is important to get things under control right away. The longer you wait to treat, the harder it can be to fix.

Good luck and please let us know how your son is doing. ((((Hugs))))
__________________
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
Prayer

Last edited by Johnnysmom; 06-30-2014 at 06:28 AM. Reason: spelling:)
06-30-2014, 02:58 PM   #9
jamesmom
 
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Johnnysmom- Thanks for posting. I am very encouraged by your son's story. 70 lbs and 9 inches - wow! Was the growth spread evenly over the 3 years or was it more recent? I am curious about the "few bumps in the road". If you have time, I would love to hear more about it. Thank you.
07-01-2014, 09:21 AM   #10
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Hi jamesmom. I'm so sorry to hear about your son's diagnosis. It sounds a little bit similar to our story and we too are in NY ;-) My son was diagnosed in February after an almost year long journey with anemia. Not sure why no one ever checked his inflammation levels earlier but finally after getting nowhere we saw an endo who ran more bloodwork and found high inflammation. From there the GI and scopes and he was diagnosed with Crohn's. He never lost weight (although he was not gaining as rapidly as his peers/sister which led us to start digging for answers), never had fevers, stomach "issues" or anything. Good luck on your journey. This really is a tough pill to swallow. Right now my son has been on Entocort (steroid) since early March and has just started LDN. He also follows a very strict diet from a nutritionist that specializes in IBD. I know that we are just buying our time until we have to use the "big guns" when it comes to medicine. There are so many things I have learned on these boards just from lurking around. Feel free to message me if you have any questions.
07-01-2014, 02:16 PM   #11
Momtotwo
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MamaHenn-was it difficult to find a dr to prescribe LDN?
07-01-2014, 03:24 PM   #12
Jmrogers4
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Welcome Jamesmom,
Sorry you have had to join this club but I have to throw in here no "typical" symptoms for my son either. No blood, no diarrhea. We had similar symptoms as your son at diagnosis added that he was never hungry and would eat very little. We were sent straight to the Ped GI, I think based only on the fact that his father has Crohn's, otherwise we may have gone the same route as you.
My son was put on prednisone and Imuran (sister drug to 6mp) right away and we thought it was working but he did not gain any more weight after weaning off the prednisone and only grew about 2" over the next few years.
We found the med that works for him in January, 4 years after diagnosis and he has gone from 89 pounds to 110 pounds and 5'1" to 5'4" since January and is still growing.
It's all so scary at first and there is such a steep learning curve not only about the disease itself but also about what works for your child.
Take it day by day or moment by moment if that is what you can handle right now have a poke around the forum especially the parents of IBD kids. Just remember that a lot of people who post are having problems and have questions. There are thousands of others out there enjoying life with no time to post because they are too busy being kids and doing all those things that all other kids do.
My son is in remission now and just spent a week at camp and is now spending a few days with friends in Seattle and is currently watching the World Soccer Cup USA game at the Stadium in Seattle with a bunch of other teenage boys. He feels great and doesn't think about his crohn's except once every 6 weeks when he has his remicade infusion.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
07-01-2014, 03:49 PM   #13
Precious ones
 
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I am sorry to hear of yet another child with Crohns. Like your son, mine sneaked up on us with weight loss, slowing of growth for a couple of years, less appetite and constant night sweats which he still suffers with, oh and a persistent canker sore, but no abdo pain or toilet issues, until an acute attack of the runs which started the tests. I had been to the doctors a couple of times as my son had the most awful smelly flatulence for years but was told ibs. I am still struggling to come to terms with it all too. I have an older son which we are positive has the same but doctors reluctant to scope as not enough evidence yet. I hope you find some strength with it all, it seems a very supportive site to be on.
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Mum of son age 10 @ dx 4/14 crohns of stomach, colon, ilium
EEN 8 weeks
Azathioprine 75mg
07-01-2014, 09:59 PM   #14
my little penguin
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Welcome
My DS was dx at age 7. He is now 10.
Never had bloody stool prior to dx . Just severe constipation , weight loss , slowed growth and rectal prolapse. DS started on pentasa for a month then switched to 6-mp with EEN ( formula only no foods). 6-mp went to his liver so he moved on to Mtx and later remicade after a year of trying the other less scary -less effective drugs for my kiddo .
Remicade worked well with en ( peptamen jr plus food).
He had a rx to remicade so had to switch to humira.
He has grown 7 inches and gained 36 lbs since starting remicade .

Good luck
__________________
DS - -Crohn's -Stelara -mtx-IVIG
07-02-2014, 06:52 AM   #15
MamaHenn
 
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Momtotwo, yes it was somewhat difficult to find a dr. To prescribe LDN. We met with the GI armed with printouts/info. She said she didn't use it in the beginning of the visit and then towards the end admitted that they had some experience with using it for liver patients. I thought she'd go for it when she agreed to look over the research (which I got from these great forums). A week later, no dice. She said she had no problem with him taking it and agreed to keep monitoring him but she would not prescribe it. SMH. So I found a functional medical doctor who wrote the script. But an FYI neither the functional doctor nor the LDN is covered by our insurance.
07-02-2014, 07:26 AM   #16
Johnnysmom
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Bumps in the road……

The healing took a long time. He also had bone marrow suppression and the 6mp affected his liver. It took about a year an a half to get his dose right, there were many times we weren't sure if he would be able to continue taking it.

He had knee issues that kept him out of basketball and in physical therapy for about 6 months. He also had an accelerated heart beat that landed him in the ER and at a Cardiologist. (everything checked out fine). He had a long while where he stopped gaining weight and we had to do shakes etc. And then he got pneumonia in November and it caused a reaction that affected his kidney's.

Overall, he has continued to heal and adjusted to his medication and the big picture is that he is much healthier and active.

As far as growth and weight gain…..

He was 90 lbs when we took him to the ER about a month before his diagnosis.

The few months he was on Prednisone he went to 112 lbs.

One year after diagnosis he had grown 2 1/2 inches and gained another 23 lbs. Most of that was from March-October. He didn't grow at all really for about 5 months after diagnosis.

The next year he grew 4 1/2 inches and gained 26 lbs.

He has grown about 2 inches in the last 6 months and has gained another 10lbs.

I hope that isn't too confusing. I wasn't sure how to easily explain all of that
07-03-2014, 10:25 AM   #17
jamesmom
 
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Johnnysmom - Thank you so much. That was informative and inspiring, and a little bit terrifying too. I hope he continues to do well. Would you do anything differently if you could do it again?
07-03-2014, 10:38 AM   #18
jamesmom
 
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my little penguin - Wow! 7 inches in about 1 1/2 years? And he's only 10? Is he in remission?
07-03-2014, 11:19 AM   #19
jamesmom
 
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Jacqui - My son's ped. GI said we would go to remicade if 6MP didn't work. With kids like ours, who don't have the obvious symptoms, is it just growth that determines whether or not something is working? James has been on Budesonide 6 days now and seems fine. (4 days on 6MP) He hasn't had a fever in 3 days, he's eating as well as he ever did (which was never good) and he's gained 1 pound, so I wouldn't even think he was sick if I didn't know about the scopes and the blood tests.
07-03-2014, 04:36 PM   #20
my little penguin
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DS didn't gain weight for over two years and growth slowed /stopped as well.
He dropped from the 75% to the 25% so it was catch up weight /growth .

There is a parents section where most of us hang out ask questions and lend support
http://www.crohnsforum.com/forumdisplay.php?f=49


The to has not used the word remission but he is doing well GI wise.
He was just dx with arthritis associated with Ibd last week so he is still has issues .
07-04-2014, 10:50 AM   #21
Jmrogers4
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If he is not growing, push for more testing, figure out what testing indicates inflammation for us, the only thing we can use is fcp and even then it shows only mild inflammation when there is a lot of inflammation, so yes or primary indication is growth
01-02-2015, 01:43 PM   #22
vtfamily
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Sending a big hug. I'm so sorry Crohn's has entered your family's life. You will find a lot of support in the Parents of kids with IBD group.

My son was dx at 6 years old. Also did not have any typical symptoms. Doc said he was just "lean" but when I told her about constipation and appetite decrease, she attributed all to constipation. When that didn't work was sent to GI. It took about a year to get a dx and begin treatment. I'm happy that you were able to get dx quickly.

My son is 14 now and finally doing great on Stelara, but it was a long journey to get to this point.

My best advice for now is to accept that this is going to be a process. There is no cure or easy fix. Crohn's presents and develops differently in every person who has it. Be open to trying things, but do not become discouraged if you do not have success with them. Do your best to maintain as normal a routine as possible...your son has Crohn's and he is in charge, not the other way around! Also, be patient with family and friends...they mean well.

My best wishes to you, your son and your family.
Cheryl VT
06-13-2015, 11:57 PM   #23
vtfamily
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Five months since our last report. Gus is still doing amazingly well with Stelara. Made it through the school year with only one "blip," one week out of school due to pain. Thankful it did not manifest into anything more serious. He was even able to go to Mexico on a missions trip! He did well in school and we are looking forward to a wonderful summer break. Happy summer to one and all!
06-14-2015, 05:45 PM   #24
scot865
 
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started for me when i was 5, i didnt grow past 100 pounds till i was 19( total collectomy for me at 18). Pain is a side effect of certain things that crohns does sometimes. Not always. The way in which these diseases strike are individualized and noone has yet to completely figure out how or why the immune system is reacting and attacking in the nature it does. I am now 39 and the one positive thing i can say, is only serious flare ups even bother me anymore. I grew up in a constant flare from 5 to 23, never any clinical remission, until after the total collectomy. And during half that period of time because i didnt know any different, i swore up and down my doctors were crazy that i was sick. Simply because i didnt know any different. I thought it normal to cry all night, bleeding constantly, stomach always feeling like it was going to implode... I know it must be hard as a mother to see your child going through this. But dealing with this stuff in my adult life has become far easier. Only certain things can take me out the game now. I truly am sorry your having to go through this with your child. I developed such a resilence even though i was a candidate for permanent central line tpn, i said nah, i like playing basketball, and did that. Doctors used to tell me i was nuts and hurting myself. I learned young how resilient and hard to break we are. I wish only the best for you and your son. He's in my prayers
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