My 10 year old was just diagnosed with Crohn's disease.

Before I share my story i just want to thank all of you for putting out so much helpful information for newbies! This forum is wonderful.

Our story began nearly 7 years ago when my then 4 year old son began holding his stool....it was painful and the cycle was vicious....he would bleed and cry and we weren't sure if it was a control thing or something else. Eventually, we began to see small fissures on his anus and noticed blood was in his stool. His growth also became almost non existent. One morning he awoke with an odd swelling in his cheek...looked like a golfball in his mouth....over the next few months we visited several specialist (Oral surgeons,rheumatologists, gastroenterologists,allergy doctors,endocronologists, ear, nose throat specialists etc) all of them attempting to come up with some diagnoses...all of themm agreeing he was a mystery.

When a biopsy was performed of his cheek lining granulomas were found.....his blood work was unremarkable and he did not test positive on IBD panel or for Celiac. An endoscopy/colonoscopy was performed and the Gastro felt it was most likely crohns disease.....but the tissue samples came back negative....she still wanted him on Remicade and a slew of heavy hitting drugs.....we decided to get a second opinion at the Children's Hospital.....they did there own barium follow thru, looked at all of his test results and concluded that there was not enough "proof" to say he had crohns disease.....so for the next several years we visited the gastro for check ups, saw the endo for weight checks....gave miralax when necessary and fed him pediasure to up his calorie counts. He still was slowed growth....but over time the fissures went away and the only symptom was he was on the small side.

I always had a haunting feeling that we were waiting for the "other shoe to drop." Fast forward to Last summer.....Gavin developed a swollen penis and scrotum. Very odd...we took him to hi pediatrician who suggested oatmeal baths....etc...when we realized it was not a skin issue....we went to a urologist....he was puzzled....we mentioned Gavin's history with odd swellings....he was not impressed it was related. He gave us a script for Prednisone....and off we went....my poor boy finally gained some weight over the course of the 3 months he was on it....but suffered from the moon face and just didnt look like himself at all...the swelling was better on the scrotum but his shaft was still swollen....I began researching.....and found something called Metastatic crohns disease....very rare.....printed out all of the medical articles and called the gastroenterologist/urologists.....they were intrigued....but not convinced. Over the next few months the swelling was down he was off steroids....was going along fine and then bam...the swelling came back again! This time we opted for another endoscopy/colonoscopy to once again rule out crohns disease....but this time, he tested positive for one of the IBD panels, and his gastro was able to access the terminal ileum which wasn't done the first time....he felt it was now crohns disease. When the biopsy results came back it was determined it was indeed mild crohn's disease. Other than the penile swelling and slowed growth my child is the picture of health....you would never know he had a chronic disease.

It has been a long, sad, emotional journey.....and we are still unsure of how we want to proceed with treatment. His doctor wants him on Apriso....2 pills/day....the urologist didnt want to do steroids again and the only way to confirm metastatic crohns is through a biopsy which we opted not to do since we already know he has it in the TI. He is on prevacid 30 daily for some gastritis and we are giving him vitamins and ensure daily.....we have not started the Apriso.....we are on the fence about starting something like that....wondering about changing his diet to clean eating? Thinking about doing that for 6 months and seeing if it effects anything....the confusing part is we will not know either way because he is asymptomatic.....they do not think the Apriso will help the penile swelling. This is a VERY confusing time for us as parents....to be entrusted with such potential life changing decisions...the medicine can cause side effects....and not using it can be detrimental as well......we are so confused and I feel like a bad parent for not knowing what the right move is.

There's a lot to know about Crohn's and decisions are difficult even for veterans like me, so don't feel badly about that.

I'm not too familiar with your son's particular type of Crohn's so it would be hard for me to advise you.

What I can say is that you need to hold your doctors to account and ask lots of questions. If your specialist is tight-lipped or you don't see the improvement (or at least a good explanation for a lack of improvement) that you're expecting, look for another specialist. There are duds out there and you can't afford to waste time on them.

This is nit-picking and I'm sorry to mention it, but if you break your posts up into a few paragraphs it's a lot easier to read long accounts like this. The blank lines give the eyes a place to rest and a landmark while reading so that they won't glaze over.

Good luck to you and your son and if you have specific questions please ask! There's a lot of people on here with all sorts of "flavors" of Crohn's and quite a lot of experience.

Hi Farran :welcome: to the forum. Wow your son has been thought alot and going through a rough time and upcoming in his life.

Thank Goodness you didn't give up. Most Gi's either dont go past the large colon, which is not far away is the Terminal Ileum, and that is the most popular place to get crohns. I too went through major tests, scans, scopes, and although I am female I dont have all the same sypmtoms. Crohns creates a lot of other side effects.

Please get his B12 and calcium and Vitamin d checked, those are common tests that should be done. Prednisone and antacids, rob calcium, and needs sufficient amounts for his growing years.

Prednisone is the "miracle" drug and helps everything but only whilst on it and therefore needs to be on a maintainance, drug, like Pentasa or Entocort. I am not a doctor but the less envasive drugs he is on the better. I hope he gets better soon, glad you joined us and there are lots of parents with sick kids. They will be here to help! Hugs to you on this trying time.

Thank you Pen for your reply. The Apriso that his doc wants him on is a 5ASA like Pentasa I believe.....we are just in the process of weighing options....so much to think about and manage.....and he has been through a lot....he also has life threatening allergies to Peanut/tree nuts and recently suffered anaphylaxis from cross contamination when the school gave him a donut! I feel so helpless when it comes to him....but he has taught me more about strength and resiliency in his short 10 years than I have had my entire lifetime so far! He continues to amaze us every day!

Will do Muppet! Sorry for the long post.

Hi Farran and :welcome:

Oh my, what a difficult time for you all...:hug:

I'm glad you have found your way here, it is a wonderful place for support and information and you will find you are no longer alone. We understand what you are going through, the pain at seeing your child endure tests, the heartbreak and at times relief when given a diagnosis, the excruciating decisions that need to be made when the treatment options are laid on the table, the wishing beyond all else that we had this disease and not our baby.

It is quite common to experience extraintestinal manifestations before any intestinal symptoms of Crohns appear, we just don't realise at the time that that is what they are.

Since your son has active Crohns I am somewhat baffled as to why the doctors don't think that treating the root cause of the problem won't also treat the extraintestinal issues as well.

Also, the Crohns being mild and in the ileum an elemental diet may be of some benefit to him in gaining remission. Studies suggest that particularly in children an elemental (liquid) diet for approximately 6 weeks is as effective as Prednisone at inducing remission but there still remains the question of long term remission and that is where the difficult decisions lay as you well know. You will find many and varied opinions about this. I personally subscribe to medication, supplements and diet as a big part of the key in keeping my children on an even keel but that is only our experience and specific to type of Crohns my children have.

You are not a bad parent for feeling the way you do hun, you are scared and confused and want nothing but the best for your boy, nothing bad in that, it speaks of love, concern and protection. Kudos to you!

Welcome aboard Farran, make yourself at home, browse the forums including the parents one that you will find here. I look forward to seeing you around.

Dusty. :heart:

Your poor son! It's awful being so young and being ill.
I've not suffered extensively with "extra-intestinal" symptoms but they definitely should not be overlooked and dismissed like your docs seem to be doing.
My sisters old flat mate had crohn's and had absoloutely no intestinal symptoms but instead got horrible, painful ulcers on his legs leaving him unable to walk when they were bad - so it's not always so simple and these swelling are most probably related to the Crohn's.
Good luck in his treatments and I hope he gets a well deserved remission, the poor thing!

xxxxxx

Hi Farran, welcome!! Sorry I missed you! Just wondering where you guys are now with your son and his treatment. This is the first time I've seen this particular EIM. I hope things are better now!!

Hi Dexky....I just posted in the "If you could go back" thread about our update....basically we have decided to begin treatment with Apriso, Prevacid, caltrate, multivitamin and continue with clean eating and the protein/inflammacore smoothies. We really don't feel at peace with the decision, but doubt we ever will. It is a hard pill to swallow that your child has a chronic illness....and even though our journey has taken nearly 6 years to come to this point....it is still very surreal. I wouldn't doubt that this is the first time you have seen this particular EIM.....even his doctors have said this is something you never come across in a lifetime of being a doctor...it is that rare. He is a medical mystery....our hope is that the apriso will also help with the penile edema....the doctors had no clue if it would make a difference or not....but said it is worth a try.....the swelling is way down and we are hopeful that once he hits puberty it will all correct itself as far as the stretched skin in the area. This entire presentation of crohn's disease has been so odd.....the first thing we noticed was an odd golf ball swelling in his cheek.....just woke up with it one day.....no one knew what it was.....and that has been the case with most of his presentations.....he is just special that way! lol. Thank you for checking in on him.....I think we are getting there.....just need to adjust to our new life of medicine....and emotions.

Farran7
son dx w/crohns 7/11

Apriso
Prevacid
Multivitamin
Caltrate
Inflammacore/Ultra Meal

I have had crohns for 23 years and both of our children have crohns also. My daughter which is now 15 gets remicade treatment like I do and she does very well. She gets soars in her mouth because of her crohns and they go away in just a few days after her treatment. My daughter has had crohns since she was 9. We have also been drinking green tea and that is helping too.
Sincerely April

Wow....it is interesting to see how many families are affected by this disease. My mother has Remicade treatments for ankylosing spondylitis and bechets disease....she is also suffering with celiac disease....so the apples def dont fall far from the trees! Adkplunk4 do you belong to any support groups....or know of any for children in Indiana?? I am not familiar with Haubstadt......we are just North of Indianapolis. Curious if you take your kiddos to Riley or not??

Farran7

We live near Evansville just north of it. My children go to a specialist that deals with children in Evansville. The doc. they go to does a very good job. and both of my children are in good health and are not having a lot of trouble.

Adkplunk4

That's wonderful to hear....I know my mother always feels better after her infusion. Do you guys follow any specific diet or use any other supplements other than the green tea? We are new at this.....as my son was only recently diagnosed.

Farran7

We just eat a normal diet and the green tea is something I started back over the summer and my SED rate count and Reactive protein count is normal and has never been normal.
I also have only 3 counts on my blood results that are either to high or to low and that is also changing because 2 of the three are almost normal. My daughters counts are getting better too. I am sorry to hear your son is sick. It can be very hard to figure out what needs to be done. Please email me any time.

To Farran7 -

I have to respond to your posts because it is your blog that I randomly came upon during internet searches a few months ago when my son had both unexplained facial swelling and unexplained penile swelling. We saw many different doctors and specialists and no one could help identify the problem.

After reading your blog I asked our pediatrician to run blood work for inflammatory markers/Crohn's which he did but nothing came back abnormal. We continued for a few more months without answers until finally we had an MRI ordered. The MRI showed inflammation in my son's bowel. After a colonoscopy the diagnosis was confirmed and now we are seeking treatment for Crohn's.

As hard as it was to hear that our son had Crohn's -- I guess I wasn't surprised as I had the inkling ever since reading your story. He's had major dental and orthodontia work at the same time as the facial swelling so it's been difficult to isolate the cause, issue, etc. Now I do feel that some of the facial swelling is due to inflammation.

I hope your son is doing well -- my son is 11, and he still shows no typical symptoms of Crohn's. He is also on the small size for his age but other than that he is the picture of health -- athletic, energetic, and an amazing attitude.

Anyway -- I just wanted to let you know that your story helped us come to a diagnosis more quickly than I believe we would have since it pushed us to ask for further testing...so thank you.

Hi cdog88! Has your son begun any treatments and are you seeing any improvement? I wonder if prednisone is in the picture, the facial swelling is likely to get worse.

Wow...I am so glad that our story was identifiable and helpful to someone....I am sorry to hear that Crohn's ended up being the diagnosis for your son....but we have been alone and on a bit of an island with regard to the penile swelling.

My son is now 12, and has been on Apriso since 2010....he has done well on it...has grown nearly 4 inches in height and was able to put on about 10 pounds in the past two years...which doesn't seem like much, but you know that is a huge victory! He still has some penile swelling...although no one has been to identify or pinpoint that it is definitively related to CD.....they told us we would have to actually biopsy the skin on the penis for that...and we opted not to at this point. It is not impairing him in any way...and the urologist told us that once he enters puberty is may correct its appearance and not look swollen.

We recently had a flare where he had intense stomach pain...almost a burning sensation...he was debilitated and we ended up in the ER....CT and Ultrasound showed mild inflammation....so they placed him on Bentyl 4x a day....and a month later he is back to his normal self....not sure what that was all about...but I am just grateful he is okay again.

My son and your son sound nearly identical in how this disease has presented and progressed.....we too had no markers in the blood other than a slightly elevated sed rate.....only through a 2nd colonoscopy of the terminal ileum and a biopsy was it conclusive to be CD. He looks and acts totally normal (we finally hit the 75lb mark!! and he is now 4'10)....plays basketball...and has the wit and maturity of a man 3x his age!

what medicine, if any, is your son taking? Are you in the wait and check mode like us...appts every 6mnth unless we have problems?

Wow - thanks for the quick responses. I'm sorry to hear the penile swelling has not fully resolved. Since that is our son's only visible symptom we are quite anxious to see improvement.

Treatment -- he started on an 8 week liquid diet...using Boost Plus as the form for eternal therapy. He's 2+ weeks into it and doing great -- able to tolerate the taste and the social aspects of not being able to eat regular food. Has actually gained a couple of pounds and his Albumin level already went up .7 points which is the marker the doctor is tracking for now. He is also going to start on 75 mg daily of Aziathioprine next week. Although this med has documented side effects (that are scary to read about), given the nature of his inflammation, his age, the need for growth, and the external swelling the doctor feels the benefits outweigh any risks and after our own research we agree. He has moderate inflammation in his small bowel, smaller lesions in his esophagus and a few sores in his mouth - found during the colonoscopy and endoscopy.

Our physician hopes to not use steroid treatment and will go that route only if other meds do not prove effective. So for now that is not on the treatment plan. Our son is his only male patient in a clinic of 600-700 Crohn's pediatric patients with the external inflammation. Apparently there are a few female patients with a similar condition.

Great to hear about your son's growth and attitude. He sounds like a great kid. I'd love to continue to hear about your progress. Thanks again for responses.

So glad to hear that you have a plan in place and already seeing some improvement. The liquid diet is difficult.....will he continue this once school resumes as well? I think that would be the hardest on them...at lunchtime...however, all of it is hard right?

I think, overall, deciding on a course of action for our son was the hardest part for us....the side-effects are scary...and it is difficult to wrap your head around all of it when your child "appears" to be healthy, and not suffering....yet, you know something just isn't right. We have had to do a couple rounds of steroids earlier in the process....however, we have not had to cross that bridge again since he has been on the 5-ASA (Apriso).

I am curious about the female patients you mentioned within your son's doctor's practice.....are they crohn's patients....with genital swelling? Has it been confirmed to be an external manifestation of the disease? Perhaps you could privately message me your doctors info for me to pass along to our doctor....our doc also said he had never in all of his years of practice seen CD present this way...so it would be interesting for them to interact if possible??

Yes I will message you separately! Thank you.

Hi Farran, cdog88 and everyone else.
My son, who is 13 years old, developed swollen genitals a few weeks ago. He was diagnosed with Crohn's when he was 6 years old, but was having chronic diarrhoea from the age of around 3 years. After he developed perianal abscesses at the age of 5 years, they decided to investigate him for Crohn's. He hasn't needed any medication for the Crohn's, except for some iron supplements.
The GP has no idea what is causing the swollen genitals, but he has tried antihistamines and antibiotics, with no improvement. He's had an ultrasound and MRI, with nothing identified. GP then sent us to a urologist, who says it's idiopathic penile oedema, and recommends we see a plastic surgeon for split skin grafts. I have asked both the GP and urologist if the swelling could be related to the Crohn's, but neither of them believe there is a link.
The appointment with the plastic surgeon is not until July, so I have some time to look for alternative treatments.
We have an appointment with the GP next week, and I've found a paediatric gastroenterologist who I would like to be referred to. My son has only been followed up by the GP and paediatrician until now.
I hope that soon some brilliant doctor will stumble across an effective treatment that all of our sons can benefit from.

Nick's mom....I am going to private message you.

I will also send you a message Nick's Mom. Farran7 and I keep in touch off line.

hello, I am very interested in this thread, have posted before, love this group! my son (17 years old with down syndrome and autism) has not been diagnosed w crohns so we are getting second opinion but in the mean time on july 3 this year he had a swollen scrotum also and it had drainage etc. went to er diagnosed with cellulites. my son also has a pilondial cyst or abscess and has had colonoscopy year ago showing acute self limiting colitis?

he cannot speak so heartbreaking not to know what hurts.(just go by his many symptoms) I am sure the drs think I am crazy but I believe this is all related! would you believe that years ago he had cheek swelling that showed up 2 or 3 times? I never thought that could be related but reading your posts, wow!

if someone could help me in anyway, I so want my son to have a diagnosis, and the colonoscopy was so hard on him but I am sure they will have to do another one. just hoping the second opinion will help. he actually does have so many GI issues.

I thought, could this latest scrotum infection be a fistula? the surgeon said good question but normally his rectum would look worse? can't imagine this would always be the case! antibiotics helped the swelling and drainage.(he also had some fever etc.) thank y'all for this thread, makes me feel like there is hope and that maybe my son will someday get treatment also. cannot believe others are going thru some of the things we are, thank you, Dawn

When we were seeing a Urologist before the Crohn's diagnosis he had one case of scrotum swelling with drainage and he said he put the boy on penicillin and it worked/cleared up. He put my son on penicillin at the time which did not help in our case but…

I hope you can get some answers for your son soon. I know how difficult the unknown can be. Thinking of you and let me know if I can help further.

Hello,
My husband woke up about 4 weeks ago with a large swelling on his cheek. He looked like he'd been punched and it also coincided with his recurring abscess swelling again. He went to the drs and was told that they were in no way related. 2 weeks later he was in hospital with a mild flare!!! He has also has sore pustules on the top of his head for about 4 years now. This disease presents in some peculiar ways. Very glad I stumbled across this thread. I hope everyone's sons are doing well. Thanks again.

Hope your husband is feeling better now!! wish you both the very best, thanks for your replies and encouragement, wish all of us didn't have these things to go through w our loved ones, but hoping for continued answers to these mysteries. I hope for doctors to always listen and have an open mind about all of this! take care!!

Howdy.
I just stumbled across this post and I have just made an account for this forum. I have been experiencing penile swelling for around a year now, spoken to a few general practitioners who really didn't have a clue, and it is only now I have found out that it is most probably linked to Crohns disease (I suffer from fairly minor orofacial granulomatosis.) I was just wondering if there was any more news regarding the penile swelling you have described.

Hello -- what we've learned the past year and a half+ is that the swelling is a very rare symptom of Crohn's - often presenting before other GI symptoms. I only know first hand of a few cases through families I met through this blog and one family through our MD. So far the 2 cases that have seen improvement were on Remicade for almost a year and at that point started seeing reduction in the swelling. My son (age 12) is on Humira and has been for about 10 months -- still waiting to see swelling improvement but am hopeful. All other symptoms (he had facial swelling and slow growth (cannot confirm from Crohn's but possible) but no GI symptoms) have improved quite significantly. His lab work shows no sign of inflammation and hasn't for some time. Hope this helps. Feel free to private message me if you would like any further info!

Hello Farran7,
I just joined this forum and your post caught my eye because I was also diagnosed with Crohn's disease at the age of 10.
I remember how scary it was being so young, having so many doctors visits, not understanding my own body while the doctors didn't either. I remember being much shorter and smaller than everyone in my class and also going through the "moon face" side effects of prednisone.
My symptoms of Crohn's disease we're different than your son's but my path to diagnosis was similar. I had multiple procedures including colonoscopy, endoscopy and barium follow through. I saw multiple doctors and specialists and was treated at multiple hospitals before doctors could figure out what was wrong.
One thing I REALLY recommend for you as a parent is to keep him focused on and involved in fun activities such as arts and crafts, after school sports, theatre and dance. What ever he enjoys to do for fun, let that be a focal point. My parents did a great job at making me feel no different than my peers by letting me do everything they got to do. Although I would be much more fatigued than the other kids, it was a great feeling to get out and play with them.

I am now 22 years old, recently graduated from the University of Hawaii where I played D1 collegiate water polo. I am so thankful that my Crohn's disease has little effect on the way I live my life.

Stay positive as best you can in this difficult time. I will be praying for you, your son and your family.

If he has any questions about what it's like to be a kid with Crohn's, I'll be happy to give him answers the best I can.

Best,
Maggie

Thank you for your post!!

I have to say. I was just diagnosed myself a month ago. But your son's story brings a lump to my throat.

I have had some of the same issues with my son. Less than 3rd percentile in height his entire life. Constipation issues and strangely, a one time swollen penis. I will keep your story in mind as we travel out journey.

I wish you the best of luck. You are doing a great job Mom.