Danny - atypical Crohn's

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dannysmom

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Danny - atypical Crohn's / undiagnosed

Hi. I am Jeanne. My 13 year old son Danny has been sick for about 2 years. He has constant fatigue, abdominal pain, sore throat; frequent diarrhea, headaches, mouth sores, reflux, eye floaters, body tempurature issues; and occasional joint pain. He has not been able to go to school and is on home instruction. We've seen >20 doctors of various specialities; some dx him with Crohn's based upon a positive IBD 7 blood test & pathology reports of inflammation throughout his entire digestive tract. However, his GI (and a 3rd opinion GI) say Danny is not like their typical Crohn's patients so do not give a definite diagnosis. No lesions were visualized on his endoscopy or colonoscopy and Pillcam showed possibly one small Crohn's lesion in proximal small intestine. Danny had an adverse reaction to prednisone (all his Crohn's symptoms were much worse within days) - so only remained on prednisone for 1 month. His symptoms went back to baseline when coming off prednisone.

Danny has tried lots of supplements (Probiotics, Omega 3, Vit D, licorice, Glutamine ...), medications (Pentasa, Prednisone, Cipro, Flagyl, Doxycyline, LDN ...) and diet changes (dairy-free, gluten-free, SCD) without any noticeable improvement. The last 2 months Danny has been trying oral vancomycin with definite reduction in diarrhea but other symptoms remain.

I know the cause of Crohn's disease can be different for different patients, and given Danny is considered atypical Crohn's, I sometimes hesitate to post. But am grateful for the support here.
 
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With all the doctors he has seen, has anyone tested liver and/or thyroid function? Sometimes "malfunctions" of these two systems can mimic IBD....

Kinda stretching, but another possibility: lyme disease??

http://www.lymepa.org/Basics2007v1.2Rev.pdf

Hope you find some relief soon....
 
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Thanks for the replies. Liver, thyroid and others all test fine. He has been serum tested for Lyme 4 times, all negative. Even other tic-bourne diseases and CMV came back negative.
 
Have food allergies been ruled out? After 20 docs, I can't imagine where else you'd turn. Good luck!!
 
Thanks Mark. Serum allergy tests showed Danny to be allergic to milk, wheat and tomatos but removing these foods for >6 months has not shown improvement unfortunately.
 
I'm sure it would be difficult with a 13 yr old but have you considered trying an elimination diet? Has he discovered any foods on his own that make symptoms worse? EJ has surprised us occasionally announcing he won't eat this or that because it causes diarrhea. It seems he is more in tune with his body than a "normal" gut person! At least I hope that's the case!
 
Update: Danny was diagnosed today with Cystic Fibrosis. This can attribute to all of his GI symptoms.
 
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Thanks for the update Jeanne.

I hope Danny can finally find some relief now that he has a definite diagnosis. Good luck and best wishes in your new journey, I will be thinking about you both.

I hope you don't mind me asking but is 13 considered quite "old", for want of a better word, to be diagnosed with CF?

Hugs....:hug:
Dusty
 
Hi DustyKat ... seems like you are right. Just read "Doctors diagnose most kids with CF by the time they are 3 years old, but if someone has a milder form of the disease it may not be diagnosed until that person reaches the teen years." Glad to read that :)
Thanks
 
My heart goes out to Danny and to you too, Danny's mom. I have no words of wisdom for you except to say I am sending good thoughts your way. Perhaps it will help now that you both know what you are dealing with.

Wow, 17 times! Something else to put on my list of things to look up. I wonder why?

Keep coming back as the people here that have kiddie with CD are wonderfully supportive.

Best of luck to you and your precious a Danny,
Michele
 
Another update:
The Cystic Fibrosis Center does not believe Danny has cystic fibrosis even though he has had positive sweat tests on 4 occasions now. He has been negative for all CF genetic mutations and he is pancreatic sufficient ... so his illness is still a mystery, and we are continuing to follow up with doctors and testing. I will keep this thread updated. Thanks for the support.
 
Hi Jeanne

Just read your thread for the first time today. As a Mum I really feel for you and Danny. It must be so frustrating trying to get a definative diagnosis. I'm hoping you get answers very soon. Keep us posted. Big hugs to you and Danny :)

:hug:

Paula
x
 
Hi Jeanne,

I'm so sorry to hear you are back at square one again, how frustrating when you thought you finally had answers! :(

I hope you find the right answers soon. Good luck and keep us posted...........

:goodluck::goodluck::goodluck:

Take care, :hug:
Dusty
 
Wow Jeanne, I am glad Danny doesn't have CF... or hope he doesn't.
I am sorry you dont have an answer and I can understand how frustrating it is to a degree. I do not have children but Im still trying myself to figure things out. You are not alone and as someone mentioned, please keep coming back - the parents here are awesome and very supportive (everyone is; really)
If Danny tested, "positive IBD 7 blood test & pathology reports of inflammation throughout his entire digestive tract and possibly one small Crohn's lesion in proximal small intestine" wouldn't that suggest he does in fact, have Crohn's? I am new to this myself so sorry if this is jumping the gun.

I wish you well and hope you get answers very soon.
Take care and welcome to the forum
Wendy
 
Hi Jeanne - Just wanted to pop on and offer my support. I hope you are able to get some answers very soon.

-Amy
 
Jeanne- how frustrating for your family! I hope you get the answers you need soon, but you are always welcome here, if it is Crohns or not! Danny will be in my thoughts.
 
Update (filling in some blanks in Danny's story)
- Last fall Danny's GI had him try Cipro/Flagyl. This seemed to help his D for the first 2-3 weeks, but then the D came back. He stopped the Cipro/Flagyl after about 2 months. Danny's GI then had Danny try oral Vancomycin. This immediately stopped the daily D ... but after about 2 months, the D was back worse than ever ... AND Danny was coughing up bloody phlegm.
- The coughing up bloody phlegm is what led to the Cystic Fibrosis testing (since this runs in my family long ago before genetic testing). Even though it was determined Danny does not have CF due to genetic tests. Danny does have elevated sweat chloride and sodium AND a bronchoscopy showed sticky mucus in his lungs and Candida Albicans.
- Neither Danny's GI or pulmonogist wanted to treat the Candida .... but I can't help thinking that the antibiotics Danny was on for so long has created a new Candida problem. And, if Candida ended up causing his lungs inflammation, then it was likely to be causing havoc in his digestive tract.
After about 6 months, Danny's cough settled down. But Danny still has severe D everyday and night for the last 7 months. (Along with the constant fatigue & headache)

Recently we tried the following without any help: B12 shot, Pancreatic Enzymes & Alinia.
Currently Danny takes just a multivitamin and probiotic VSL#3.
His GI thinks Danny has an illness that is beyond what the current medical field knows about. He plans to repeat the upper and lower scopes, but we have not set a date. Other GI opinions lean toward 'IBS' and the need for cognitive behavior therapy.
 
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Thanks for the update. How is Danny doing with his current treatment plan? Has there been an improvement?

It sounds like you have a good doctor looking after Danny. I hope he continues to be proactive and gets some answers as to what is going on with your son.
 
Oh my Jeanne, you must be at the end of your tether with all this and seeing Danny suffer for so long...:hug:

Are you keeping a diary of Danny's symptoms?

Dusty. xxx
 
OH goodness Jeanne! It doesn't sound like Danny is any closer to a diagnosis yet :(
I'm so sorry for you and your son.
This is so unfair!
Thanks for keeping us updated...hang in there mom!

big hugs,
~T~
 
Sorry Jeanne, it's gotta be so tough not having a name for and not knowing how to treat Danny's illness. There are no words to ease your worries:( I hope answers are right around the corner!! You've gotta know your enemy before you can hope to fight it!!
 
DustyKat said:
O
Are you keeping a diary of Danny's symptoms?
Click to expand...

Thanks everyone for your support! Yes, Dusty, I have a diary (in monthly summary form) and a timeline of symptoms, treatments, tests & events/triggers. I know I look like a pycho-mom with my documents to some doctors but most doctors find it very helpful.
Thanks again!!!
 
Hi Jeanne,

I'm so sorry you, Danny, and your family are having to go through this. I coughed up blood for about 5 weeks (I was diagnosed with Chronic Lymophocytic Colitis) though coughing up blood is not a symptom of it, my doctors have no idea what caused it. But my heart goes out to Danny as it is quite terrifying.

Has he been evaluated for Mastocytosis?
 
Wish I could make a quick edit from last week's post, but cannot: the probiotic Danny is taking is VSL#3 (not 3GL ... I am losing my mind :)
 
I doubt anyone noticed but now we all know!!...you are losing your mind:)

How's Danny doing?
 
for Danny's Mum

My crohnes started 1966,many of Danny's symptons are familiar to my own experience, which went on for ten years prior to discovery of this systemic disease, due to neglect by local GP'S, and failure by Grimsby hospital sugeons to investigate the lower bowel, according to the surgeon Mr eddie, who I paid for private examination in 1976, resulting in a hemi-colestmy.

It is my understanding that the cause of Crohnes remains unknown to date.

Do please try Soya milk substitute in place of milk every where, for seven years I was literally confined to my home with very sever diahrea, up to 17 times daily and through the night, Soya, REDUCED THIS TO 3/4 TIMES DAILY, WITHIN 2 DAYS OF USING THIS, for the past 5 years this has been reduced to no more than twice daily.

I was admitted to hospital on the 12th December, 2011, for complete removal of the remainder of my large bowel, due cancer, I was released on Saturday,14th January, 2012, with a stoma but fortunately I do not need further treatment, cancer clear, check up every thee years or so.

I whish yourself and Danny every good luck with this terrible problem.

kind regards.

Peter.
 
Have you tried getting a PPD skin test and the Quantiferon gold blood test? Since the steroids made the condition worse, intestinal tuberculosis might be something that is worth checking.
 
ABC said:
Have you tried getting a PPD skin test and the Quantiferon gold blood test? Since the steroids made the condition worse, intestinal tuberculosis might be something that is worth checking.
Click to expand...
Thanks for reading this and offering advice! YES, we did both tests. He first had the quantiferon gold test show negative. Then after his brother's PPD was positive (and follow up QG negative, meaning another mycobacteria exposure) I asked for a PPD for Danny. The doctor said the response was negative, but if she only saw it 6 hours earlier he had a huge reaction. I've had non-TB mycobacteria on the back of my mind since then. Testing for MAP is not common practice.

Update on Danny since last summer:
Danny still has too much fatigue to function normally, daily/nightly D (~5 daily), ab pain just below his belly button, sacroiliac joint pain, headaches, etc. etc.

-We tried fluconazole, alinia, & Rifaximin without any results.
- MRE had only minor non-specific findings (multiple enlarged lymph nodes, wall thickening debatable)
- repeated colonoscopy showed no evidence of Crohn's, however mild chronic inflammation in his stomach & duodenum & active inflammation in his tranverse colon. Mast cells considered within normal limits so special stain was not done.
- 24-hour urine & blood tests for neuroendocrine tumors were normal
- A rheumatologist is willing to prescribe Humira to see if it helps. Two GI's were not so enthusiastic given lack of evidence for Crohn's. It is something for us to consider.

Not sure what our next steps are ....

thanks for your support!
 
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Hi Jeanne, from what I see you have 3 options:

1. Continue with the current treatment plan
2. Start Humira or any other biologics and see if that helps
3. Start a 2 month therapeutic trial of anti TB medication and see if that helps. There are papers after papers on the Internet describing how difficult it is to diagnose intestinal TB. PPD and Quantiferon are mostly inconclusive. However, I am not sure if you will be able to find an Infectious Disease doctor who will be ready to prescribe the anti-TB meds without a proper diagnosis.

I would personally stay away from Humira given the lack of evidence of Crohn's. But in the end it's you, your family, and your doctors who know what's best for Danny. Good luck.
 
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HI DANNY'S MUM, SO SORRY TO HEAR ABOUT DANNY ITHOUGH CF WAS DIAGNOSED EARLY , DID HE HAVE AN ONGOING COUGH BEFORE THE DIAGNOSIS, OR WAS IT BECAUSE HE HAD BLOOD IN HIS PHLEGM AND THE CROHNS SYMPTOMS THAT HE WAS DIAGNOSED WITH IT. WITH REGARD TO JOINT PAIN READ THE ARTICLE ON THE WEBSITE [Magnesium For Life | Transdermal Magnesium Chloride Therapy] New Comment On: Calcification and Its Treatment with Magnesium ITS WRITTEN BY DR MARK SIRCUS, THEY USE MAGNESIUM TRANSDERMALLY FOR JOINT PAINS AND THERE IS A FORUM THAT YOU CAN ASK QUESTIONS
I HAVE AN ONGOING COUGH IN THROAT AREA FEEL A LOT OF PHLEGM, NEED TO CLEAR THROAT AND A LOT OF PRESSURE THERE, AND SOMETIMES THE FEELING OF NOT BEEN ABLE TO SWALLOW, ALSO HAVE ASTHMA, DOCTORS PUT IT DOWN TO POST NASAL DRIP BUT EVEN THOUGH I DONT FEEL THE DRIP SOMETIMES THE COUGH CONTINUES DRIVES ME UP THE WALL I JUST CAN IMAGINE WHAT YOU ARE GOING THROUGH, JUST TRY TO CUT ALL ACIDITY FROM HIS FOOD, I DONT KNOW I FROM CEYLON AND THER IS A SAYING THAT IF YOUR BODY IS HEATY YOU NEED TO EAT FOOD TO COOL YOUR SYSTEM DOWN AND THEY SUGGEST BARLEY, BOILED AND TO DRINK THE WATER, AS WELL AS SAGO, COOK IT WELL, ADD SOME SUGAR TO TASTE AS WELL AS SOME CARDOMMONS AND PUT IT IN THE FRIDGE TO SET AND EAT IT, MAYBE HAVE A CHAT WITH A NATUROPATH AND SEE IF THERE IS ANYTHING THAT HE CAN TAKE TO COOL HIS
SYSTEM DOWN DUE TO ALL THE MEDICATION HE IS TAKING, HAVE FAITH IN GOD HE NEVER LETS YOU DOWN, I WILL BE THINGKING OF YOU ALL IN MY PRAYERS, KEEP US POSTED.
GOD BLESS HEATHER
 
Hi dannysmom,

I am sorry to hear about what you have been going through. I have two thoughts on what can possibly help. Hopefully, you can give them a try and find one that is useful.

1) Fecal Transplants or Bacteriotherapy: There is alot of benefits being seen with the transplanting of poop from a donor to patient. Its used primarily for uncontrollable diarhea due to c diff infections. Has he been tested for c diff? Even if he does not have it, I think this is worth a shot. I know 3 doctors currently doing the procedure, but you would need to reach out to them if they would be willing to do it in this case.

2) Elemental Nutrition- Perhaps he can find additional food triggers by going completely on an an elemental nutritional formula which is non milk based. If that stabalizes him, you can add back food one at a time.

Is he underweight and is his growth stunted?
 
Thanks for the advice. I really do appreciate recommendations. Danny is not on any medication now. Danny has been tested for C-diff twice, both negative. We attempted to try an elemental diet, but the drinks that tasted better all had cassein in them and that bothered him. The one true elemental drink he tried was just too awful for him to drink. He said, "I will need a feeding tube for this" - so that is something on our back burner for now. The good thing for Danny is that he has no issues with growth or weight through all of this. In fact, when he was at his worst (D 20x a day) he was heavier than ever.

Over the last year Danny has improved tremendously. His fatigue is better ... still not normal ... but much better. His daily sore throat stopped a couple of months ago. D is about 3 times each day and once during the night. He does some form of exercise each day. AND ...... he is planning to attend school again. (He has been on home instruction for almost 3.5 years). August 30th is his first day!
 
Very interesting that his weight and height are unaffected. I found that one you get used to the taste, the elemental formulas are bearable. I think the fecal transplant might help, even without him having c diff.
 
I'm so happy that Danny will be going back to school and that he's feeling better!!! :medal1:

Hope he has a GREAT time tomorrow!! :D
 
Thanks Tess! It was a big day here "Back to School" after all this time. It all went well today - he seems happy ... but more tired than he has been in a long time. Fingers crossed! :)
 
Hi Jeanne (dannysmom),
I read your other post too:
dannysmom said:
Hi everyone. I feel like venting and this subforum is the best place for me since Danny is still undiagnosed!

Everything that our GI tested in the last month came back 'basically normal'. ... and he ordered everything I asked for:

Stool calprotectin ... normal
B12 ... improved since his shot ... now in the 600's
Iron ... normal
total tryptase .. normal (sometimes helpful for mastocytosis)
complete amino acid profile ... normal
CBC ... normal
ESR & CRP ... normal
CMP ... slightly off on some (Chloride, Calcium ... but would be normal range from other labs)

And MR Enterography ... 'basically normal'
- the GI told me that he had 2 radiologists review it and they thought that a couple of his loops were think, but it was not enough to hang a diagnosis on.
- I received the written report and it says the loops show no thickening. The only abnormality is multiple lymph nodes (subcentimeter) in the lower right quadrant.
(But after some research, I read that mesenteric adenitis is a more common finding in pediatric patients ... even asymptomatic ones. If Danny was an adult, this finding may mean more .... but it could mean a virus, bacteria, or chronic inflammatory disease like Crohn's or Lupus.)

The GI recommended following up with rheumatology given an increase in his joint pain. (Danny's ANA was positive, but just 1:40, when he first became ill, but he did have 2 normal ANAs after that.)

Danny had a cold last week as was coughing up bloody phlegm again, but thankfully that only lasted for a few days. We have a pulmonologist appointment in Nov.

Hi GI did not want to do a repeat colonoscopy yet and we are to follow up with him in about 4 months. I am debating going to a different hospital for a colonoscopy and possibly endocrine testing. (still not sure) Danny last colonoscopy was almost 2 years ago and it did show eosinophilic inflammation in several parts of his digestive tract and active inflammation in his cecum. They could not access his terminal ileum for biopsy. (pillcam last year looked normal)

Danny still has constant fatigue, headache, ab pain and D 3-5 times daily/nightly.

Thanks for listening if you made it this far!
:::link:::
Click to expand...

I have got some symptoms in common with Danny except with me it is a tendency towards hard stools (occasional diarrhea), but I too get headaches, joint pains (including sacro-iliac), fatigue, have eye floaters, some abd pain, occasional mouth sores/ulcers, acid reflux, body temperature issues, and sore throats. And I too have normal inflammatory blood markers: ESR and CRP .. even when I have infections and have gastritis/tendonitis, etc (meaning active inflammation) .....which is so frustrating. And my calprotectin was normal or low. I would not ever take these normal bloods to mean there is no active inflammation (as my previous doctors would have me believe, which is ridiculous if they have just diagnosed you with an "itis" in the first place). And there is at least one other contributor to the Crohns forum who has been diagnosed with sub-clinical Crohns but has low calprotectin too. If I find the link I'll repost :::here:::

The sore throats can be caused by the reflux but might be something else too - has Danny had hi secretory IgA tested? Other Igs? It is worth looking at IgA in particular - both secretory and serum IgA.

I think you should keep an eye on the ANA and get it retested at least once a year, preferably when your son has some of his joint issues going on. It can certainly go up and down. Mine was sky high in April 2012 when I was flaring quite bad. Had a period of remission in July/Aug 2012 after I had been on Zithromax and was in Egypt, away from a lot of home stress, and it was within the normal range ....most likely because I was not flaring at the time with any of my illnesses in the main (just some mild GI issues). I am flaring badly now worse than in April 2012 so I assume it is even higher (not had a retest). Basically though it can go up and down. Did they look at anti-dsDNA (a Lupus marker) and anti-CCP (a Rheumatoid Arthritis marker other than RF)? Have they also ruled out Behcets Disease (with the mouth sores and joint pains)? You can certainly have intestinal symptoms with all of the rheumatological diseases, I think.

Myself I was recently diagnosed with UCTD (leaning towards Lupus? - antidsDNA) which has solved a large piece of the puzzle of my own 'mystery illness' - it might explain at least some of my GI symptoms. I believe it does explain my bad headaches/head pains (with migrating "neuralgia" facial pain for the past decade. How does Danny react to insect bites? How does Danny react to NSAIDs?

However, I also think I have MAP - because of the positive Zithromax response, and could explain worsening response to steroid suppositories.

When Danny next has a colonoscopy, I suggest you ask them to run a PCR test on a biopsy from any inflammatory looking area. If they can't do that themselves - push for them to send the sample to a veterinarian lab.

I take turmeric but I make my own tablets. I take a few of these, a few times each day and this has certainly helped some of my GI issues quite a lot (specifically anorectal pain and fat digestion). Black pepper boosts the curcumin part of turmeric, and also it needs some fat for optimum absorption. Plus I think there is wisdom to "cooking" the turmeric slightly as they do in India, etc, with spices. I think you have to be careful with turmeric if you have diarrhea (can make it worse with some) and also if there is suspected liver disease or bile duct issues. Turmeric increases the production of bile.

Oregano oil (as an antibiotic) also helped me a lot over the past year but I prefer not to recommend it on the basis I believe it worsened by arthritic pain - though I could be wrong.

I am looking now to purchase raw goat's colostrom or raw camel's milk if I can find either here in the UK. Camel's milk has been touted as a superfood. Camel's milk has apparently got some unique immunoglobulins, which in the context of having any auto-antibodies sounds interesting. There is a nice read by Julie Matthews (a certified nutrition consultant) on the subject...an article entitled: Camel Milk: Healing or Hype?.

I sincerely hope you can get to a definitive conclusion regarding Danny's illness and have him on the treatment he so deserves. Stay strong and positive. Don't let it beat either or you down. Keep asking questions, getting tests, trying various supplements, and trying various treatment protocols, etc...

Best wishes.

((hugs)))
juljul xx
 
I figured I would post an update .... Danny is continuing to do very well! He made it through the entire year of school last year (after 3.5 years of home tutors) and made many friends. He has lost 50 pounds (he gained weight when he was ill) and looks like a thin but very healthy young man. He even had a part-time job this summer. He still has constant mild abdominal pain and D several times a day ... but most other symptoms are gone. He is not on any medications or special diet, but does eat lightly and avoids most meats and fatty foods. His GI (who is so happy to see Danny doing so much better) cautioned us not to get too high when things are good, nor too low when things are bad, since these illnesses tend to go up and down. Danny said this last summer was the best summer of his life. Tomorrow he starts 11th grade.
 
I would have posted sooner... wanted to ask what happened when Danny tried LDN, but when I read about his candida issue, it seemed moot. For whatever reason, Candida is the Achilles Heel of LDN. And, considering where he is in life... in the 11th grade, it just would not be wise to try it again... if the candida could be brought under control.. as the most likely result at first would be a downturn, possibly serious, in his condition. I wish I could be of some help. Offer advice. Do something. I too, had what they call an 'atypical case'. There are still some doctors who swear you can't, simply can't, have both Crohns and Ulcerative Colitis. Just goes to show that doctors aren't infallible, they don't have all the answers. One needs the expertise of a specialist when one knows for sure what it is their dealing with... but, when the diagnosis is cloudy, a specialist may not be the best choice. They seem to focus on just their field, what they expect to see. Makes you wish there really existed a doctor like 'House' as portrayed on TV. My thoughts are... finding some Crohns lesions mean he does have it.. to what extent, who knows. But my gut, and your story, tells me it is just one piece of the big picture puzzle, and there are too many other pieces missing at this point. God speed. All the best...
 
Wow. What a lot you and Danny have been through......He sounds like a very strong young man, and you two sound like a very good team.

May his improved health continue.
 

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