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12-20-2010, 12:11 PM   #1
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.

Last edited by dannysmom; 09-08-2013 at 10:04 AM.
12-20-2010, 03:33 PM   #2
Silvermoon
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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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Last edited by Silvermoon; 12-20-2010 at 03:37 PM.
12-21-2010, 05:14 AM   #3
crazycanuck
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Hey there really sorry for danny's and your troubles I really hope he gets some relief soon and never feel embarassed to post. Welcome to the forums.
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12-31-2010, 08:36 PM   #4
dannysmom
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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.
01-01-2011, 08:56 AM   #5
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Have food allergies been ruled out? After 20 docs, I can't imagine where else you'd turn. Good luck!!
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01-01-2011, 09:13 AM   #6
dannysmom
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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.
01-01-2011, 09:35 AM   #7
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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!
01-19-2011, 10:32 PM   #8
dannysmom
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Update: Danny was diagnosed today with Cystic Fibrosis. This can attribute to all of his GI symptoms.

Last edited by dannysmom; 01-20-2011 at 02:41 PM.
01-19-2011, 11:00 PM   #9
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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....
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01-19-2011, 11:37 PM   #10
dannysmom
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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
01-20-2011, 10:12 AM   #11
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Sorry to hear he has CF, but at least now you have the answers you can begin appropriate treatment. Good luck!
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01-20-2011, 02:42 PM   #12
dannysmom
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Just read that patients with Cystic Fibrosis are 17 times more likely to develop Crohn's disease ...
01-20-2011, 02:49 PM   #13
MADiMarc
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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
03-19-2011, 10:23 AM   #14
dannysmom
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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.
03-19-2011, 04:42 PM   #15
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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



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Pentasa 3 x 1000mg granules
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03-19-2011, 04:47 PM   #16
Christie
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I hope evrything goes well for Danny xxx
03-21-2011, 04:00 AM   #17
DustyKat
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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...........



Take care,
Dusty
03-21-2011, 05:15 AM   #18
Keona
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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
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03-21-2011, 07:07 AM   #19
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Hi Jeanne - Just wanted to pop on and offer my support. I hope you are able to get some answers very soon.

-Amy
03-21-2011, 11:37 AM   #20
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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.
07-22-2011, 08:01 AM   #21
dannysmom
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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.

Last edited by dannysmom; 02-26-2012 at 03:06 PM.
07-22-2011, 09:32 AM   #22
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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.
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07-22-2011, 05:03 PM   #23
DustyKat
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Oh my Jeanne, you must be at the end of your tether with all this and seeing Danny suffer for so long...

Are you keeping a diary of Danny's symptoms?

Dusty. xxx
07-22-2011, 05:20 PM   #24
Crohn's Mom
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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~
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07-22-2011, 07:23 PM   #25
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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!!
07-22-2011, 08:09 PM   #26
dannysmom
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Are you keeping a diary of Danny's symptoms?
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!!!
07-23-2011, 04:28 AM   #27
DustyKat
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Have a look at the diary in the wiki and see if there is anything there that you aren't already covering...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck hun...

Dusty. xxx
07-23-2011, 01:09 PM   #28
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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?
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07-31-2011, 08:28 AM   #29
dannysmom
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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
07-31-2011, 07:28 PM   #30
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I doubt anyone noticed but now we all know!!...you are losing your mind

How's Danny doing?
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