Just learned our 7 year old tested positive for Crohn's on Prometheus Blood Test

[Tchambers]

Here is our story:

Last week was the first I'd ever heard of "crohn's disease" when my 7 year old son received a blood test back. It was the Prometheus ibd Serology 7 test and it stated that he was showing a "pattern consistent with IBD: Crohn's Disease."

Previous to this our son (who is named Cam) had only a persistent but mild stomach ache that he could ignore easily -- but that did not go away for the last 8 weeks. Other than that he seems so healthy and happy.

We got the basic blood test results last week and the specific results today.

Our main pediatrician is not available to go over this in detail and he suggested all further work happen with a GI he recommended. We are set to meet with this new pediatric GI, but have an excruciating 7 weeks while we are left not knowing several things. (Fortunately Cam is in almost no discomfort).

But we are in some degree of shock, and are learning all we can about the disease as we await our first visit to his new GI....

 

[xJillx]

Welcome! I am so sorry to hear about your son. I am glad he isn't in much discomfort, and perhaps with treatment he can remain that way for a very long time! I, too, never knew anything about CD until my doctor gave me the diagnosis. My first question was, "Will I have that forever?" The answer was yes and I began my endless research. This forum has a wealth of information and I hope it helps you as much as it has helped me!

 

[Crohn's 35]

Welcome to the forum, parents are always welcome and there are many parents with children who have Crohns. This is the most informative and supportive site. I am so sorry you and your son and family are dealing with a difficult and sometimes very painful disease. It sounds like he is in the early stages, and most children and adults as a general rule start on Pentasa. Very mild antiinflammatory drug. Not everyone is the same, in this disease, and since there is not a cure, there are some things he can do for himself. Most people don't tolerate dairy, causes gas. Growing boys need nutrition and if he has a painful day, Ensure with extra calories can help him get the nutrition he needs.

I am assuming you are in the US? Medications and procedures can differ from Country to country but basic problems are the same. Ask any questions you may have. A Gi or specialist could recommend a scope or ct scan. Just to see if there is any visable disease.

I hope you continue to learn here, as I wished when I was diagnosed there was computers and this amazing forum. Hang in there, we are here to help, even though we are not doctors, we know first hand what it is all about.

Glad you found us!!!

 

[Astra]

Hi Tchambers
and welcome

So sorry your son has CD, hopefully he's not in any pain, luckily you've got a quick diagnosis and soon, appropriate meds.
Any questions, we're all here for you!
lotsa luv
Joan xxx

 

[Tchambers]

Thank you all for the encouraging thoughts and wishes....

We're at a place now where we are still somewhat in shock, and have only a Prometheus blood test to go on, no other testing yet. We cannot tell how accurate the Prometeus test is by itself - I've seen numbers ranging from 90 percent accurate to others saying it has as much as a 30% false positive rate.... but at any case we are preparing ourselves mentally as much as we can, and assume now that at best it is highly likely that he has this disease.

And fortunately for Cam (our son) still is only dealing with a mild tummy ache and each day we hope that it lessens and no new symptoms appear.

So all we can do now is wait for the GI.... and then likey wait again for the other real tests....

 

[AZMOM]

It is a lot to take in! I'm glad he is feeling "okay" although I know not perfect. My daughter was diagnosed at 6. She's 7 (actually almost 8) now and has come a long way. I know waiting can be the hardest part. Hang in there and I'm glad for you that you found this site. There is a great community of caring people on here.

 

[Sue-2009]

Its always a shock to hear...This is a good place to come and learn...amd maybe we can learn something from you! Good luck! S

 

[Tchambers]

Thanks again for the encouragement to everyone....

 

[MADiMarc]

Hi, Tchambers and welcome! Please be sure to keep us up to date (as much as you are comfortable) on Cam's condition. I am so happy for him that he has only " mild" tummy aches but as a parent it is hard to watch, isn't it? On this forum are many, many parents looking for answers, support, looking to share their experiences and offer support. Your head is spinning right now, I know. All you want is to make your baby all better. I get that, we all do.
My best to Cam and his support system (otherwise known as parent(s)),
Michele

 

[Dexky]

Same with us TC! I'd never heard the word crohns until my son's diagnosis. I assume you have been monitoring his bowel movements. Does he go often? any diarrhea? blood or mucous? Two months seems like a long wait to meet the GI. I hope he isn't in too much pain!!

 

[Astra]

Hi jonjon
and welcome

I've asked a Mod to move you to your own thread so that you won't get lost in this thread and will then get the big welcome you deserve.
See ya later when you move!
Joan xxx

 

[Tchambers]

Michelle, Mark, Joan and Jon: Thanks again for all the great comments, support and good advice....

To answer Mark's question, no diarrhea or bleeding at all so far, only a moderate stomach ache that is seemingly always there, and every day (as you can imagine) we check to be sure it's not getting worse. So far almost no change whatsoever.

And thanks Michelle for the invite to keep everyone up to date. I'm resigned now that we just have a seemingly forever (about 8 more weeks) wait before we even see our GI and then however long after that until we get his tests done and back.... so a long stretch of having nothing but the Prometheus test to go on... a long window where we need to just be patient, have faith, take good care of Cam each day and not know.

But every day Cam is only dealing with a tummy ache and nothing else is a good day, and one thing that this has already done is force my wife and I to only think one day at a time.

And this community has already helped in the comments here, and in what I see everyone doing to support each other...

 

[DustyKat]

Hi and :welcome:

Sorry you had to find your way here but it is a great place for support and info. Oh man an 8 week wait, nothing worse than waiting! Even though your son seems to be only experiencing mild stomach aches I still think it may be worthwhile keeping a diary between now and the GI's appointment. Here is a link to one we have here. Just customise it to fit your son.........

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

Also write down any questions you think of along way that you may want ask the GI.

I hope things stay settled for your son. Good luck!

Take care, :hug:
Dusty

 

[Tchambers]

Dusty: a very good idea, thanks....and thanks for the kind wishes....

 

[jonjon9]

I clicked the link and all I see is a response from someone else to you, just e-mail me direct at [email protected].

Jonjon9 (Wendy)

 

[slightlysilly]

Welcome!!! This place is Crohn's info GOLD!!! I just happened upon this space last week and you're going to have to pry my cold dead hands off this message board. Crazy, welcoming, awesome, supportive people and whatever the question, SOMEONE has an answer...

...and here's a bright side for you... I've probably had Crohn's for about 15 years give or take... I just had the prometheus test last November and it had the big FAT CROHN'S diagnosis on it... and boy did I jump for joy!!!! There's a NAME for what I have and it's not in MY HEAD!!!!! But then, now I take buckets of pills and go to the doctor all the time... but... you know.. I'm not wandering around wondering what is wrong with me anymore...

Shoot me, I'm a optomist. :banana:

Cheers!

 

[Callie]

While you are waiting, read Breaking The Vicious Cycle by Elaine Gottschall.

http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818/ref=sr_1_1?s=books&ie=UTF8&qid=1330622081&sr=1-1

Go to the doctor armed with as much info as possible.

My daughter just got diagnosed last month. So far she has had a big turnaround with this diet, and we added LDN since it is quite safe. We are trying to avoid the immunosuppressing drugs that the doctors recommended. Of course everyone is different, but doctors generally don't recommend this diet since there aren't a lot of studies behind it (just a few small ones, plus a lot of anecdotal evidence). Of course pharmaceutical companies fund all the research and no one wants to fund research that would lead to NOT using medication. Even our doctor admitted that. Also the diet is hard to stick to, but our doctor gave us her blessing to try, and so far, so good (knock wood).

 

[dvdgrs]

Diet/Antibiotics/Stress

How is Cam's diet? Has he been on antibiotics recently? Stress?

These are what I feel has caused Crohn's in my gut.

 

[dragonfly]

if it was only a blood test that the doctors are basing a DX on...thats nothing to go on. ive had the disease since i was 5 and my blood tests did not come up showing it. i was misDX but even so you cannot just believe that. my parents where told all kinds of crazy things about what was wrong with me....finally told it was UC after many meds & many years i had emergency surgery (my best friend was killed in a car accident at age 15) and the whole dealing with that left me just deliltated when i saw the dr i was admitted ASAP and after 3 weeks on TNP scheduled for removal of the entire large intestine....a surgery that was supossed to cure the UC, i would have a illisotomy for 3 months while the insides & J pouch healed but would be reversed and cured.....well this did not happen...was told afterwards months later while still having problems it was crohns more than likely all along. i am 32 now have 2 children (via C-sections) i have crohns, multiple fistulsa, just DX with hidradenitis suppurativa few months back and have since started remicade. its a long story all my health issues....guess the point im trying (yet having a hard time making!!) to make is PLEASE dont ever just settle. my parents fought and fought for me when i was 5 & 6 being pushed back and forth and told this and that...my parents NEVER took no or we dont know for an answer. dont be afraid to ask for a second opinion or hell even a 3rd!! i am so sorry for the fear that you are feeling, i would not wish that on anyone. my drs all of them have told me there is a 50/50 chance of passing any of my diseases onto my kids but i try my hardest not to worry about it....if it happens it happens i cannot stop it. i can only hope to be as strong as my parents where when they were going through it. i wish your family the very best of luck and i will say a prayer than it was just a reading not a DX.

 

[tots]

I was refered for that blood test and was told it was no longer used. Hmmmm

 

[Tesscorm]

Hi Tchambers,

Welcome to the forum but sorry that it was your son's diagnosis that brought you here.

You've had lots of welcomes and advice; no doubt you realize this is a wonderful forum with lots of knowledgeable and supportive members!

Have a look around the subforums - you'll find some on treatments, diets, etc. There's a subforum for parents, all whom can understand your concerns and worries.

Also, have a look at the Enteral Nutrition subforum - it's a treatment very often used in Europe but less so in Canada and even less commonly in the US. Not sure why as it has a comparable success rate as steroids at inducing remission in children but absolutely no side effects and very nutritionally beneficial! Its a bit more difficult to maintain than taking a pill or injection, perhaps why it's less often used??? But, certainly worth considering. Have a look at the information available on that forum.

Good luck!!!