Update on my 7 year old son, Cam

[Tchambers]

Hi Everybody... a while back I introduced my family and specifically my seven year old Son Cam.

Long story short, Cam who was having a mild but months long stomach ache had just tested positive for Crohn's on a Prometheus 7 blood test. But then we had an 8 week's long (agonizingly long) wait to see the right GI.

Well, we are now ten days away from that doctor visit and still waiting and unsure of where we are with this illness. We still only have the Prometheus test results and nothing else other than a mild tummy ache that actually (this month) has mostly subsided. For now at least.

The literal mourning and dread and fear we faced right after learning the blood test has subsided. Replaced by a sense of knowing more about the disease and becoming as comfortable as we could that we just don't know yet what is up with him. And knowledge of the illness, which I had never even heard of before this, has helped.

What has also helped is that Cam's tummy ache has mostly gone away since I wrote last. We taught him to "grade" his discomfort on a zero to 5 scale, and for the last 6 weeks it has on most days been zero. And if this process has brought anything to front of mind, it's to live one day at a time.

A good day is a good day, and live in the present. Wise advice for living no matter what.

And the knowledge and advice and kind wishes we have found on this discussion board has already been more helpful than we can say.

I'll be sure to update everyone with what his first meeting at the GI goes like in ten days, or if Cam starts showing other symptoms.

Thanks to you all again,

Tim

 

[Crohn's 35]

Thank you for the update and wonderful news :banana:!

One good thing he can use is probiotics a good one and it should help keep everything going good for him. Probiotics dont interfere with meds. Good stuff, let us know what the Gi says. Good luck!!

 

[Tchambers]

Thanks

I will and as you can imagine, have been reading all I can about efforts around probiotics and vitamin D and ANY and ALL possible diet modifications... and we looked somewhat in vain to see any statistics on if the prometheus 7 test by itself could be a false positive.... (short answer, possibly but not likely and no way to tell until further real tests, likely scopes) ... and we are taking good notes on all of Cam's physical stomach aches etc...and looking up family histories on any Crohn's or possible Crohn's instances....

 

[xJillx]

I am so happy Cam is doing well. And you have the right attitude - take it day by day. This was difficult for me to accept being an A type personality wanting control over everything; but that's just not how this disease works. And if you can accept that is how it is going to be, good days and bad, it makes life much easier than fighting it. However, with a food diary, you can try to pin down patterns of things that make symptoms worse and avoid those things in the future. Please continue to keep us posted!

 

[Keona]

Hi Tim,

I hope Cam continues to be doing well. Please let us know how his appointment goes and glad you found the forum - there are a lot of great parents on here looking to help their children. It is so great to know that!
Wendy

 

[Grumbletum]

It's a long, agonising wait, isn't it? Going through it myself at the moment. The folks on the forum have been great on advising ways to help with the symptoms while not on drugs and they have really helped.
So glad the wee one is feeling better - long may it last

 

[DustyKat]

Hey Tim,

So good to hear that Cam's symptoms have settled and I so hope they stay that way. Good luck with the up coming appointment and keep us posted on how Cam gets on.

:goodluck::goodluck::goodluck:

Thinking of you, :hug:
Dusty

 

[ameslouise]

Hi Tim and welcome to you and Cam.

So glad that he is feeling good these days. You are right to take it one day at a time. As I am sure you have read, we never know from day to day how things will go!

Why the long wait to see the GI? Where are you located? It would be helpful to put that in your user profile. Advice for those in the States differs from advice for Canadians, Brits, Aussies, etc. as all the health care options are different.

Good luck with the appt - keep us posted!!

-Amy

 

[Jer's Girl]

Hi Tim! I'm so sorry that your family is going through this, but rest assured, people with Crohns can live active and productive lives-just not all of the time. It can't be easy to watch your child be in pain, bit I really believe that having this disease has helped me to become a more compassionate, open person. Some challenges really do contribute to the people we become in a good way. Keep us posted! Hope your boy keeps feeling better and better!

 

[CDDad]

Hi Tim,
I'm glad Cam is feeling better. I hope it continues!