We finally have answers!!!! Or so we think...

[katyc]

Hi everyone....

Im very new to the world of Crohn's but not new to all the symptoms and problems associated with it.

Today I got the call from my son's doctor that at 17months old he has Crohn's.....

Any advice..tips.....what to expect at our GI appt on the 26th????


I cant wait to make him bette and to stay out of the hospital

 

[ehs8998]

Wow, that is very young! I am sorry you are having to deal with this at all. What does your little one eat? I know we are told to avoid ALL Gluten, Dairy, and Processed Meats... due to the antibiotics in them.
It is all trial and error at least for us.. somethings work well regarding food, and others don't.. I hope you get some answers and meds that work well for all of you!

 

[DustyKat]

Hi katyc and :welcome:

I'm sorry you had to find your way here but it is a fab place for support, info and even a laugh!

I'm also sorry to hear that your little boy has Crohn's, bless him...:hug:

What symptoms does he have and what tests have they performed?

I would well imagine that your appointment will discuss what they have found and what treatment plan to put in place. Please have a look through the treatment forum and also the enternal nutrition forum contained within it. Enteral Nutrition is a viable alternative to steroids if that is suggested to you but it may be something that is more difficult to implement in a child of your son's age. Do you still breast feed?

Also pop by the diet, fitness and supplement forum. There is a load of useful information, experiences and tips contained within it.

There are other parent's here that have under 5's with IBD and I have no doubt their advice and experiences will be invaluable to you.

If you are wanting an idea of what questions to ask the GI at your appointment then this list may be of help to you. I have copied it from the forum wiki:

*What is my diagnosis?
*Where is the disease active?
*What form does the disease take (inflammation, ulcers, fistulas)
*How severe would you say my disease was?
*What symptoms do I need to report immediately to you, which can wait until my scheduled appointment, and which signify an emergency?
*What treatment options are open to me?
*What does (treatment) do? What side effects should I be aware of?
*How long before I should see an improvement?
*Do I need to take any nutritional supplements such as b12 or iron?

Good luck to you and your boy and please keep us posted on how you are getting on. Please don't hesitate to ask if you have any questions!

Dusty. xxx

 

[imaboveitall]

WELCOME and sorry you're here...if that makes sense :wink:
A baby...wow. I am sad to hear this. There is a mother here who has two under age 5 w/CD, one was dx at 8mos old, look for her thread...I'm not sure how to link it...

Nothing of value to share on one so young beyond some love :ghug: There are several mothers with tiny ones on here.

 

[katyc]

Little history on Jack

Jack was born on 10/5/10....via emergency c-section when his heartbeat when over 280 and then they lost it.....

Turns out I had an infection and Im unsure if they gave me antibiotics are not....Jack after some help was breathing on his own and went into the regular nursery.
Myself, not so good.....

From the beginning I though Jack was different....everytime we laid him on his back he would cry...he would scream through diaper changes....he hated nursing...he would scream in the car....has yet to sleep through the night....

Shortly before six months of age Jack got a temp of 104.8 and we were admitted to the hospital....36 hours later after a spinal tap we learned he had spinal meningitis....15 days later we were finally out of the hospital....to this day I believe it all stems from the infection I had at birth...

He always seems unhappy....he cries a lot....I thought for awhile maybe he was autistic but he makes eye contact and seems to be developmentally on target in some areas.

Jack never really has ate much...including baby food....somedays he eats somedays he does not....at a year was when the diarrhea started....

It has lasted sometimes 7weeks and sometimes just a few days....it can be bad from running down his leg to being small little ones....

He has recently lost 2.4 pounds...and was hospitalized for deyhdration...

He has always had a chronic cough that got better after tubes put in his ears but seems to be coming back...

Jack also vomits here and there....I would say maybe 3-4 times a month...which is so crazy to me since my four year old has maybe thrown up three times in his four years....

He has no blood in his stools that I can telll, but it can be mucusy and stringy...

He also has a tendency to always feel warm

Sorry if this is so random Im just trying to remember all the stuff we have been through...its so hard having a baby when you know something is "off" with them....I have been telling the docotrs this for a long time and I always felt like the were never listening....hopefully now they will....

sorry for all the spelling errors I couldnt get spell check to work!!!!!!

 

[DustyKat]

Oh my goodness, he has been through wringer, poor love. :hug:

How difficult and heartbreaking for you all to see Jack going through all this. Do you think that some of his issues...crying (obvious I know), discomfort in certain positions, broken sleep, lack of appetite...may be related to chronic pain? It is so difficult at this age, as you well know, because they can't accurately vocalise what they are feeling.

Do you keep a diary of his symptoms? If not it may be worth doing so. It helps you keep track of things and may assist with the diagnosis process. Have a look at the suggestions we have in the wiki:

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

Dusty. xxx

 

[polly13]

Hi I am so sorry to hear about baby Jack, you have got great advice from Dustykat about your upcoming GI appointment. My daughter Lucy was diagnosed last year at two an half and would have had symptoms from about 9 months old - so it is not unheard of for a child as young as jack to be showing symptoms and be diagnosed.
How did they diagnose Jack - did they do the scopes etc. if not they will probably want to do them and take some biopsies to confirm the diagnoses.
Good luck on the 26th and keep us posted

 

[Dexky]

Wow Katy, I'm very sorry for your little guy but you've stumbled upon a great source of advice and understanding here! Welcome!

 

[izzi'smom]

Poor sweetie...glad to see that you found your way here and hoping your appt goes well! Welcome!

 

[katyc]

Oh my goodness, he has been through wringer, poor love. :hug:

How difficult and heartbreaking for you all to see Jack going through all this. Do you think that some of his issues...crying (obvious I know), discomfort in certain positions, broken sleep, lack of appetite...may be related to chronic pain? It is so difficult at this age, as you well know, because they can't accurately vocalise what they are feeling.

Do you keep a diary of his symptoms? If not it may be worth doing so. It helps you keep track of things and may assist with the diagnosis process. Have a look at the suggestions we have in the wiki:

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

Dusty. xxx

During the middle of night Jack usually, tosses and turns and archs his back....we co-sleep so I try to rub his back he usually sleeps on his tummy but I think that has been constant since his meningitis....he also sits up a lot then falls back over...I thought maybe he was having night terrors too....

We were diagnoised with his blood test....
My question is on our appt on the 26th...will they give him meds then or scope him?? We already met the GI last week when Jack spent three days in the hospital so she already knows his "life history" when she wrote it all done while speaking with me....
It so hard to get into the GI here that I dont want to have to wait another 4-6 weeks to be seen....
Or will they not scope him at all??
How do they decide what meds to put them on?

Im worried right now because he has an ear infection that we were hoping to get rid of with medicated drops but its not working and he is now getting a terrible dry cough....it seems when he gets sick his tummy issues get worse...

 

[katyc]

I also do think that his lack of sleep, his crying and his lack of eating is all related....but it goes in waves.....we do have periods sometimes weeks of good times and then like in an instant its back to square one.
I have started to keep track of our days in general but its hard....were very busy and Im a recent single mom and full time student getting ready to graduate in May....and we will be moving at the end of June out of state so Im also worried about getting a whole new team of doctors....we are moving to Minneapolis MN so its a much larger city but I know very little about doctors there.

 

[Irene3]

Wow Katy, I'm so sorry your little one (and you) have to deal with crohns at only 17months old!?!?!
I agree with Dusty cat, keep a symptoms and food diary, because you forget the little details of intake/output, and it may help if his is aggravated by foods.
Theres a subforum for parents in the support forum. I hope it helps, and I hope joining the forum, you'll find all the info you need for his nutrition and well being. God bless you for already seeking help, the day his diagnosed, and may you find the best and easiest treatment for him, through your search.
Best wishes, and feel free to vent (there's even a subforum for that) if times get tough.
Take care, and God bless xoxo

 

[DustyKat]

I can't imagine that they won't scope him katy. A scope still remains the gold standard, per se, when it comes to diagnosis. A colonoscopy will visualise the whole of the large bowel and into the small bowel while an endoscopy will visualise the oesophagus, stomach and into the start of the small bowel (duodenum). That still leaves most of the small bowel out of reach but other types of imaging can cover this area. The advantage with scoping is they can obtain biopsies.

Medication is generally prescribed depending on the severity of disease and its location. For those with disease lower down in the large bowel topical medications like enemas/suppositories may be used. Some of the 5ASA class of drugs target certain areas of the bowel. Once you advance past this to the the immunosuppressants and biologics disease location is not of significance as they are systemic.
First line treatment in the US would generally be steroids and ?antibiotics (Flagyl) and perhaps a 5ASA or immunosuppressant. In many other countries, particularly in paeds, Enternal Nutriton, with or without the introduction of a medication at some point, is often used.

I don't know if any other parent's here are familiar with doctors in Minneapolis but perhaps you could ask the question in the Minnesota Local Support Group.

I hope my geography is right! :eek2:

Dusty. xxx

 

[katyc]

I can't imagine that they won't scope him katy. A scope still remains the gold standard, per se, when it comes to diagnosis. A colonoscopy will visualise the whole of the large bowel and into the small bowel while an endoscopy will visualise the oesophagus, stomach and into the start of the small bowel (duodenum). That still leaves most of the small bowel out of reach but other types of imaging can cover this area. The advantage with scoping is they can obtain biopsies.

Medication is generally prescribed depending on the severity of disease and its location. For those with disease lower down in the large bowel topical medications like enemas/suppositories may be used. Some of the 5ASA class of drugs target certain areas of the bowel. Once you advance past this to the the immunosuppressants and biologics disease location is not of significance as they are systemic.
First line treatment in the US would generally be steroids and ?antibiotics (Flagyl) and perhaps a 5ASA or immunosuppressant. In many other countries, particularly in paeds, Enternal Nutriton, with or without the introduction of a medication at some point, is often used.

I don't know if any other parent's here are familiar with doctors in Minneapolis but perhaps you could ask the question in the Minnesota Local Support Group.

I hope my geography is right! :eek2:

Dusty. xxx

Thank you again for all your help.....

Do you think it would be wise of me to call the GI's office and ask what are appt will entail on the 26th.....cause if they have to scope him I would assume that would mean he would have to be put under??? We had already had the appt on the 26th BEFORE we got the call from his doctor of the crohns.....
I just dont want to waste anymore time if we can get him well sooner....
Since Im assuming the 26th appt was just for a re-check or to see how he was doing....
plus his father works out of town and really would like to be there for the scope....

 

[DustyKat]

I would call and discuss what has occurred since that appointment was made. The appointment on the 26th wouldn't involve a scope without you already knowing about it as there is preparation required and yes, he would be sedated.

Dusty. xxx

 

[Dexky]

Hey Katy, I googled pediatric GI's in Minneapolis and came up with UM's ped. gastro site.

http://www.umphysicians.org/Clinics/pediatric-inflammatory-bowel-disease-center/index.htm

It might be a good starting point. Good luck!