Extremely quick diagnosis of 3 yr old- moving too quick

[RexMom]

Long story short- my son has had blood in stool on and off for about 4 months, lost weight, and overall had become a different child- no energy, unhappy, etc. At his 3 yr checkup in May, we found out he was severely anemic. I saw the gastro specialist last Monday 6/1 and we did some blood work. It showed markers for IBD and he was brought in for a colonoscopy/endoscopy on Thursday. The preliminary guess was Crohn's. Today I spoke with the dr and she confirmed a diagnosis of Crohn's based on where the inflammation is and the biopsys. So in 8 days he has a diagnosis. He is on flagyl, Prilosec, prednisone, and iron supplements.

While I am glad I am getting answers so quickly, I feel scared that this went so quickly. I feel a little like I am just saying yes to everything, filling the scripts, and dosing my baby. I am just looking for any advice for a newbie. I've been lurking on this forum and feel so confused and scared bc I don't know what is in store.

 

[Tesscorm]

Welcome to the forum RexMom :ghug:

I had a similar experience with my son, although he was much older, 16 years old. He had also been sick off and on for 3-4 months, we finally took him to the children's hospital, at 7am - by noon, they were tentatively diagnosing him with crohns! He was admitted, had scopes a few days later and diagnosis was confirmed.

It did seem surreal! While my son felt 'sick', he wasn't really much sicker than he would have been with a stomach flu... although there were certainly other signs - anaemia, fatigue, weight loss, etc. It was certainly tough to understand, grasp and accept. :ywow: My son also had flagyl through IV - it helped him quite a bit!

What helped me most was learning as much as I could about crohns and the members on this forum are an incredible resource for information, support and advice. Ask lots of questions, feel free to vent and share your worries - we've all been there! :ghug:

There are a number of parents here with young children... I'll tag Farmwife and Izzi'smom but I'm sure others will be along as well.

Take some time to look into exclusive enteral nutrition (EEN) - nutritional shakes that can be used to help induce remission and, as a supplement, to help your son regain his weight and maintain a healthy nutritional status.

Also, you don't mention a long term maintenance medication. Pred is used to induce remission but then a maintenance medication must take over. Usually a maintenance med is started at about the same time as pred because most maintenance meds take a bit of time to become therapeutic. Has your son's GI mentioned any long term medications or a treatment plan after pred is finished?

Where is your son's inflammation located? The location(s) of inflammation can cause different symptoms and sometimes affect the treatment choices.

I know it's so much to take in at the beginning, it's hard to even know what to ask... just ask whatever comes to mind... eventually, it will all fit together.

There seems to be only one thing that is certain with IBD and that is that it affects everyone differently, everyone responds to meds differently, etc. It's easy to become overwhelmed with things you hear, see, read...

Here is a link to Kid's Success Stories... it helps to see that kids do recover from their flares and they do respond well to treatments.
http://www.crohnsforum.com/showthread.php?t=27079

:ghug:

 

[CrohnsKidMom]

Welcome to the forum, but sorry your little guy has been sick. My son was dx'd at age 8, and it was a quick dx too. Within 2 months of the appearance of his first symptoms we had confirmation it was Crohn's.

It is disheartening to hear your child has Crohn's, and overwhelming to get a quick diagnosis and have tons of information thrown at you so quickly. I think you will come to feel that the quick diagnosis is a blessing though. So many kids are sick for so long without a diagnosis. Now you have a treatment plan and you can get your boy on the road to health again. Having said all that, if you are having doubts that the diagnosis is correct, you can get a second opinion.

Try to read as much info as you can about Crohn's and it's treatment. This forum has been of great help to me. I hope it will be for you too. Take care!

 

[afidz]

Its never a ad idea to get a second opinion, keep in mind.
As for the quickness of his DX, there are some people who go years waiting for a dx. But it is possible for a quick dx. I am not saying go searching for other answers, but find a balance and use due diligence.
I have been diagnosed for almost 8 years now. I suffered for a while before ever going to the doctor. Eventually I went to the ER, they scheduled a colonoscopy. I woke up from that with a GI i had never met tell that I had Crohn's. I hear (read) people's stories about waiting to get diagnosed and I start to doubt myself. Why was I diagnosed so quickly when other people wait years? I guess there are just some clear cut answers.
I hope your son starts to feel better, my heart goes out to him.

 

[Jmrogers4]

My son had a quick diagnosis as well went from he doesn't look right, he's not eating and looks really pale to doctor appointment the following week, GI appointment 3 days later where he said he was 95% certain my son had crohns and scopes a week after that which confirmed, biopsies back the next day. Head was spinning but one good thing about quick diagnosis is the quicker you can get on a plan getting your child feeling well.
It's a steep learning curve but we are here for you to ask any questions, most likely someone or several someones has been through it and can offer advice, hand holding and virtual hugs.

 

[RexMom]

Thank you to everyone who responded. I think we let it go on for too long. We just kept attributing his symptoms to other things...his age (the pickiness and not eating), his new sibling who was born in march, me being home as I worked long hrs since he was 3m, etc. I brought the blood to the attn of the pediatrician but he brushed off my concerns saying it was a fissure that was becoming irritated when he went to the bathroom. I was starting to blame myself for his overall behavior so although I am sad he is dealing with this I am sort of relieved there is a reason for all of this.

The GI dr actually told me that I should get a second opinion so I have that scheduled for next month with a dr who specializes in pediatric IBD specifically. I am also seeing an immunologist next Tuesday. Due to timing, we don't have all stool samples in yet so I guess we might know more in another week or so.

The inflammation is located in the stomach, colon, and a little of the small intestine. He didn't show that he was in much pain except when he had to use the bathroom and when he was actually going which the Dr was shocked about when she saw how inflammed he was.

I have an appt with the GI dr next week to sit down and talk about everything. I am trying to gather my questions and have then ready.

 

[Pilgrim]

My daughter was diagnosed at 3 also. I suspect that these young kids get habituated to pain since they may have always known it. It was also the case with my daughter that our GI was shocked to see the damage because she looked and acted just fine.

It is information overload in the beginning. Keep asking questions. Unfortunately the biopsies are pretty specific if they have shown Crohn's (granulomas). One of the first questions I remember asking was if there was a chance it was something else. Unfortunately, no.

It sounds like a good plan to get to a pediatric GI. There is a safer but as effective alternative to prednisone and that is EEN (enteral nutrition). I would ask about that if you are interested. It can help get things under control while a maintenance med takes over. You may go through some different medications. That's normal, too. Sometimes it takes a few tries to find what will work.

Take care of yourself too, it is stressful business.

 

[kimmidwife]

Rexmom,
I am very glad you are taking your son to see an immunologist. We have discussed severely times on this forum the importance of young kids diagnosed with IBD seeing an immunologist since these kids can have other things going on in which IBD is actually a secondary disorder.
Being in New York you have some good choices for doctors there. We have heard really good things about the new head of pediatric IBD at Mt. Sinai, dr. Dubinsky I think is her name. Good luck and keep us posted!

 

[RexMom]

kimmidwife,

We saw the immunologist yesterday. From the bloodwork drawn and our discussion, there are no signs of an immune system issue. There are a few more genetic and other tests she has ordered though. Your reasoning is exactly what the pediatric gi told us from day one regarding the immunologist.

I am glad you mentioned Dr Dubinsky as I have my second opinion scheduled with her next month. It's a bit of a wait but I am hearing so many good things about her that I am hoping it is worth it.

 

[DanceMom]

Just curious, but what immune tests were done?

 

[malorymug]

We were diagnosed quickly too. Family doctor noticed he was losing weight (not even I notice, gah, the guilts) sent us to GI, did a coloscopy/EGD. I was expecting to hear celiacs (I had never even heard of crohn's) the surgeon came out showed me pictures, and diagnosed on the spot, crohns disease. I'm sure he kept talking but I didn't hear another word.

It feels quick now, but there are times when it is going to feel really slow.

Sorry about your son's diagnosis.

 

[Maya142]

We have seen Dr. Dubinsky and really liked her. She wasn't able to help my daughter much because we were going for an issue other than IBD (gastroparesis - since M's IBD is under control) but she was very nice and VERY thorough.

 

[Badtzcat]

My son is 3 and was diagnosed last September (at 2 years old). This has been the hardest thing I have ever been through. We recently started SCD diet and he is also on Remicade, Methotrexate, Pentasa, Predisone, folic acid, and multi-vitamis and a probiotic. I have seen a difference with the diet since the Remicade stopped working.

I know this is hard. It slapped us all in the face. We have been at this since he was 18 months old. How can this happen so someone so young????