Positive blood test for 7 year old.

[4boys]

Hi,

I am new here. I have a question concerning my seven year old son. He has always had reflux and other GI issues. In a recent scope the doctor found chronic inflammation in his stomach. He then ordered the IBD blood test and it came back positive. The doctor did a colonoscopy and did find an area that he was concerned about. He said the area is where Crohns is most commonly found. After looking at the biopsy he does not believe the area is severe enough to actually be considered Crohns. It just seems to me that he had the positive blood test, plus the 2 areas of inflammation that it seems strange that the doctor would not dx Crohns?? I just don't want it to go completely untreated and then becoming severe later. Do y'all have any ideas or think I should get a second opinion?? Any help will be greatly appreciated! Thank you, Rachel

 

[Crohn's 35]

Hi Rachel welcome to the forum :bigwave: I read your son's story, and it very well sounds like Crohns, and I would seek another opinion. Crohns is very hard to diagnose and maybe he wants to be 100% sure in his/her mind that he does in fact have Crohns, because it can be a long road of meds for him, and maybe unnecessary. You are right to get a diagnosis fast because in youngsters they lose the nutrition to grow. Alot of people here have had symptoms for years and never get a full diaganosis.

Just my opinion , I really hope you both find out what it is. Please keep us updated, and hugs to you and your son for going thru a rough time.

 

[Dexky]

Hi Rachel, EJ too was prone to GI problems for several years prior to his dx. The last straw for us was a 2 month bout of bloody d. Has his growth been retarded? EJ's growth came to a standstill about 9 months ago. Keep an eye on his bowel movements. He may try to hide things from you. Hopefully, it is just something he'll grow out of. Good luck.

Oh, is there any family history of IBD? There wasn't for us but it seems to be a common factor for many on here.

Welcome for now, I hope you have no reason to stick around but if you do, we'll be here for you.

 

[Mountaingem]

:welcome: Yes I agree, a second opinion is a good idea, I had a similar experience when I was fourteen. I couldn't get a doctor to give me a definitive diagnosis or any treatment until I had extreme bleeding and ulceration.

Many doctors would start your son on preemptive treatment now and that could spare him more suffering needlessly.

 

[4boys]

Thank you for your responses! Yes he is delayed in his growth, he is 7 but the size of a 5 year old. He is also non-verbal w/Autism, so I have to guess when he is not feeling good. As far as I know there is not a hx of IBD, there is a family hx of Celiac and IBS though.

He does actually go back to the GI doctor tomorrow, so I will see how he explains all of it, I have only spoken to his nurse since the colonoscopy. Unfortunately this is already his 3rd GI doctor. They always like to try to dismiss his symptoms because of his Autism, yep they are VERY frustrating!! Thank you all again and hopefully I can get more questions answered tomorrow???!

 

[Crohn's 35]

We are keeping our fingers crossed for you and your son. There was another mom on here with a daughter who could not speak but I am sorry, I can't remember who she was, hopefully some one on here will remember?

Let us the results of the doctor appt please. Good luck.

 

[DustyKat]

Hi Rachel and :welcome:

I also agree with getting a second or more opinion. As a parent we have to advocate and fight hard enough as it is let alone with a child that is also non verbal with Autism. You know your son better than anyone so don't let them make you feel inferior or blow you off and if they do go elsewhere. You need to be able to trust the people looking after your son's health.

I wish you all the best with the appointment tomorrow and you will be in my thoughts. Please keep us posted.

:hang:
Dusty

 

[Guest]

hi Rachel, welcome to the forum.

i completely agree with everyone's thoughts here - you should seek a second opinion. if you get to see a Paediatric GI, then all the better. the fact that two indications of IBD have been found should be enough to prompt any good caring doctor to either prescribe something to alleviate the inflammation, or order further investigations..

i have a son with Asperger's, and although he is not non-verbal, getting him to tell me things about feelings, pain etc has been like banging my head on a brick wall all through his life, so i know what it's like to have to be the analyst and voice for these kids.

good luck, please keep us posted, and i hope you can find the right person to get your son's symptoms under control soon.

 

[4boys]

We just got home from the doctors, he wants to do an upper GI w/small bowel follow through. I was also very surprised to see that he had lost 2 1/2 lbs since we were there about a month ago. He eats all the time, so I don't know what to make of that?? The nurse seemed more concerned than the doctor though. He also said that I need to contact him if I see blood in his stool, if he runs a fever, and if he has changes in his reflux pattern.

He did seem more concerned than what the nurse had initially led me to believe when I spoke to her about his bx results. Now we just have to wait until the next test.

I also forgot to mention that he also found a polyp during his colonoscopy. Is that normal for a child with Crohns?? It just seems so young to have a polyp?? I also saw his growth chart today and it looks like his actually falling off the chart. He has normally been in 5th percentile.

 

[Silvermoon]

Hi Rachel.... sorry I never found this thread earlier.... :redface: .....

"Normal" for a child growing up with IBD is anything BUT normal.... so many different things happen.... different parts of the autoimmune system are affected by the actual disease itself... and different parts of the body will grow and develop differently depending on what part of his GI tract is affected and what minerals/vitamins can get through it to be absorbed and used in the body.....

Are polyps normal? In my opinion....no..... I was diagnosed at the age of 13 with Crohns...have had a scope minimum of every two years...and have never had a polyp in my life.....every other "side effect" known to man..but no polyps.....

I wish I could answer your questions further.... some I will be able to...some only time will tell..... Hopefully someone WILL be able to give you the answers you need.....

I wish you and son well......