Awaiting decision on diagnostic tests

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
May 29, 2012
Messages
11
Hi There,
:sign0085:
When my son was 6 months old, we discover a perianal abscess which was incised and drained followed by a difficult 3 weeks of wound packing, etc. He had another at around 18 months which burst before they could I/D. I was concerned about his bowel habbits and general health and requested a review at the childrens hospital which my GP agreed to.
We saw a consultant when he was around 20/22 months who stated he looked fit and healthy and that there was no need for further investigations or even blood tests so he was discharged. This was despite my concerns. I am a mother of 4 children, all a year apart. Each of my children was potty trained between 1 year and 18 months. Zac was different. Although he could control his bladder ok, at 2 years he was still faecally incontinent. Now I know this is normal in the general population but to me it was not, considering he had gone through the same training as the others. That, coupled with the fact he hardly ever had formed stools, intermittant abdominal pain, one or two episodes of blood in his stools, etc caused us to have concerns.
Anyway, in March this year, just before his 4th birthday, we found a third abscess. They kept saying it hadn't come to a head sufficiently to I/D so it was treated with metronidazole and co-amoxiclav which resulted in the fluid dissipating although we could still feel something there. Within 2 weeks it was back and then settled with the same treatment. This happened a further two times before it burst on holiday in Turkey 2 weeks ago!
In March, he was referred to a Gastroenterologist. He had blood tests and submitted stool samples.
We saw him again yesterday and he stated he is pretty sure he has Crohn's. He thinks there may be a deeper abscess feeding the superficial one through a fistula.
What questions should I be asking? His CRP was 8 a year ago....should I ask what it is now?
The consultant is meeting with the surgeons tomorrow to discuss Zac. He says they will either carry out another I/D and investigate via camera while under or they will give him an MRI and decide on management.
Either will also confirm 100% his diagnosis.
Has anyone had any experience with anything similar?
Which would be the best diagnostic option? If there are one or more fistulas or a deeper abscess there....what would they do?
This is all very new to us so excuse my ramblings. He has only just turned 4 also...if he has Crohn's, would his prognosis be poorer because it has been diagnosed so early?
Thanks in advance guys!!!
 
:ghug:Hi and welcome!

Sorry no advice to offer.
My little farm girl is 3.5. Were still waiting here first GI appointment. She also since 6 mo. old has had "issue". So hard when their this young.
I know others will be along to answers your questions.
I've found this forum and all the parents here to be a wealth of information and help.

Welcome aboard!
Remember your not alone!!!

Farmwife
 
So sorry to hear about your son, what a difficult time. Usually you can call the GI office and ask your questions with the nurse. Or schedule a followup with the GI. My son was diagnosed after months of waiting for an abscess drainage wound to heal - surgery discovered it was a fistula. Then bloodwork showed inflammation and finally confirmed dx with colonoscopy/endoscopy with biopsy and upper-GI flouroscopy. It takes a frustrating amount of time, hang in there!
 
I can't answer many of your questions just wanted to offer my support and let you know alot of parents on here understand the anxiety and worry you are going through and will be able to offer support also. This forum, Parents of Kids with IBD, has a wealth of info in it and when you have time you may want to browse through some different threads to glean experiences of other parents with kids around your son's age.
My son was much older when diagnosed, 15, but the peds GI told me he had probably been dealing with it on some level for a couple of years. He did say the disease does tend to be more aggressive in children but that doesn't mean it is less maneagble. He stated it is the reason alot of peds GIs lean toward the top down approach with kids, meaning hitting it with the harder meds first. Now, understand this is one GI's opinion and there are many others out there and the severity of the child's CD also dictates the treatment as well as where the crohns affected area is located. There are some great people on here that will come by with alot of experienced info for you. I hope that the GI can resolve your son's issues quickly and get him feeling better. Welcome to the forum!!
 
Sorry to hear about your son, poor thing! It's always good to keep an eye on their CRP as it gives an indication of the inflammation (of course my son's has always been fine :yrolleyes:). My son has had an abcess and fistula which we are still dealing with. Medication seems to be the route our docs go (he had the abcess drained after 3 months of trying antibiotics). My son has been put onto Azathioprine to see if it helps heal the fistula but I know the other one which is supposed to be good for them is Remicade. However I don't know what they do for children of 4 years - it might be different. Good luck - hope he gets treatment soon so he can get better.
 
I can't help with fistulas as we haven't experienced them, dd was 4 at diagnosis. While it obviously gives the disease a LONG time to progress, I haven't heard of any studies that show that it is worse in children diagnosed young.
 
Hi Gainzie and :welcome:

I'm so sorry to hear about your little boy...:hug:

I would definitely ask for his CRP to be repeated and also ask that they test for faecal calprotectin. CRP is a non specific indicator of inflammation whereas the calprotectin is specific to the bowel.

While I don't disagree that an MRI may give them the information they require it is not superior to scoping because they can't obtain physical evidence. Scoping is still the gold standard when it comes to a diagnosis because of confirmation via biopsies.

My two don't have perianal disease but it may be worthwhile also asking your question in the fistula and abscess forum.. If he is diagnosed with Crohn's be prepared for them perhaps suggesting some heavy medication, particularly in view of the fact that perianal disease responds very well to the biologics (Remicade and Humira) but I don't know the criteria in the UK for it being approved and at what age.
Enteral Nutrition is normally a first line of attack in the UK, studies are a little conflicting as some suggest that it is most effective in small bowel disease but others state it is just as effective for Crohn's in both the small and large bowel. Compliance can be difficult at that age though and would probably have to be done via a naso gastric tube due to the volume that would need to be consumed.

I don't know that age is necessarily an indicator of prognosis but rather response to treatment and therefore ability to maintain long periods of remission.

Good luck with the appointment and let us know how you get on.

Dusty. xxx
 
Started to have a search through this forum and it is soooo good :applause:
Really appreciate everyon'e supportive comments and advice.:rosette2:
Plus....these wee faces are just the business!
 
Hello Gainze,

Welcome to the forum. I know it is so hard to be faced with someone telling you your child may have a long term condition.

My son is now 6, and he was diagnosed when he was 5. He started with perianal fissures, then an abscess then they found a fistula, which was surgucally opened up (it was near the skin surface, they can't do that if it is deeper I think). So it finally healed! He just now has a few little fissures.

As for diagnostic tools, he has had 'examination under aneasthetic' of the anus to have a good look, he has had an MRI with contrast to look for fistulas, and he has had gastroscopy/colonoscopy and blood tests. He doesn't have intestinal inflammation at the moment, but he still has crohn's.

I can undestand your concern about being diagnosed so young, and what this means for his life ahead. That is something I struggle with too. I keep thinking of all the years ahead. But I also try to remind myself, that lots of people are living well with crohns, and get on with following their dreams in life.

I hope you can get some answers and a clear path forward soon. So you and your little one with then feel better.

Take good care of yourself.
Lily Rose
 
Gastroenterologist called today...we go in on the 21st June to prep him for a colonoscopy and likely I/D of abscess on the 22nd!!!
G.I guy and surgeon will be there and may carry out a further procedure depending on what they find. They think there may be a deeper 2nd abscess which may need intervention. :yrolleyes:
Asked what his recent CRP was - less than 3 and his faecal calprotectin was 59 so I am hoping this is good????
Waiting game now until the 21st so hoping the current abscess behaves until then.
 
So sorry your little one has been poorly - At least he should hopefully get the answers he needs soon, and therefore the correct treatment to help him.

My little guy will be 2 next month, we are waiting for the biopsy results from his colonoscopy and gastroscopy - he is doing really well since the scopes so fingers crossed all will be ok - and fingers crossed for your little guy too - keep us updated xxxx
 
Thanks for the update Gainzie. :)

Good luck with the appointment and I hope it provides your little guy with solid answers and relief!

Reference ranges can vary from country to country and lab to lab. Can you get a copy of his results?
in the lab we use a CRP of 3 is normal and a faecal calprotectin of 59 would be considered
indicative of moderate inflammation (<50ug being normal and 50-100ug being moderate).

Dusty. xxx
 
You know I am getting a bit confused with the calprotectin. Before Andrew was diagnosed his was 1600 or just over so obviously very high. However your son's is only 59 and has a low CRP. I had my daughter checked just in case (she has issues we have never resolved) and hers was 169, at which point the paediatrician said - oh she definately doesn't have Crohns then. Seems a bit odd.
Anyway - off on a ramble there - I would definately ask them to do an MRI whether they plan to do surgery or treat with meds. It is always good to have a picture of what is happening - the size/extent of the fistula and abcess, where it leads which part of the bowel it extends to,etc. I have to say I was very happy with the staff at Yorkhill, they are so good with the kids, especially the younger ones. Before surgery is possible for them to put them to sleep with the mask over his mouth rather than the needle in the hand. That way he can be asleep before they do it. The fish and chips at the resturant on level 1 are amazing (you can even ask for it to be made if it's not on offer) :D. Andrew loves it so I always nip down and ask for a take away and bring it back to the ward for him.
 
Back
Top