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[robertsmorcom]

well I've not posted in here for a while but am back to the desparation stage , my little man's CF test came back normal, he had colonoscopy & laparoscopy in March which showed bleeding but couldnt see where from but specialist pretty sure not Crohns....now we are back to severe tummy pains, strange cough, senstive eyes & D with blood very poorly at the mo.

My question has anyone experienced the LO having these tests in the past but being diagnosed with Crohns eventually? really dont know what to do...a visit to the hospital will be happening though.

 

[DustyKat]

I'm so sorry to hear this hun.

My daughter went undiagnosed for 18 months and CD wasn't even on the radar. As a result she never did have a colonoscopy/endoscopy but all her blood results, X rays, ultrasounds and scans returned normal results right up until the night before surgery and the only thing that was off then was a raised white cell count.

Your son's colonoscopy wasn't normal in March and he is bleeding now so what are they going to do?

Keep pushing until you get solid answers. He has symptoms and he is bleeding so something is definitely wrong and they need to get to the bottom of it. I know how hard and frustrating it is and many was the time that I would ring the doctor and say..."So what to we do now, she still isn't right and I am not going to sit by and watch her suffer."

I did reach the point with Sarah where I was sure she had CD so when she was admitted to hospital I told them we weren't leaving until they could prove to me it wasn't Crohns. They wanted to repeat the same sort of tests she had already had done and I basically refused. I had spoken with the GP the day before and he said that they may just have to open her up and see what they find that way and it didn't seem an outrageous thing to say. Well they ended up doing that anyway because she was septic.

Just a thought, maybe if you can get to an immunologist their opinion may be helpful??? Just my two cents worth but I am of the opinion that they often look at the whole picture rather than just the lungs, or the gut, or the eyes.

I think I may have rambled on a bit there! :eek2: I hope you get answers and lasting relief for your baby very soon...:hug:

Dusty. :heart:

 

[dannysmom]

Hi - I am sorry your young son is feeling so bad and you still do not have answers. My son is also undiagnosed. It does seem quite common for many Crohn's patients to be undiagnosed for years.

 

[Dexky]

Dear Specialist, thank you for telling me what you're "pretty sure" it isn't! Meanwhile, my son is still suffering! Do you have children?? If you do, I'm sure you'll understand why I am going to hound you relentlessly until you figure out what you're "pretty sure" it is so we can make my baby feel better!! Sincerely, we the parents!

 

[robertsmorcom]

Hahaha Dexky that made me smile....after another long day at the hospital still with no progress!
Dustykat...we also saw an immunologist in May and they was thinking Bechets Syndrome but now have decided not! my thoughts are the same if he's still bleeding then there is something going on, when you say they opened your LO and diagnosed that way was that a Laporotomy where they actually looked inside the bowel? if so they was planning this on my LO in April after the Colonoscopy but decided against it as carries a high risk of needing a bag...to be honest I wished they had done it then we may have some answers.
My LO scans and bloods have also come back normal apart from raised CRP? think thats right! which I believe is high inflammation...I just don't know who or how to push anymore as we see different specialists every time we are at hospital its so frustrating...think I will contact his Gastro specialists (they are based 4hours away!) and put it back into their hands.
Thankyou for your reply and you didnt rant at all was a great read, thanks to everyone

 

[DustyKat]

When the GP and I spoke he had no more ideas and that's when he put the idea of surgery out there.

When the surgeon then suggested that they go in because she was septic they still thought it was for a laparotomy and appendectomy and for a general look, they really didn't think they were going to find anything. Boy were they wrong! :lol:

Surgery is an extreme way of reaching a diagnosis but sometimes, just sometimes I guess it is what is needed. As I am typing this it reminded me of the fact that my husbands cousin was diagnosed this way too. She was undiagnosed for 4 years and her surgeon took her for an appendectomy but when he opened her up he could see she had CD and closed her back up again. I imagine what he saw was inflammation and thickening of the bowel, she has not required a resection up to this point in time.

A laparotomy doesn't actually look inside your bowel but it does look into your abdominal cavity, so the surgeon is able to visualise all your abdominal organs including the outer wall of your bowel. I don't see how a simple laparotomy increases your chances of needing a bag though.
You are spot on...CRP is an inflammatory marker so a raised CRP is indicative of inflammation somewhere in the body.

I agree, go back to seeing the gastroenterologists and push them for answers, I think that is a very good starting point.

Dusty. xxx

 

[robertsmorcom]

So my little man was kept in for 48hr observation after he's specialist refused to admit him and I drove straight to the hospital and walked right on in!
He had previous to this admittance d with blood and mouth sores, the night he was admitted he had vomitting, his temperature would randomly shoot upto 39 and then fall to 35 degrees, he couldnt eat due to the mouth sores, the blood tests have now come back with high CRP & high ALT (liver function) levels...they finally want to bring him back in for further tests!

 

[Dexky]

Good for you!! Maybe you'll finally have a real action plan soon!! Good luck!

 

[DustyKat]

Thanks for the update Mum!

Good on you for going on the offensive! :thumleft:

Good luck hun and I hope you get solid answers for your boy very soon...:goodluck:

Dusty. xxx

 

[LilyRose]

Good on you for going right in and taking him to hospital. Well done. I just hope they can sort out what is happening and get him on the right treatment so he can start to feel better. I am glad you posted your message, and I am sure you will get lot of support here. I know this is such a difficult time.
Take care of yourself,
LilyRose