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[jmurra29]

Hi, I'm not sure if anyone can offer some advice or help.
My 2 year old son had surgery a few days ago to remove a fistula. The surgeon said it could be a one off or maybe Crohn's Disease. The surgeon was not worried and says we'll wait to see. I'm not thrilled with that response, because my son is in a lot of pain, and it came out of no where, I kind of want to know what we could be in for? Is it normal to just wait and see with Crohn's in children or do they usually do more tests? If it is normal (or what seems to happen) I guess I'm resigned to wait, however it just doesn't feel right.

 

[troydanielbecker]

When my wife first got pregnant, it seemed like the first few weeks or so we were buzzing like bees trying to figure out every little detail about pregnancy, childbirth, how to raise our children, and how to send them off to college. Then time slowed down and by and by we understood how nine months is a nice period of time to adjust and transition into parenthood--itself which is a lifetime of adjustments and transitions.

A similar thing happened when we first started down the path of IBD with our young son. We were going to the ER with our sense of urgency, and then hearing about waiting for weeks for a colonoscopy, and so on. After more time passed, we saw that the time frame for action/prognosis is more a long term thing. In some cases, there are the surgeries that are very urgent. The way it appears to me, there is a lot of waiting and seeing.

I can understand your urgency and the tumult of ???. Stick in there and do what you can with your son! While you wait, maybe you can read up and see what you can find out. Peace.

 

[Keona]

Troy..your analogy is a great way to describe it.
My best goes to your son jmurra and welcome to the forum. There are a lot of really knowledgeable caring people here so I hope you take a look around. There is also a thread specifically for parents with children with Crohns so you might find that interesting.
http://www.crohnsforum.com/forumdisplay.php?f=49

take care and glad you found the forum

 

[AZMOM]

Welcome, Jmurra. Sorry to hear what an adventure you have had already! Although I certainly hope it is an isolated thing, I would consider seeing a pediatric gastroenterologist and tell them what you are concerned about. At least maybe you'd have a relationship there (if they don't want to go ahead and do some testing). Just a thought......

In the meantime, let us know what we can do to support you!

:goodluck:

 

[Dexky]

Welcome JM!! I saw your other post about his 4 previous surgeries!! Were they all because of possible Crohns symptoms?? Poor guy! It would be awfully difficult to be patient in light of so many problems. I hope you get answers soon!!

 

[jmurra29]

Troy, thank you so much for that analogy. We did the same thing when we found out we were having a baby, rushed around crazy for a couple of weeks then realised we had plenty of time! I guess I am doing the same thing now because I just want answers about what to do, I’m not good without answers and I like to be proactive. Though I know it is not always possible. I guess I just wanted to talk to some parents that have already been where we are now, so I can see that it is possible to get through it all.
Dexky/Mark, he has had 3 surgeries on his eyes, 1 on his ears, throat and tonsils and this last one on his bottom/bowel. As I mention he has whooping cough at 6 weeks, nearly lost him. We are also facing an aspergers diagnosis with him, so it feels like the world is so crazy at the moment, and I am just looking for so way to make it feel normal again. We live in a rural town in Australia with not many doctors and I am just trying to work out whether I trust the one here or go onto one in a bigger city. Waiting is hard and I don’t want to, but as I said if that is what is the norm, I will. Thanks for your kind advice, Jess.

 

[jmurra29]

I don't mean for the above to sound like i'm complaining, because things could be so much worse, I just want to be positive, proactive and practical about what we do for him, and I found with the aspergers it has helped to talk to other people so I thought I would do the same with this.

 

[Dexky]

JM does he have any other crohn's symptoms? ie. weight loss, loss of appetite, diarrhea, blood in stool, stomach pains etc.

Is there a pediatric GI near you? Having already had fistula surgery, I would want him to be examined by a specialist.

What's his name?

 

[DustyKat]

Hi Jess and :welcome:

Sorry to hear your little guy is going through so much, . Did they do any pathology when they did his fistula surgery?

What state are you in? I doubt they would have a paediatric GI close to where you live so it would be best to be referred to a specialist at a city children's hospital.

Take care, :hug:
Dusty

 

[ChampsMom]

Hey JMurra,

So sorry to hear that your wee fella is having such a fight... When my son my dx last year with Crohn's I asked the GI doctor at Children's Hospital if it was unusual to see someone so young? Her response, "Not around here..." I'm certain it would be a trial to get to a pediatric GI, but I'd strongly recommend it... Big people docs don't always know what little people need.

Blessings your way...

 

[jmurra29]

Dexky, His name is Ben, we call him Benni )
He is a very big boy for his age, always has been and he is a big eater, he eats more than me most days! He does get diarrhea but nothing that I have ever worried about, until now; because I was so busy looking at his respiratory symptoms. He will be fine for a few weeks, and then have a week of up to 20 nappy changes a day, then go back to normal, but I wonder if this is because of all the antibiotics he has had? He often would hold the middle of his body tight and cry, and I have always thought that was his chest hurting, now I don’t know, however I don’t want to read anything into any of this just to try to get answers.
We live in NSW; there are very few specialists in our town, a couple of general paediatricians, and a general paediatric surgeon, who did his surgery. We have had to travel 500kms to both children’s hospitals in the closet big city before, and it took a lot of pushing to get referred there. I guess I’m not sure if I need to stress myself for that or just wait and see. They did take a biopsy, but they said they would call the next day if they found anything, I haven’t heard from them, and I did call them yesterday (annoying parent, I know!) and they haven’t got back to me. I would like someone who knows what they are doing look at him though, the first doctor we saw in ER said it was a haemorrhoid, the second said it was an abscess and after surgery they said it was actually a fistula.
Thank you all for your postive comments, and questions they are helping me work through things in my head. My husband just wants to wait and see, be we have done that before and had bad happen, so I don’t want to sit around waiting, I want to be informed )

 

[DustyKat]

As far as I know The Sydney Childrens Hospital at Prince Of Wales has a very good Crohns and Colitis unit........

http://www.sch.edu.au/departments/crohns_colitis/

I would push for more specialist treatment as well, it sure can't hurt and in my opinion any doc/specialist worth a pinch wouldn't hesitate to refer you onto a specialist in the necessary field.

I went to an adult GI with my daughter but she was 14 at the time and I didn't want her to have to change again in a couple of years. If I had chosen otherwise she would have been referred to someone at Sydney Childrens hospital, she was diagnosed at the time though. General paediatricians just don't see enough of IBD, you need someone who specialises in it.

I know it's hard for all involved but again I have to agree with you. Go with your gut feeling Mum and if you think he needs to followed up then yell, scream, punch and kick until you get what is needed. If it turns out to be nothing serious then you're no worse off but if it is IBD then the sooner seen the better!

Just my two cents worth! :lol:
Dusty

 

[Dexky]

Hey Jess, being an annoying, informed parent is much better than constant worry over possibilities. I agree with Dusty, Benni needs to be seen by a specialist! I know the distance is a large factor in your decision making process, but even if it only settles your concerns and nothing is found, it will be worth it.