Hello and help

[stayincalm]

Hi -My 12 year old daughter was diagnosed with crohns during the summer holidays. Initially it felt really positive to get a diagnosis and she coped really well on modulen (no fussing, drinking 2 litres a day etc). However last week was far tougher -she went back to school and found it difficult explaining about modulen to all her friends and I think the initially relief of diagnosis has warn off for me and its coming to terms with the reality of it all.
I had expected modulen to be the only treatment however she was put on 25 mg of azathriopine and now the doc wants to double to 50mg. He said its best to treat the onset of the disease aggressively whilst I was hoping to avoid lots of drugs and see if the modulen was enough. Does anyone have any thoughts on this? I just feel really unsettled about the medication. She is also on an iron supplement although one of the dieticians mentioned that its not advisable for IBD (daily tablet form). She does still have tummy pain most days and i'm trying to work out if that is the inflammation or side effects to medication. Thanks for reading, it took me a while to find this forum and I'm so glad I have!!

 

[Farmwife]

Hi and welcome.
I'm so sorry you had to find your way here but this is great place to get advice and comfort from parents such as yourself that find them selves having to make hard decisions. I'm sorry my advice is very limited on offering advice about meds and such.
My little farm princess is still in the early and feels like most days very drawn out process of getting diagnosed. Others will be along to offer their advice and encouraging word soon.
I hope and pray that your girl gets things straiten out soon.

Welcome aboard,o
Farmwife

 

[my little penguin]

We did 9 weeks of EN plus 50 mg of 6-mp about one month after dx.
We tried pentasa first.
I would agree with aggressive first . They can fix inflammation with drugs but if you wait then the inflammation will turn to scar tissue which can only be removed by surgery.
One other thing to note the earlier the onset typically the more aggressive the disease not sure if it's just a matter of disease tIme or what.
Fwiw 6-mp helped DS some but not enough . We are now on remicade.
Good luck.

 

[crohnsinct]

Hi and welcome although I am sorry you have to be here. I have a 12 year old daughter also and she did 6 weeks of exclusive EN but to support Rewmicade as Remicade was working just not "all the way". I totally get how the relief has worn off and I dare say that by week 5 my daughter was growing very wary of the EN and the closer we got to food introduction the harder it was to keep her spirits up. She was in school the whole time with all the year end parties etc. I don't know how your system is set up but my daughter did not go to the lunch room but rather got to drink her shakes in the nurses office or the guidance office. It became like a little therapy session for her to talk with her guidance counselor every two hours while drinking her shakes. These kids amaze me with all they endure and go through with such strength and positive attitudes.

Our doc also agrees in hitting the disease hard and fast. He says that with kids especially the quicker you can get inflammation under control the more likely you are to avoid surgeries down the road...also many of these kids have suffered growth and puberty delay and allowing inflammation to linger will only further delay growth and there is a limited window so he likes to hit the inflammation quickly and get the kids back on track.

Good luck and keep us posted!

 

[Thermo]

So many people get such mixed advice from doctors, I recommend searching through the forums, there is so much advice in here. The doctor is right about treating it aggressively when you find it, all diseases are treated like this now. You attack them quick to get on a manageable maintenance medicine. She will be on medication for the rest of her life but her generation will most likely see a cure at some point. Still with that being said you have to treat it like it is now an incurable disease that can cause some major damage if left untreated. The damage is unnoticeable for years and may not produce symptoms but its always there. I have learned a long time ago to listen to the doctors with this disease, but you have to do your part with diet, probiotic, and exercise. Also the majority of Crohns patients are Anemic of Chronic disease and take 2 tablets of Iron everyday I am not sure what that Dietitian was referring to? Maybe they were referring to the upset stomach.

 

[Sascot]

Hi, and welcome. My son was diagnosed last August and went onto the Modulen for 8 weeks (he had to have the NG tube as he couldn't stand the taste). We are still in the process of deciding about meds and I too am very uncomfortable with the 6mp that the doc wants to try. I wish I had some great advice for you regarding meds, but it is such an individual decision and all the kids seem so different in what treatment they need. So long as they have been doing the weekly then two weekly blood tests then at least they will be monitoring any side effects. Best of luck!

 

[Tesscorm]

Welcome to the forum but, I am sorry that you've needed to find your way here!

My son's treatment has also been EN. He did the 'exclusive' period (through NG tube overnight) for six weeks (May-July 2011), since then EN has been his maintenance treatment (only med has been nexium). For my son, maintenance EN has meant 1/2 the dose, 5 nights per week plus a regular diet. I don't think I've read of any other kids here who have used only EN as a maintenance treatment without other meds.

Has it worked??? He has been in clinical remission - almost no symptoms (once in a while, he feels 'off' - a bit tired, looser BMs or some constipation, etc. which lasts just a few days - but even these 'off' days have actually become less frequent in the last few months), however, since the Fall 2011 his CRP and sed rate have fluctuated and have slowly been increasing, also MREs and ultrasounds have shown some continued inflammation.

As he feels and looks fine, I believe his ped GI has been content to leave things 'as is' partly due to my son's imminent transfer from a ped GI to an adult GI. His ped GI had mentioned that we might have to look to methotrexate as it seems EN is 'managing' the inflammation but not completely eliminating it. His first adult GI apptmt is in October.

I'm very happy he's not taking any other meds, however, am not happy about the continuing inflammation and any possible damage that is being caused :ymad: So, I am certainly not encouraging you to do EN only or discouraging any meds, etc. just sharing a 'different' treatment that my son has followed.

As far as the iron supplement, Kimmidwife has mentioned a liquid iron supplement that I believe is more easily tolerated and more easily absorbed - I've forgotton the name but, hopefully, she will pop in and can tell us the name (Kim, I'd like that name again too! )

Good luck!!!

 

[Stephyjane]

Hi, I'm sorry to hear about your daughters diagnosis.
My little girl was also diagnosed this year in June, just before her 10th birthday. She too was initially put on a liquid diet and 50mg of Azathioprine. Unfortunately she just couldn't do the liquid diet. She has been on Steroids since then and also had her Azathioprine increased to 75mg and other medications added.
Believe me I have been devastated each time medication has been added or increased and cried a lot, but I definitely agree with hitting this disease hard and getting her into remission.
I'm sure your daughter has amazed you with how she has coped this summer and as a parent I know how devastating it is to watch your child go through this.
I have found this forum to be an absolute life saver and the advice and knowledge you will get from the members will help you so much.
Take care :kiss:

 

[stayincalm]

Thanks all so much! I do see the logic of trying to reduce the inflammation quickly and I def want to avoid scarring. Another thing I am only just beginning to read about is strictures and surgery. My daughter had an MRI scan on Monday and I'll have to wait for the results but I guess that would show any of those problems? One question I didn't ask is how severe the inflammation was on the colonoscopy but I know there were ulcers too. My daughter has certainly amazed me stephyjane with how well she has coped. She would love to be in email contact with other girls her age who are going through this so if anyone is interested let me know and i'll pm email address!

 

[jmckinley]

So sorry you needed to find us, but welcome...you've found a supportive and informative group.
I have been dealing with Crohn's in my son for 3 years now. He was dx at 12. I always hate the meds, but honestly, when they work they are a blessing. The disease itself can cause damage, so it's better to knock it out quick. I hope you find a combination of meds and diet that is successful and that you can be happy with. It's hard to come to terms with all of this for sure. The kids do a better job than we do at coping. Ryan takes it mostly in stride, it's just a part of who he is. I've not heard him question it yet. I, on the other hand........

I know iron causes tummy pain. But if I am not mistaken, isn't iron constipating too? Maybe they are concerned about causing that problem. That's not a pretty one with Crohn's either, and it is possible. We don't always have the D problem.

 

[emmaaaargh]

I'm a little bit late here but I wanted to offer my support too! I'm 14 and I've been getting progressively worse so I'm in sort of the same situation and my doctor put me on Azathioprine too. I agree that most doctors are into treating it aggressively these days and I suppose the good thing is that treating it that way means you get your daughter back faster .

Yep, the MRI should show stricturing/narrowing as far as I know, and I can also confirm iron tablets causing stomachache and constipation. I'm always on and off iron tablets because they're just such a pain after I take them!

Anyway wishing you both all the best!

 

[catfan2]

Hi

I'm new to this forum too as my 14 year old daughter was diagnosed with Crohn's a few months ago. She has been on Modulen too, the quantity is decreasing now as she is slowly reintroducing food. She had no pains while on the full amount of Modulen, but now she is eating again she is getting some pains again. I know it's not a long term solution, but I liked the 'safe' feeling the Modulen gave her, if you know what I mean. Now it's just trial and error to try and find out what she can and can't eat. She is on 60mg of mercaptopurine and has just been given 1.2 of Mesalazine as well. She has an MRI scan in two weeks, depending on the results of that they are going to think about infliximab as well. It shows how new I am to all this - I just assumed infliximab was another tablet!:redface:
My daughter said she would be interested in emailing yours to swap stories, so if your daughter would like that please feel free to PM me.

 

[DustyKat]

Hi stayincalm and :welcome:

I am so very sorry to hear about your daughter...:hug:

You have been given wonderful advice so I don't really have much to add! An MRI should be able to pick up any abnormalities in the thickness of the bowel. The idea of hitting the disease hard and fast surely is to halt the inflammation in its tracks and therefore avoid complications such a scarring, fistula and abscess. It is difficult to tell initially, when first diagnosed, if thickening, if present, of the bowel wall is due the swelling of inflammation only or if it also has the permanency of scarring. If the nature of your daughter's disease is stricturing then it may take many years before surgery is required, if at all.

For those of you in the UK (tagging stephyjane, catfan2, emmaaaargh, Sascot), and that require iron supplements, have you heard of Globifer Forte? Due to the inclusion of heme iron it is generally considered to have higher absorbency and far less gastrointestinal side effects.

Dusty. xxx