New :-(

[Rypen]

Hi my name is Penny. I've been lingering on this forum for a few weeks and thought I'd finally bite the bullet and join up. You all seem so nice.

My 4 year old boy Billy was diagnosed this February after 3 weeks of high fevers mouth ulcers and abdominal pain. Prior to that he was a very healthy and very big boy always being up in the 97 percentile in height and weight. Those 3 weeks of him being in hospital with no diagnosis would have been the hardest thing my husband and I have had to face in our lives and sometimes I still think it was a bad dream. He was fading away before our eyes. Anyway after a colonoscopy and endoscopy Billy was finally diagnosed with Crohns Disease in the terminal iileium. we were glad to finally have a diagnosis but so sad for him having to deal with this at such a young age. Once we had dealth with the disgnosis then we moved on to treatment and thats when i fell apart. 6 weeks of modulen or steroids as wrll as the dreaded aza. Eventually we decided for modulen and aza. Billy has managed the whole 6 weeks drinking the modulen and is now slowly moving back into foods. He is doing amazing.....you would even know he is sick! And so far no side effects from the aza. His crp is down from 180 to 6 and his esr from 45 to 35. Hope that comes down soon too. He still has the odd belly ache once a day got a minute or so and 3 days ago had a tiny ulcer in the crack of his lip but apart from that he is more active than ever. I just find myself worrying every day " is this the day he gets sick again" but so far so good and I'm really trying to stop worrying but insomnia kicks in at night and I can't sleep so that's when I over think ( also doesn't help with an 8 month old either). Anyway just thought I'd introduce myself and my boy. It unfortunate that I find you all here but reading all your posts have got me through a few very rough nights and I'd love to be a part of it all. My husband and I are still very clueless as to what the future holds but with this forum available I'm feeling a bot more confident. You are all such amazing people with very brave and beautiful children. I hope nod day soon we have or get closer to some kind of cure. Love to you all. Pen x

 

[Sascot]

Hi, glad your little boy is feeling better!! He was a brave boy managing to drink the Modulen. My son couldn't stand it - ended up with the tube.
I know how you feel when you say you worry today might be the day he is sick again. I feel like I'm constantly watching and am paranoid every time he says he is tired or not feeling great. But so far just normal colds/sore throats thankfully. Guess we just have to try not worry - ha ha.

 

[Jennifer]

I'm glad that your son is doing much better and hope for nothing but the best for him, you and your family. Welcome to the forum!

Feel free to check out the Success Stories section here as it gives a lot of information and hope: http://www.crohnsforum.com/forumdisplay.php?f=72

 

[DustyKat]

Hi Pen and :welcome:

I'm so very sorry to hear about your little guy, bless him...:hug:

It's good to hear you were offered EN and that he did so well on it! YAY! Aza will take at least 3 months to become fully therapeutic and for some people it can up to 6 months so you may see the odd symptom, as you are, until that time that lapsed. I hope it all works well for your boy and he knows remission for a very, very long time.

No doubt you have seen talk about LDN (Low Dose Naltrexone) here lately. It may be something you would like to read up on and keep at the back of your mind for future reference. I know there is a compounding pharmacy in Adelaide. Whilst ever things are working though I would stay with the status quo.

I so hear you about the constant worry full stop and the fear of the future, I think I would safely say we all do Mum. I think I worry more in many ways now that my children are in remission than when they were sick. Perhaps when they are sick you are too busy worrying about the here and now to think of what tomorrow may hold. Once they are well though you see how much they lost and realise how fleeting it can all be. You just can't bear the thought that the good times, well normal times for most people, could be taken away from them again. It does get better hun, as the days go by the worry and fear does fade off a little with each passing day but yes, nights are the worst and if I am honest about it it still is the last thing I think about every single night. I do sleep though! :lol:

If you have any questions please don't hesitate to ask.

Good luck and welcome aboard! It's lovely to have you here.

Dusty. xxx

 

[LilyRose]

Hello Pen,

I jut wanted to say 'welcome' and that I am so, so sorry your little boy has to go through this.

I know it is heartbreaking and bewildering for our little ones to be so unwell, especially when they have previously been very well. It is such a shock, and the worries can be so overwhelming. But i do beleive that it gets easier with time.

But the good things I remind myself of are - that we have access to great healthcare, have the opportunity to educate ourselves, that many children live well with their crohn's and follow their dreams, also that rsearch is always continuing into crohn's.

I think as a parent it is so hard to be faced our child having a chronic disease. But it will get easier to cope.

I also have a little boy with crohn's. he is 6, and was diagnosed when he was 5. He is doing well.

Keep in touch, and let us know how you are doing. It is OK to have days when you feel low and worry. Just jump on here and I know you will get lots of support.
LilyRose

 

[izzi'smom]

I am glad you decided to join in...it must have been terrifying to see him so sick but I am glad that you have a diagnosis and can get to work at keeping him better. Here's hoping that the trend continues...glad to hear that he is doing so well!!

 

[Jenn]

So sorry to hear about your son and for you. Glad you found the board, it's a sanity saver. Hope he continues to do better. Welcome!

 

[imaboveitall]

WELCOME :rosette1:and sorry you're here!

Violet also has TI disease and had a sudden onset out of nowhere.
She also used/uses formula as treatment, almost four years later and still on it for nutrition and anti-inflammatory effect.

It IS the worst time, those early days...I well recall it and don't ever want to relive it.
I'm thrilled to hear your fella is much better; no doubt the formula had a lot to do with that. Violet was symptom free for 3.5 years on just formula. He CAN live a normal life with Crohn's, as for us mothers, well...it is a neurosis creating thing :yrolleyes:

 

[Mom2oneboy]

Welcome!!! So glad Billy is doing better. Bless his heart it sounds you all have been through a lot. I'm new to the board too and have found it to be a great group of caring people with lots and lots of Crohn's knowledge that they are willing to share

 

[ChampsMom]

Hi Pen... So glad you found the group and so sorry to hear about your wee fella... what a trooper Billy is! I can remember finding the group online and sobbing as I read stories (I sat back for a bit as well, but the pull of the group, the love and knowledge shared was overwhelming, I needed to be a part of it when possible...) My youngest had just turned 1 when my son was diagnosed, so I can completely relate to that part...)

I pray the meds keep working and those numbers come down! We head back to the GI this week and though my son has been doing really well, I worry about going to the doctors (EVEN for a simple follow up!)...

Once again - welcome!

 

[Twiggy930]

Hi Penny,

Welcome to the forum. I am very impressed that your son was able to drink the Modulen. I've tasted it recently and I don't know if I could do that! :lol: He must have willpower of steel. My son has recently started enteral nutrition after trying prednisone with limited success. So glad to hear your son is doing well.

 

[Dexky]

Welcome Penny! I don't suppose we'll ever get past the fear but it does help having others to talk to. There's so much knowledge and insight here. Glad you've joined us!

 

[kimmidwife]

Welcome Penny,
I am glad to hear your son is doing better. I am sorry you have to be here wit us but just know you have found a great place to have questions answered and get support for you and your son. I am keeping my fingers crossed that he continues to do well on his current regimen!

 

[Shansmom]

Hey Penny! I wanted to join in with the others in welcoming you. I know exactly what you mean when you say you worry each symptom means he is getting sick again. It is an awful thing and so frustrating for a mom. I found this forum to be so helpful and supportive. Wishing you and your son all the best.

 

[Rypen]

I a sosorry everyone I haven't been back since my original post. Life has been so hectic with a toddler and baby and renovations etc. Just wanted to say a massive thank you for welcoming me and I look forward to many discussions with you all. I've provided a more detailed update under microbytes post but I'm happy to report Billy is doing amazing. We are so grateful and lucky he responded so well to the modulen and the aza is doing it's job. We see the gi next month so will be asking him about Ldn as I don't want Billy on aza for the long term. I'm still struggling with it! My husband and I ate now looking at dietary changes to help along side so if anyone has any tips we'd be very appreciative. I hope everyone is well x

 

[polly13]

So glad he is doing well.

 

[Sascot]

Thanks for the update - glad he is continuing to get better! Hoping the dreaded Aza will help my son soon as he seems to be getting worse instead of better It will be interesting to see what your GI has to say about the LDN. Mine was very dismissive, but same as you - I really don't want to keep the Aza long term.

 

[Tesscorm]

Hi Penny,

So great to hear Billy is doing so well!

As far as diet, it seems that diet is a very individual thing as far as impact on Crohns. All that was restricted from my son's diet were seeds (all types - sunflower, tomato, sesame, seeds in berries - strawberries, etc.), pieces of nuts (smooth peanut butter, nutella are fine, just not 'pieces' of nuts), popcorn and skins of fruits, veggies. The dietitien's explanation re the seeds and nuts are that they are not 'digested' and, if there is any thickening, can contribute to an obstruction. The veggie/fruit skins were an issue of high fibre. I do wonder if either is an issue when there are no GI problems but, so far, have just avoided them.

But, dietitien also said that certain foods can sometimes alleviate/help certain symptoms - ie rice may help diarrhea, prune juice for constipation. She also made a point re specific diets - in that people will try gluten-free diets, etc. and believe that the diet is controlling the crohns - she does not believe crohns, specifically, can be controlled by diet, however, she does believe that a healthy diet will affect your well-being. As such, she said when following a specific diet, such as gluten-free, you will generally be eating a healthier diet as the core of the diet would be 'healthy, fresh' foods with little to no junk food eaten while following the diet.

So far, other than the seeds/skins, my son's diet has not changed much (although he does make an effort to eat less fried, fast food). However, as his treatment, he does continue with 'maintenance' EN.

Good luck! Hope Billy continues to feel well !!

 

[crohnsinct]

Tesscorm: Thanks for that explanation. I get so frustrated when people say, "Oh it's just Crohns..no problem just watch her diet and she should be fine. My aunt, uncle, friend etc controls their Crohns with diet" When I hear that I want to scream. I figured I would get around to talking to the nutritionist and doc about that at some point but thanks to all you guys I ask them half the questions I did before I joined here. Haha now the only questions I have to ask are the ones you guys bring up!!!!