New to all of this and feeling a little overwhelmed!!

[Mummygee]

Hi everyone. I'm new here and to ulcerative colitis and a bit lost!
My son was diagnosed with UC three months ago at 18 months after 3/4 months of bloody diarrhoea, all sorts of other ideas before the colonoscopy detected it. He started a course of cipro, metronidazole and prednisilone tapered over 6 weeks. He responded really well. 1 BM a day no blood. Since new year we are on our second course of metronidazole which controls the blood but it started 6 days after the first course again hence the second course started last night. He has no other symptoms other than a 'bit' of blood and the consultants seem at a little bit of a loss as they felt sure it wasn't IBD and they've not dealt with anyone as young. We are keen to hold off more steroids and azathioprine but not sure we're going to be able. He is also on sulphasalazine twice a day. Has anyone had similar experiences with finding the right meds, doctors and their sanity again?
Sorry for the ramble just been trolling the Internet for ideas and other people's experiences and found here!

 

[Devynnsmom]

Hello and welcome to the forum. You will find lots of support and information here. I have an 11 year old daughter who was diagnosed at 8 years old. But her symptoms started when she was about 18 mos old. She is also on sulfasalazine 2x daily and its working.
(((((hugs)))) I hope your little guy feels better real soon.

 

[Farmwife]

Hi and welcome.
My Grace turned 4 yesterday. Her dx is IBD but have yet for the GI to say for sure which one it is (it's crohn's but I'll humor the GI for awhile). I'm so sorry to hear about your son.:frown: Grace has been ill most of her little life also. These kids are amazing on how the handle it all compared to us. I hope they figure out what works for him soon.:thumleft:

HUGS

 

[my little penguin]

Hugs
I will page queen gothel
And izzismom
Both have little ones

My DS had issues since he was two weeks old.
He was dx officially at age 7 with Ibd.
It will be ok
Drugs are scary but if they fix the gut and let your kid be a kid well them that's great

 

[Brian'sMom]

Mummygee,
So sorry your son is going thru this so young. My son had signs around age 6 but many moms here have younger children and I'm sure will post soon. All the best to you, this is a good place to get info and support.

 

[crohnsinct]

Sorry to hear about your little pumpkin. It breaks my heart when I read about the wee little ones.

Once you have been around here long enough and read people's signatures you will see you are not alone in it taking a while to find what works. The long lists of meds tried is testament to that fact. And to complicate matters, once you find something that works it sometimes only works for a period and then stops and you are on to the next.

Many here have also changed docs a few times.

I guess what I am trying to say is the name of the game is bob and weave... go with the flow....and if you find my sanity while looking for yours please send it home

My daughter was dx'd at 12 and has Crohns. She was a bleeder and I know at one point our doc said it wasn't her Crohns per se but "terminal" bleeding and that some suppository drug might help it but we never got that far because it ended up being her Crohns and we got it under control by adding a course of Enteral Nutrition. I think queengothel's daughter (another young one with UC) had that terminal bleeding and used the med I am thinking of.

Good Luck finding what works!

 

[Dexky]

Welcome Mummygee, I couldn't imagine how heartbreaking it would be to have such a young one going through this. Like MLP said, and I hope it doesn't get to that point with your baby, but in some cases it gets so you'd be willing to do anything just to get your sweet child back! Good luck!

 

[Jmrogers4]

Welcome to the forum, so sorry you needed to find us. Most of us have tried different meds, doctors until we find something that works for a while and there is nothing like seeing your child happy and healthy and whatever meds you need to do to make that happen are worth it.

 

[QueenGothel]

Hugs to you. Sorry your little one has been diagnosed with UC. Everyone gave you some good advice. Just go one day at a time. I kind of have my hands full right now my daugther is currently hospitalized and I am overwhelmed. I wanted to let you know you are not alone. My daugther was diagnosed at age 3 I know how it can be overwhelming. Just remember that children are harder to control and there really isn't anyway to get away from the medication. Things can go south quickly. Get the best care you can find and get a plan together and hope and pray it works. Hugs

 

[NMMom]

Hi there. So sorry your little one, and your family, have to begin this awful journey so young. My daughter was diagnosed at 5 but started with her symptoms around 4. Many in the health care field are wary to dx a young child with IBD because they think it just can't happen this young but all of our children are proof.

There are hard days and not so hard days. What is a struggle for me is giving the meds a chance to work. With the exception of maybe prednisone or the biologics you won't see an immediate improvement. In the case of AZA it can take months. When it's your child who is hurting having to wait a day seems too long, much less a few months!

If I can offer any 'words of wisdom' it would be to trust your instincts as a parent. There are so many moms on here, Farmwife and Queen G to name just two, who's determination and push for what they knew they were dealing with is what saved and is saving their kids. Doctors and nurses know a lot but a mama knows even more when it comes to her baby.

 

[Sascot]

Hi and welcome. It is very overwhelming when you get the diagnosis. This forum is a great help! My son also took a year and a half to diagnose, so I understand how frustrating it must have been. My son has Crohns, and have yet to really understand the treatments for UC, so I'm not much help there.
Did your son have a faecal calprotectin done? It's at least a painless test, collect the poo and send away :thumright: and the results take about 5 weeks. It will show if there is still any inflammation. Hope things settle down!

 

[Lewiss mum]

hi just wanted to say ur not alone ive had great support of everyone on the forum when im low or worried aboit lewis i find it therapetic to write a thread about it evry time i have someones experianced the same or has some gteat advice i think i would truley of gone crazy if it wasnt for this forum . my boy had problems from age two but really he had probs from birth as we couldnt ween him till 18 months and he was always colicky .. he was dx age 5 weve had a roller coater since 3 ops hies on infliximab amd azathioprine aswell as antispazmodics and gastro tabs . lewis is the opposite he suffers with constipation. i totally agree with Nmmom go with your instincts question what the docters docters are doing and seek the alternatives . hope things settle down for your little one .xx

 

[Dutch941]

There's no sense in repeating wha everyone else is saying here except to say welcome, and it's so unfortunate that you needed to find this site. But the good news is that this site is extremely helpful in that all of the info. And guidance you need can be found here.....so many people here with so much experience. As far as sanity goes, coming here can often help restore your to a degree...it is very helpful to have "partners" in this and comforting to know others are experiencing the same as you guys. My son was diagnosed with UC at 12.....I think you would be best to Ask specific questions of the parents with young children like yours....they will have a vast amount of knowledge....I'm glad to help whenever you need it but I'm assuming there may be some subtle or distinct differences based on age......keep your head up! It will Get better and you will adjust.

 

[jmckinley]

My son is older and has Crohn's so I don't have alot of advice. Bot I am so sorry your son was dx'd with UC and at such a young age. It is very frustrating and nerve-wracking to watch our kids go through this. It's a very trying time for you right now.

You'll find lots of support and new ideas here, so ask away. It does get easier as you learn more about the disease and the medications and a diet that can help control it.

I hope things start to calm down and you find your new normal soon.

 

[Mummygee]

Thank you to all that have replied. It's humbling to know they are more of us out there, but just wish none of us were x

 

[DustyKat]

I am so very sorry to hear about your little one Mummygee. :hug: How heartbreaking for you to see him going though all this.

My two have Crohn's but were much older when diagnosed. There are many parents here with children under 5 that have a diagnosis of IBD so just know that you are not alone in your pain and fear hun. :ghug:

In my thoughts and prayers. :heart:
Dusty. xxx