Our daughter has UC

[Hope for Karina]

Hi Everyone. Our daughter, Karina, was diagnosed at 3 years of age with UC. She is now 10. Currently, she is on pentasa and azasan.
She started with her symptoms as an infant at the age of 1 week. It took over 3 years to get her diagnosed. There are times when she's doing quite well and other times where she's in a flare up and doesn't move for days. So far, she's avoided hospital stays and operations. We just take one day at time and go from there.
Since she was sick for so long without being treated, she is still catching up to her peers. She is a very loving little girl who is a fighter.
Sue.

 

[Farmwife]

Hi and welcome,
Thank you for joining.
My little Grace is 3 1/2 years old.
She's been showing symptoms since 6 months old.
We are still going through the hardship of getting a dx.
May I ask what were her symptoms?
I know for me it's good to hear from other parents what lead them to seek help.
That way you know your not alone and crazy like the Doctors tried to make you feel.
Welcome aboard.

Farmwife

 

[Tesscorm]

Welcome to the forum!

Karina - what a pretty name! It must have been such a difficult time for you looking, waiting for a diagnosis! I hope she is doing well now

You'll find lots of wonderful parents here who are always willing to share their experience and offer their support!

How is Karina doing now?

 

[crohnsinct]

3 years without diagnosis?!!! My heart breaks for you parents who have to search and push all while your little ones suffer. Karina is blessed to have a mom who persisted.

Welcome to the group!

 

[Hope for Karina]

Welcome to the forum!

Karina - what a pretty name! It must have been such a difficult time for you looking, waiting for a diagnosis! I hope she is doing well now

You'll find lots of wonderful parents here who are always willing to share their experience and offer their support!

How is Karina doing now?

Karina is going through a little flare right now. Immodium has helped her right now. She started Azasan a year ago and that has kept major flares down.

 

[Hope for Karina]

Hi and welcome,
Thank you for joining.
My little Grace is 3 1/2 years old.
She's been showing symptoms since 6 months old.
We are still going through the hardship of getting a dx.
May I ask what were her symptoms?
I know for me it's good to hear from other parents what lead them to seek help.
That way you know your not alone and crazy like the Doctors tried to make you feel.
Welcome aboard.

Farmwife

Her first symptoms was blood in her stool when she was about a week old. But the doctors just said she was allergic to milk. So I cut milk out of my diet (as I was nursing her). But it continued and she never ever had a solid bm. She had a colonoscopy when she was 6 months old, but the dr. said it was just an allergy to milk & soy still. Every few months we went back to the doctors. At the age of 2 she had her first mmr shot and that made everything worse with tons of blood just a couple of hours after the shot. Finally at nearly age of 3 1/2 they did another colonoscopy and said it was UC. It is frustrating when the doctors won't listen to you. I hope you find an answer soon.

 

[Tesscorm]

Sue,

Be careful with the immodium... I'm not certain of this(!) but I think I've read that it can eventually worsen the symptoms. Hopefully, someone with more experience can provide some info...

Please have a look at the Enteral Nutrition subforum (under treatment) and also a thread entitled Kids on EN (in this subforum) for lots of info. In a nutshell (just posted this on another thread )...

EN (enteral nutrition) is a treatment that is often used to induce remission (although it is not as commonly used in the US as it is elsewhere). It has comparable success rates at inducing remission as steroids but no side effects at all! It is a liquid only diet that provides all necessary nutrition, has anti-inflammatory properties and provides bowel rest. The 'exclusive' period (formula only, no food) usually lasts a number of weeks (6 for my son) and then food is gradually reintroduced. This is often used in combination with meds to initially induce remission and to allow the medication to begin to work. In my son's case, he has continued on 'maintenance' EN (1/2 dose of formula and regular diet) in the hopes of maintaining remission med-free. It has 'controlled' his symptoms, however, we are looking at adding meds as there continues to be inflammation. (EN is not as successful at maintaining remission as are meds.) There is lots of info on EN in the Enteral Nutrition subforum under Treatment; as well there is a thread Kids on EN with lots of info.

EN is sometimes also used simply to provide nutrition - formula is added to regular diet and/or meds to assist in weight gain, etc. Also, EN can be ingested either orally or through naso-gastric tube.

As you say Karina is still catching up to her peers, adding some shakes to her diet may help her absorb nutrients (lots of kids on this forum have done this with lots of success). My son is much older than your daughter but, just to give you an idea of the nutritional benefits, after losing close to 20 lbs prior to diagnosis, my son was at 127 lbs May 2011, he did six weeks of exclusive EN, continued at 1/2 dose and added back food, he is now at 164 lbs. and has tons of energy, feels good, etc.

Just something to consider

 

[Hope for Karina]

Thanks for the info Tess. Yes, we're careful about the immodium. Karina has been on pediasure for a few years now to help with those issues and to gain weight. Usually just one 8 oz a day. However, we're going to increase that to two a day. She is quite a picky eater and has issues with textures & tastes. We hope that she gains more weight. She only weighs about 45 lbs. She's feeling a bit better today and ate some. Her doctor's appointment & routine blood work is in mid August.

 

[DustyKat]

Hi Sue and :welcome:

I'm so sorry to hear about your little girl, bless her...:hug:

My daughter went undiagnosed for 18 months and it surely is the most difficult time to watch your child and not know why. Sarah was a teenager when she endured what she did and my heart goes out to guys experiencing all this in one so young. I bet she is one amazing young lady!

Tess has given wonderful info about EN. It would certainly be worth a try if you went down that path and while it can be very successful for Crohn's studies don't produce the same results for UC. That being said the fact that it has no side effects then there really is nothing to lose as such.

I hope her flare settles and she soon on top of things again.

Good luck and welcome aboard!

Dusty. xxx