My 8 yr old Daughter was diagnosed today with U.C.

[Clint]

My Daughter is 8 yrs old and diagnosed with U.C. this morning after her colonoscopy and Endoscopy. She has had Diarrhea with Blood in it for the past 2 months , along with the severe stomach cramps. She has lost almost 9 pounds since Thanksgiving and we are not seeing many changes in her loss of appetite. We have had Blood work and stool samples done weekly since this started. They prescribed Omeprazole and Pentasa so far and talking about a steroid soon.

What should we expect to happen ? How or what can be done?

Any help is greatly appreciated..

 

[Lisa]

Hi Clint and welcome.....if you take a look around the different forums you can find a LOT of information on different treatment options. It sounds like her doctors are starting off with the 'smaller guns' - hopefully they will work for her. It can take a little bit for the Pentasa to start working - it has been a long time since I have been on it, others here can give input on time frames.....

 

[Clint]

Ok I will keep looking ty

 

[Dexky]

Clint, I would imagine they will want her on a prednisone course to quickly knock the uc into remission. I hope they are able to keep it controlled with Pentasa. As you read about others with uc or crohns, keep in mind that not all cases are severe and many are fairly easily controlled. I know a lady with uc who has only flared once after her initial flare when she was 4 yrs old. She's now early thirties and only takes Asacol which is a different form of Pentasa. Good luck to you and welcome!!

 

[Jessi]

Hi Clint. Welcome to the forums. I'm so glad you came here. You came to the right place. I'm so sorry about your baby girl. :hug:

I agree with pasobuff. Take a look at all the different forums that we have here. You will find answers to a ton of your questions. One forum in particular that may be useful is our diet forum. http://www.crohnsforum.com/forumdisplay.php?f=17

Also, check out our Parents of Kids with IBD forum. http://www.crohnsforum.com/forumdisplay.php?f=49

I really hope your daughter feels well and stops bleeding soon. Steroids would help with that and her appetite. Good luck and come around as often as you need to. :hug:

 

[Clint]

Ty for the answers and where to find them.. They are talking about putting her on Remicade . I dont know if that is a good way to go or not what do you think?
I take it That it is more severe then the Doctors are leading us to believe with wanting to put her on Remicade ? I am just more lost than anything right now and not sure how to deal with it yet....;

 

[Clint]

They are doing a TB test and Hep A shot, they also gave her a flu shot today too. They are doing a steroid that is being called in also. How frequently do flare up's occur or does it just vary person to person ? They also said if she doesnt start eating soon they are going to have to hospitalize her . Is this normal ? They have also said if anyone at school is sick she cant go or be around them.. As far as being around anyone sick Is this going to be like this forever?? If so she will miss a lot of School.. How do I go about finding a local support group not only for parents but for her also? She is having a hard time with this and kids at School picking on her about going to the bathroom so much. And her Mom and I just dont know what to do for her yet. We are trying to find out everything we can it just seems like there is so much to know..

 

[Jessi]

Hi Clint. I know you must have a TON of questions. I'll help with the ones I know.

I am on Remicade. I was brought out of a flare using prednisone and Asacol HD, then started the Remicade and quit everything else. I am now in remission thanks to the Remicade. It seems like a scary drug, but it's more scary to not be on meds. It brings me a great peace of mind.

Flare-ups do vary from person to person. My flares happen once a year, but they are extremely severe when they come and they last for months at a time. Some people flare monthly.

Hospitalizing an IBD patient for malnutrition and/or dehydration is not uncommon. They would give her fluids intravenously and/or liquid nutrition through a tube if needed.

Not going to school when someone there is sick is a precaution for patients on a biologic drug like Remicade, as it lowers a part of her immune system. I have been around several sick people while on this med, and so far, I've been fine. In my opinion, you just need to explain to her that she needs to be smart about getting too near them, washing hands frequently, making sure her desk and chair are clean, etc.

 

[giftedbyadoption]

BUMP.... please someone help out a mom in stress
so sorry about your little one I have a 9 year old I cant imagine being I have GI problems ( reason for me being here) I feel for any children with this. I have had mine all my life but mine is the opposite I can not go.

This is a good board someone will help with answers

 

[giftedbyadoption]

I have been on remicade for 4 years Clint for RA if you have any ?s about Remicade let me know?

 

[DustyKat]

Hey Clint,

I'm so sorry to hear about your daughter. I understand what difficult and heartbreaking time it is for all right now.

Her condition may not be more serious than they are telling as there are many doctors now that subscribe to the top down approach rather than the step up regime. What that means is they like to hit the disease hard and fast and get the patient into remission to minimise any lasting damage that may be done to the bowel. The step up approach goes the other way by starting lightly and working as each treatment fails until you reach the biologics. I imagine the doctors feel the disease is advanced enough to bypass the milder drugs and go straight to the heavier ones.

The TB test and immunisations she is receiving are to prepare her for the biologic drugs.

My children aren't on a biologic but on an immunosuppressive that is a step down from them. There are a number of parents, with children with IBD here, and members that are taking a biologic and attending school, university and work on a regular basis. Dexky, who has posted above, has a son that is on a biologic, Humira. If you pop by the parent's forum that Jessi has linked you to and ask about school and biologics there you are bound to get responses there. Here is a link to Crohn's and Colitis America, you will see on the left hand menu that there is a section for kids and teens. You will also find loads of information for yourself to help you through this journey...

http://www.ccfa.org/

There are also a number of stickied threads at the top of the parents form that have information you may find useful. This thread has a post in it about Immunisations and IBD...

http://www.crohnsforum.com/showthread.php?t=18416

Good luck Clint and welcome aboard. I hope things settle for your daughter very soon, poor love...:hug:...keep asking questions and we will do our best to help you out. Keep asking, asking, asking your docs questions too!

Dusty. xxx

 

[QueenGothel]

They are doing a TB test and Hep A shot, they also gave her a flu shot today too. They are doing a steroid that is being called in also. How frequently do flare up's occur or does it just vary person to person ? They also said if she doesnt start eating soon they are going to have to hospitalize her . Is this normal ? They have also said if anyone at school is sick she cant go or be around them.. As far as being around anyone sick Is this going to be like this forever?? If so she will miss a lot of School.. How do I go about finding a local support group not only for parents but for her also? She is having a hard time with this and kids at School picking on her about going to the bathroom so much. And her Mom and I just dont know what to do for her yet. We are trying to find out everything we can it just seems like there is so much to know..

My DD (4 years old) just got out of the hospital. It seemed like the stress made her worse. It was a 10 day stay and she had a blood transfusion. You need to find something she will eat that doesn't upset her. Avoiding raw fruit and veggies and fiber no higher than 1. The steroids will throw this thing into remission. Her immune system will be way down. If she gets hospitalized they will probably start her on flagyl too. Which she will hate it is to avoid c diff and is nasty tasting. It is a horrible place to be but sometimes is a necessity. I would ask to start her on the steroids at home and see if it works. They will make her hungry!!! But get her CBC done if she is bleeding. I would try to treat at home if you can. Also start working on swallowing pills if she doesn't yet. My 4 year old takes 11 adult pills a day now. It took about 3 days to make her a pro. Look up my previous posts on how we did this. Just saying this bc some treatments are limited if you can't swallow pills. Best of luck to ya. We are working with a homeopathic doctor also. There is a lot of stuff to do. Meds, diet, homeopathic therapy. pH levels are important also. She is probably acidic right now. So sorry, this disease sucks and is a full time job. If she goes into the hospital be sure to talk with a social worker about secondary medical insurance also. If the steroid helps keep in mind this remission will be short they will start weening her bc it really is bad for her to be on. It is the big guns. So get her on a diet and supplements ASAP. I don't know what she usually eats but my DD was so acidic. No wonder. Doctors will say that the diet has nothing to do with it sometimes. I changed doctors at the hospital.

 

[Johnnysmom]

So sorry you have to deal with all of this. (((Hugs))) to you and your precious daughter. It is overwhelming now and hard not to think ahead to her future with so many things uncertain but just deal with today. I promise it gets so much easier and the meds really aren't that bad in fact I think my son feels much better now that he is on them, we didn't realize how poor he was feeling until he started getting treatment. Just a tip for school, we have my son and daughter keep antibacterial wipes in their desks at school and they clean their hands always before snack and lunch. Hand sanitizer only kills bacteria not viruses so use the wipes, the actual friction of rubbing them is what takes the viruses off. It is easier for them than hand washing and it has kept us all healthy.

 

[QueenGothel]

Ty for the answers and where to find them.. They are talking about putting her on Remicade . I dont know if that is a good way to go or not what do you think?
I take it That it is more severe then the Doctors are leading us to believe with wanting to put her on Remicade ? I am just more lost than anything right now and not sure how to deal with it yet....;

I had a doctor recommend remi then a new doctor came in and said to try asacol and other things first (suppositories). He said once you go remicade you don't usually go back. Your body will become immune if your on and off yoyo goes on. But it is a miracle drug for many on here. I felt my DD was way too young and I wanted to exhaust other treatments before the remicade guns come out. It is a individuals choice and I wasn't prepared to make that for my DD yet. I hadnt even tried the diet or homeopathics yet. I felt I needed to be more informed about my DDs triggers and pH levels were acidic @ 6. She was on asacol which required a pH of 7 to work. So I think we are on the right track now. You will have to be her patient advocate. There is a lot of information out there. Some good and some bad. Let the doctor know your concerns and questions. I actually believe parasites have an influence also. But docs can only find like -50 out of 1000 that exist. that is why I decided to try homeopathics... But my DD has things going on that the doctors can't explain extremely high WBC over the normal range even for someone on steroids and inflamed. Couldn't stop the bleeding with IV steroids and flagyl.
She is doing good now and home and no blood.

 

[Tally05]

Hi I got diagnosed with colitis when I was 11. Once diagnosed steroids quickly got it under control. The only advice I can think of thats not alteady been said is to make sure she takes her pentasa everyday. Especially around stressful times at school like exams. That was the only time i had had flare ups - when I was stressed with exams. Iv had 4 bad flare ups since I was 11. By bad I mean I had to take extra medication to get it under control. That's it. Occasionally I get mini flares that just required me to increase my pentasa. I'm 22 now. Oh one more thing its a gud idea to tell the teachers at school that your child needs to be able to go to the toilet when she wants without asking permission. It helped me a lot that I could just get up and leave if I needed to go, they even gave me a key to the staff toilets in case they would be nearer my classroom. I hope the colitis gets unde r control soon and your little one starts feeling better x

 

[Dutch941]

Hi Clint. I am also brand new to this world. I had3 healthy kids for the last 12years and was thankful every day. That changed in December when we too noticed diarrhea, vomiting, weightless in our 12 year old hockey player Matt. He lost 8 lbs in 6 months and had no appetite. Bloodwork showed severe anemia. We chose to hospitiize him and were on IV for 5 days......colonoscopy showed severe ulcers in colon only...diagnosed UC.....he was placed on steroids in the hospital and pentasa 500 mg.....also iron supplements, oscal d, omeprazole...........this combo has knocked his inflammation down, stopped internal bleeding, and returned his stool to normalcy....his weight is returning quickly and his nutritional intake is rising slowly...we are now faced with starting 6mp and are very nervous about that. I'm not sure if your doctor believes things to be more serious for your daughter but your description reminded me so much of my sons condition that I wonder if the path we were sent on wouldn't make more sense for you? I hope this helps......we are learning as we go also.....stay strong....your daughter needs someone strong in her corner. I know how hard that can be to do....but it appears to be our new reality.
Dutch