Help Please Anyone

[kerrbear1030]

Hi my name is Kerry. My daughter is 14 years old and has been suffering for a very long time. Since she was little she has been very ill with stomach pains, vomiting, diarrhea, sores in her mouth, trouble eating without getting sick, joint pain ( knees, back and hip). I have had her to a lot of doctors who said she was faking, didn't want to go to school to oh well some kids just have unexplained symptoms. My daughter new Dr sent her to a Dr who deals with Crohn's Diesease. My daughter is now having trouble going to the bathroom and she is having a colo test and a capsule done on Thursday. The Dr is admitting her into the hospital tomorrow morning because I can get her to go to the bathroom anymore. When we first went to the GI Dr for the first time she ordered blood work which is showing that my daughter has an autoimmune disease. The Dr said that she is showing sign of Crohns. She is also being sent to see a rheum Dr. Please help anyone Im so confused and scared. Anyone who can help plz

 

[DJW]

Hi Kerrbear. It's completely understandable that you are confused and scared. The uncertainty is difficult. Getting some answers means treatment can start. The early stages of a diagnosis can be hard. Many unanswered questions. There is a subforum hear for parents and undisgiagnosed folks. Please let me know if you have any questions. Best wishes.

 

[PsychoJane]

Hi Kerry,
I guess how distressing it can be not knowing what is happening to your daughter at this point. That step is one of the hardest in the process, the unknown and the possible adaptation that is to come. I was diagnosed with crohn at the same age as your daughter. According to the symptoms, it is possible that this is what she is facing but only the exams that you mentioned will bring a clear answer. Keep in mind that it is a good thing that she get to be hospitalized due to her condition at the start. It may sound weird to say but clearly, everything that needs to be done gets done. The diagnostic is generally faster that way. It took a few day to get a diagnostic when I was admitted at 14 (ok, they got confused and thought I was having UC instead of CD at first).

You are probably new with this disease and what is related to it but what you mentioned in your message really fits the description for inflammatory bowel disease. Likely, your daugther is seeing a gastroenterologist who will be taking the digestive problem in charge and help with the management of the condition if it is Crohn. The rheumatologist takes care of various condition that relates to articulation/joints and systemic autoimmune disease. At this point, this is probably the best combination your daughter can have to help getting answers.

I don't know if this helps, if you have any question or worries you would like to know about feel free to ask. We will be there to help you!

 

[Trysha]

Hello kerrbear
Sorry to hear you are going through these agonies of mind
Nothing worse than seeing your child suffering in this way.
It is good that you have found a GI who sounds on the ball and hopefully your daughter will soon be receiving the help back to some better health.
There is a parent subforum on this site which will be helpful to you also
The Worried Mum's/Dad's/Carers Club. Click on Support Groups listed at the top of this page.
Your daughter sounds to be on the right pathway back to health.
Feel better soon
Hugs and best wishes
Trysha

 

[Clash]

Welcome kerrbear1030. So sorry to hear of all that you and your daughter are going through. I know the worry and fear can be so overwhelming.

My son had a lot of the same symptoms you are describing, it started with mouth ulcers, fatigue, night fevers, constipation. His started when he was 15 and his GP kept saying something viral. Finally, his blood work showed slight anemia and we were sent to a GI, a colonoscopy and endoscopy were scheduled and he was diagnosed right after the colonoscopy.

Have a look through the Parents Forum(<---click here) it has a lot of great info as well and many parents who are going through or have gone through this process. They are wonderful, knowledgeable, caring people that offer loads of experience and support.

I hope the scopes give you some answers and your daughter gets some relief soon.

 

[CrohnsKidMom]

Welcome Kerrbear, so sorry to hear all that your and your daughter have been going through. This is the tough part-not knowing what is wrong, then all the testing. But it sounds like your daughter is getting the care she needs, and you should have some answers soon. Then treatment can begin and your daughter will be feeling better. My 8 yr old son was diagnosed in March and had similar symptoms. It was hard on him, feeling so sick and then all the testing. But he is doing so much better now. Hang in there. I'll be praying for you.

 

[lblair]

Hi Welcome

Sounds like you are doing everything right!! I have a lot of pains to they say that is the Crohn's!!! Glad that they are admitting her you will have answers soon!!!! Praying for your family!! Keep us posted!!!

 

[crohnsinct]

Hey Keerrbear welcome although I am sorry you had to find us. My daughter was admitted for her clean out and scopes for dx as well. She also had some complications that her GI thought were best managed inpatient and I thank God he admitted her. It really is the best for her and you. If your hospital is anything like ours they will answer your questions 24/7 and watch her like a hawk.

I know it is hard facing the unknown but trust me finally receiving a diagnosis is really for the best. You will know what you are dealing with and can start a treatment plan and finally see your girl healthy and thriving.

If they are able to rule out IBD then you are that much closer to answers for your girl.

Hold on. You are in for a bit of a ride and probably have many decisions ahead of you. This is an amazing place for information, advice and a shoulder to lean on.

IBD is not the end of the world. My daughter was dx'd inpatient in ICU. Malnourished, needed blood transfusions and one night I was told to call my husband, daughter and pastor. All of that was because her disease was silent and only reared it's ugly head over two weeks.

Today, thanks to the dx and proper treatment, she is 22 pounds heavier and 5 3/4" inches taller. She is a thriving competitive swimmer, runner and a straight A student. There is an end to the tunnel. Just a little scary dark until you get there. :kiss:

 

[Tesscorm]

There is nothing harder than seeing your child suffer :ghug:, I'm so sorry that you're going through this.

Hang in there a bit longer, once you have a firm diagnosis, you can start on treatment and get your daughter feeling better!

When crohns flares, many people find that it goes hand in hand with joint pain. The rheumi can work with your daughter's GI in finding a treatment that will ease both.

If your daughter is, in fact, diagnosed with Crohns, please ask your GI about exclusive enteral nutrition as a treatment to induce remission. It has comparable success rates at inducing remission as steroids (it was the treatment my son used) but has no side effects. It is not an easy treatment as your daughter will have to be on a liquid diet (special formula) for approx 6 weeks with no food but, as I said, it can be success, has no side effects and will provide her with all necessary nutrition. Please read the link below for more info. It's commonly the first treatment option for children around the world, except in the U.S. - for some reason, perhaps patient compliance??, GIs in the U.S. seem to not use it as often???

http://www.crohnsforum.com/showthread.php?t=36345

There are lots of very knowledgeable members and parents here... you're sure to feel a bit overwhelmed with all the info the doctors will give you... don't hesitate to ask your GI questions and come here with questions!

Good luck tomorrow! :ghug:

 

[Jmrogers4]

Welcome Kerrbear
I'm sorry you have had to find your way here. The scopes will hopefully give you some definite answers and allow you to start on the path with treatment.
It is a scary with lots of unknown but there are so many knowledgeable people on here to listen, hold your hand (if only virtually), make you laugh, cry along with and sometimes give you a gentle nudge. I'm so incredibly grateful for this forum I wish I would have found it when my son was first diagnosed.
A lot of times it helps to have a "team" of doctors that work together as there are so many things that can be affected.
The good news is that there is hope, make sure you check out success stories http://www.crohnsforum.com/showthread.php?t=27079 as well, there are many that may not post a lot or be on here often and that is because they are out enjoying laugh and for the moment living symptom free.
My son is a success story at the moment. He will be 14 on Wednesday and is virtually symptom free and enjoying life and acting like most other 14 year old boys :ybatty:

 

[DustyKat]

Sorry I'm late to this kerrbear...:ghug:

You have been given fab advice so I would just like to send you luck and best wishes that you get the solid answers you need so your daughter finds long and lasting relief, bless her. :ghug:

I hope all went well with tests!

Dusty. xxx

 

[my little penguin]

Good luck today
Update us when you can

 

[Amy2]

I'm so very sorry for you and your daughter. When my son was first diagnosed this past March, I was so sad and afraid, it was overwhelming!!!

But, things got better for my son. He's not suffering anymore. Soon your daughter will be through the worst of it and on the mend, too!

 

[LJS]

Kerry,

So sorry for you and your daughter. All of us on this board have been through (and continue to go through) the ups and downs associated with this disease and others. I hate that we all have to meet this way, but we are all here for each other.

Once you have a diagnosis you can get on with the job of healing your daughter. Things will get better. The unknown is the worst part.. knowing may suck, but then you have an enemy to fight!

Good luck and let us know how you and your daughter are doing!

Lin

 

[jmckinley]

I hope things went well yesterday and you are on your way to finding some answers AND solutions!