Overwhelmed that my child has Crohn's

Hi, my daughter was diagnosed with Crohn's on February 2013. It took a year for her to be diagnosed, what really surprises me is the lack of knowledge some doctors have on this disease, we saw doctor after doctor who didn't know the difference between a haemorrhoid vs a skin tag, or crohn's vs eating disorder. My daughter lost over 70 lbs in a year yet the many doctors and hospital visits we went to, not one figured it out. I finally told her doctor I wanted her to see a gastrologist and when we saw him his first reaction was about the weight lost, but after describing her symptoms to him, he ruled out eating disorder and order an endoscopy and colonoscopy where it was determined she had Crohn's.

She was put on predisone and two weeks later developed thrust in her mouth, once that cleared two weeks later she developed shingles, then they started her on imuran and weaned her off of the predisione once completely off predisione, unfortunately she did not go into remission. She was then hospitalized for nosagastric feeding which she will be on for 6 to 8 weeks, she dislikes it and keeping her positive is tough at times.

It will be six months since the diagnose and it has been non stop, with doctors appointments and blood work, MRI and bone density tests.
I don't let her see me cry, and try hard to keep her spirits up, but I feel so overwhelmed by all this, not sure if I'm still upset that it took so long for her to be diagnosed, or the side effects of the meds, or even all the information you receive from the doctors and nurses. All I know is that I miss my little girl, so happy and vibrant.

Hi Oceanblue236 and :welcome:

I am so very sorry to hear your daughter, what a very difficult and heartbreaking time for you. :ghug: And she surely has had a tough time of it, bless her. :heart:

You will find many kindred spirits here Mum, in so many ways...long diagnosis times, scary meds, your life turned upside down and so much more.

Please drop by the parent's forum...

http://www.crohnsforum.com/forumdisplay.php?f=49

...there are loads of knowledgeable, fab and funny folk hanging out there that know exactly what you are going through.

Also have a look at the kids on Enteral Nutrition thread...

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

...it is full of info and experiences with both oral and naso gastric EN with kids of all ages. I hope it is as successful for your lass as it has for many others.

How old is your daughter?

Where is her Crohn's located?

I so hear you about the crying hun, we all do. I find it hardest at the end of the day when it is dark and all is quiet, it's then that the grief envelopes you. I have often had a cry into my pillow or the shower is another good place! It is a good thing to let out though and I find it helps me recharge the old batteries and face the day afresh.

Good luck and welcome aboard and if you have any questions at all please don't hesitate to ask!

Dusty. xxx

Oceanblue,

You have come to the right place to find lots of support and information.
It is so hard but you and your daughter are not alone.

It seems everyone is different in how they respond to different meds, and a late diagnosis does not help.

I hope they find the meds that work for her and get the Crohns under control very soon. It is not uncommon to be put on another dose of Prednisone while they find and allow the other meds to work.

Your daughter is very blessed to have you.

If you havent already, it does not hurt to have copies of all labs and tests.

There is so much too learn and as parents we will see, hear and think the worst. They are doing more and more research and will hopefully find a cure soon.

Do they have her on antibiotics too?

in addition to medications, try the specific carbohydrate diet to reduce symptoms.

its basically a low lactose(milk sugar) and sucrose(refined white/brown sugar/cane sugar/fruit, etc) diet, to starve the bad bacteria that stimulate mucus production. more details in the book.
http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818

also you should know of a new treatment being studied called a fecal transplant that may cure IBD. I wrote an entire thread about it here- http://www.crohnsforum.com/showthread.php?t=52400

Welcome Oceanblue,
You have come to the right place so many of us mom's just want our children back to the way they were before but there is hope for finding the right mix of medicine, diet, etc. My son is currently doing very well growing and gaining weight, we have our little bumps in the road and we have to add or take away something.

It took a while to get there, remember your daughter did not end up this way overnight and many of the meds take a while to work.

The EN (NG tube feeding) has worked wonders for many on here. My son has not done the NG tube but he drinks the formulas, we have not done total liquid but only supplemental I would however not hesitate to do total EN.

One of the hardest things to do is keep an open mind and be open to change, not all meds work for everyone and it seems different combinations work for different people. For my son it is currently a combination of LDN, supplemental semi-elemental formulas (Peptide), Periactin (to stimulate his appetite), Vitamin D3 and a multi-vitamin.

This is a great place to come for support, to learn, cry or vent. We all understand. Keep reading as Dusty said there are so many useful threads/information in the parents section we hope you join us there.

I hope your daughter is feeling well soon

Hi OceanBlue,
I hear your heart ache. This road can be so bumpy. Your doing a good job.
My 4 yr old girl also had a n-tube for awhile. Now she has a g-tube (through her belly).
At the bottom of my avatar you'll see a link for the N-G Support Group. Please stop by and ask any questions. Lots of advice from people that had to have these tubes.

HUGS

More hugs.
It is so hard in the beginning but just as it took time to get a dx it also takes time to. Heal emotionally as well as physically.
Please stop in the parents forum
We are there to vent ask questions or just hand out if that is what you need