New Diagnosis in 13yo- Scared Mom

[AverysMom]

Hi! After 6 weeks of symptoms we finally have a diagnosis! In early January my almost 13 year old had some skin lesions on her lower legs which after a punch biopsy were diagnosed as Erythema Nodosum. Her sed rate at the time was 50 and while the lesions improved after a 5 day Predisone course they came right back when the meds were done which led us to look for an underlying etiology. She also had intermittant low grade fevers, severe pain and swelling in her legs. She had been having some explosive poops which miraculously cleared up with Prednisone so I pushed for a GI consult. Colonoscopy/EGD yesterday led to the Crohns diagnosis and GI started us on a 2 week taper of Prednisolone. We will meet with a nutritionist and the doctor next week and the plan is to start 6-MP. After reading about this drug I am terrified and want to look at any possible options. Anyone else have any diagnosis stories where you didn't go directly to the "big dog" meds? Glad to have found yall- all advice appreciated!

 

[araceli]

Hello AverysMom. I am sorry to hear that your son has Cronh's. Welcome to the forum. You will find a lot of nice people with information and support for you and your son. On the positive side, is good that he got a diagnosis fast. My daughter was 14 when she was diagnose after 6 months not knowing what was wrong. She started with prednisone and asacol and went in remission for one year. After a flare up, now she is on asacol, nexium and remicade. No more prednisone. So far no need for 6-MP. Talk to your doctor about your concerns. Best wishes.

 

[Jmrogers4]

Welcome to the forum Averysmom. Sorry you had to find us.
Do you know where her crohn's is located? Asacol generally helps if it is going to in the colon.
The drugs can be scary but it is only a very small percentage who experience side effects. The biggest issue is getting inflammation under control so that it does not continue to do damage which in itself can have some very serious side effects.
My son is 13 and started on Imuran at diagnosis which is very similar to 6mp and we have many parents on here whose children are on 6mp. They will do regular blood tests to check for a couple of thing - liver toxicity, in some people the liver can not process it and it is not a good med for them and theraputic levels. It takes a while to reach these levels and for the medicine to start working. The Imuran worked fairly well for us for several years but we never quite there. He had no more pain, fevers, normal bms but failed to gain weight and grow.
We are currently using LDN - which you can find out more about here.
http://www.crohnsforum.com/showthread.php?t=31142
It doesn't appear to have all the side effects of other meds but has not had a lot of research done on it although the drug naltrexone has been used for many years in much higher dosage.
You also may want to look into EEN or EN, which is Exclusive Entrenal Nutrition or just Entrenal Nutrition. My son is currently on supplemental EN and many have used this to get there child into remission and there have been quite a few papers on its effectiveness. You can find more information on this thread
http://www.crohnsforum.com/forumdisplay.php?f=161
Also please check out the parents of IBD, you can find lots of support there and answers to questions unique to teenagers/pediatric issues of Crohn's
Best of luck to you and you will find something that works for your daughter and you are comfortable with. There is a process of grieving that goes on when your child is first diagnosed but it will get better and we are here for those time when you need to vent or cheer.

 

[AverysMom]

Thanks for the replies. She had multiple areas of concern from the bottom of her esophagus, areas in the illeus and then throughout the colon.
I think the hardest part is that she doesn't SEEM sick. Yes she is fatigued (which I had attributed to being a teenager) and she is thin but she always has been. She never complained of belly pain per se; there have been a couple of times where she had said her belly felt "tight" and even woke up the next day with sore abs but never any nausea/vomiting. Ugh.

 

[Jmrogers4]

Did they check iron levels, vitamin D and B12. These are fairly common to be low in with Crohn's disease and may help the fatigue.
That is the hardest part is the not SEEMING sick and why it is so hard for others to understand is things are happening on the inside and all the sudden it goes down hill fast which is why they recommend the maintenance drugs to keep that from happening. The Asocal will probably not do much for the area of esophagus and illeus as it is my understanding it does not release to later and then only controls inflammation on the service (at least that is the way Jack's GI described it to me).
Jack has also always been thin but can and does quickly lose weight with the slightest bug/virus dropping him down to dangerous levels which is why we are doing the supplemental EN (This has only been in the last 3 weeks). He had only gained about 5-8 pounds in the last 3 years since diagnosis and grew 1 1/2 inch.
As far as the pain/tightness the way it was explained to me was that they don't necessarily equate pain the same way we do as they have been living with the feeling for so long that it becomes normal. So tightness to her may be pain to someone else (just a thought). Jack broke his foot a year ago in the morning and went all day and through 2 hours of running in football practice and all he said to me was his foot was bothering him. They didn't think he had broken it at the ER based on his pain level of what he said was a 2-3 until the xray came back.

 

[AverysMom]

Im not sure if those levels have been checked yet. When we were in preop for her EGD/Colon yesterday her heart rate was in the 170's and a new murmur was present. Wanted to direct admit us to the hospital but Avery was so upset that she had done the prep for the test that they allowed her to be "cleared" by cardiology on the premise that we come back this afternoon for an echocardiogram to evaluate the murmur. After the Crohns diagnosis yesterday, I may hit the floor if a cardiac issue is also found

 

[Jmrogers4]

I have a murmur that showed up when I was about her age, went away and showed up again when I was pregnant. Lots of tests on it but it has never been that big of an issue. Could be all the stress and everything on her body.
Hope it is nothing to worry about and yes the prep is the worst!
They usually automatically check for iron levels but you will have to ask to have vitamin levels checked.
I'm assuming they took biopsies during scopes. These will also give you more information as there can be microscopic inflammation which goes through the entire bowel wall which they can only tell through biopsies.
Hang in there and breath. One step at a time and when you are feeling overwhelmed and frustrated we have this little guy we like to call Mr. Stabby. He will make you feel better. :voodoo::voodoo:
Cute picture by the way, your daughter is beautiful.