Reeling from new diagnosis

[jland25]

My beautiful 12-year-old son got his official diagnosis of ileocolitis today. He got very sick very suddenly, losing nearly ten pounds in a month. While I am grateful to have some answers, I am heartbroken. My son has autism and I am a single mom so we've already had our share of tough times. Now he has to deal with pain and weakness and all the testing that frightens him so very much.

Up until this point he has not been sick often so I haven't had that much to do with doctors beyond a visit for a virus or strep throat. I have always taken a holistic approach to medical issues and am cautious when it comes to medication. Now I have a doctor (a man I do like) telling me that my son needs to take Prednisone and Flagyl and then transition to 6-MP and while I know that my son is quite ill, this is overwhelming. I have my own health issues, including an indolent lymphoma, so all the potential side effects feel very real.

How did others handle the first days after diagnosis? Were there particular resources that were helpful? How did you come to terms with the medications that were necessary? Any tips on how to keep one's sanity?

I feel so guilty that my son has yet another serious issue to deal with and want to help him all that I can. Any advice would be very much appreciated.

Jennifer

 

[Sascot]

Sorry to hear of your son's diagnosis. It is a shock to deal with these things. I found that it was very upsetting for the first few months because it is new and scary. However, as much as I will never not worry, this does become your new normal. My son was also diagnosed at 12 and has been on 6mp for a year. I don't like the risk factors, but untreated disease is also dangerous and affects quality of life.
This will be scary for your son to start with but hopefully as he gets more familiar with the docs and hospital he will be more comfortable. It may be worth getting together a special bag of things he really likes to take with to tests, etc. something he can look forward to and be part of a routine he likes. Good luck

 

[SupportiveMom]

I cried.... I cried for days. My daughter was 11, I knew the diagnosis was coming and I still cried. I blamed myself or something I might have done or didn't do. I came out of that place knowing none of it was my fault and I couldn't have prevented it. It took a while but it does get better. Hold your chin up! We are here for you!

 

[Tesscorm]

It truly is a shock and I found it very surreal as doctors were discussing this chronic illness and I'm looking at my son who had always been healthy until a couple of months before! It does take a bit of time to adjust and this forum is absolutely fantastic as a resource for information and support. The members here are very knowledgeable and supportive and the parents can all identify with your fears and questions.

As time passes and as you learn more about what you're dealing with, it does become easier! :ghug: The treatments will, hopefully, get your son into remission quickly and you will rest a bit easier once you see him feeling well and regaining his lost weight.

:ghug: :ghug:

 

[CrohnsKidMom]

When my son first got sick and prior to diagnosis, I feared he may be dying... the dangers of googling his symptoms. So, when we did get the CD diagnosis, I was relieved. Then I started googling the drugs and was scared again by all the side effects that can happen. This forum helped me-helped me realize the meds are necessary to get the disease under control. This disease can cause so much damage without the proper treatment. Then, I had a great support system of people at church praying for our family. It may sound corny, but a real sense of peace came upon us. You are in the early days when it all is so overwhelming. Plus you have other issues you are dealing with. I would suggest finding a support group, a church, or even a good listening friend. We are here for you too!

 

[Jmrogers4]

Sorry It's a double edge sword. At least now you have a diagnosis and can start working on a plan to get him healthy but you have to deal with the possible (although minor possibility) side effects and the fact that this is chronic. When the medicine is working and your son is feeling wonderful you can almost forget about all the possible side effects kind of like you don't think about a car crash every time your child gets into a car. You know it's a possibility but the rewards outweigh the risks.
Get support where you can, here, family, friends some places even have local support groups usually through CCFA.
Jack's father has Crohn's and so while it was always known it was possible it was still an overwhelming shock and most days I don't break down but every once in a while I still loose it and have to go cry in the shower. It's much easier when things are going well to just go on with life as opposed to in the beginning or when they are not feeling well to be consumed with thoughts of Crohn's all the what if's - Try not to go there! I know easier said then done.

 

[my little penguin]

DS was dx at age 7 after two years of fighting /knowing something was wrong but not what.
Even the Gi was shocked by the crohn's dx . He was thinking something else.
Realize the damage of this disease was done silently for years before you see symtpoms outside. Also realize the bad meds can take months to work .
The first med tried may not work but once you find one that works and gives you your kid back then the possible side effects are just that a very low risk compared to the other risks we let our kids take everyday.
Your child can get better and you can deal with it but give your self time to grieve the dx.
Everyone goes through it in stages but with each set back ( there will be plenty ) it tends to start over but not as long.
It took us close to a year or more to find the right type of meds for my son and figure out what his symptoms mean .
The goal in the beginning is to have a single good day .
My goal now is to have more good than bad days .
I can say this is mostly true.

Remember this is not a race but a marathon.
You will learn when to call the GI and when to wait .
You can get to normal but for today take it bit by bit - venting here when needed.

 

[crohniekid]

My son R was just diagnosed in Feb with CD (he's 9). So I'm in the same boat as you. We literally just finished all the testing (except ophthalmologist) that our GI wants done but are still waiting to hear the result's at R's next appointment (next week). It's been crazy. Every tummy ache, pain, and sniffle is an internal "should I panic" battle. We have been on an EEN diet (no food or drink except water and formula...R drink Kids Essentials 1.5 and Ensure Plus) and started Imuran (very similar to 6MP I believe) last week. R's symptoms of D are the same and he has new ones (stomach pain, rectal pain and the occasional constipation) so I'm wondering if he's already showing some side effects from the Imuran...but I don't know.
I can't even imagine if I was a single mom or he had other medical issues...some days I think I'm getting an ulcer just from this!!!! My latest resolution is to focus on today and R's health today...not borrow trouble from the 'maybe's' of tomorrow. You are going to get through it!!! A dear friend of mine (in real life) has a daughter the same age as R who has UC and she's been on remicade since she was five...and no side effects OR flare ups since her dx!!! So it can happen! This forum has great advice and stories...and is a good place to pick the brains of other parents who have been there.

 

[jland25]

Thank you all for the advice! I'm sure I will be back here often---

 

[CarolinAlaska]

Jennifer, sorry to hear about your son. I just finished my first year after my daughter was diagnosed and I very much remember those feelings. It plays a toll on your health too, so do what you can to take care of you - exercise, eat right, etc. It does get easier, and I think this forum is a huge help in coming to terms with it... I'll say a prayer for you and your son right now.