New here and new to Crohns

[mom2nick]

Hello all. My son, Nick, has recently been diagnosed with Crohns. He is 11 and has been suffering for about 2 years. Recently he was hospitalized for a very severe flare and case of cdif. He is now set up for his repeat colonoscopy, egd, and capsule endoscopy....so much for my little guy (who would kill me for calling him that)!

I am an RN and just feel very hepless as this is not my are of expertise. I feel like I should be more knowledgeable and be more help but when it comes to your child your a mom first not a a nurse!

Just wanted to introduce myself. I havent found many sites offering support for parents dealing with this so Im glad to have found you all!

 

[Farmwife]

Hi and welcome,
I'm so glad he got over his c. diff , my Grace suffered from that also. Scary stuff.

I know what you mean. I'm homeschooling Grace in Pre-school. I was a pre-school teacher. Why couldn't Grace have a learning disability? I could help there.

If you don't mind me asking. Where is his Crohn's located? What kind of meds does he take?

I hope you feel welcomed and we're happy to have you aboard.!

 

[Clash]

Welcome, mom2nick! So sorry to hear of all your son has had to go through. This is a wonderful site for info. So glad you found the Parents of Kids with IBD subforum. There are a great bunch of knowledgeable parents here full of compassion, advice and humor(which keeps us all going at difficult times).

I'm going to tag, Crohnsinct, kimmiedwife, and my little penguin as I believe their kids are in the general age group +/- a couple of years.

 

[mom2nick]

Thanks for the quick responses. As for "where" his Crohns is we were told he needs his repeat testing before they will confirm. Not on any meds presently but we have an appt to start talking about definitive treatments, etc His GI wanted his cdif gone and him free of the Vanc for 4 weeks before starting anything else.

 

[Farmwife]

How about any dietary changes to help until then? Have you notice any triggers?
Does your dear son have much pain? If so does he take anything?

 

[Jmrogers4]

Welcome Mom2Nick, sorry to hear about your son. This is the place to come for information and support. I'm sure you will be an expert soon enough, I think it helps when you can understand what they are talking about when it's this level of that and etc. I know I always go to my RN friends to ask what that means. Best of Luck and hope they get everything sorted out soon and he is on the road to a long bout of remission

 

[Charleigh]

My son is 11 and I am new too so I can offer 0 advice (my head is still spinning). All I can offer is a (((hug))). We will get through this!

 

[ryanps]

Will keep all of your children in my thoughts and prayers. When I think about what I went through with this disease as a grown adult... This is why I ask every day for a cure to be found.

 

[mom2nick]

As far as diet goes...we know some of his triggers and avoid those. His doc also has him on Florastor. He is in alot of pain often and for that he takes Bentyl but we find that it doesnt do much. (

Charleigh...how is your son coping? Is he keeping up in school?

I will keep all of your families in my thoughts and plan to come back often to share and hopefully help you all as well!

 

[Farmwife]

Does Tylenol or heating pads help. They seem to help Grace at least mentally.
We've done Florastor when Grace had c diff also. Now she's taking on that has multi strains in it.

We're they able to get the c diff in one round or did it take more?

Keep us posted and I hope all goes well.

 

[mom2nick]

Farmwife...It appears the cdif is gone after the 1 round of vanc. Fingers crossed...
I havent tried heating pad but will put it on the list. Pretty sure Tylenol has helped mentally also but even that is a help.

Thanks again!

 

[Sascot]

Hi, and welcome. Sorry to hear about your son's diagnosis - my son was 12 when diagnosed last year. He also used to have a hot water bottle clutched to his stomach for a week at a time - seemed to help more than the paracetamol. Hopefully you will get a plan in place to get your son into remission so he can start to feel better. My son went onto the 8 weeks of Enteral Nutrition (liquid diet) through a nasal-gastric tube since he couldn't stand the taste of it. The EN really helped him and allowed him a few months symptom free. Good luck :smile:

 

[my little penguin]

Hugs...
My son was dx at age 7.
He is now 8.
We did a lot of heating pads.
A would recommend getting a 504 plan ccfa has templates .
Here is the link:
http://www.ccfa.org/resources/template-section-504-plan.html
It helps with school.
remission can take many months to years so be prepared.
There is not one size fits all drug unfortunately .
Some find relief on the first drug.
Some like my son fail drug after drug.
We finally found one though.
Any joint pain run to a Rheumo since they handle all EIM very well.
Www.improvecarenow.org
Is a site with a lot of good docs and resources.
Also ccfa
Find a local chapter email call they should be able to find other parents with youngsters in your area.
Good luck

 

[crohnsinct]

Hi there. My daughter was dx'd at 12 and is now 13. The parents here are a wealth of information and compassion. It took me a few months to find them but ever since I have I make no decisions without consulting the committee first:ycool:

My advice to you for now is to read, read and then read some more. Information and knowledge is very empowering. And then ask, ask and then ask some more. No question is stupid, no concern too small, and definitely no detail can gross us out :ylol2:

Poke around the treatments threads and the research thread. All the parents sub forum posts on research are consolidated into one thread so check them out.

Good luck and I hope your boy is able to find relief soon!

 

[DustyKat]

Hi mom2nick and :welcome:

I'm sorry to hear about your lad...:hug:

I hope the C Diff is well on the way out and you soon have a solid plan of action to get your boy feeling fab again, bless him.

Good luck with the scopes and pill cam!

Dusty. xxx

 

[Charleigh]

As far as diet goes...we know some of his triggers and avoid those. His doc also has him on Florastor. He is in alot of pain often and for that he takes Bentyl but we find that it doesnt do much. (

Charleigh...how is your son coping? Is he keeping up in school?

I will keep all of your families in my thoughts and plan to come back often to share and hopefully help you all as well!

I am thankful right now that I home school. We have had good days and bad days, but I can adjust our schedule ~ pushing him slightly harder on his good days and laying low on the difficult ones.

 

[Ams-Qld]

Hi mom2nick and also Charleigh!
It is so hard I think when first diagnosed, often there is an immediate sense of relief to finally have a dx - and then the reality sinks in. It is not easy, it is heartbreaking at times and extremely stressful! I know we would all take this burden from our children immediately if we could.
My youngest son was dx two years ago at age 10. He had been very ill for 6 months prior. He has been fairly well till recently when he developed abscesses. Since then I have upped his probiotics as he is on constant Flagyl and he is doing pretty well all things considered. We follow a low residue diet but not too strictly. We also will be having new bloods fecalcal testing and an MRE and pill endoscopy this month to see how things are going.
I am also home schooling him (and his older sister) for other reasons than his Crohn's but it has worked out well for us these last three years while he has been so anemic and lacking in energy and focus. I just wanted to say welcome. The people here are great with encouragement and knowledge. It has also been a real blessing to meet other parents with children of a similiar age going through the same things. Ams xx

 

[momoftwinboys]

Welcome mom2nick and Charleigh

My son is also 11 and was dx a year ago. I have learned alot from the parents here.

Best wishes for speedy remissions for both of your boys.

 

[Twiggy930]

:welcome: mom2nick and Charleigh

I too have an 11 year old son with Crohn's. I am sorry to hear that your sons have been ill but I am glad you have found the forum. We have had lots of issues with pain around here. It is so devastating to see your kids in pain and not be able to take it away. As for school, my son missed about 6 months of his grade 5 year. There was just no way he could go. We kept up with school work at home as best we could. Now that he is feeling better (most days anyway) he has been able to catch up on his school work.

I hope your sons get back to feeling well soon.

 

[polly13]

Welcome to Mumtonick and Charleigh - am glad you found this site but sorry that you had to. My daughter lucy was diagnosed at two and a half and honestly if I hadn't found this site I dont know what I would have done. No matter the what the symptom, or the medication you will find somebody on here has had experience of it and are more than willing to share which really provides great comfort as you know there are others out there that know what you are going through.

 

[jmckinley]

I just wanted to say welcome and offer you support. You've gotten some great advice already from the committee.

My son is 15, but was dx'd at 12. He was sick for several months prior, we just didn't know what was wrong until it got pretty bad. We also have a 504 plan with the school. They will accomodate his needs and are more lenient on absences with the plan.

It is very frightening at first, but reading and learning about the disease will help you recover from the stunned stage. Be patient, whatever medication you start, it will take time to gain remission. Don't hesitate to ask questions here and at the GI office!

I wonder if zofran would help. You said the bentyl wasn't helping. Zofran helped Ryan when bentyl wouldn't.

Hugs!!

 

[my little penguin]

DS used zofran but it only stopped vomiting for him.
It did not stop the stomach pain or nausea.
Hope you can start real meds soon so he can get some relief.

 

[kimmidwife]

I just wanted to say welcome and Mom2nick don't feel guilty about being in the medical field and unfamiliar with IBD. I am a nurse as well and my field is women's health/ midwifery so I also knew little about IBD in the beginning. There is a lot of great info on this site and I highly recommend especially looking at the treatment section. This is a great place and very supportive as you will get to know.

 

[Patricia56]

Greetings -

My son was diagnosed at age 10. He is nearly 17 now, growing taller every day, strong and overall in good health. So know that there is hope and things will improve. It takes time and part of the trip may involve rough water but the chances are in a couple years he will be in remission and you will be able to relax and get on with life.

About the pain, I suggest warm rice packs or water bottles. Ask the doctor if it's OK to give him benadryl instead of tylenol or when the tylenol doesn't work. Gentle belly rubs going in the direction of the colon may help soothe his pain.

If the doctor has not given you instructions about when to report things to him and/or when to go to ER, I would contact his office and ask for that information. For example, does he want to know if your son runs a fever? If so, how high a fever and for how long? Does he want to hear about pain that wakes him in the night? What do you do if he has pain that doubles him over and he can't walk (hint: ER)?

I hope he is feeling better really soon. Keep us posted.

 

[Lewiss mum]

hi just wanted to say hi and hopen u gets some answers soon . my boy ws dx at age 5 he's on infliximab omeprazole and buscopan . he's going for some tests to check his small bowel as his disease is only in hospital rectum and colon so hoping its not any wear else . when does he go for his tests .x