Hi, this mom has finally decided to join :)

[S mom]

Hi there,
I've been reading this forum for a couple of months now - it's fantastic and I love this section for parents - but I didn't bother to actually join... well I finally took the plunge tonight and signed up
My son was diagnosed with Crohn's in Sept. 2011 at the age of 16. What a shock, no family history and previously, a pretty healthy kid. In retrospect, I think he had been having flares on and off for at least a few years but we just always passed it off as a stomach bug - he got better and we moved on.
But last March or April, he started losing weight and by May was getting up all night going to the washroom. By June, he was anemic and felt horrible. It took all summer to finally get him in to see the pediatric GI. By the time we got in, he weighed under 100 pounds and could hardly walk. They did scopes within a week and diagnosed him with Crohns - all through the large intestine and about a foot into the small.
The next day he started Enteral Nutrition with an ng tube which he continued for 12 weeks (only clear fluids). He had trouble getting the ng tube in so he just left it in all the time... within a few weeks, we were able to get all of his feeds in at night so he could disconnect from the pump during the day (and eventually return to school). He finished the EN on Dec. 15 :sun: and we slowly re-introduced food.
He was also put on Methotrexate about a week after starting EN. I guess it takes a while to work so the plan was that the EN would put him in remission and then by that time the Metho would be working and it would maintain him.
So far... all is good. He has been able to learn to inject himself with the Methotrexate and does not really complain of any side effects. He goes to the washroom slightly more often than your average guy (I think) but has lots of energy... is back to playing hockey and now we are just holding our breath hoping that this continues for a good long time!!!
Well, that's our story... I look forward to continuing to read this forum... and now I guess I'll be able to comment too! :emot-waycool:

 

[AZMOM]

Welcome, S Mom. We are glad to have you!

J.

 

[DustyKat]

Hi Mom and :welcome:

I'm so sorry to hear about your boy...:hug:

It's fab to hear though that he has responded so well to EN, YAY! I too hope the Methotrexate keeps in remission for a very, very long time.

Have you seen our EN and Methotrexate subforums?...

http://www.crohnsforum.com/forumdisplay.php?f=161

http://www.crohnsforum.com/forumdisplay.php?f=88

Has your son had blood levels done for B12, Iron Stores, Folate and Vitamin D? Since he has terminal ileum involvement I would recommend that you have them done.

It's lovely to have you here Mom and I look forward to seeing you around. Good luck and welcome aboard!

Dusty. xxx

 

[izzi'smom]

Welcome,..I am so glad you decided to join us!

 

[LilyRose]

Hello S Mom,

Welcome - I am sure you will find this fourm really supportive and helpful, and I am glad you have joined. My son also has crohn's , he is 6 years old.

You are right - I think it is such a shock when one of our children is diagnosed with something like this. But I am so glad the EN has got him in to remission and I hope the methotrexate continues it for a long time. He did really well with 12 weeks on EN. I'm sure he was glad to be able to eat aomething over Christmas! Has he put on some weight now?

Enjoy being part of the forum.

Best wishes,
LilyRose

 

[Dexky]

Welcome Mom! I'm glad to hear your son is feeling better and I hope remission lasts a lifetime. Glad to have you aboard! Good luck!

 

[polly13]

Hi there

I have just joined this forum aswell and so far I have gotten great informative and supportive messages from other Moms. My daughter is only diagnosed a short time too so like you we are still coming to terms with the diagnosis.
I hope your son is feeling better soon.
Polly

 

[Catherine]

Hi
I'm the mother of 16 year old with girl diagnoised last wednesday with crohn.
catherine

 

[S mom]

Thanks everyone for the warm welcome. It is really amazing that all of us from all over the world can come together and support eachother in such a caring way. Despite our otherwise quite different circumstances, Crohn's puts us all in the same place... concerned parents who want the best for their kids!
Dusty... thanks for the links, yes, I've been "zooming" around this forum soaking up as much info as I can and have found those two forums on EN and metho. interesting. As far as blood monitoring, they have been regularly checking iron, liver enzymes and CBC. He takes a folic acid supplement due to the methotrexate. Not sure about B12 and D - that was on my list of questions for the GI when we return next month.

LilyRose... yes, 12 weeks of exclusive EN was long and exhausting (for all of us!). It certainly made me realize the large role food plays in our society... everything from birthdays to family get togethers to just sitting around the dinner table talking about the day revolve around food. At times, the social isolation was worse than not eating (although, if you ask my son, that first piece of white bread after not eating for 3 months was the best thing ever- and this past Christmas meal was incredible!!). He gained about 25 pounds while on EN and then since then has gained another 6 or 7:dance: Such a relief!

Now it's just the unpredictability that I'm struggling with... my son, however, as a typical resiliant teenager, is just trucking on... getting back to life (like kids should, I guess :ysmile

Thanks again for the welcome... glad to be here!

 

[Tesscorm]

Hi S Mom,

Welcome to our group but sorry that you have had the need to find us! My son was diagnosed in May, at 16 years old, and his treatment was also EN through NG tube. He did the exclusive EN for 6 weeks and has continued on it (with food added back!) as a maintenance treatment since then.

I'm glad you're son is feeling better and back to all his regular activities; including hockey - my son plays hockey as well! I'm very happy to hear that he is doing well on methotrexate as my son's doctors are considering starting him on this med at some point.

Again, welcome... I'm sure you'll find the members here to be a wonderful source of support and information!

 

[kimmidwife]

Hi S Mom,
Welcome as everyone has said I am sorry about your son's diagnosis. My daughter was on Methotrexate and did really great for almost 2 yrs. She had no side effects at all. At the end of 2yrs however she got a bad flare and it stopped working for her. I would definitely recommend trying it as a maintenance!

 

[Crohn's Mom]

Hi S mom and welcome!

I'm so glad the EN helped put your son into remission and he is doing so well !
Isn't it amazing how much strength and perseverance these kids of ours have
They never cease to amaze me!

I look forward to "seeing" you around the forum ~ It's a wonderful group of such caring parents here, as I'm sure you're begging to see already. You're a nice addition and hope you stick around!

 

[ChampsMom]

Hi S Mom!

Welcome! I agree with you - I'm always amazed to see where we all come from on the list - what a way to be united eh?

Kind of cool to hear there is another Hockey Mom on the Forum! My 15 year old was dx April 2010 with Crohn's and has been playing hockey for years. We were worried it would bench him, but he continues to play.

Look forward to hearing about your son's goodtimes on the ice! You've probably seen the post that talks about our kids successes - so let's here how his team does!!

I pray all continues to go well! (If they haven't done a bone scan, you might ask about it - nice to get a baseline done sooner than later).

 

[S mom]

Hey guys... I'm so glad to have found this forum with such a great supportive group! It's nice to know we're not in this alone.

kimmidwife - thanks for the note about the Methotrexate... I was sorry to hear that it stopped working for your daughter but on the other hand, heartened to hear that it did work for so long. I was really apprehensive about having my son on such a strong drug so fast... but, if it does its job for a while then hopefully it'll give him a chance to grow a little, finish high school... and all that stuff!

And, yes, CrohnsMom, my son never fails to amaze me with the way he's able to handle all of this. He's had to face some big decisions (like whether or not to do EN as a treatment) and he's done it better than some "grown ups" :ysmile:

ChampsMom... I was glad to hear that there are a couple of us on here who's sons play hockey. My son was devastated when he was unable to play at the beginning of the season and as soon as he was feeling better, he started to ask to play. I, of course, was worried about being a "bad mom"... letting my "sick" son play a contact sport (I just want to bubble wrap him right now!). But, he was able to join a house league team part way through the season and he's loving it. I think it reinforces for him that life can be "normal" and that this disease doesn't define him... hooray for hockey :ylol: He said the same thing when he decided to go back to school with the ng tube still in place... he said it made the time pass more quickly and that he felt normal again - and his friends were fantastic - shows you that teenagers have great capacity for support and understanding too!

 

[Tesscorm]

"shows you that teenagers have great capacity for support and understanding too! "

I found the same thing! My son's friends and teammates have been very understanding, my son continues to use the NG tube at night and, during this time, he has had so many sleepovers... his friends are curious to watch him 'insert' the tube, I've heard them ask questions re the how, where, why and all have been supportive. They have changed sleepover plans so that the sleepover can be at our house, etc. I hadn't had any expectations re this side of the illness but it has been great to see.:thumright:

 

[MEGANSMOM]

coping

Does he have joint pain

hi there,
i've been reading this forum for a couple of months now - it's fantastic and i love this section for parents - but i didn't bother to actually join... Well i finally took the plunge tonight and signed up :d
my son was diagnosed with crohn's in sept. 2011 at the age of 16. What a shock, no family history and previously, a pretty healthy kid. In retrospect, i think he had been having flares on and off for at least a few years but we just always passed it off as a stomach bug - he got better and we moved on.
But last march or april, he started losing weight and by may was getting up all night going to the washroom. By june, he was anemic and felt horrible. It took all summer to finally get him in to see the pediatric gi. By the time we got in, he weighed under 100 pounds and could hardly walk. They did scopes within a week and diagnosed him with crohns - all through the large intestine and about a foot into the small.
The next day he started enteral nutrition with an ng tube which he continued for 12 weeks (only clear fluids). He had trouble getting the ng tube in so he just left it in all the time... Within a few weeks, we were able to get all of his feeds in at night so he could disconnect from the pump during the day (and eventually return to school). He finished the en on dec. 15 :sun: And we slowly re-introduced food.
He was also put on methotrexate about a week after starting en. I guess it takes a while to work so the plan was that the en would put him in remission and then by that time the metho would be working and it would maintain him.
So far... All is good. He has been able to learn to inject himself with the methotrexate and does not really complain of any side effects. He goes to the washroom slightly more often than your average guy (i think) but has lots of energy... Is back to playing hockey and now we are just holding our breath hoping that this continues for a good long time!!!
Well, that's our story... I look forward to continuing to read this forum... And now i guess i'll be able to comment too! :emot-waycool:

 

[MEGANSMOM]

Does your son have joint pain or headaches? My daughter is 13 and is having joint pain knees are swollen when she participates in pe.

 

[S mom]

No, he has not complained of any joint pain recently. He was occasionally last summer/fall before he was diagnosed and treated but has been fine now he's more stable and stronger. No problems with headaches but I've seen other parents on here mention that their kids have had problems with this - not sure if these are related to Crohns?
From what I understand, it's not uncommon for joint pain to be a part of the symptoms("extra intestinal manifestations")... I have been keeping an eagle eye out for that. Sounds like something you should maybe let your doctor know about... hate to see growing kids having joint pain... we all want them to feel good - p.e. is supposed to be fun :ysmile:

 

[Tesscorm]

Prior my son's diagnosis in May, my son had had back pain throughout the winter. He had hurt his back once at the gym and then with hockey's constant twists and hits (he would be on the ice 4-7 days per week), we attributed the back pain to his activities. There was no 'spinal' issues and his GP believed it was muscle tightness and suggested that he take ibuprofen's before games to alleviate inflammation. In hindsight, he was probably taking 10-15 ibuprofen's per month.

Until last week, I believed it was his use of ibuprofen that triggered his Crohn's but, at his last GI appointment, his GI mentioned that perhaps his intestinal inflammation may have caused (and triggered) the 'muscular' inflammation in his back (not vice versa). He's had no back pains at all this year, since he's been on treatment for his Crohn's. His GI did refer him to a rheumatologist when he was diagnosed and there was no sign of arthritis.

Not sure if this would work for your daughter's knees but my son used Tiger Balm ointment on his back whenever it hurt and said it helped quite a bit. He would use it before games and then whenever his back hurt.

 

[MEGANSMOM]

okay thank yall so much. all her drs gi rhuem and pediatrician are aware of joint pain. rhumatologist has finally agreed to do humira injections w neg tb test. so we got xrays today and hopefully they will read and send results so we can go forward

 

[S mom]

That's great news - I hope it works for her and she gets back to being active soon!! Good luck!