Any Suggestions?

[kelly78]

My son who is 13 was diagnosed with Crohn's a year ago. In the beginning, he was on many different kinds of medicines and now receives Remicade. Recently we were at the Doctor's and he is doing wonderful! All his tests came back normal. However, He use to be full of energy, wanting to play sports, ride bike, play with friends, laugh, etc. This past summer he started to isolate himself and become angry over the littlest things. He's now seeing a counselor. The anger has subsided, but the not wanting to do anything is still very much there. He doesn't want to go to school, he doesn't talk with his friends, he dropped in his grades, constantly fighting with his brother, not caring about his hygiene, (which he always had to dress nice, wear cologne/deodorant) etc..About a week ago he started complaining of severe stomach cramping. He hasn't been to school since because of the severity of his pain. I had taken him to the Doctor, but all looks normal. His Doctor has set up an appointment for a scope to be done. I'm at a loss and don't know what to do/think/say anymore. If everything appears to be normal, then why the pains? I hate to think at times he is "overreacting" because he wants to be cyber schooled. I do think he feels embarrassed at school if he has to use the bathrooms there or when his stomach does make loud uncontrollable noises, the kids turn and say, "Eww, did you just fart?!" I don't know what to do.....

 

[ronroush7]

I am wondering it he is depressed. I hope things look up.

2

 

[Tesscorm]

This is certainly a tough illness to deal with and especially when you are a teen!

When you say 'tests came back normal', what tests were done? I've read of a number of kids whose bloodwork shows normal levels even when a flare is happening. Were there any other tests done such as imaging (MRE, CT, etc.) or stool tests (fecal calprotectin, lactoferrin)? Hopefully, the scope will be done soon and will give you some answers.

If all is fine with tests, have his vitamin levels been tested? Perhaps he has a vitamin deficiency that is contributing to fatigue and that may be why he does not have an interest in his activities. Anemia can certainly cause fatigue but there may be other deficiencies that could also affect his overall well-being.

As far as pain, is there any chance he has scarring? Scar tissue would not be reflected in blood or stool tests but could be causing pain??

I imagine stress/worry could also be contributing to his sense of wellbeing and maybe even the pain... at school, can you make arrangements for him to use a private washroom. I'm not in the U.S. but have read of U.S. parents arranging for a 504 at school which allows for certain arrangements for their child.

Bubbly 's son is doing much better now but he also went through a tough period of depression, perhaps she'll see this post and will be able to give you some advice.

I'm sure some of the other parents will soon be along, hopefully, with more advice for you.

:ghug: :ghug:

 

[crohnsinct]

I think it is great that you got him into a counselor. Other than Tesscorm's thoughts on the stomach pains and vitamin levels I just wanted to add that vit d and b12 seem to be key in fatigue and depression. Definitely ask about those. I have non IBD friends who were blue and severely fatigued and it was all because of very low d and b12 levels.

When are the scopes scheduled? I would ask for a fecal calprotectin test ahead anyway just so I had some early indication of possible inflammation.

Good Luck.

 

[Clash]

Has he had his vitamin levels checked? Many IBD'ers can have problems with vitamin deficiency since it is absorbed in areas where CD is common. Vitamin B, D, iron, zinc, and magnesium are a few that can affect energy levels. My son's terminal ileum was affected by CD and he was low in Vitamin D which did have an affect on his energy levels.

He was also very active in sports before his symptoms and dx but could not participate when the symptoms started. Fatigue was his main issue as well as joint pain from his CD. He never really went back to sports after we got the symptoms under control. He initially attended a military school but with his disease active and the demands of military school being what they were we decided to move him to a school with a more flexible schedule and it has worked out really well.

This disease does take an emotional toll and the teen years are already filled with ups and downs and hormonal changes so I think the counselor is a great idea. Has he given you any insight as to what he thinks the situation is?

 

[kelly78]

Thank you for all of the input and support. I cannot even imagine how one at any age can deal of this horrible, painful and embarrassing disease. He was diagnosed with Crohn's of the large and small intestines, Microcytic anemia, Lactase deficiency and Hypovitaminosis D. We recently did a full Blood and stool sample for everything possible which all came back normal. He's scheduled for an Endoscopy and Colonoscopy within the next two weeks due to the fact of the severity of the pain in his mid abdominal. It saddens me to see him isolate himself from everything he use to enjoy. He was always an outgoing child, laugh and make others laugh, loves to cook/bake and wants to be a State Police Officer. Children at school even Adults do not understand what he or any other person goes through if one does not have this disease. Last Spring it killed me to watch him on the mound pitching or playing short stop knowing he was in so much pain (I could tell by his movements) when the game was over he would get in the Van and break down and cry because of the severity of his pain. He becomes upset because others size him up. He loves basketball, but yet, doesn't want to play because he thinks he isn't tall enough. I know his growth stopped, but he his back on track. I talk to about everything/anything and I feel he is holding back. As a Mother I'm at a loss. I asked him to attend a support group, but he refuses to go. I know he must have so much anger inside him, because I know I do. The school does have a private bathroom he may use, but he says they can still hear when he goes and he is embarrassed. Before he was diagnosed at a younger age he was having problems and one of his teacher would not allow him to use the bathroom when needed. He had an accident, his teacher (forgive me, but hopefully I will never run into her) actually sent a note him stating, Your child I believe had an accident in class I could smell him, but he did not ask to go to the nurse so he sat in it since the AM. I was IRRATE needless to say! She no longer works at the school. I just feel that he may feel embarrassed or uncomfortable at school or even may not want to go out because if he has the urge to use a bathroom and would be afraid he wouldn't make it in time. But he cannot let this over come him he has to defeat it, but how if I don't understand or know what to do.

 

[Tesscorm]

I'm so sorry you are both struggling so much. There truly can't be anything tougher on a parent than seeing their kids suffer.

I can't believe how thoughtless some teachers can be... I ran into one similar but, as my son was older, he was able to stand his ground a bit better. One suggestion about the bathroom, is that he run the water while he's going to the bathroom. It will help drown out any noise and, if anyone by chance asks about the water, he can easily say that he had to scrub some ink off his hands or something. I've even read on here about some products that can be used to cover up smell... I think Devynn's mom was looking into something....

I encourage you to look into enteral nutrition (EN) for added nutrition (and subsequent growth). There are lots of kids here who are supplementing their diets with these nutritional shakes and they've seen considerable improvement in weight and height. There's no harm from these shakes and they can really be beneficial. Peptamen or peptamen Jr. are commonly used because they are formulated to be more easily absorbed but, if your son finds them unpalatable, Boost and Ensure will do the job as well. My son did exclusive EN (so no food, formula only for six weeks) to induce remission and then stayed on them as a supplement/maintenance treatment for two years (1/2 dose with regular diet added back). When used exclusively, they have comparable success rates at inducing remission as do steroids (with none of the side effects) but, unfortunately, are not as successful at maintaining remission (my son has since started remicade). But, even on remicade and at 19 years old, he still has 1-2 shakes every day. I very much believe the nutrition he's taken in has helped him stay healthy so far. To give you an idea on weight gain, my son was 140-145 before getting sick and was at 120-125 at diagnosis. With three months of starting EN (six weeks exclusive, six weeks supplemental), he gained 30 lbs - of healthy weight (muscular, etc.). In the last two years, he's gained another 15-20 lbs. (He was already tall when diagnosed, so has only grown approx 1-2 inches - to be expected at his age/height.)

Here's a link to some info on EN - http://www.crohnsforum.com/showthread.php?t=36345

There are a number of parents with boys approximately your son's age, hopefully, some can help you with how to help him adjust to his diagnosis. I know when my son was diagnosed (almost 17), I was constantly asking him how he was, if everything was okay, everytime he went to the bathroom, I'd be there asking how it looked, etc., etc. At a certain point, I could see I was becoming a pest to him... I finally made him a deal that I would stop asking if he promised to tell me if there was anything I should know. This has worked for us. However, having said that, I do still periodically (okay, maybe, often! :ybatty ask him! But, I also regularly speak of crohns but always very matter-of-factly, almost in passing... ie remind him to drink his shakes because nutrition is important, mention that we need to schedule his flu vaccine in accordance with his remicade, hygiene reminders due to suppressed immune system, etc. - I hope that I've conveyed to him that, while it will always be a factor in his life, it can be a 'matter of fact', 'life goes on' situation and that I will take any comments from him in the same manner (ie I won't get too emotional on him). I hope that makes sense (I certainly don't mean to belittle the impact that pain or certain symptoms can invoke!). But, it definitely is a tightrope when dealing with teens at the best of times, let alone when they must deal with something like crohns!

Have you heard of Camp Oasis (someone correct me if that's the wrong name) - it's a camp run for kids with IBD. A number of kids here have attended and I've only heard good things! It may help him to meet other kids who have similar struggles. I'm sure some of the parents will chime in about Camp Oasis.

I hope some of this helps! :ghug: And that you get some answers from the scope!!

 

[kelly78]

*Tears* I appreciate all of your support, thoughts and caring advice. The shakes are something I am going to look for. It has been a struggle to switch the foods he use to enjoy to "healthier" foods. I think it is important to sit at the dinner table every night so we can all talk about our day since we do have busy schedules, but one of my rules have been you must have a vegetable on your plate, well, he now thinks it's funny because he has Doctor's orders that some may cause pain due to roughage. lol I am going to check out the camp, and try again about attending a support group of his age. I think it'll do him good to see there are many children of his age out there with this god awful disease. It's been a roller coaster of emotions and will always be a struggle, but doesn't mean it has to overcome your life. Thank you all again for your advice, stories and caring thoughts.

 

[Tesscorm]

My son has always been a picky eater and fruits/veggies were always WAY down on the list of foods he'd ever want to eat! :lol: So, yes, my son has also taken advantage of that aspect of crohns! But, while he was on the full supplemental EN (opposed to just the one or two shakes now), I didn't really worry because I knew he was getting the necessary nutrition (to be honest, I think it was the healthiest diet he'd ever eaten!).

Good luck!!

 

[Jmrogers4]

Welcome Kelly,
My son is 14 and was diagnosed at 10, hopefully I can chime in with a little more info since our sons are closer in age.
The running water is a good idea and the product Tess was talking about is called poo-pouri and it works incredibly well and the video is absolutely hilarious it had Jack in tears. It is available in a little pocket size sprayers. Here is the link. http://www.poopourri.com/
I can't not say enough wonderful things about Camp Oasis, Jack went for the first time shortly after diagnosis and it really was a different kid who came back. He came back in control and didn't feel alone. He keeps in contact with a lot of these kids from camp and especially if one of them is having troubles they are really there for each other as in their words "no one else gets it". Sometimes by facebook, sometimes by text. Mostly by xbox (they are teenage boys after all). As they are playing games they joke with each other about medicines, bathrooms, etc.
We just finished a 6 week course of EEN (shakes only) but we have done supplemental EN and it was great. Jack gained 23lbs in about 8 weeks. He is 5'1" and went from 77lbs to 100lbs. He dropped to about 97 once we dropped the shakes the first time but it was a healthy weight and he looked great.
He continues to drink about 4-6 shakes a day right now since we had a flare at the start of school and he dropped a bunch of weight. We seem to have gotten the flare under control by doing the 6 weeks of EEN and now are just working on the weight gain again. He is back up to 93lbs.
Jack has always been a "veggie eater" He loves veggies and the first dietician we went to told him to eat his veggies last (as he would fill up on them and not eat anything else). I will never forget we went to a nice steak house and the people around staring when Jack was begging "Can I please eat my veggies now, look I ate 1/2 my steak"

 

[Jenn]

Welcome and sorry to hear about your soon. It could be Remicade is failing, or it could be him going through puberty is exacerbating things. Hopefully his doctor will help him out quickly. Does he have a 504 plan?

He may find some support at the CCFA teen site: http://www.ucandcrohns.org/

 

[Sudsy]

What about a support group?

PA is a big state , so I couldn't look up one exactly near you, but here is the link to the CCFA support group page: http://www.ccfa.org/living-with-crohns-colitis/find-a-support-group/

My dd and I are planning to drive an hour (on a school night [oy]) b/c she so desperately wants to be with other people who have Crohn's and "understand" and the nearest kids/teen support group is rather far from our house.

Also: how is it working with his therapist? Does he like him/her? We made sure to get our kids in to see therapists who work at the local children's hospital in the "Medical Coping" department. They are really experts at how to help kids through this kind of rotten stuff.

Hang in there. I hope your son is better soon.

 

[my little penguin]

ALso a 504 would be helpful.
DS can use the nurse's bathroom or teachers bathroom so no worries about sounds or nosies.
he has a pass he sets on the desk so the teacher knows he is either in the bathroom or at the nurse. He doesn't have to ask or draw attention to himself.

Third the EN.
DS gained 20 pounds and grew over 5 1/2 inches since dx when all growth had stopped before.
He drinks peptamen jr. with prebio.
WE keep his diet to whatever he wants to eat (except beans, raw veggies, seeds, nuts, and popcorn).
otherwise it 's just too hard for them as kids.
shakes go in and i don't worry.
therapy is a good thing especially medical coping docs
hugs

 

[Mehita]

I'm just going to second what the others have said about having a 504 plan for school. It might help him emotionally just knowing he has certain accommodations.

Has a fecal calprotectin been done?

 

[kelly78]

Again, I can't thank everyone enough for your thoughts and caring advice. It has been emotionally, mentally and physically draining for the both of us. I've tried to reach out to friends and family, but it's hard when they don't understand. I've read so many stories on here which breaks my heart, but yet, warms my heart knowing that many have reached out to let us know they support us, their caring words of advice or their warm thoughts of understanding. I have looked into the shakes and that is something we will be trying. Also, I've spoken to the school and they will do everything in their power to work with him no matter what it may be. *Sigh of relief*
Depression is something we are working on too. When your child use to be filled with laughter, outgoing, loved sports and an all around normal teenager to a mind filled with fears, and sadness. Only wanting to stay in a room to isolate himself from others. It saddens me to see this go on.
We seen his psychologist today, which went well, but still a long road to continue.
I think Camp Oasis would be a fantastic idea. He really needs to be around others who understands what he goes through, and he wouldn't feel as if they're looking at him differently with this disgusting disease. I've told him to make a list of the things he use to enjoy and things that triggers his sadness/anger so we can talk about it and see what we can do to fix it. At 13 he has a long road ahead of him and if we cannot fix this now it'll be a dark and lonely world he will live in. Teen suicide is high and I will not sit back and watch my child fall deeper and deeper into a hole for which he will not come out of. This disease will not defeat him!
With so many of you that have reached out I now can learn, don't feel so overwhelmed and lost. I know it isn't all peaches and cream, but I at least can now turn to someone who understands.

 

[Jmrogers4]

Big Squishy Hugs Kelly!

 

[greypup]

Our daughter was going thru some very emotional times a number of years ago and was also isolated and depressed.

With lots of help and encouragement from her school, we decided to home-school her for 1/2 a semester. I was very overwhelmed and couldn't begin to process having to go so far. Today, looking back, I have no regrets at all. She felt safe and supported and continued her academics very well, much better than she had she stayed in school stressed out.

She, unfortunately, was dx'd w/crohn's a year later and had to miss school again because she was critically ill for months. Again, she stayed home for months and with the support of school they allowed her to take classes pass/fail. She's in her junior year today (when grades count for college applications). She is a strong student with a core group of friends that understand and support her. She is doing very well.

While I hate that she has had it hard, I have no regrets about taking alternative routes. We also have had great therapists that we have worked with to help with all of it.

You will figure out what is best and keep in mind, it's okay to change that up if you need to.

 

[Brian'sMom]

My son is 13...Its a hard age for boys, especially when they aren't growing like the other boys. And I know the pain and embarrassment of this disease can be unbearable. It sounds like he has a good support in you and you are doing lots to help him. My son also has had kids tease while in the bathroom at school. Even peeking in to see 'who is making all the noise'. My son started waiting and going during class. His 504 allows this and then he is in there by himself instead of during passing periods. I hope things get better soon. (Also, I second checking the vitamin deficiency stuff...vit D, etc)