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Crohn's Disease Forum » Parents of Kids with IBD » Helping my son too much


 
08-04-2014, 12:02 AM   #1
lenny
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Helping my son too much

My son is 17. When he wakes up I bring him breakfast, usually yogurt or a smoothie. A couple of hours later, I bring him whichever one he didn't have yet. I prepare and serve lunch, dinner and snacks throughout the day.

When I sit down to eat my lunch or dinner, he will often ask for a glass of water or something else and it's driving me crazy.

Late at night, he will ask for a snack or water or he will want to talk about some concern and I feel like I'm never off duty, never done for the day..unless I go to my bedroom.

It reminds me of having a newborn baby again.

Yet, if I don't bring him food, he won't eat. He says he's too tired to serve himself and he'll just sit there or read or whatever and he is very underweight.

I make scd microwavable dinners, so he can just pop them into the oven whenever he gets hungry, but he usually asks me to heat them up and bring them to him.

I know he doesn't have a lot of energy, but he'll go for a walk or play with the dog and then plop down in a chair and ask me to get him food.

Just now, he said, "I wish I had some apple juice." I told him that he did have apple juice in the fridge, but he's not moving...

08-04-2014, 06:32 AM   #2
my little penguin
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Couple of things
Has he been considered in remission until recently then his weight should be normal as well... If not then that is concerning since scd is known for having issues with kids being able to keep up their weight.
Same with fatigue /lack of appetite /nausea not wanting to eat
If the treatment is working he should be eating you out of house and home .
My kiddo gain 36 lbs once he stabilized and hasn't stopped since .

As far as getting things for him - are you home twenty four seven( not working outside of the home )?
It is very easy to get in the do it for them when they are sick and the weight stages are so high...
What does he do if you leave for the day ?
Maybe run errands visit a few friends etc.. A couple days a week
Therefore if your not around to ask is much different then mom can just get it because I don't want to be bothered.

The goal of maintence meds is to give a normal quailty of life not just reduce inflammation so if he has no energy /appetite / and is below normal weight - that is really a red flag.


In the past it was thought to be "ok" for a crohn's patient to be underweight.
Especially kids - that thinking has changed since with the right treatment our children can function just like all the others .

These are questions I would try to ask the Gi ...since we did have issues when DS was first dx and not under control
( again not a doc just a mom so ask your doc about any changes etc...)
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08-04-2014, 06:48 AM   #3
xmdmom
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I hear you! I'm a mom of a 21 year old who has Crohn's and another disability. When he was at home he expected me to do everything. Now he lives away and he's managing. Yes he's tired from the Crohn's but he can do a lot more when he wants to! It can be very difficult to sort out what is from the Crohn's and what is something else.

Was your son taking care of himself more before he got sick (or before he felt sick again recently)? Or is this always how he's acted? How does he act when he's with his peers?


HUGS
08-04-2014, 06:52 AM   #4
Farmwife
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Hugs I think a lot of us have dealt with.

Mlp is right about finding the root cause.
Remember the mental aspect of this disease can be as harsh as the physical problems. No shame in having to talk to a trained therapist if needed. These kids go though more then we even know.

It also comes down to personality.
My boy would be more than happy to be waited on but Grace is so independent that even ill she'll crawl to get what she wants.
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08-04-2014, 07:39 AM   #5
DJW
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I hope its alright to chime in as someone who has had crohns since I was young. Right from my pediatric GI. Its very important to do things for yourself. Even if its only a walk to the kitchen for a glass of water. At my sickest in the hospital the doctor expected my to walk everyday.

If you can get up to use the washroom you can get a snack. That advice has served me well.
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08-04-2014, 09:08 AM   #6
SupportiveMom
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DJW you are right. It is hard as a parent sometimes not to take care of our kids especially when they are vulnerable. I have fallen into this trap when my kid was in the most active parts of her crohns. The hardest thing for me was to stop helping her so much & make her do it herself. I still slip from time to time, but I keep remembering the same thing your GI told you as our GI told us the same thing.

We did see a therapist and it helped us as a family deal better with the dynamic that changed after the diagnosis. It may help you & your son too Lenny. One of the best things to hear out of my kid was she was tired of starting the "How was your day " conversation with how many bathroom trips did you take? or did you have bloody stool today? She felt I was only focused on her disease and not the totality of who she was. I stopped having conversations that weren't related to the crohn's & I never realized it until she said something.
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08-04-2014, 09:52 AM   #7
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Lenny,
I think you need to be up front with him and say I know you are sick and you are not feeling well but you are not an incapable person and you need to take care of yourself. I am afraid we tend to spoil them when they are feeling very sick and sometimes bad habits can be started. Wishing you luck with this!
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New secondary diagnosis: Gastroporesis Dec 2013
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08-04-2014, 11:45 AM   #8
valleysangel92
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I hope you don't mind me chipping in as a 21 year old that still lives at home. I've had health issues since I was around 12, it started with other things and I developed crohns symptoms at age 15.

My parents both work full time, my mum works in a school and dad delivers and installs medical supplies.

This means that most days I have no choice but to get my own breakfast and lunch and drinks, if I don't then I don't eat or drink and I can't take my meds. Mum gets the same holidays as school kids, so there are times where we are home together and she will offer to do me lunch etc, but I don't always say yes. Sometimes, if I'm in a lot of pain then I will, or if there's something special I want (mums cooking is always better ) , but I still do most of it for myself. I do my own laundry, it's my responsibility to know when my medical appointments are and a lot of the time I get myself to them because my parents can't constantly take the time off. It's up to me to know when my medications are running low and put in my repeat or make myself a GP appointment to get it represcribed. My parents have always encouraged me to be as in charge of my health as possible, they've always provided support, but they've also always maintained that it's my body and my illness so in the end Im the one that needs to know what I'm doing and why.

I know it can be scary to give us more to do or more responsibility, but I agree with what someone else said about leaving the house a few days a week and seeing what he does. He will have to live on his own one day, especially if he plans to go to college, so he needs to learn his limitations now. At the moment, I do what I can, mum or dad cook evening meals, and that's just how it's always been because we all eat together, but there have been times where I've stayed at home when they've gone away and I've stayed by myself or with my boyfriend and I've always managed fine.

Like I said, I know it's hard especially when we are sick, and I know my own mum will do more for me when she knows I'm struggling, but because I have to do it when they aren't here, I actually prefer to try things when they are and see what I can and can't do for myself, that way I don't over push myself when I'm alone and don't have help available. Be honest with your son and tell him he needs to try and do a little more for himself, let him know that you are there for him and if there's something he really can't do (like cook a full evening meal from scratch) then you can help him, but that he has to at least be willing to get his own drinks and lunch, and that he can get his own snacks too. Maybe also ask him why he thinks he can't do these things, is he scared he'll get worse? Does he think if he starts doing small things he will have to do everything? This condition has a massive emotional toll and it might be effecting how he thinks and even what he thinks he is actually capable of.
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08-04-2014, 11:49 AM   #9
lenny
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I am pretty much always home. I work from home on my computer and my schedule is very flexible. Yet, when I do leave to run errands or whatever, I find his food still sitting in the fridge when I return. He'd rather lay in bed for hours and try to fall back to sleep when he's hungry than walk 20 feet to the fridge. It's hard to know how hard another person is trying, but he doesn't appear to be pushing himself very much. And when things aren't going well or a new problem pops up, he lashes out. My former sweet son can be very critical. I don't cook the right food, the right way, there's not enough variety, is weirded out by new foods..has asked me if there is anything "weird" in his food SEVERAL times.

He went to a therapist every week for about a year and I saw zero improvement.

Yes, his behavior bothers me. But, my main concern is the person he is becoming.
Very needy.

He's even told me that I don't take good enough care of him and thinks that I should hire someone!
08-04-2014, 12:01 PM   #10
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My son isn't in remission although he is asymptomatic. His only outward signs is his inability to gain or maintain weight without EN. He also has another condition, spondylarthropathy but is coping fairly well.

When he was at his sickest and spent all day in bed, I handled all his meals and snacks, drinks etc. It was hard for both of us to break that habit once he was feeling better. It came down to him knowing that in the not too distant future he would be at college and responsible for meds, cooking, health etc. After a discussion and promoting things started to change. So, now other than his supper he is usually in charge of his own meals, snacks etc as well as meds and EN.

He may be having surgery soon and so there will be a recovery phase that may require more help from me. But like valleysangel, he has grown independent so it may seem more of a hindrance than help to him.

C is 17 too and understanding his illness and the role he must play in it has went a long way toward him striving for independence.

Good luck.
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08-04-2014, 12:03 PM   #11
lenny
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He went from 80 lbs to 121 in about a year, but now he's at 115 and not in remission anymore.
08-04-2014, 12:07 PM   #12
Maya142
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Sending hugs!
I know my daughters both get more cranky and hard to deal with when they're in pain. When they're in remission, they're like different people!

My younger daughter (who has IBD and AS) sees a psychologist and we have found it SO helpful! It did take a while to find a psychologist that was a good fit - she sees the one in the IBD clinic who has plenty of experience with kids with IBD. It helps her see things in perspective and then I find that she doesn't lash out, even when she's in a lot of pain and feeling terrible.

Meeting other kids/teens with chronic illnesses has also really helped - that way she doesn't feel so isolated. I guess what I'm trying to say is your son's behavior and neediness may be stemming from other issues.

Another thing we have done is that since both girls are sick, nobody is exempt from chores (unless they're REALLY sick). I just give them stuff I know they can do - if they have sore joints, they won't be taking out the trash or unloading the dishwasher but they can fold the laundry or set the table. They're going to have to do these things for themselves in college anyway.

It's so hard! Good luck!
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08-04-2014, 12:14 PM   #13
lenny
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The thing is, I know that I am doing it wrong. I just don't know how to change things when he lets himself starve. It's like his will to live is almost non-existant.

He's not in much pain at all. He's just weak and mentally very unmotivated. I don't know how to make him care.

Before he got sick, he was a bit of a slacker, but this is ridiculous.

One thing he does is wait too long between meals. Say he eats chicken and carrots and noon, I will ask if he wants something at 3, he'll say no, that he's not hungry, but then at 430 he'll ask me for something because he's too weak to get it himself. When he's not too weak, he's not hungry and when he is hungry, he is too weak!
08-04-2014, 12:29 PM   #14
Maya142
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If you talk to him and tell him you're going to stop doing xyz, then eventually he will get hungry enough that he will take charge. I wouldn't stop doing everything at once - for example, if you are cooking for him, keep cooking, but refuse to get him stuff from the fridge.

After a couple of days of being hungry, he's going to get sick of it. He may lose a couple of pounds but he'll gain them back.

Keep in mind though, many people deal with fatigue when they are flaring. I know my daughter finds that sometimes the fatigue is harder to deal with than the pain. However, walking 20 feet to fridge is really not too much to ask!
HUGS
08-04-2014, 01:39 PM   #15
lenny
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When he woke up today, the first thing he did was grab the dog. The second thing he did was say that he needed an FCP test every day. I told him that was impossible and that we were lucky that our insurance paid for them at all. I also told him that I wouldn't be waiting on him anymore.

He got really angry and said that he'd lay in bed and die and then he purposefully poured smoothie all over the rug and stormed out of the room. It's going to take me hours to clean up!
08-04-2014, 01:46 PM   #16
DJW
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Sorry to hear that. Remember it is for his own good. If he's to have a life where this disease doesn't control him this is part of it. Somethings you can't just get by reading. It needs to be lived.

And NO - it isn't easy. I feel for you.

Would he be open to getting counseling? I believe their are multiple people required on our health team. Doctors, specialist, surgeons, nutritionist, and therapist to help with the emotional side.
08-04-2014, 02:03 PM   #17
lenny
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He went to a therapist for a year. She did not appear to help him at all. Getting to the appointments on time was super stressful for me. He was consitently 10 minutes late leaving the house. His appointment time was 4, then it was changed to 5 and he still couldn't get ready on time.

I am so mad at him right now I can hardly stand it! It's hard to take care of him with his insults etc, but now he's resorted to purposefully destroying the house.

The only acceptable answer would have been, "Okay, I will use our retirement savings to get you a FCP every day."
08-04-2014, 02:38 PM   #18
xmdmom
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Is he depressed? He sounds pretty irritable.

I definitely wouldn't give up on therapy just because one therapist didn't work. There are different kinds of therapy and different quality therapists and sometimes it takes trying a few before getting one that an individual likes and can connect with.

Was he asking for the FCP because he's worried?Will he talk to you about what he feeling/fearing?

Sending more hugs your way!
08-04-2014, 03:53 PM   #19
lenny
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I'd say yes, he is situationally depressed. He was on antidepressants for a month then went off of them without my or anyone's knowledge. The next time I took him to the psychiatrist's, he refused to get out of the car. "I just can't handle it right now."

He expects us to pay the fines for missed appointments without blinking an eye, I guess.
People need to understand, he's sick, he can't make most appointments (is his perspective).

Separately, he saw a therapist every week. And he liked her. SHE wasn't the problem.

He wants the FCP done every day, as a way to monitor how much inflamation he has and see what food is causing it. He can't be bothered to keep a food diary and honestly, he seems pretty much the same no matter what he eats. Never good, never really bad.

He helped me clean up the smoothie, but he isn't speaking to me.
08-04-2014, 04:08 PM   #20
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I'm not sure FCP works that way. Does it even change, day to day?

He does sound really depressed. When my older daughter was in this situation (she missed her first semester of college and was distraught), we pointed out to her she wasn't going to get better until she saw her therapist regularly and went to her appointments (on time!).

After a lot of arguing, she eventually bought it (her psychologist also talked to her about it)and started doing all the things she was supposed to. Seeing a therapist regularly helped her deal with everything that was going on. When she missed one appointment, we told her that expected her to pay the fine. After that, she didn't miss a single one.

Once she figured out that while getting her better and back to school was a team effort, she was the most important part of the team, she cooperated and did get well enough to go back to school.

Don't give up! If your son likes his therapist and is comfortable with her, he should keep seeing her. Sometimes kids listen better if they hear whatever it is from someone other than Mom. You can also talk to his therapist separately which is what I would do - tell her what I thought the issues were and then she would spend most of the appointment speaking to my daughter, alone. That way, she focused on what the problem really was (my daughter tended to tell her everything was "fine").
08-04-2014, 05:02 PM   #21
my little penguin
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Second the therapist .
We speak on the phone prior to the appt so key issues we are seeing gets covered.
As far as food - for most with crohn's it really isn't a food per say just the right meds.
If he is not eating or wiling to stick to scd ( sometimes it is too hard for some ) it might be worth explaining how things really are to the Gi.
Especially since 80 lbs is very underweight and 115 is not that much better for a 17.
I am not sure what his bmi is but ideally it should be at least 18 for someone with crohn's to give a cushion for flares .
DS is only ten and weighs 86 lbs .

We were told by the Gi to decide if we wanted a "sick" kid or a kid who happened to have crohn's.
We chose the later and put strict rules in place in the beginning .
He had to attend school unless he had a fever /extreme diarrhea or multiple vomiting .
Anything else he had to go - could sleep in the classroom or nurses office but that was it
Same with swim practice - he had to go even if just one toe toiched the water only once ( which it did a lot in the beginning ).
Everyone needs normal .
Rest and breaks as needed are ok but crohn's can't be an excuse .
Or arthritis in his case .
08-04-2014, 05:35 PM   #22
lenny
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My son is taking a break from therapy, I don't think he's quit. But, I can't really make him do anything. He will soon be 18 and he doesn't fear me, not sure how much he respects me. He is usually nice to me, but if I give him bad news like, no you can't have an FCP done everyday, he gets mad and says really hurtful things to me. I mean crushing.

He follows the scd perfectly, but he just doesn't eat enough. He wastes a lot of food.
But, he sees the problem with the food. I see it as simply a lack of appetite. He will never tell me what he WANTS to eat because he's not interested in food. Eating (anything) is work.

And NO ONE takes his low weight seriously enough IMO. He dresses in layers and he looks like a normal 15 year old (though he's 17). He was 4" shorter when he weighed 80, so now *80 would be 100.
08-04-2014, 05:50 PM   #23
my little penguin
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I don't have crohn's but did have to do an extremely limited diet when nursing DS ( no dairy , eggs etc...) I did that for almost a year without feeling crummy from crohn's .
Avoiding foods you love can be depressing all in its own right .
Especially if its more than one thing .
Food is a large part of our society and socialization
Add in pain of the disease well...
I don't think it matters whether he is not eating due crohn's symptoms or plain doesn't want to eat - they key is to getting him feeling better as quickly as possible so he will want to eat .
DS barely ate for a long long time weighed 50 lbs .
Pulling foods did not help him want to eat more or stop his symtpoms only the right meds did .
We tried it all .
Wish it was easier for him
08-04-2014, 07:12 PM   #24
lenny
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My son has never been that into food and he actually likes a lot of the new foods better than he liked the old ones. He used to love tofu chicken nuggets, but he told me the ones I make now, with real chicken are even better. And he will enjoy eating several, but not like a teenage boy should. He'll eat like 5. I know that he misses ice cream and pasta, a lot! I know it's all so hard on him, but when lashes out, he weakens me and I'm not as good a care giver as I could be, so he is hurting himself.

Many children do well on the SCD and my son's new doctor definitely believes it works for some people and he thinks it has helped my son, just probably not enough. I'm thinking about omitting dairy and see if that helps my son as a last ditch effort to avoid meds that will otherwise begin at the end of the month.
08-04-2014, 07:27 PM   #25
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This is a tough part of being a parent of a kid with a disease. It is hard and I hope this stage passes for you all soon. During a hospital visit my kid called me a nasty expletive for the first (& thank God last) time. We had been there for two weeks (I stay with her in the hospital) and when she said it, it took everything in me not to pack up and go home. Teenagers are already tough enough to deal with without adding this to the mix. Sending you lots of support and understanding.
08-04-2014, 10:12 PM   #26
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Sorry to hear all you are going through. Like xmdmom asked, is this a new behaviour in your son since he has been sick? Was he very independent prior to becoming ill? That might shed some light on if it's the illness causing the behaviour. Take care!
08-04-2014, 10:18 PM   #27
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This is a tough part of being a parent of a kid with a disease. It is hard and I hope this stage passes for you all soon. During a hospital visit my kid called me a nasty expletive for the first (& thank God last) time. We had been there for two weeks (I stay with her in the hospital) and when she said it, it took everything in me not to pack up and go home. Teenagers are already tough enough to deal with without adding this to the mix. Sending you lots of support and understanding.
Agreed. I had a lot typed, but didnt want to come off as negative. In the OP's case, I feel like a little tough love is in order. Hoping he learn respect, and finds motivation. Sending support!
08-05-2014, 05:28 AM   #28
lenny
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Sorry to hear all you are going through. Like xmdmom asked, is this a new behaviour in your son since he has been sick? Was he very independent prior to becoming ill? That might shed some light on if it's the illness causing the behaviour. Take care!
Before he was sick, he was a sweet, easy child to be around and he generally got his own snacks and drinks.

I'm still going to serve breakfast, lunch and dinner, but I'm not going to be at his beck and call between meals. I'm not going to bring him water.

Today went pretty well after things calmed down. He got his own food all day and then I brought him dinner. His mood was surprisingly upbeat.

Thank you everyone for listening and understanding!
08-05-2014, 07:24 AM   #29
CrohnsKidMom
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Well, it seems then that his behaviour is a result of his illness, and not something that's been an issue for longer than that. I would talk to the GI about what your son can and cannot do, his restrictions, if any, etc. I would also get that counselling going again. Having said that, he may be using his illness to manipulate you into doing what he wants, when he wants it. No doubt he knows you're worried about him and he's using that to his advantage. Like you said, do what is reasonable to care for him, but he should not be treating you like a servant, or worse. I would remind him he needs to take some responsibility for his own health care-like eating when he should. When he can do something for himself, he should. When he can't, he needs to be respectful of you (like waiting until you can help, and using manners. He certainly shouldn't be having tantrums and pouring smoothie on the floor.) I hope I'm not sounding harsh. This is only my opinion, and patience has never been a strong point for me! Good luck!
08-05-2014, 09:36 AM   #30
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Hard situation to be in for both of you. It certainly sounds like he resents that he has crohns and is lashing out. Parents are the easiest to lash out at as kids 'know' we will always be there. And, very hard to discipline when you so feel sorry that they are dealing with an illness and you are worried about their health! Ugghh... You're doing a great job, it's definitely hard to find the right balance.

He's obviously concerned about his illness and it's status as he's asking for FCP testing, can you try talking to him about the impact of his actions on his illness?? ie laying down most of the time will only further weaken his muscles and cause greater fatigue, not eating meals and getting the proper nutrition will also weaken his health. When my son has slacked off in diet, supplements, etc., I've told him as much as it will kill me to see him in pain, at the end of the day, HE will be the one feeling the pain... it may break my heart to see him struggle but it is HIS life/success that will suffer... I'm 'old' and have lived my life, if he ignores what his body needs, it will be his life that will be affected. I've certainly acknowledged that it's unfair that he has this burden but, life's not fair. And I've reminded him that he (like everyone) also has certain strengths/advantages that others don't have...

Certainly not saying that I don't spoil him a bit too and tend to 'excuse' him out of chores more often than I should but... I think, within reason.

You mention starting meds at the end of the month... is he not on any treatment? My son is definitely way more cranky when he's not feeling well. Hopefully, a new treatment will make a big difference in how your son is feeling, both physically and emotionally.

Has he been tested for vitamin/mineral deficiencies? This could also be affecting his emotions. I'm not sure about all the vitamins/minerals and which could have an impact but, I know when I was once fairly low in iron, I was the crankiest person around! Once I was better, my husband even mentioned that he didn't know what had happened to me, that I was actually 'mean' at times... Being low in iron can also cause fatigue...

Lots of hugs, it's not an easy situation for a parent...

Going to tag Dusty as well as I remember her mentioning that her daughter went through a bit of a tough (emotionally/rebellious) time as well...
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
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Crohn's Disease Forum » Parents of Kids with IBD » Helping my son too much
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