How would you handle this? My son with Crohn's disease

Mitzvahmom

Thu, Dec 30 2010, 1:14 am

My son, this year, has lost his drive in school.

He does not have incredible teachers like he did in years before, you know the ones that really try to bring quiet students out of their shell.

I spoke with his Rebbe this year, whom I have heard from other parents is not so great (many have complained yet he's still there year after year). I asked him, how is my son doing. He responded, "he's in his own world most of the time so I am not sure." I asked if he had tried to speak with my son, and he shrugged (which is the complaint other parents had about this teacher).

The english principle called me the other day and said that my son is very quiet in class.

Because of his crohn's disease he's afraid to put himself out there, lest he could be rejected or wrong. He does not like to get things wrong, and feels disheartened when he does...

I worry that his fine motor skills are lacking because his hand muscles seem weak like most of his body muscles. He does not have energy, like regular boy.. I am working on getting him occupational therapy, but I am feeling at a loss..

Currently he's lacking in multiplication tables (6+) and grammar. I have started him on some computer programs, but even that is a stretch to get him to do two a night... He loves to read, but hates to write because his handwriting is horrible (back to the need to work on fine motor skills).

He just does not have a drive like he had last year, love of school seems to have faded.. I asked if he wants to switch Rabbis, but he loves this Rabbi because he makes good hot coco...

sneakermom

Thu, Dec 30 2010, 8:00 am

It sounds like your son really really could use OT. His weak muscle tone makes him lethargic and probably make him a bit dreamy. He might also be on the adhd - inattentive type. Basically the kind of kid more prone to daydream, has trouble focusing, and organizing thought and stuff.

But he does sound bright. Encourage him to do the things he likes. If it's building, reading...whatever it is. I think a tutor that specializes in teaching kids focusing and organizing skills would be really important. It will force his brain to focus more, and dream less.

Basically I would focus on the following. Building his muscles....exercising, running in the park, swimming etc. I would absolutely get him a very good OT. He must strengthen his fine and gross motor skills. I would get him a tutor that specializes in training kids to focus and organize. I would encourage him to do the things he is good at. I would also hold him, massage him, talk to him as much as I could. One more thing...I would give him chores in the house. This would give him a sense of accomplishment that comes from real work. Would force him to come out of his own world a bit. But it will take work on your part being consistent and overseeing that it gets done.

Hatzlachah!

freidasima

Thu, Dec 30 2010, 8:16 am

Is he on medications for Crohns? What is he taking? Could that be making him lethargic? Also how is his absorption, that could explain the weakness etc. He has to try and build himself up physically, no other way, with whatever his body will absorb and doing physical exercise. You have to push him and explain that he has a choice. The Ribono Shel Olam gave him a chronic illness that isn't going to go away, if he is lucky he will have long periods of remission when he will be able to function and he has to prepare himself to function during those periods. It's up to him whether he will push himself to have a normal life, or whether he will just sit in the sidelines waiting for the next attack.

Is he getting psychological counseling? Children with Crohns definitely can use that, with a specialist that deals with autoimmune or chronic illnesses. That may make a difference.

And don't knock good hot chocolate. Sometimes kids with chronic illnesses need a "time off" period from the world. And maybe this rebbe is giving it to him by not pushing. Get him the help he needs to catch up in school and give him pep talks while also getting him couseling.

amother

Thu, Dec 30 2010, 9:03 am

You're saying your son is the very closed, quiet type, that seems to me like the cause of the crohns, its said that a person keeping things, that bother a person, in, causes physical health issues, to each person it brakes out in different ways, he must be keeping things, that bother him, in his stomach. The best thing would be to take him to someone to teach him to open up, get rid of things that have bothered him for a long time. most people (or everyone) don't even know that things bother them, or don't even remember things that happened, but its still in there, somewhere deep. And by going "back there" and healing those "sores" it can do wonders. Besides the fact that crohns can also be healed naturally.

sneakermom

Thu, Dec 30 2010, 9:21 am

I think an important question is how bad is the crohns? Is it under control right now? Did he ever need invasive medical treatment that could have traumatized him? Is he never sure when he's going to have his next flare up?

I have a sibling with crohns. It didn't flare up until the late teenage years and surgery was needed to take out part of the infected intensitine. Since then there has been no flare ups for years. And it doesn't affect the siblings daily life at all.

If you feel that the crohns is what's causing him to be out of it and quiet then I would recommend play therapy by someone really good to reach out to him, give him a safe place to work through his feelings and offer him support.

Mitzvahmom

Thu, Dec 30 2010, 1:16 pm

He is taking methotrexate, it's an injection once a week. He does not like it at all, but since being on it. Flare ups have been nonexistent B"H.

He's what I call my endless pit, because he is constantly nibbling on things...

Physical activity, that is not easy when it comes to my son. He is fairly resistant to any form of physical activity, because he's worried he could fall or he could get hungry or thirsty (yes I do prepare food to bring with but it's never enough). He does not like going to the hospital. He had to get blood work pretty much weekly or biweekly, because it took a while to find the right medication.

He does hold things in, and we have tried therapy but have yet to find a good one he connects to. I am in touch with the local crohns group, and they are working on a mentor for him.

Sadly when it coms to OT, u have to wait for insurance approval... the only physical activity he enjoys is swimming, and honestly that's not easy to set up in the winter, even in california!

He cannot handle it when anyone becomes upset with him.. His flared, or so we think, because my ex was abusive and he watched... We went to therapy and he cried that he was sad he could not protect me or his sister. Therapist said it's time to let him heal, and just let him be a kid. I try, but sadly, the class he's in at his school is considered the worst in the school. Teachers scream at the kids to behave, and he shuts down. I had to pull him out of english 2 years ago, because the teacher screamed all day and my son ended up in the hospital out of the stress. I told him he has to tell me these things, and B"H he has communicated since then and we have worked on issues here and there. I asked him if he wants to switch schools, and maybe the boys will be nicer and less chaotic. He said no, I am a lubavitcher and I want to go to a lubavitch school. I love my Rebbe. I want him to be happy...

amother

Thu, Dec 30 2010, 1:40 pm

Just a pity that people would go through medical treatment, surgery.......for the rest of their life, rather than treating such things naturally and be over with it.
My sister has crohns, its almost all gone, she had a very hard few years being on a special diet, taking some natural things her chiropractor (or whatever he's called) gave her, b"h she can slowly start eating all the foods and the actual disease is gone. Where as I know of someone else with crohns, for years and years she suffering, in and out of hospitals getting flareups, surgery (half her intestines are missing already) and she's still suffering........why?!........its just soo hard for me to understand such things

sneakermom

Thu, Dec 30 2010, 1:56 pm

Finding the right therapist is a like finding a shidduch. You need the right match. The good thing is that I'm sure that if you keep on looking you will find someone he does connect to. He sounds like he really needs a safe place to unwind, to work through his mixed feelings and tensions. He has a lot of his plate and it can be overwhelming.

He is able to express himself to you and communicate his feelings and that is very good. Keep that going....and maybe discuss with him more and more the benefits of reaching out for support and how helpful people find such things.

I guess it's a step by step process. Three things he could really benefit from:

1. Psychotherapy or play therapy
2. Occupational therapy
3. Swimming

Try to focus on one of those three and arrange that. Once that is done you can then focus on the next thing on the list. Remember he is still young and there is so much that can be done to help him. You just need to focus on one thing at at time and be relentless until he gets that one thing.

Hatzlachah!

Mitzvahmom

Thu, Dec 30 2010, 2:02 pm

amother wrote:

My son is also on natural remedies, and I think that is what pushed him getting better...

He is taking a powder that I got in Australia, and it's incredible... We were not seeing much improvements on his labs until he started taking it... I told the doctor about it, and we are going to try to take him off of methotrexate (I do not like it because it's a cancer treatment drug). He also takes omega and probiotics.

Mitzvahmom

Thu, Dec 30 2010, 2:21 pm

I have tried changing his diet, but he's 10. To limit this and that basically makes him eat nothing..

So I have tried by having rice pasta, etc etc...
spelt instead of regular bread... Sometimes whole wheat.
He is only allowed hotdogs, his fav, once a month. Same thing with burgers.. Sometimes all he wants is pizza, it's n ot easy to find food because he's a child. Once he is older and open to eating new things. He does limit himself and for that I am proud of him..

amother

Thu, Dec 30 2010, 2:40 pm

If his class is really so terrible can you skip him/hold him back a grade? A bad class can make things terrible for a sensitive child.

My brother in law has Crohns (or is it had when you no longer have the intestine?) So I wanted to give you some hugs. Sometimes the natural treatments just don't work since the illness is autoimmune. B"H he is married to my sister and very happy. Severe Crohns really is life changing. Does your son know other people with Crohns to help him feel more normal about his medical situation?

Mitzvahmom

Thu, Dec 30 2010, 2:56 pm

It is in his um...rectum (can I say that here?) lol

They have done a couple of barium exams to see if it is doing ok... Sadly it's sometimes inflamed and there's nothing they can do about it.

Luckily he has not been inflamed for almost 2 years..

he was diagnosed about 6 years ago... It took some pushing to get him tested in the first place, because they kept blaming his issues on the fact that my ex was abusive and that he was working through his issues..

But something told me other wise, and B"H I pushed because once he started treatment his life improved greatly!

the world's best mom

Thu, Dec 30 2010, 3:23 pm

Wow! It sounds like your son has a lot to deal with! I thought Crohn's is usually diagnosed in the teenage years or early twenties. Crohn's is very difficult for a young child to deal with. So is having an abusive parent. So is divorce. Low muscle tone doesn't help either, and people who keep everything bottled up inside them have a harder time getting through everything.

The only advice I can give you has been said already, but I'll repeat it anyway. I think it's extremely important to find an excellent therapist who your son will feel confortable talking to. And until he can get OT, swimming is one of the best excercises for him. Is there any pool around that he could use sometimes? He doesn't necessarily need official lessons. Treading water and swimming in any way would be great for him.

Hatzlacha!

bluebird

Thu, Dec 30 2010, 7:54 pm

Mitzvahmom wrote:

I try, but sadly, the class he's in at his school is considered the worst in the school. Teachers scream at the kids to behave, and he shuts down. I had to pull him out of english 2 years ago, because the teacher screamed all day and my son ended up in the hospital out of the stress. I told him he has to tell me these things, and B"H he has communicated since then and we have worked on issues here and there. I asked him if he wants to switch schools, and maybe the boys will be nicer and less chaotic. He said no, I am a lubavitcher and I want to go to a lubavitch school. I love my Rebbe. I want him to be happy...

I think it's admirable that he is dedicated to your derech and puts other people ahead of himself. However, if this school's environment is making him sicker he's not doing himself or anyone else a favor. I would urge you to look at other schools, and explain to your son that this is something that he needs to do to get better, just like the medication, OT, exercise, etc. I'm not sure a 10-year-old can really grasp that on his own. Is there another lubavitch school in your area, or a combination of friendlier (Chabad or non-Chabad) school and Chabad-centered activities that would work for him?

freidasima

Thu, Dec 30 2010, 8:31 pm

MItzvahmom he needs a different therapist I would say. these are serious issues and healing is great but it sounds like he would need someone to talk to to open up and work them out.
Crohns affects everything, watch out for fistulas if it is perianal, and of course methotrexate has its side effects (how are his liver functions?) but what is the powder that is helping him? You have to beware of all these natural things, there are many who take probiotics and they don't help just the opposite, if they help him you are lucky and there are different things which on the one hand help protect the liver and on the other hand give gas.

He MUST become physically active to build up his body. Even if it means that you get him an exercise tape to work with, either audio or for the computer and you stand there and be his coach. Get him small weights for him to lift at home, get him to run up and down the stairs or whatever.

It will change his life to the better. Good that he doesn't have regional ileitis but he might have absorption issues and then his growth, bone structure etc. are questionable and for that exercise will only help. These are important years and although ten is very young it's also the time he can begin to build up his strength.

I assume he has been definitively diagnosed with crohns and don't believe all the narishkeit about emotional this that or the third thing. Today they know that it is a Jewish (unfortunately) eastern european genetic disease, and there are genetic defects that predispose people to it, and it often runs in families if you check back on one of the two sides. Often in previous generations it wasn't diagnosed as such, but you will hear stories about this or that with a stomach problem.

What we do know is that emotional distress exascerbates crohns and that therapy can help sufferers to cope with emotional stress in the present and/or in the past.

I know crohns well, a close family member of mine has had it for almost 45 years and I know from them what it is like to live with the ramifications of it daily.