How hard do you push the ill child?

[Ann.without.an.e]

DS12 has a chronic illness.  He has good days, but he also has many bad days.  I really struggle with how hard and when to push him with things like school work and when to let him "off the hook".  Some would say to never push, yet I know that if I NEVER push a little then his illness will become an excuse.  He says he wants to be married someday and provide for a family.  He is building habits now that will either allow or disallow him this privilege.  Sometimes I push and then I feel guilty :(

[NotSoObvious]

Can you just allow more flexibility? Maybe instead of getting things done that day, he has a list to complete for the week? That way he can start learning how to manage his illness, the effects of taking time "off," and how much he can push himself. Is this the 12 year old? I think that's a good age to start figuring out how to manage it all. He'd probably have to be doing a bit more of that if he was in a classroom and had to decide whether or not to stick the day out or go home.

Just a thought.

I'm sorry he's sick. :(

[Ann.without.an.e]

I would like to do that.  He is naturally a procrastinator though.  He isn't a bad kid, he just drags his feet.  Sometimes because he is unwell, sometimes because he just won't focus and stay on task.  Yes, he is 12.  Love him to pieces.

[abba12]

You have to try and figure out what he isn't doing because he has a real reason, and what he isn't doing because he is procrastinating/being a kid

 

I look and see the current advice for children with disabilities is to cater everything towards then. Change everything. In one instance, I read about a mum with a child who has aspergers, and he finds red calming, so she always wore red. All of her tops were red. But, you know, he's unlikely to find a job as an adult where the uniforms are red, and do you think he will simply grow out of that need?

 

I am visually impaired, and I also have aspergers syndrome and sensory issues. So I understand the calming colour, but the mother, in my opinion, would be much better off teaching the child how to carry something around for himself, or how to not rely on the colour as much.

 

As a toddler, my sensory issues meant I HATED certain feelings, a particular one being sand. My parents would sit me down, screaming and writhing, in the sandpit and 'play' sand with me, in order to accustomise me to the sensation. Some people here will think that is cruel and I should have been allowed to never go near sand, but today, as an adult, the beach is my FAVOURITE place to go. I don't like to walk barefoot on grass, still, but I can do it if I have to. I don't have an issue with shaving cream or brushes or velvet. 

 

Aspergers meant I loved routine and hated change. So my mother would change where the furniture in the house was twice a year. She didn't avoid all routine, I couldn't have coped if she did, but she did regularly break the routine, or change it. Dinner would move times, showers would switch to after dinner, we would go on a random unannounced trip, we would suddenly spend the weekend doing something unplanned. And that helped me, I am grateful for that today, despite many meltdowns as a child from the changes. 

 

The result of all these things is that, today, the only way you could tell I have aspergers is by talking to me about how I think. There's no doubt I have it, my brain works differently, and the way I think/process is classic aspergers. But I have very little outwardly noticeable signs of it. I have met the children who were coddled and catered to and have grown into adults... I am rather glad I was not. Yeah, I had to learn social skills that come naturally to everyone else like they were a chemistry class, full of facts that don't make sense to me memorized. But it has paid off. I hardly have to think about social norms now, it comes naturally, and I am not awkward or avoided in social situations. 

 

Despite it taking a little longer for me to do some things due to my vision, I was expected to keep the same workload as everyone else. I received 1/3rd extra time on timed tests, a scribe if I needed to after excessive writing, and there were some classes I was allowed to skip (namely sewing and dancing), but outside of that, the same was expected of me as of every other child. Yes, it meant I had to work longer and harder, no it wasn't 'fair', but I would ALWAYS have to work longer and harder to achieve these sorts of things as an adult. It prepared me for what adult life with a disability would be like. Lessening my workload for 'fairness' would have given me the impression I deserved something for nothing, or worse, told me I wasn't capable of achieving what others did. 

 

So as you can see, my issues as a child were not ignored, I received extra time on tests, I did have a loose routine, just a regularly broken one, I was intentionally taught social skills. I was homeschooled because of the bullying I received, while still learning these skills, But I was only catered to in as much as I NEEDED to be to counter my physical issues, never just to 'make me comfortable' or 'make things fair'. It was hard at the time but I am very grateful it was done. 

 

I don't know what your sons condition is, so take what you can from this advice but much of it may not be relevant. Obviously if he has, say, chronic tiredness then he cannot complete a full workload, but if he just has intermittent 'attacks', the previous suggestion of a weeks goals, which he divides himself around his illness, sounds perfect. If he is unwell, he can still work in the evenings etc. No, it's not entirely fair for a child who is chronically ill to do schoolwork on the weekend or in the evenings, but, just like my vision, it is what his life will be like. If this is a long term condition, he will spend the rest of his life working his schedule around his illness and fitting in family, and work, wherever he can. It's not fair, but it's how it is. Also, you may find him procrastinating less if the work carries into evenings/weekends, maybe he can do more while sick than you realized. He needs to learn his issues are no excuse, or crutch, as well. He needs to show himself he can do it, and not feel defeated. Often I would give up before trying something, convinced I couldn't do it because of my vision, when it turns out, with some hard work and a little adjustment, I could.

 

I hope something of this helps. It's hard pushing a child who is sick/disabled. We have discovered our eldest has many of the same issues I do (though, thankfully, she has all her vision). I am just beginning the process of making her walk in things that bother her (she loves sand, but mud is a whole other story!) and intentionally causing breaks in routine to help her learn to cope.Sometimes I doubt myself, but I have to keep reminding myself of how grateful I am (and, it's not constant, we don't do this every day, it is intermittent, we did some sensory stuff on friday, and we are doing a routine change today, wednesday). She is a very happy, bright child so I can't be doing too much wrong lol.

[Katy]

Um, without knowing the nature of the chronic illness it's difficult to know if this is fair, but I would go with a "nothing fun until the work's done" rule, and give him assignments in advance.  This way, if he's feeling good he can do more than the required amount of work, and if he's feeling bad he can skip it and go to bed, but nothing fun either.

 

That will also teach him to manage procrastination.

[marbel]

My 16-year-old has a chronic mystery illness that has been bothering him (and all of us) for a long while now.  He has a lot of sleep trouble, headaches, and the fatigue that goes with that. Lots going on with him.  Also ADD which we didn't medicate for a long time but are starting to now.

 

It is really hard to know when to nudge and when to back off.  I also don't want to cultivate the habit of sickness and inactivity.  So, I've become much more involved in his schooling than I expected to be at this time in our lives.  I do more reading aloud so we can discuss.  Sometimes I'll have him read, say, his biology lesson, and then we'll go through the chapter questions orally.   We listen to lectures and discuss.  Sometimes he'll do some Khan Academy or Dragon Box (yes, he is behind in math) when he's not up for much else. 

 

Mainly I try to help him find ways he can be productive and continue his education at some level, if not the optimal level.  Recently I bought a CLEP test prep book and he's taken one test for fun.  It's easy enough to do, and since it's just for practice there's no pressure.  It actually gave him a boost to see he didn't do too terribly (note I didn't say well, but not too terribly for his age/grade).   It also gave us some things to talk about - some things I think he knew but forgot.   Sometimes I will send him outside to sit in the sunshine and read an enjoyable book - not necessarily a schoolbook.  Sometimes I will suggest he ride the exercise bike slowly for a little while.  That sometimes helps him come back and do something else.

 

By mentioning the CLEP tests I'm not advocating "teaching to the test" but just ways to keep the brain working when it doesn't want to.  And your son might be a little young for that.

 

A pp suggested "nothing fun till the work's done" and let him go to bed.  That might work for the procrastination, but you have to find the right balance; for example, if sleep is a problem, more sleep during the day or just lying around idle isn't going to help.  

 

We also talk a lot about the future and how the life he leads now affects his future, for better or worse. We also talk about people who have had long illnesses and who "caught up" (for lack of a better term) quickly when they were better, because they were motivated. 

 

Psychological counseling can also help. 

 

Hope something in here is useful to you! :grouphug:

[PeterPan]

One technique they use in therapy with people with chronic and long-term problems is to have them *journal* and score how they're feeling each day on a number of parameters.  It's not like he either feels bad or great.  There's probably a continuum.  (1-10, terrific, recovering, horrible for a given aspect)  So I would suggest you make a calendar or chart together, log the data every day when he wakes up about how he's feeling on the necessary parameters, and then decide what percentage of his work that data merits.  If he's having a 5-5-5 day, do 50% of the work.  If he's having a 3-7-7, maybe he does 70% or 30%, depending on what that means.  But at least that way he's reflecting on what he can do, instead of turning it into a blanket can't.

[Χά�ων]

DS has good and bad days. He is still VERY physically active and still competes at his level in his sport and holds his own but that will change over the next few years. On his good days I push hard physically and educationally so that on bad days he can rest without worry. I also did away with fluff work and stripped everything down to the bone. School work takes less time and since he is not wasting it on fluff he can progress through the meat in less time. When he needs longer breaks it is not a big deal to just chill and cut back on school work.

 

[Ann.without.an.e]

I guess I should have given more info. He has Crohn's disease. He has had a lot of rough days lately. He feels exhausted, queasy, dizzy, and simply can't focus. I do think there are days when he can do more than he gives himself credit for though.

[NotSoObvious]

Oh! What a hard diagnosis at such a young age! I didn't even know it was possible to be diagnosed that young. Not to derail the thread, but how did you figure it out?

[Katy]

This depends on having a large library with a good audiobook section nearby,  but I would probably change the curriculum choices so the only thing that required much focus for him was math and writing, and fill in other subjects with audiobooks and documentaries.  It's sort of like low-energy cramming for when you can't focus.

1. Work year round at least until he is caught up on math.
2. Have a goal of passing one concept in math per day on Khan Academy. Have an unstated minimum of passing two lessons per week. As in, if he's not getting it done, you sit with him and work through two lessons.  I know that seems minimal, but when you remove the fluff there are less than 500 math lessons on that site, working up though college level.
3. Browse the SAT prep section of the closest bookstore and choose some vocabulary flashcards.  Teach him 3-5 words per week, the same words all week. 
4. Assign writing an essay of one page per day (also with a two essay unstated minimum), but make it front and back, and have him skip every other line.  You check the paper while sitting next to him, underline grammar and spelling mistakes, and have him re-write what he did wrong on the blank lines.
5. Using audiobooks and DVD's from your local library and educational videos online, have him listen or watch for 2-5 hours a day on a wide variety of topics and then discuss what he learned with you later.  Before you have the conversation, YOU should do some googling so you understand what to discuss.  If you have access to an amazing library, consider bringing home a wide variety of audiobooks and DVD's and let him choose with some guidance:  perhaps require one history, one science, and one literature topic of his choice each week, and make other choices free choices; but require him to choose only educational options until after dinner at 6pm or something similar.  Make sure to include things that might be somewhat over his head:  Ken Burn's Civil War series, live performances of Shakespeare on YouTube (AFTER you summarize the story for him so he had some idea of what is going on when he's watching), and a bunch of fun options from the kid's audiobook section:  You haven't truly known Harry Potter until you've listened to those audiobooks, and the Alex Rider series was a huge hit in our home.  The important thing here is the discussion with you:  he should know why that Shakespeare play was important, or other high-level concepts and analysis he might not think about without you asking the questions.
6. Finally, I would make sure to assign him something everyday that would make him happy or laugh, purely for the joy of it.  I was on disability for a long time, and an occupational therapist told me I needed to make sure to do something fun every day, and to make sure to watch something funny every day on TV because laughing really is great medicine.  I started focusing on doing something creative every day (generally for me it's painting or photography), and I watch a comedy series in syndication every day when I don't feel good.  IDK what your family standards are or what shows might be appropriate for a young boy (we limit non-educational screen time for kids around here), but I'd probably buy him the DVD's of Big Bang Theory or something I though appropriate, and have him watch one episode per day. 

ETA:  have him include that week's vocabulary words in every essay.

[marbel]

Is there a kid/teen support group for Crohn's in your area?   Maybe it would be helpful for him to have others to talk to, bounce ideas for getting work done on bad days, etc. 

[Lizzie in Ma]

Tough one isn't it?  One of the life skills dd had to learn when she became ill was that she would have to learn when to push herself and when her body was giving her clear signs to rest. 

No drama was allowed because it was critical that she learn that this was how her life was, it was real and it stinks but she was not allowed to use it to be manipulative or as an excuse.

Because we were not her, and couldn't make these decisions for her, we had to be able to count on her to do the right thing on any given day.  And then we just had to trust her.

It was really hard for me as a die hard member of the Draconian Homeschool group to have to let go of the homeschool we had always had prior to her illness.

I do whatever I can to help her to be able to work on the days she is able to do so.  Tea, blankets, meds, hugs and encouragement are administered as needed.

She ended up loosing an entire year of school and I had to let it all go and just be her advocate.

I hope you all learn to deal, it can be so very frustrating. :grouphug: :grouphug:

[Ann.without.an.e]

Oh! What a hard diagnosis at such a young age! I didn't even know it was possible to be diagnosed that young. Not to derail the thread, but how did you figure it out?

 

 

In retrospect, his symptoms began years ago with joint pain and inflammation, but because he had no bowel symptoms at the time it was missed.  I feel so guilty that I often thought he was just being lazy :(  He wanted to play soccer but then he couldn't keep up because of joint issues that would come and go.  Spring of 2012 he started having diarrhea,stomach cramps, and weightloss.  After waiting for a while (too long really) I took him to the ped. and they pulled some labwork.  His inflammatory numbers were very high which when combined with the bowel symptoms was indicative of Crohn's disease or Ulcerative Colitis.  We were referred to a pedaitric GI specialist.  He was diagnosed in November of 2012 through a scope and pathology reports.  He dropped from 92 pounds to 72 pounds before he was diagnosed.  

 

I just feel so bad for him.  We don't really treat him any different and then sometimes I feel guilty.  HIs diet is so limited.  He is on a stricter than paleo diet.  Grains make him sick, gluten makes him sick, and sugar is not good for him.  He produces zero lactase so any amount of dairy and he is devastatingly sick.  We went to the apple orchard for DD's birthday last week and we thought we would splurge and let him try a candy apple.  It was the kind without milk or nuts - the sugared kind.  Within 15 minutes he could hard move he was so sick and queasy and then he spent the whole time vomiting.

:(

[Ann.without.an.e]

This depends on having a large library with a good audiobook section nearby,  but I would probably change the curriculum choices so the only thing that required much focus for him was math and writing, and fill in other subjects with audiobooks and documentaries.  It's sort of like low-energy cramming for when you can't focus.

1. Work year round at least until he is caught up on math.
2. Have a goal of passing one concept in math per day on Khan Academy. Have an unstated minimum of passing two lessons per week. As in, if he's not getting it done, you sit with him and work through two lessons.  I know that seems minimal, but when you remove the fluff there are less than 500 math lessons on that site, working up though college level.
3. Browse the SAT prep section of the closest bookstore and choose some vocabulary flashcards.  Teach him 3-5 words per week, the same words all week. 
4. Assign writing an essay of one page per day (also with a two essay unstated minimum), but make it front and back, and have him skip every other line.  You check the paper while sitting next to him, underline grammar and spelling mistakes, and have him re-write what he did wrong on the blank lines.
5. Using audiobooks and DVD's from your local library and educational videos online, have him listen or watch for 2-5 hours a day on a wide variety of topics and then discuss what he learned with you later.  Before you have the conversation, YOU should do some googling so you understand what to discuss.  If you have access to an amazing library, consider bringing home a wide variety of audiobooks and DVD's and let him choose with some guidance:  perhaps require one history, one science, and one literature topic of his choice each week, and make other choices free choices; but require him to choose only educational options until after dinner at 6pm or something similar.  Make sure to include things that might be somewhat over his head:  Ken Burn's Civil War series, live performances of Shakespeare on YouTube (AFTER you summarize the story for him so he had some idea of what is going on when he's watching), and a bunch of fun options from the kid's audiobook section:  You haven't truly known Harry Potter until you've listened to those audiobooks, and the Alex Rider series was a huge hit in our home.  The important thing here is the discussion with you:  he should know why that Shakespeare play was important, or other high-level concepts and analysis he might not think about without you asking the questions.
6. Finally, I would make sure to assign him something everyday that would make him happy or laugh, purely for the joy of it.  I was on disability for a long time, and an occupational therapist told me I needed to make sure to do something fun every day, and to make sure to watch something funny every day on TV because laughing really is great medicine.  I started focusing on doing something creative every day (generally for me it's painting or photography), and I watch a comedy series in syndication every day when I don't feel good.  IDK what your family standards are or what shows might be appropriate for a young boy (we limit non-educational screen time for kids around here), but I'd probably buy him the DVD's of Big Bang Theory or something I though appropriate, and have him watch one episode per day. 

ETA:  have him include that week's vocabulary words in every essay.

 

 

These are some great ideas.  He is actually good at reading.  He reads a massive amount of fiction material.  He has a difficult time focusing on math, latin, etc that requires more sit at the table and concentrate work.  He has a great reading comprehension.  I like the idea of educational videos.  I never thoughts of that.  

 

Last year I just let him work more when he felt good and less when he was sick.  He is in CC's Challenge A this year so the work is paced.  I love having him in it, but I think this is where my added stress is coming from.  We are forcing him to get the weeks work done that week because he needs it done for Seminar on Monday.  He enjoys the work for the most part and to be honest, it is a lighter work load than I gave him last year.  BUT, when he does fall behind it is difficult to catch up. 

 

DH is not so forgiving.  He pushes him really hard.  He says that if this child is going to hold a job in the future he is going to have to push through and work hard regardless of how he feels.  DH is a hard worker and he does work regardless of how he feels, but I think he is hard on DS.  We are both a little hard on him.  :(

[Ann.without.an.e]

Tough one isn't it?  One of the life skills dd had to learn when she became ill was that she would have to learn when to push herself and when her body was giving her clear signs to rest. 

No drama was allowed because it was critical that she learn that this was how her life was, it was real and it stinks but she was not allowed to use it to be manipulative or as an excuse.

Because we were not her, and couldn't make these decisions for her, we had to be able to count on her to do the right thing on any given day.  And then we just had to trust her.

It was really hard for me as a die hard member of the Draconian Homeschool group to have to let go of the homeschool we had always had prior to her illness.

I do whatever I can to help her to be able to work on the days she is able to do so.  Tea, blankets, meds, hugs and encouragement are administered as needed.

She ended up loosing an entire year of school and I had to let it all go and just be her advocate.

I hope you all learn to deal, it can be so very frustrating. :grouphug: :grouphug:

 

 

I totally agree with the no drama.  Thankfully, DS is a no drama kid.  He is the kind that will get up, throw up, brush his teeth, and then just tell you in the morning.  

 

Your post means a lot to me.  I am not naturally a compassionate person.  I have no done enough blankets, hugs, etc.  

 

Since we are in Challenge A, the work is paced.  I think maybe I need to reconsider whether Classical Conversation's Challenge is a good option for him for next year, or even for next semester.  The added pressure to complete X amount of work in X amount of time is what is driving us crazy :(

[marbel]

I totally agree with the no drama.  Thankfully, DS is a no drama kid.  He is the kind that will get up, throw up, brush his teeth, and then just tell you in the morning.  

 

Your post means a lot to me.  I am not naturally a compassionate person.  I have no done enough blankets, hugs, etc.  

 

<snip>

 

:grouphug:

 

I also am not naturally compassionate, but more of a "get on with it" type.  My husband is a little better but... only a little. 

 

If one of us sees the other getting frustrated, we ask "do we believe he is sick, or not?"   It is hard not to be anxious for his future though.   We still do a good bit of reading on the couch, snuggling (well as much as a 16-year-old will snuggle, kwim?) and reassurance.  But there are times to get a little tougher too.  It's hard. 

 

Asking "What do you feel like you could do now?" helps sometimes. It helps him take a little more control. 

 

:grouphug: :grouphug:

 

[TeenagerMom]

DS10 is physically disabled with a lot of chronic pain as well as having a host of medical conditions.  We push.  We do school every.single.day unless there is a fever & vomiting involved.  We treat pain as well as we can.  DH & I both take the stance that DS has to live with this for the rest of his life.  Most employers are not compassionate and are not going to just let him take 1-2 days off a week because he is hurting, etc.  I AM a compassionate person (I am a caregiver for Alzheimers patients), but I still push so that DS learns that you deal with it, treat your symptoms, and work through it because life won't stop & wait on your to catch up.

 

We also practice what we preach as parents. My kids have watched me school them when I am very ill.  They have watched me paint my house (within the parameters of the restrictions the worker's comp doc gave) while I was off with a work injury.  They have seen me get out and drive them to activities when my back injury was so bad that I was crying in the car to get them there (had no other options). 

[Ann.without.an.e]

DS10 is physically disabled with a lot of chronic pain as well as having a host of medical conditions.  We push.  We do school every.single.day unless there is a fever & vomiting involved.  We treat pain as well as we can.  DH & I both take the stance that DS has to live with this for the rest of his life.  Most employers are not compassionate and are not going to just let him take 1-2 days off a week because he is hurting, etc.  I AM a compassionate person (I am a caregiver for Alzheimers patients), but I still push so that DS learns that you deal with it, treat your symptoms, and work through it because life won't stop & wait on your to catch up.

 

We also practice what we preach as parents. My kids have watched me school them when I am very ill.  They have watched me paint my house (within the parameters of the restrictions the worker's comp doc gave) while I was off with a work injury.  They have seen me get out and drive them to activities when my back injury was so bad that I was crying in the car to get them there (had no other options). 

 

 

 

This is exactly the approach we have been taking but then sometimes I feel guilty.  I think you found and quoted my DH on the employer part.

[TeenagerMom]

This is exactly the approach we have been taking but then sometimes I feel guilty.  I think you found and quoted my DH on the employer part.

 

I have plenty of guilty days myself but I don't let him see that.  He isn't treated any different than his 100% healthy, physically abled sister. The only time we cave is for walking long distances (like over 1 mile).  For that he gets to bring along his scooter or we pull out his wheelchair. Last week DS was having muscles spasms in his leg while we were out shopping for shoes for basketball.  Shopping had to get done.  Rub it out, walk it out, and move on.  He decided he wanted to play basketball. He threw up the entire way home from his first practice.  He went back for the 2nd one last night.  We medicated prior to and took other meds with us. HIs asthma started acting up.  He took his inhaler, sat out for a few minutes, and went right back to it. 

 

I would like to think that we are teaching/have taught him that he is who he is, a happy 10 year old boy who can achieve everything he wants in life, not a disabled child with a list of diagnosis a mile long. In fact, he had to ask me what disabled meant about  1 1/2 years ago.  That word was never in his vocabulary because we rarely use it when referring to him.  Now he understands that the government & doctors consider him to have a disability due to diagnosis but we consider him to be a normal kid. 

[Whereneverever]

Don't feel guilty. Wanting him to be able to manage his condition and hold an adult job is a good thing!

[Splash]

We are in the exact same position with our 12 yr old daughter. She is also in Challenge A ironically. She doesn't have Crohn's disease but has atypical Hemolytic Uremic Syndrome which when it is active causes her to have colitis, pancreatitis, headaches, pain, brain fog, etc. She is also always, always tired. Bad thing is we don't know when the disease is active until blood tests so usually after a week or so of her feeling bad and since really she is tired and doesn't feel well a lot it is hard to tell when to push and when not to push. I'm rethinking the whole Classical Conversations thing with her too. She likes it, she's capable but the stress of keeping up while sick is tough.

 

Thank you for all who gave ideas and plans. It helps.

[Lizzie in Ma]

I totally agree with the no drama.  Thankfully, DS is a no drama kid.  He is the kind that will get up, throw up, brush his teeth, and then just tell you in the morning.  

 

Your post means a lot to me.  I am not naturally a compassionate person.  I have no done enough blankets, hugs, etc.  

 

Since we are in Challenge A, the work is paced.  I think maybe I need to reconsider whether Classical Conversation's Challenge is a good option for him for next year, or even for next semester.  The added pressure to complete X amount of work in X amount of time is what is driving us crazy :(

 

I think it was almost harder on me and probably you as well.  I am a Yankee born and bred, you get up, you work hard, you work through it.  Understanding just how sick my kid was/is was a struggle, especially since it is one of those "invisible diseases".  She looks great, how can she possibly be so ill?

 

Compromising on things as simple as a straighforward bedtime, why is that an issue?  Sometimes she literally hurts too much to fall asleep easily or well.  So bedtime is flexible as needed.  Same thing with time to get up.  Used to always be a set time to get up and do chores then start school.  Now, some days she literally just can't get out of bed.

Compassion for this particular child wasn't easy either, she has always pushed my buttons more than any other living soul.  But I had to start listening to my heart.

 

For her, the "brain fog" of her illness meant that, for awhile, she literally couldn't do school.  It wasn't a lack of desire or will or obedience.  In fact, it broke her completey because she had always been a driven, A student with goals and a drive.

I am rambling.  In the end, you know your child best and you will find the compromises that work, likely over and over again.

 

Tea, a blanket and a hug have never been a bad idea. ;)

 

To be clear, brain fog meant heavy academics were derailed, but she continued her internship at Old Sturbridge Village, got a job at a local garden store and carried on.  She may come home and go directly to bed in exhaustion, but she hasn't given up by any means.  I am so very proud of her.  In fact, I think she is pretty remarkable.   

She wrote recently on the topic, perhaps it may help you to read it. 

http://mountainash96.blogspot.com/2013/03/invisible-illnesses.html

[nancy in nj]

My daughter dealt with a chronic illness from about age 12 on, and I personally would never have enrolled her in a program (prior to highschool) with fixed weekly deadlines.  In retrospect,given her health issues, I would have done LESS structured work, not more during those middle school years.  Also, I strongly disagree with taking the "no fun, until all work is done" approach with a chronically ill child.  Having a chronic illness is so emotionally difficult for kids, and it is often isolating.  My dd would have done so many more neat things during her high school years had she not had her health issues, and having nothing to look forward to on the "good days" other than school work would be horrible.  To be honest, in retrospect, our middle school structured learning would have been limited to math,  grammar and writing (in the context of her other self-directed subjects).  If your son is a voracious reader (or listener of good books), he will be fine!  

 

In high school, we transitioned slowly to on-line classes with fixed deadlines, choosing carefully in 9th and 10th grade, opting for classes that taught valuable skills (e.g., Rebecca Randolph's Composition and Lit classes) without killing her.  One of the worst mistakes I made was putting her in a world-history class in 9th grade that just killed her with picky multiple choice tests (as well as higher level essays, which were great). The stress definitely had a negative effect on her health and was so not worth it.   By 11th grade she took 2 AP classes from PA Homeschoolers and in 12th grade, she took 4!  The thing we loved about PA Homeschoolers was that for most of the classes, the focus was on immersing yourself in the material and the AP test results took care of themselves, so their was not undue stress associated with these classes yet they were excellent. 

 

My dd is a freshman in the honors program at a great school (UNC Chapel Hill), and while of course her health still limits her opportunities, she is finding her niche and is for the most part balancing everything well.   Looking back, it is the areas that I pushed too hard in during middle school/high school that I regret, not the areas in which we slacked off a bit!

 

[Χά�ων]

OK. Wow, just wow. To all the moms on here who suffer from a chronic illness but have managed to not post, I applaud you. You probably already know I have no such reservations.

 

To previous posters:

 

I am posting the Spoon Theory in it's entirety. Skip my comments if you will but read the story below. I am sure if the author finds my post and the reads some, not all, of posts previous to mine she would not be against me sharing it.

 

I am honestly seeing a complete lack of understanding about what living with a chronic illness really entails. And yes, I get the desire to push my child through the pain to do more and to get used to living a normal life because that is the end goal for all parents. Yes, the possibility that my son will turn 18 (assuming his disease does not take the fatal course and he is alive at 18) and have to be on disability because he is NOT able to work a standard 40 hour a week job upsets me. I would give anything to have what he has myself. If I could, I would in a heart beat without hesitation and I know what will happen as his disease progresses. I know he will live in near constant pain until the day he dies. I would do anything to make his dream a reality. My son wants nothing more than to be normal like other kids his age. He wants to grow up, go to college, start a career and raise a family. That is his dream. The reality is that he may live to be an adult, but he will most likely not be able to be the primary breadwinner in the family. He and his wife will need help from a fertility specialist unless they opt to adopt. If he were to attempt to work, he would more than likely be unable to come home and be a part of his family and play with his own children. The chances are that working would take so much out of him that he will have to choose between being able to spend time with his family or working, assuming he is still at a point where he can choose. I will support him if he never goes to college and decides to stay at home with his children. I will understand that he put his family before a career.

 

 

 

 

The Spoon Theory

by Christine Miserandino

www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

 

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

 

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

 

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

 

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupusâ€. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

 

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss†of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

 

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoonsâ€. But when you have to now plan your day, you need to know exactly how many “spoons†you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons†for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

 

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said †No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.†I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

 

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons†are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoonsâ€, but just think how hard tomorrow will be with less “spoonsâ€. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoonsâ€, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

 

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

 

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

 

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?†I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.â€

 

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoonsâ€.

 

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons†and I chose to spend this time with you.â€

 

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoonsâ€.

 

- See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#sthash.bIQwIWlE.dpuf

[Whereneverever]

I think some of us were talking about trying to best manage the spoons you have. My dd has a difficult disease that will bar her from some jobs, driving a car, and can end her life unexpectedly. I'm working hard at age appropriate learning on how to manage her condition and live life as closely to what she wants as possible.

[TeenagerMom]

I think some of us were talking about trying to best manage the spoons you have. My dd has a difficult disease that will bar her from some jobs, driving a car, and can end her life unexpectedly. I'm working hard at age appropriate learning on how to manage her condition and live life as closely to what she wants as possible.

 

Precisely.  DS has goals that he wants to achieve in his life.  We push to help him achieve those.  He expectations for himself are just as high, if not higher, than our's.  He shouldn't be able to play basketball because he can't sustain running for long periods, yet he has made the decision to play & the coach has agreed to work with his limitations by allowing him to sit when he needs to.  Out of a 2 hour practice last night, he sat for 10 minutes because of his own determination to play.

 

Will DS have limitations in the future?  Yes.  He can't enlist in the military like he would like or even be a police officer.  He will need to work in a field where he can sit a good portion of his day, but he won't be able to leave work just because he's vomiting with his reflux acting up.  He eats, he throws up, we move on and finish our school work.  It sucks.  It's unpleasant as hell, but if we didn't push through, he'd probably miss a month of school at a time when it's acting up really bad. None of his diagnosis are so bad as to put him out for days at a time.  If we were talking Mono, Lupus, Lyme Disease, Fibromyalgia, etc., our expectations would be different and we would work accordingly.

[Ann.without.an.e]

Will DS have limitations in the future?  Yes.  He can't enlist in the military like he would like or even be a police officer.  

 

 

 

This was one of the most difficult things about DS's diagnosis.  He always said he either wanted to be in the Marines or be a Police Officer.  Both are not an option now :(

[Jean in Newcastle]

I have a chronic illness.  Dd has migraines and a benign tumor in her head (that can nevertheless cause problems).  Ds has some chronic problems that are still being identified.

 

I'm pretty compassionate because I have totally btdt.  I'm also all about making practical plans.

 

We talk about warning signs - how to spot them and how to respond.  

We talk about preventive medicine.  I'm pretty hardcore naggy about this.  

We've signed up for SparkTeen to log in exercise and food choices.  This is part of our health credit but more than that, I want it to be a way to think about healthy habits which I think are even more important if you have a chronic illness.

We have "emergency mode" routines and "normal" routines.  

When you have chronic illness, having choices and some measure of control of your own life is important.  I try to involve the kids in their own care and give choices as much as possible.  

[abba12]

Thank you so much for the spoon theory story... I only mentioned childhood issues in my post since we were talking about a child, but I suffer from PTSD and a chronic pain issue. The spoon theory describes EXACTLY how I feel about my PTSD, and I can't wait to show it to my husband tonight.

 

That said, I never recommended acting as if he had unlimited 'spoons'. In the instance of this child, he has a different number of spoons every day, and he can loose spoons he thought he had suddenly if he takes a bad turn in the afternoon. My suggestion was to prioritize and push through when he had enough spoons to go beyond basic care, knowing he would not be able to work on a bad day. 

 

I am assuming his mother has already assessed whether the workload is appropriate for his condition and future goals, and that will look very different for a child with crohns than for a child with lupus, which is different again from a child with chronic fatigue or whatever. This child may very well be capable of working, at least part time, along with caring for a family, but that may not be true of the lupus sufferer.

 

And, finally, I would strongly, strongly recommend against the idea of 'no fun until all the work is done'. Disabilities and chronic illnesses can be downright miserable to live with, and it takes a lot less brain evergy to do something fun than to do work. Don't take away fun, just ensure he is living up to his potential and using his 'spoons' efficiently. You need to have balance. Nothing fun until work is done would mean, some weeks, he would never have anything fun through no real fault of his own.

[mamajag]

nm

[mamatohaleybug]

I really struggle with balancing my DD's needs health-wise with her needs education-wise. She has numerous chronic health problems, all of them serious. Some days are really bad, a few days are really good and most are somewhere in-between. We're trying to figure out a better way for her to communicate with us and manage her life. I appreciate all of the thoughts shared here. It helps me better think through the options. This is a complex, emotionally fraught issue.

[mamatohaleybug]

I cannot imagine forcing a seriously ill child to tough it out and do school when they are sick. I have to stay out of that thread or I'll get banned.

 

?????

 

My DD is unwell most of the time. She is also very bright and craves normalcy. She HAS to "do school" by law and because she has to learn in order to hopefully be a functional, happy, well-rounded person. I don't mean to upset you but I sincerely don't understand what the alternative is. You obviously have some strong feelings and I am curious how you would/do balance the need for a child to be actively learning while living with a chronic illness/disability. It's something many of us are struggling with so please share your thoughts so that we can learn from your experiences.

[Χά�ων]

Part of the disconnect could be that there is such a wide variety of chronic illnesses and severity levels, and we are all coming from a different place with different experiences.

 

What DS has is so rare there isn't even research for it and I prefer not mentioning it on a public forum because it would show up in a google search.

[nancy in nj]

?????

 

My DD is unwell most of the time. She is also very bright and craves normalcy. She HAS to "do school" by law and because she has to learn in order to hopefully be a functional, happy, well-rounded person. I don't mean to upset you but I sincerely don't understand what the alternative is. You obviously have some strong feelings and I am curious how you would/do balance the need for a child to be actively learning while living with a chronic illness/disability. It's something many of us are struggling with so please share your thoughts so that we can learn from your experiences.

 

Yes, by law you have to "do school," but certainly with chronic illness "accommodations" are appropriate.  If a chronically ill child is enrolled in public school, by law the school would have to provide reasonable accomodations.  It is not a question of either doing school or not, it is a matter of balancing the academic needs with the medical needs with the social needs.

 

As someone who has been down a long road and has successfully gotten a chronically ill child launched in a top 30 college, the key really is balance rather than pushing your child without regard for the extenuating medical conditions so that they can be a successful adult.  Quite frankly, give me a break!  We all want our children to reach their full potential, but there is not any one road to success.  Balancing the academic needs with the medical and other needs of a chronically ill child especially in the pre-highschool years is not dooming them to life as an unemployable slacker--=not even close.

 

For what it's worth, my daughter is a national AP scholar, scoring 5 on 7 AP tests and 4 on 1 AP tests in subjects as diverse as Calc bC to English to APUSH.  She also was our state's winner in the National Peace Essay Contest, competed in swimming before she became too ill in 8th grade (6,000 yds plus practices a day) and then competed in rowing for 2 years before she decided to focus more on her academics/writing.  And yes, during her highschool years there were many, many days when she had to sleep till noon and could barely focus, but she always did her best.  We did balance and quite frankly, I wish we would have balanced more in the pre-highschool and early highschool years.  She's doing great academically in college, has a great job within the school (and yes, they do make reasonable accomodations) and any adult she interacts with is nothing but impressed and would hire her in a second.  I have no idea what the future holds, but her future is certainly not predetermined by accomodating her medical needs during her pre-high school and highschool years.

[Χά�ων]

Yes, by law you have to "do school," but certainly with chronic illness "accommodations" are appropriate.  If a chronically ill child is enrolled in public school, by law the school would have to provide reasonable accomodations.  It is not a question of either doing school or not, it is a matter of balancing the academic needs with the medical needs with the social needs.

 

 

Interesting tidbit of information: When I talked to the school, they offered 1 hour a week of homebound instruction to help with the work and explain concepts that he was struggling with and said the rest of the work would take less than an hour a day for him to complete. Basically the same amount I was doing with him. This is for a 4th grader though. DS can write but due to the deformities in his hands it is not feasible for him to write as much as a typical child does. I was desperate so I checked. Don't judge. Not only is he sick, he is severely dyslexic and the 12+ hours of OT, PT, VT and specialized reading instruction plus the 2+ hours a day of workouts to maintain his cardio and strength finally got to me.

 

DS would be on homebound because he is on two immunosuppressant medications and a classroom is not a good option for him. The medications he is on are really helping and his rheumatologist has said if he was in a regular classroom she would not keep him on two immunosuppressants.

[Whereneverever]

I can't imagine why anyone would judge you for looking into school and services. You do the best for your child- who cares what an Internet board thinks?

[Χά�ων]

I can't imagine why anyone would judge you for looking into school and services. You do the best for your child- who cares what an Internet board thinks?

I do nor care about the internet board, but more my own piece of mine. I hate having to admit needing help in any way.

[Whereneverever]

:grouphug:

[Ann.without.an.e]

I think that we are all dealing with different children and  different medical circumstances so it will be easy to misunderstand each other.  Some children are very motivated to do their best. If my oldest DD was the chronically ill child, I would never push her.  She gives her best effort 100%, always, even when she is sick.  If she decides to go to bed, I let her.  On the other hand, DS has always taken the easy road.  He is a procrastinator by nature.  He is bright and he has great potential.  It is difficult for me to know how hard to push him because sometimes we are just queasy and light headed and we have the potential to move on but we don't want to ..... are you following me here?  Other times he is terribly sick and he needs down time.  He is the type of person who wants to accomplish alot, he has big goals, etc but without a push he will never accomplish any of them.  I know that this is more common for boys than girls.  He is a good kid, he simply hasn't found his self-motivation yet.  Sometimes I feel guilty telling him he needs to work anyway, but what do I do when he won't push himself?  I am not talking about a child who is very ill and I am forcing him to sit at the table all day to do school.  For me though, it isn't always easy to "see" how sick he is.  I know that he goes through times of great fatigue, dizziness, and pain....on top of the bowel issues.  I guess it is just more complex than can get figured out here.

Thanks for all of the thoughts though.

[rieshy]

I'm the mom of a chronically ill child as well.  I have decided that second guessing myself and occasional guilt over pushing too hard and the converse worry that I'm allowing him to build habits of making excuses are part and parcel of the gig.  To the original poster- I just want to give a hug.  I don't have an answer- and like many have mentioned, no two chronically ill children are the same- even if they do have the same diagnosis.

 

I attempt to walk carefully and compassionately.  My chronically ill son is only in 2nd grade but I have avoided any outside rigidly scheduled classes to date.  I just never know when he will have a bad spell.  Remember too that your son is 12 (if I read that correctly)  so not only is he dealing with illness but hormones and growth which makes life "interesting" all on it's own. 

[rieshy]

I wanted to add- trust your gut.  Don't let fears cloud your mind.  For instance, don't get stressed out and start imagining your son playing video games in your basement at 25 all because you were too easy on him.  If you start going there in your head you will start treating your son unfairly- and he will have no idea why.

 

Don't compare him to your other children.  

 

Don't compare him with kids in your home school community. 

 

This is supposed to be one of the bonuses of home schooling anyway.  Taking our children as individuals and teaching them how to learn.  Your son can still have a rigorous education.  

[Tiramisu]

Having had a sick dd in high school, who also has a learning disability, my recommendation would be to prioritize. Think carefully about the skills they need for higher education and their future. Focus on subjects like math, for which all future math and science courses are dependent, and reading and writing, on which all future courses and their life will depend. I would make sure those subjects are done well, according to the best of their interests and abilities. Take into account their future plans as well, and go from there. 

 

My heart goes out to you all. I got so much support here when we were in the middle of it. Thankfully, dd is doing well and is away at college. She still needs to be monitored regularly, but we're taking one day at a time.

[anmom]

I just want to say that I am glad you started this discussion. My 6 yr old DD has Ulcerative Colitis and Chornic Liver Disease. She also recently cma edown with a case of pertussis on top of that. I struggle a lot with how much to push her and how much to let it go that she wants to just lay in her bed and read a book or watch a movie on tv. Thank you all for the insight. This is a lot to mull over.

[NoPlaceLikeHome]

In retrospect, his symptoms began years ago with joint pain and inflammation, but because he had no bowel symptoms at the time it was missed.  I feel so guilty that I often thought he was just being lazy :(  He wanted to play soccer but then he couldn't keep up because of joint issues that would come and go.  Spring of 2012 he started having diarrhea,stomach cramps, and weightloss.  After waiting for a while (too long really) I took him to the ped. and they pulled some labwork.  His inflammatory numbers were very high which when combined with the bowel symptoms was indicative of Crohn's disease or Ulcerative Colitis.  We were referred to a pedaitric GI specialist.  He was diagnosed in November of 2012 through a scope and pathology reports.  He dropped from 92 pounds to 72 pounds before he was diagnosed.  

 

I just feel so bad for him.  We don't really treat him any different and then sometimes I feel guilty.  HIs diet is so limited.  He is on a stricter than paleo diet.  Grains make him sick, gluten makes him sick, and sugar is not good for him.  He produces zero lactase so any amount of dairy and he is devastatingly sick.  We went to the apple orchard for DD's birthday last week and we thought we would splurge and let him try a candy apple.  It was the kind without milk or nuts - the sugared kind.  Within 15 minutes he could hard move he was so sick and queasy and then he spent the whole time vomiting.

:(

If you have not already and you are able to, then I would strongly consider taking him to a doctor and hospital that is nationally renowned for Chron's disease. As a nurse, I truly believe that in difficult cases, it can make a world of difference sometimes by doing so. Several family members and my child was taken to nationally renowned places for difficult situations and it did make a difference. US News and World Report comes out with lists of hospitals and doctors and rates them by specialty.

[Χά�ων]

If you have not already and you are able to, then I would strongly consider taking him to a doctor and hospital that is nationally renowned for Chron's disease. As a nurse, I truly believe that in difficult cases, it can make a world of difference sometimes by doing so. Several family members and my child was taken to nationally renowned places for difficult situations and it did make a difference. US News and World Report comes out with lists of hospitals and doctors and rates them by specialty.

This, if affordable, it's not always. And either way Advocate, advocate, advocate. Ask about research projects, or if there is another specialist in a reasonable area who has an interest in it and may bring a new perspective. Ask about a team of specialists reviewing your son's case to provide new insight.

[Ann.without.an.e]

If you have not already and you are able to, then I would strongly consider taking him to a doctor and hospital that is nationally renowned for Chron's disease. As a nurse, I truly believe that in difficult cases, it can make a world of difference sometimes by doing so. Several family members and my child was taken to nationally renowned places for difficult situations and it did make a difference. US News and World Report comes out with lists of hospitals and doctors and rates them by specialty.

 

 

We have an appointment at Chapel Hill with a research doctor who works specifically with Pediatric Crohn's and UC.  I have not been willing to put DS on the meds that his doctor wants him on.  I know that it may come to this, but I also know that the medications for Crohn's can do more harm than the disease itself.  I am hopeful that he can get us into a research study for something new. 

[Χά�ων]

We have an appointment at Chapel Hill with a research doctor who works specifically with Pediatric Crohn's and UC.  I have not been willing to put DS on the meds that his doctor wants him on.  I know that it may come to this, but I also know that the medications for Crohn's can do more harm than the disease itself.  I am hopeful that he can get us into a research study for something new. 

I understand the concern here. One of the medications DS is on has nothing but horror stories associated with it, he needs frequent blood tests and has to take another medication to counter the side affects. For DS the new medication has been a life changer for the better. It was a risk I wish I would have taken a year ago.

[Ann.without.an.e]

I understand the concern here. One of the medications DS is on has nothing but horror stories associated with it, he needs frequent blood tests and has to take another medication to counter the side affects. For DS the new medication has been a life changer for the better. It was a risk I wish I would have taken a year ago.

 

 

The meds that are recommended to DS are the same way, intense with lots of specialized labs, etc.  At one time I said "never" but now I am open to it if we can't seem to make progress any other way.  Lately he is up and down.  He does fine for a while after prednisone but then he flares a few weeks after the pred. wean.  In the long run, Prednisone is terrible for internal organs too though.

[Whereneverever]

I absolutely hate that they can't make meds without some of the scariest side effects. It's so hard to put your kid on something and not knowing what damage the meds are doing. :(

 

Op, I've found really great support from parents with kids who have the same condition as my dd on Facebook. Bonding over medications, doctors, tests, and hospital survival tips can feel morbid but it's so helpful on the bad days to talk to people who get it.