If you had a serious health condition....

[Ann.without.an.e]

but you could stay in remission and be practically symptom free as long as you never ate the following....

 

all grains (rice, corn, wheat, oats, etc)

sugar

legumes (beans, peanuts)

nuts

eggs

nightshades (potatoes, peppers, tomatoes, eggplant, etc)

dairy

 

 

The only other option is medication that has serious side-effects (4+ pages of side effect after side effect, included kidney and liver damage) and the medication doesn't always work.

 

Could you permanently do this? (that means no cheating - ever! Not Birthdays, not Christmas, etc)

 

This is where DS is right now. Some people in our lives are supportive and others say it is too hard and is cruel and that we should at least attempt the meds. Just curious what the Hive's opinion is?

 

ETA: this diet is not something we are just considering. DS has been on this diet (in varied forms) for over a year.

[mytwomonkeys]

For me, I would choose option 1. I would not choose potentially harmful medication over strict dietary changes. I'm pretty creative in the kitchen and could find substitutes for things that I loved. Restrictions doesn't equal bland :)

[Zebra]

I can't possibly understand where you are coming from, but if it were me I would try the diet first.   You know exactly what he can't eat, and the meds have serious side effects and don't always work.  

 

There is no reason why you can't try the meds later if you find the restrictive diet impossible.   At that point you will feel like you tried your best to avoid meds, and who knows the diet may work.

[Susan C.]

Have you done the GAPS diet? Just curious, depending on what your ds has, it is supposed to heal the gut so those foods can eventually eaten.

 

And, yes, I would go the diet route.  As your son gets older, let him become more and more a part of managing the diet so he can take it over.

[prairiewindmomma]

We have several friends who eat like option 1. Food issues are socially challenging, but #2 seems untenable to us. You still have all meats, all fruits, and most veg. That sounds like a more varied diet than a lot of the rest of the world's citizens. ;)

[Jean in Newcastle]

At some point he will decide on his own if it is too hard and restrictive and if he wants the meds.  Until then, if you are able to give him meals that fit his parameters, I think it is absolutely a good idea to stick with the dietary approach.  

[prairiewindmomma]

Fwiw, the people who gave me grief when I went gfcf/no food dyes were the ones who don't cook themselves and rarely eat veggies.

[Jennifer in MI]

How old is your ds?  At a certain age/maturity, I'd take his opinion into consideration when making the decision.  

 

If it's a really young child I'd also give the diet a chance.  If it is really hard, I'd consider the drug.  (And I could see where this would get difficult - I have a son who has been allergic to nuts for as long as he can remember.  Now that he's a teen, he keeps taking chances.  He's driving me nuts.  If there were a drug that could help him, I'd do it because it could possibly save his life.)

[Ann.without.an.e]

Fwiw, the people who gave me grief when I went gfcf/no food dyes were the ones who don't cook themselves and rarely eat veggies.

 

The people who give me grief eat out 75% of the time.

[Spryte]

Yes. View it like an allergy. You can do this.

 

FWIW, DS is severely allergic to: wheat (true allergy to wheat, not a gluten issue); nuts; dairy; seeds; peanuts; all raw foods.

I am allergic to eggs; shellfish; spinach; and celiac. We don't keep anyone's unsafe foods in the house. Oh, and I have to eat under 15 gms of fat daily, and low sugar for another medical condition. So it's possible. Just hard.

 

Good luck!

[Ann.without.an.e]

How old is your ds? At a certain age/maturity, I'd take his opinion into consideration when making the decision.

 

If it's a really young child I'd also give the diet a chance. If it is really hard, I'd consider the drug. (And I could see where this would get difficult - I have a son who has been allergic to nuts for as long as he can remember. Now that he's a teen, he keeps taking chances. He's driving me nuts. If there were a drug that could help him, I'd do it because it could possibly save his life.)

 

12 and he is completely faithful to the diet. 99% of the time he would choose diet over meds. He has his moments of weakness when he craves something and asks questions about meds.

[swellmomma]

Until my child was old enough to make an informed educated decision on their own I would stick with the dietary approach and tell anyone else complaining about it to kiss my patootie.  Once child is old enough to decide that the ball is in his court on which route to go. I get that the diet sucks, it is challenging and leaves a lot out.  Many people think kids/teens must have unfettered access to candy, sweets, hot dogs, pizza, crap "foods" and declare the child hard done by if you want to limit or eliminate those things at the best of times. Then add in what people are told are healthy foods and they figure you must be outright starving him for serving something else.  If he is remaining healthy on the modified diet then keep doing the diet and ignore the naysayers.  Or ask them which of them would be willing to give up their kidney or liver for your son if the medications put him in failure due to damage.  Medications have their place, they should always be secondary to modifications of diet, environment or whatever other natural changes can be made imo.

[Rachel TX]

I would choose the diet option. My family has already eliminated half of those categories for medical reasons, and I know people who have a restricted diet like this one. It's a steep learning curve but doable. We almost never eat out and try to plan social occasions that aren't centered around food.

[Ann.without.an.e]

 If he is remaining healthy on the modified diet then keep doing the diet and ignore the naysayers.  Or ask them which of them would be willing to give up their kidney or liver for your son if the medications put him in failure due to damage.  

 

 

Haha, love this :D

[Chris in VA]

I'd do diet as long as I had control. Did he always eat this way? I've found people don't miss what they haven't had--but it sounds like he's had stuff before.

 

I admire your parenting on this issue. You are not taking the easy way out. Way to go.

[Ottakee]

I would do the diet and then if he really wants at some point to try the meds, then I would schedule an appointment for 1-2 weeks out to talk to the doctor about it...........and that would give him time to consider if he still wants to try the meds or if it was just a fleeting idea.

 

Over time, they might come up with much better meds for his condition or other treatments and/or the foods he CAN eat might become easier to deal with.

 

Right now we are opting for meds for our girls.  The doctor did offer us the Ketogenic diet as an option but to start that as teens would be VERY VERY difficult and the benefits of it over the meds aren't really clear.  If they were infants/toddlers we might have tried it.  For us though the meds are working quite well and right now we have no side effects.  It is a constant balance though.

[Ann.without.an.e]

I'd do diet as long as I had control. Did he always eat this way? I've found people don't miss what they haven't had--but it sounds like he's had stuff before.

 

I admire your parenting on this issue. You are not taking the easy way out. Way to go.

 

He has eaten this way for just over a year. Thanks :)

[Random]

I'd do the diet.  Absolutely, without a doubt.  He can choose the meds later, if he wants to.

 

:grouphug:

 

 

[Mrs Mungo]

I think it would depend upon what it was. For example, I know that kind of diet is sometimes recommended for people with hypothyroidism, but despite the possible side effect list, most people don't have a ton of side effects from thyroid meds, which have been around for a long time.

[twoxcell]

Yes I could and would do the diet if I needed to. It would be hard I know because I have gone GF/DF for health reasons and that is hard enough. I also do not cheat ever intentionally it isn't worth the momentary pleasure for days of discomfort.

[elfgivas]

i'm not sure what we're talking about, but i am wondering what happens if he slips up and has one of those things? 

 

is he sick for a while and then can bring it back under control or ??? 

 

if it won't kill him or significantly shorten his life if he slips up, then i would definitely go with the diet.  there is still a lot of really good stuff that is possible. 

 

hth,

ann

[Ann.without.an.e]

I think it would depend upon what it was. For example, I know that kind of diet is sometimes recommended for people with hypothyroidism, but despite the possible side effect list, most people don't have a ton of side effects from thyroid meds, which have been around for a long time.

 

 

Yes, and I am on that diet because of Hashimoto's but I also take the meds.  DD also takes thyroid meds.  Thyroid meds are not big deal and I am not scared of those.

 

These meds, the ones that the doctor suggests for DS.....chemo meds (but he doesn't have cancer, this is just the standard drug) with 4 pages of very scary side effects. 

[Mrs Mungo]

Gotcha, I was just sort of speaking generally to the sort of meds I would be okay with taking long term over doing a diet. I wasn't trying to get details. These decisions can be so, so difficult when serious health issues are at stake. Ugh.

[Ann.without.an.e]

i'm not sure what we're talking about, but i am wondering what happens if he slips up and has one of those things? 

 

is he sick for a while and then can bring it back under control or ??? 

 

if it won't kill him or significantly shorten his life if he slips up, then i would definitely go with the diet.  there is still a lot of really good stuff that is possible. 

 

hth,

ann

 

 

It sets him back for a day or two. The repetitive exposure to those foods is the problem.  

 

 

For example, we went on a special trip and I let him try a candy apple.  I was thinking since it was gluten and dairy free it might be ok?  It was a risk, but it was vacation and we were thinking just the one treat.  He ate it and within 30 minutes he was vomiting and terribly sick.  Ruined the whole day, but he bounced back without meds.

[Ann.without.an.e]

Gotcha, I was just sort of speaking generally to the sort of meds I would be okay with taking long term over doing a diet. I wasn't trying to get details. These decisions can be so, so difficult when serious health issues are at stake. Ugh.

 

 

It isn't a big deal.  I wasn't trying to be elusive about what he has, I just didn't want it to be the focus of the discussion.  He has Crohn's disease. 

[sbgrace]

Why do you give these people room to give their opinions on your choices a year later?

[Ann.without.an.e]

Why do you give these people room to give their opinions on your choices a year later?

 

 

It rolls off my back like water. Seriously, it does.  I could.care.less.  I was just curious what the Hive opinion is  :D  Sometimes it is good to hear that you are/aren't crazy and off your rocker.  haha

[bolt.]

First, I wouldn't worry about spectator!s opinions, and no one would be welcome to second-guess me or call me cruel. Just, no. That isn't going to fly with me. It isn't a vote. I collect my data, I make my decisions, and spectators mind their own business.

 

However, if I were doing research and soliciting data, I'd be interested in a rational discription of other points of view... And I'd ask for them.

 

So, since you're asking, I'd be very clear on the difference between "potential side effects" and "side effects" that are highly likely or always present with the medication.

 

Having a wide variety (a long list) of potential side effects wouldn't phase me much -- if they were not terribly likely. On the other hand, one side effect would be enough if it was serious and very likely to actually occur.

 

Therefore, I don't have enough info to accept or reject the medication you are considering.

 

I would tend to lean towards the medicine, because I think a lot of joy in life comes from enjoying food. I wouldn't want to cut all of that out of a child's life.

 

If there is an option of 'lower doses of medicine on a diet that somewhat restricts those substances without going 100%' -- that would appeal to me.

 

It would also depend what was science (tested med, blind studies etc) and what (if anything) was folk wisdom. In general, I think there is a lot of wisdom in folk wisdom and unconventional medicine, but this decision is too important to try to address thtough pseudo-science. I'm suspicious (but I might be wrong) that a diet would state the goal/limit of entirely eliminating "sugar" while allowing fruit, since there isn't a metabolic difference between sugar and fructose. A scientific description would, I think, discribe that limit/goal differently.

 

I could give a better answer if I understood more about 1. how severe the likely side effects are and also 2. how likely/unlikely the severe potential side effects are.

[magnificent_baby]

He will need his liver and kidneys the rest of his life. Diet hands down (if that truly controls the disease without causing further damage without the meds). Do not worry what other's opinions are (unless it's his doctor, LOL)

[Ann.without.an.e]

He will need his liver and kidneys the rest of his life. Diet hands down (if that truly controls the disease without causing further damage without the meds). Do not worry what other's opinions are (unless it's his doctor, LOL)

 

 

His doctor isn't thrilled about our choice not to medicate, but he is supportive as long as DS's labs, exploratory procedures, and symptoms are okay.  He's a pretty good guy - we'll keep him :)

[itsheresomewhere]

I would try the diet but I would keep an open mind on the meds.  

 

If this helps- One of DH's friends had to do chemo drugs for a medical condition over a year ago.  It changed his life.  No matter how he stuck to his diet, he would have days of being miserable.  He is extremely natural/organic and this was not an easy decision for him.  He decided to try them when he realized how much food controlled his life.  

[trulycrabby]

Definitely the diet. The longer he can stay off the meds, the better for his body.

[Ann.without.an.e]

I would try the diet but I would keep an open mind on the meds.  

 

If this helps- One of DH's friends had to do chemo drugs for a medical condition over a year ago.  It changed his life.  No matter how he stuck to his diet, he would have days of being miserable.  He is extremely natural/organic and this was not an easy decision for him.  He decided to try them when he realized how much food controlled his life.  

 

 

This is why we sometimes consider meds.....it does feel like he is limited by food and that food somewhat controls his life.  We have been open minded.  We have considered the options and we even drove hours to see a special research doctor (per his specialist's recommendation).  I mainly struggle with meds because 1)side effects  (2) I am on a forum where other parents with kids with this condition aren't having success with meds.....these kids are on the meds and having surgery after surgery and they are so sick and DS is doing so much better than those kids.  Now, in that mix there are a few kids who do great with meds - but I would say that is the exception, not the rule.

[itsheresomewhere]

This is why we sometimes consider meds.....it does feel like he is limited by food and that food somewhat controls his life.  We have been open minded.  We have considered the options and we even drove hours to see a special research doctor (per his specialist's recommendation).  I mainly struggle with meds because 1)side effects  (2) I am on a forum where other parents with kids with this condition aren't having success with meds.....these kids are on the meds and having surgery after surgery and they are so sick and DS is doing so much better than those kids.  Now, in that mix there are a few kids who do great with meds - but I would say that is the exception, not the rule.

 

 

P got to the point he could only eat 5-6 things.  He was so unhappy and he dreaded eating.  He still sticks to a gluten free diet.  He did make it for a long time on the diet before he tried the meds.

[Ann.without.an.e]

P got to the point he could only eat 5-6 things.  He was so unhappy and he dreaded eating.  He still sticks to a gluten free diet.  He did make it for a long time on the diet before he tried the meds.

 

 

Can I ask what meds he is on?  You can inbox me if you don't want it in the open.  

[elfgivas]

that helps a lot.  have you read the university of alberta study on crohns?  they have many, because there are many folks in alberta who have crohns.  its a hot spot. 

they are coming up with new things that work all the time.  flip side is that there are some really OLD drugs that can work pretty well.  (i am on one now that was originally an arthritis drug, and is Very Old... but its working for me :). 

 

VSL#3 is one of their studies.  its a probiotic.  it has helped me and several of my friends with crohns.  its a small sample size, but it didn't NOT help any of us. 

 

if the drug under discussion is remicade, i understand your hesitation.  i would hesitate, too (and have, for years).

 

i mentioned the psyllium.  it is usually a really bad thing for crohns patients.

 

hth,

ann

[Ann.without.an.e]

that helps a lot.  have you read the university of alberta study on crohns?  they have many, because there are many folks in alberta who have crohns.  its a hot spot. 

they are coming up with new things that work all the time.  flip side is that there are some really OLD drugs that can work pretty well.  (i am on one now that was originally an arthritis drug, and is Very Old... but its working for me :). 

 

VSL#3 is one of their studies.  its a probiotic.  it has helped me and several of my friends with crohns.  its a small sample size, but it didn't NOT help any of us. 

 

if the drug under discussion is remicade, i understand your hesitation.  i would hesitate, too (and have, for years).

 

i mentioned the psyllium.  it is usually a really bad thing for crohns patients.

 

hth,

ann

 

 

can I ask what med you are on?  DS's GI is stuck on remicade or 6-MP - both black label meds, both scary (in my opinion).

 

I just read that psyllium is great for Crohn's.  I just bought some today - shoot!

 

I have never read the Alberta studies.

[swellmomma]

my diner boss goes for remicade shots in the city regularily for her crohn's, she seems to be sick with something or rather all the time.  My nana who had crohn's colitis never used remicade, she was on steriods and had many many surgeries to remove sections of intestine's and one point turn it inside out and stitch it back in. My cousin as far as I know does not use remicade for his crohn's either, he uses a modified diet and some other meds and seems to be mostly fine with the occasional bad bout. 

I think like most disease's the severity depends on the person.  For some remicade is exactly what they need, others diet is enough, and for others there is some middle ground of some modifications and some meds but not necessarily remicade itself.

[umsami]

How common are the side effects? Just because they list a gazillion does not mean that they are common.  

 

I would think the diet would be very difficult to do long-term for everybody.  However, I think if you knew the meds were not effective, it would make it easier to stick to it.

 

Just read that you're dealing with Crohn's… I too have heard good things about VSL3.

 

Also, are there any clinical trials regarding fecal transplants? That may hold some promise too.

http://boston.cbslocal.com/guide/bidmc-gi-fecal-transplants-may-help-patients-with-crohns-disease-and-other-intestinal-disorders/

[Ann.without.an.e]

How common are the side effects? Just because they list a gazillion does not mean that they are common.  

 

I would think the diet would be very difficult to do long-term for everybody.  However, I think if you knew the meds were not effective, it would make it easier to stick to it.

 

Just read that you're dealing with Crohn's… I too have heard good things about VSL3.

 

Also, are there any clinical trials regarding fecal transplants? That may hold some promise too.

http://boston.cbslocal.com/guide/bidmc-gi-fecal-transplants-may-help-patients-with-crohns-disease-and-other-intestinal-disorders/

 

 

Fecal Transplants are very promising.  Unfortunately, they are not accepted wide-spread yet.  Before a pediatric specialist will try something, it has to be around for a while and it has to be tested on a bazillion children (in my experience).

[Mommyfaithe]

but you could stay in remission and be practically symptom free as long as you never ate the following....

 

all grains (rice, corn, wheat, oats, etc)

sugar

legumes (beans, peanuts)

nuts

eggs

nightshades (potatoes, peppers, tomatoes, eggplant, etc)

dairy

 

 

The only other option is medication that has serious side-effects (4+ pages of side effect after side effect, included kidney and liver damage) and the medication doesn't always work.

 

Could you permanently do this? (that means no cheating - ever! Not Birthdays, not Christmas, etc)

 

This is where DS is right now. Some people in our lives are supportive and others say it is too hard and is cruel and that we should at least attempt the meds. Just curious what the Hive's opinion is?

 

ETA: this diet is not something we are just considering. DS has been on this diet (in varied forms) for over a year.

I do this...permanently. No cheats....and yes, I can do it. It is fine. My palate has changed. I am not sick anymore. After YEARS of being sick, I am not sick. It is worth every cookie I pass by. It is worth every slice of pizza! I FEEL GOOD!!! It is not cruel. I am going to put ds on this diet as well. His symptoms remind me of me before I was diagnosed with auto immune issues...I don't want his body to be damaged as mine was. Meds not only didn't help, they hurt.

 

Good luck!

Faithe

[scootiepie]

At his age he will soon hit a huge growth spurt and hormone surge so I would definitely want to know how/if the meds would affect that -  also if choosing diet alone, can he get enough food/calories in to support puberty?   Just some random thoughts I had. 

[Slartibartfast]

I do actually live with this sort of condition. But I only am Dairy-free.

 

The medication for my condition is extremely expensive and requires regular liver testing. I was on the meds for a bit, right after I was diagnosed. I have been dairy free for some time and no longer need the meds. I do cheat now and then but I have to space those incidents or I will have a relapse.

[Susan C.]

google Primal Defense and Crohn's

 

Jordan Rubin, the maker of Primal Defense almost died of Crohn's, he is the author of The Maker's Diet.

[elfgivas]

i am on azulfidine.  like any meds, there are lists of side effects, none of which i have.  (and i've been on it for years now) 

 

re the pysillium.  check with his doctor.  my understanding (which is experiential not medical) is that it is great except when there is a blockage.

 

i did food trials for years, and one of the things i found was that food combinations matter a ton, as do cooked vs. raw.  even yet, i have balanced days, not balanced meals. 

 

ie.  pasta and cooked veggie sauce good, pasta and salad bad.  any pureed veggie soup works for me, but not for everyone.  when i am in remission, i can have fresh salad, as long as its baby spinach and not lettuce.  who knows why?  i just keep a list.

 

sugar no, honey yes. 

 

nuts... well there lies a tale.  peanut butter is fine; fresh nuts are not.  ie.  its a texture thing for me, or rather, for my gut.

 

and on and on....

 

good luck!

ann

[elfgivas]

i found that being part of studies really improved the care i received.  and i learned a lot about my body, and my reactions to things.

 

would you/he consider being part of a study?

 

ann

[LifeLovePassion]

As someone who has had crohns since age 3...go for the diet. I can share more when i am not on my phone.

 

so, put of curiosity, what is left to eat?

[klmama]

Sounds like just meat and veggies. It may be worth adding in good probiotics and maybe even digestive enzymes. If I remember correctly, biotin is supposed to help heal the gut, too. I'm sure Dr. Google could help you find info on that. If it were my dc, I would try the diet and gut-healing supplements for a few years, in hopes of helping him get well enough to handle whatever experimentation he might attempt down the road.

[Ann.without.an.e]

For those who have mentioned it, we already supplement with good probiotics, chewable iron, and a multi vitamin.

[Ann.without.an.e]

At his age he will soon hit a huge growth spurt and hormone surge so I would definitely want to know how/if the meds would affect that - also if choosing diet alone, can he get enough food/calories in to support puberty? Just some random thoughts I had.

Before being officially diagnosed in November of 2012, he had dropped from 95 pounds to 68. His growth had halted (we didn't know why he had slowed in growth). In the 14 months since starting the diet he has gained to 105 pounds and grown from 4'10.5 to almost 5.3. That seems like really good growth to me :)