If you had a serious health condition....

[Tress]

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

 

:grouphug:

 

:iagree: Absolutely!

 

:grouphug:

[bettyandbob]

Diet. You may need to avoid family events. Go after good is served. Leave early.

 

My mom couldn't handle gluten free for dd's celiac for a long time and my dad added to that by going about blaming dh's family because it is genetic. It's been 12 years. They are better and dd is older. Dd just won't eat and she won't be persuaded by her grandparents.

 

At 12, you are about to up to social food problems with peers. Dd's friends have to be reminded she can't eat pizza/cake/ etc. she prefers to go to events with no food and not eat. I wish you luck on helping your ds negotiate the peer minefield. I'm sorry about your family.

[bettyandbob]

I think the difficulty is being in a position where you are deciding this for someone else because ultimately that person is the one who has to stick to it.

 

Would I decide this for myself? Yep because I can think of plenty of foods I could eat that are not on that list.

The question isn't about the op deciding for an adult or older teen. I'm sure the op is aware that once her child is older and making most of his food decision it won't be in her control. She is trying to make the best choice for him while she is the one providing food. Like any parenting decision, we make the best choice we can given our circumstances.

[bettyandbob]

One thing I've learned as a parent, is you can't always control everything your kids do. As much as you think you can or should be able to, they are still their own person and will ultimately do things you don't want them to.

 

I would of course try the diet. It surely seems better than the alternative.

I am well aware I can't control everything. Two of my dc are on restrictive diets. I knew early on they would make choices without me. One of the strictly follows the diet. The other does not eat obviously "forbidden food" away from home, but he does not read labels, ask questions or avoid eating unknown food. He gets sick sometimes from it and that doesn't stop him. I guess I hope I laid a good enough foundation for health that 1. His body can bounce back 2. He will decide to get healthy and know how because he's already been taught how at home. I also think keeping his diet as clean as I could meant that he grew physically at a decent pace through puberty--another issue the op has to deal with right now.

 

Often meds stop working, by teaching a child that they how they might live without meds you give the child more than just the choice meds or diet. You are teaching them something they can use if they later do meds without success. To me that's a very important tool for long term health.

[umsami]

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).

 

Many people are doing them themselves.  There doesn't seem to be a lot of risk.  It's something we've considered for one of my kids with GI issues--and would use a family member as a donor.  

 

Blender…strainer…and turkey baster.  (Of course, you don't reuse these.)

 

My gut feeling ;) is that it's something that may have to be repeated every x years for chronic conditions, but who knows at this point.

 

I realize not everybody is comfortable with going at it alone or with FTs themselves, though.  I did a bit of googling and found this site with instructions in case you're curious http://thepowerofpoop.com/epatients/fecal-transplant-instructions/

[xixstar]

I would maintain the diet because it is clearly doing well with him and I think the general idea that if we honor our bodies and listen to their wisdom, we'd all be much more well off in mind and body. Yes, it can be a challenge when others eat so differently, but if it is what heals his body then I would stick with it.

 

I would also look at what else may be going on to hopefully aid in digestive healing to so that adding in some items, even just very irregularly, would be possible. Some general opinion in my school would be that the body should be able to process a certain variety of foods and finding reasons why it is not and dealing with those would be a second step after elimination aids in improvement. But if it works out that those things simply must be eliminated, so be it.

 

So yes, I'd keep the diet and then explore other options to hopefully be able to expand on the diet later.

[kewb]

I would certainly try the diet first.  The worst thing that will happen is it won't help or prove to difficult.

[mommymilkies]

Fecal transplants sound disturbing but the research is promising.  I would definitely go for the diet.  It would be so hard to control any slip ups, but definitely worth trying. 

[elfgivas]

the other thing i like about the diet option is that if some wonderous discoveries occurr, then you haven't eliminated any options. 

 

every time i eat, i am thinking about your ds.  and this morning i remembered how outdoor exercise really helps one of my friends, who is now in his fifties, but who was diagnosed when he was your son's age.  any amount is good, but if he bikes 6 hours a day, he can eat anything without trouble.  six hours is too much for most folks, but any amount can help. 

 

fwiw,

ann

[LostSurprise]

My youngest is on the Ketogenic Diet and multiple medications. That's just how it is for his condition. 

 

Although people's reactions can be a bit strange and keeping to the diet itself has been hard because my son has extreme food preferences and sensitivities, I think it has been a worthwhile struggle. For almost anyone I would recommend trying a natural solution if there is one. While the diet has not solved our problems it has made our problem many times less severe then they could be. 

 

I do know others to whom the struggle was not worth it. A special diet did not do enough good to limit the child and make them unhappy. I still think it was a worthwhile try. 

 

I'm happy the diet is working for you. Keep it up! But please, don't discount medications. There may be a day when you need them. Do the research and keep it in a folder. Keep a list of new ones that come out. Listen when people talk about what side effects they experience. Make note. Few people experience more than a few side effects on a list. Medications can be removed and different ones started. There may be a time when you need to take the chance. Being prepared can mean choosing the least problematic medication when that time comes. 

 

 

 

[Ann.without.an.e]

One thing I've learned as a parent, is you can't always control everything your kids do.  As much as you think you can or should be able to, they are still their own person and will ultimately do things you don't want them to.

 

I would of course try the diet.  It surely seems better than the alternative.

 

 

 

Totally agree.  At any point if I feel that he is not able to stick with the diet and he flares, he will go on meds.  I have asked him to help make this decision and he (with my encouragement) has chosen diet.  The only thing I asked is that he be honest with me if he cheats.  He has never cheated.  If he is uncertain about something he always asks or calls me (if he is away).  He has been amazingly disciplined.  I think it helps that he was so very sick and the change in diet (not medication) is what made him better.  He can clearly see the change in his health.  It is why I wanted to try diet first (before meds).  If he could be better on meds and eat whatever then he would be hesitant to stick with a diet.  I think the diet is better for his long-term health.  I must say, I am incredibly proud of him for being so disciplined.  He is the kid who LOVES food and has the least natural inclination toward healthy eating of any of my four kids.  

[Ann.without.an.e]

the other thing i like about the diet option is that if some wonderous discoveries occurr, then you haven't eliminated any options. 

 

every time i eat, i am thinking about your ds.  and this morning i remembered how outdoor exercise really helps one of my friends, who is now in his fifties, but who was diagnosed when he was your son's age.  any amount is good, but if he bikes 6 hours a day, he can eat anything without trouble.  six hours is too much for most folks, but any amount can help. 

 

fwiw,

ann

 

 

This is our weakness.  I really want to get more exercise into his life.  He doesn't have any sports.  He was too weak physically to keep up for a while there.  I think he would be better now, but he is getting too old to join team sports.  I keep thinking of a way to get him active without it seeming like a chore.

[Ann.without.an.e]

Many people are doing them themselves.  There doesn't seem to be a lot of risk.  It's something we've considered for one of my kids with GI issues--and would use a family member as a donor.  

 

Blender…strainer…and turkey baster.  (Of course, you don't reuse these.)

 

My gut feeling ;) is that it's something that may have to be repeated every x years for chronic conditions, but who knows at this point.

 

I realize not everybody is comfortable with going at it alone or with FTs themselves, though.  I did a bit of googling and found this site with instructions in case you're curious http://thepowerofpoop.com/epatients/fecal-transplant-instructions/

 

 

 

It really isn't a bad idea if I can get over the ick factor.  I have never, ever had a single bowel problem and I have no digestive issues.  I would probably be a good donor for him if I could get over the ick factor :/

[bettyandbob]

This is our weakness.  I really want to get more exercise into his life.  He doesn't have any sports.  He was too weak physically to keep up for a while there.  I think he would be better now, but he is getting too old to join team sports.  I keep thinking of a way to get him active without it seeming like a chore.

 

Do you have a community center/rec center near you? Both the Y in my town and the community center and the next town have personal trainers that are good with/specialize in kids or teens. The neighboring town's community center is cheaper. It also has teen fitness classes. You might consider kids fitness classes along some personal training sessions to build strength and endurance while you are considering a sport to pursue. At 12 he is unlikely to be able to jump into basketball or baseball, but as his strength improves you might look into martial arts, fencing, dance (our studio loves boys), cycling, running, even triathlon. 

[UncleEJ]

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 have a couple questions for you, Charleigh, if you don't mind. I also have Crohn's Disease and I am curious how you came to the diet your son follows. Was it trial and error? Or a specific diet you read about? Also, how do you know that he is, indeed, in remission while following this diet (not a snarky question, I am truly curious)?

 

In response to your son's condition, I assume you have tried (or at least considered) other medications before Remicade was suggested. There are many options, as I am sure you already know :). If not, it seems a bit extreme to me that Remicade was the Dr first choice unless he is very, very ill. My understanding is that Remicade tends to be a last ditch effort.

[LifeLovePassion]

I was diagnosed at age 3, I was super sick at age 10, hospitalized for about 6 weeks, ended up with a colostomy/most of my large intestine and appendix removed. I had the colostomy for 2 1/2 years then had a reversal. I have modified my diet a ton in the past 10 years, and am still making changes as I am not good at cold turkey. I wish my parents had known more about diet options.  

 

I have had many medicines over the course of my disease. I did have remicade for 10 months (probably 8-9 years ago now), and was on Imuran for a while too. I have been med free for about 2 years now. Things mostly seem in check. My latest scope showed mild activity, but honestly I don't know what "normal" is or should be for me.

 

I have pictures of me on prednisone as a 10 year old that I should hang up as a reminder to eat better/be faithful to some diet modifications.

 

Anyways, while I am not opposed to meds if needed, but as much as I can make changes to my diet , I will. If I think there is a problem, I am more strict with my limitations. I have noticed the more I eliminate certain foods that when I do have them again, I feel icky. Not terrible, but just think "oh, I shouldn't have eaten that"

[Ann.without.an.e]

I have a couple questions for you, Charleigh, if you don't mind. I also have Crohn's Disease and I am curious how you came to the diet your son follows. Was it trial and error? Or a specific diet you read about? Also, how do you know that he is, indeed, in remission while following this diet (not a snarky question, I am truly curious)?

 

In response to your son's condition, I assume you have tried (or at least considered) other medications before Remicade was suggested. There are many options, as I am sure you already know :). If not, it seems a bit extreme to me that Remicade was the Dr first choice unless he is very, very ill. My understanding is that Remicade tends to be a last ditch effort.

When he was first diagnosed, I actually made a post here on the WTM with some questions. Several with crohns, UC, or with family members who had those responded recommending the book Breaking the Vicious Cycle. That is the book for the SCD diet. We started there and we saw a great improvement. We had tweaked the legumes and dairy out of that diet and it helped but DS was still struggling with high inflammatory markers. I read about the auto immune version of the paleo diet and we transitioned to it. That is when we began seeing some progress in lab work. Do we know 100% that something horrendous isn't going on inside? No. But we can look at symptoms. He has put on height and weight, he is stronger, he is cramp free, and his BM's have gone from a bazillion times a day of pure watery mess to 1-3 times of not watery. He also has no joint pain. He sees his GI every 4 months and we will keep a check on labs, symptoms, etc. He will most likely have another scope this spring/summer to see how the inside looks.

[UncleEJ]

When he was first diagnosed, I actually made a post here on the WTM with some questions. Several with crohns, UC, or with family members who had those responded recommending the book Breaking the Vicious Cycle. That is the book for the SCD diet. We started there and we saw a great improvement. We had tweaked the legumes and dairy out of that diet and it helped but DS was still struggling with high inflammatory markers. I read about the auto immune version of the paleo diet and we transitioned to it. That is when we began seeing some progress in lab work. Do we know 100% that something horrendous isn't going on inside? No. But we can look at symptoms. He has put on height and weight, he is stronger, he is cramp free, and his BM's have gone from a bazillion times a day of pure watery mess to 1-3 times of not watery. He also has no joint pain. He sees his GI every 4 months and we will keep a check on labs, symptoms, etc. He will most likely have another scope this spring/summer to see how the inside looks.

That is amazing! Good job finding something that works and thank you for sharing. You've given me some food for thought.

[Momling]

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.

Keep in mind the population of the forum you're on. I've noticed that health oriented forums tend to have a high percentage of people who are either seeking out initial diagnoses, needing support because they're unhappy with their doctors or treatments, or relapsing and wanting new ideas. People who have a well-managed disease and are happy with their treatment just don't need much support. It's easy to read post after post of anxious reports of a failed treatment and assume that it won't work, but the folks for whom it does work may just not be needing the support of an online message board.

[Ann.without.an.e]

Keep in mind the population of the forum you're on. I've noticed that health oriented forums tend to have a high percentage of people who are either seeking out initial diagnoses, needing support because they're unhappy with their doctors or treatments, or relapsing and wanting new ideas. People who have a well-managed disease and are happy with their treatment just don't need much support. It's easy to read post after post of anxious reports of a failed treatment and assume that it won't work, but the folks for whom it does work may just not be needing the support of an online message board.

 

 

I know that people tend not to complain when things are good and I do keep that in mind.  The forum I am on is not a health oriented forum and it actually tends to be anti-natural and pro-med.  The people there aren't even thinking about diet, they are just having issues with the meds and asking, "what next"?  So there isn't a pro-natural bent there at all.  In fact, it is very unpopular to choose diet in lieu of meds.

[ficbot]

My SO has chronic kidney disease (from birth) and has been advised by his doctor to severely limit protein. We are vegetarian so that is easy to do for him---I keep flash-frozen beans of various types in the freezer to mix in at the last minute for me, and make stuff like pasta, rice bowls and sandwiches he can eat plainer. His dr is always pleased with how his tests look. But we get a lot of flack from people who find out he is vegetarian and go 'but where do you get your protein?' A lot of foods have protein anyway. Even broccoli has protein. He does get enough for his needs, but people always like to be the armchair nutrition police :-) He does get very annoyed sometimes when people who don't know his situation make judgements about if.

[Ann.without.an.e]

My SO has chronic kidney disease (from birth) and has been advised by his doctor to severely limit protein. We are vegetarian so that is easy to do for him---I keep flash-frozen beans of various types in the freezer to mix in at the last minute for me, and make stuff like pasta, rice bowls and sandwiches he can eat plainer. His dr is always pleased with how his tests look. But we get a lot of flack from people who find out he is vegetarian and go 'but where do you get your protein?' A lot of foods have protein anyway. Even broccoli has protein. He does get enough for his needs, but people always like to be the armchair nutrition police :-) He does get very annoyed sometimes when people who don't know his situation make judgements about if.

 

 

My middle dd is a vegetarian by choice.  To be honest, she is super healthy.  She is the one that doesn't have hashimoto's and she doesn't have crohn's.  She is probably my healthiest child.  She chose, at only 5 years old, to be a vegetarian.  Animals are a love for her and it just made her sick to eat them.  Yes, that is a funny diet to add in to our paleo family mix. We make it work.