Do you tell your child's ped. gi about taking natural products?

Hi everyone! I've been a member for a couple of weeks, but now I see there are several other parents like me with kids with UC. My son was diagnosed with UC in April 2010 at 5 years old. He is now 6 1/2 and we have an appt. with a new doc next week. I am changing doctors because the communication and understanding with his current doc is not going well. Here's my question. do you tell your child's ped. gi. about natural products you give to your son? Like many of you out there, I was desperate to heal my son and turned to the internet for advice. I wish insurance covered Naturopathic docs, but, as far as I know, they don't. at least mine doesn't. My son has been on a low dose of prednisolone for 8 months, and never been off of it for 1 year. he is currently on 2ML(6MG) pred. and 50 mg imuran. natural meds: slippery elm, scd with probiotic yogurt for over 6 months, and vsl#3 for 1 week, salmon fish oil for 2 weeks. he was hospitalized and very sick two times last year, and was told he could face surgery next. He has greatly improved over the last 4 months, but, because we have not completely gotten him off of pred. his doc and a 2nd opinion doc want to do surgery. i kept telling his current doc that 1/2 ml taper a week was too much and she would not listen! i've since been reducing him by 1/4ml every week for 2 weeks, and he has been doing just fine! i'm scared of when he gets below 1ml as he flared 3 other times this past 5 months and we had to go back up. of course, because of this, the doc's want to do surgery. my husband and i are not opposed to to surgery if it got too bad and of course to put him out of suffering, but, for a month now he has been in remission and his labs look great! he has not had any pain in over 5 months! vitamin d was never brought up by his doc, but now i read from others that if you are on pred long term you should take it? anyone ideas on this? my son has not complained about any joint or bone pain....until we get to the very, very, low dose of pred, then he complains of his feet and lower legs hurting in the past. he is allergic to all 5ASA's as he got diagnosed with Fanconi Syndrome(affects the kidneys) from Asacaol. thank the Lord it was reversed) and Remicade 7 treatments that only helped for 3 weeks at a time, then, once we tapered the pred., he flared. i've had two eye exams on him in 6 months, and his eyes are healthy. i don't feel my son has been given a fair chance to get off the pred and see how he does before talking about surgery. do the docs make a lot of money off this surgery? i'm beginning to wonder. should i tell the new ped. gi about the natural meds we are doing? or, wait and see if he is open minded to this. when i tried to tell his current doc about trying natural treatments, she dismissed it as "alternative" and seemed kind of upset. i actually feel that what we have been doing has helped a whole lot more than what the docs have done, except for the pred. as it does work, but we have to get him off it! because my son is so young, i want to keep him under a doctors care just in case he gets worse, but i don't want another doc who does not believe in any natural treatment or won't listen to what i say. i am also very scared of side effects and infections he could face if he does get a total colectomy. i've read good and bad stories on this, but, mostly bad. thank you everyone for your replies in advance and sorry for the long rant. I've been crying everyday and fear for my son and just want him to have a normal, healthy life. i hide it well in front of him, but, you know how it is.

thanks for the advice Sue.

Hi IBDISTHEPITS! I'm so happy to have found someone who can relate to my son's health issues. I had opened the question about whether to tell the new doctor about natural treatments because the current doc did not want to know about them and pretty much "dismissed" me. it was embarrassing and made me feel small. I plan to tell the new doc about all his meds natural and conventional, but guess i am afraid he may "dismiss" me too. it's sad to me that some doctors although I know they are medical doctors, are not more opened minded these days to natural methods. i know some are, i just haven't found one yet. in my opinion, if the med combo of conventional and natural are going well, then, why not!!?? this new doc got excellent reviews for showing compassion, so, i am keeping my fingers crossed. i would go to a naturopath, but, i already have thousands of dollars in co-payments from Remicade, that we just can't afford it right now to get more in medical debt. we tried Canasa, but, it made things worse and he would run from us when we had to do it. poor thing. he is allergic to all mesalamine/sulfa drugs. when we first started SCD, he was in a horrible flare and we thought the yogurt was making things worse. but, since then he has done very well on them and we only buy lactose free cheese now. i started giving him 1 VSL#3 tab in the am as recommended on the website since he is not flaring. it's too soon to tell whether the vsl#3 is truly working yet, but, he had no side effects. too early to know about fish oil too, but, no side effects and good omega 3's for his body. i can't get him to eat fish often. i really hope the new doc will have some good advice and be willing to change things up if necessary. the scariest part is him agreeing to a very slow taper on the pred that we have been doing. the doctors all freak out when they find out that he has been on it for a year. but, i'd much rather go slow and get him off it completely then risk another flare that would lead to surgery. i just can't understand why two doctors now have told us he needs surgery because he is pred dependent, even though they tell me that he would have to come off of it whether he has surgery or not. they would rather go ahead and plan a surgery then try another technique to get off the pred. by the way, the 2nd opinion doc agreed completely! with the first doc. big surprise. i'm not going to do any more "opinions" just going to search until i find a great doctor! is your daughter currently in remission? i hope the best for you both. it is just so hard and emotionally draining to see your child go through this as you know.

My son's GI suggested probiotics but changes the subject when i bring up other alternatives. just try to sound confident when telling them what things you want to try and not try. the dr.s may know more about the medicines, but you know more about your child's individul situation.

don't be afraid of the surgery. it is a life saver for many, my son included. the doctors may feel that your son will need surgery eventually, better while he's relatively healthy than in an emergency situation, where his options would be limited. may not be a bad idea to have that discussion and look around for a good surgeon before you actually need one. you can always persue the naturals in the mean time also. good to have all your bases covered. i hope your son stays in remission.

Sorry for all you troubles. We experienced similar a similar attitude concerning anything natural, including probiotics. We changed Doctors to one who is much more receptive to trying different things including natural/dietary treatments and it lowered stress levels for everyone. I believe you should always be honest with your Doctor about what you are doing. I also believe that you will be much more in tune with your son's symptoms than any Doctor could be.

Enemas worked well for us and helped us taper off pred. We also tapered slowly down to a maintenance (2-3 times a week) level of enemas.

VSL#3DS (the packets) twice a day also helped. We are now tapered down to one packet a day - but this is still 950 Billion CFU of the probiotic formula. Please make sure you are giving him enough VSL#3 - two packets a day is recommended for a flare and I think this should be continued until completely tapered off of pred. He is a little smaller than my daughter, so maybe 1/2 a packet in morning and 1/2 a packet in the evening. We mix the VSL#3DS with applesauce, cinnamon and psyllium seed powder and she thinks it tastes fine.

We think that pysllium seed powder really helped our daughter to get into remission. It has shown shown to raise butyrate (long chain fatty acids) levels in the colon and reduce inflammation. We also think psyllium seed powder works well with VSL#3DS.

We also think the Zinc supplement helped.

It is always hard to tell what exactly is helping, because we can rarely be patient enough to try one thing at a time while our children are sick. Our approach was to sort of shotgun treatments in, especially if there was not threat of adverse reaction and the treatment didn't cause stress because of taste, frequency etc.
The change of Doctors also helped our Daughter. She is now very comfortable seeing her GI.
Best of luck with everything.

UCPop

Hello, i exactly know how hard it is to take care of some one with UC especially when that person is your son. your post actually made me remember a lot of things. mt mom was telling me about the same problems that she faced during my childhood. from thinking about surgery and which kind of food that might help and all the things you discussed. I'll actually try to advise you with some things that might help as i was diagnosed with pan colitis since I'm 2 years old.

starting with the surgery, that idea was one of the prohibited ideas for my mother. she was actually neglecting this idea even when the doctor discussed that as it is the last option on the table. i was on 20 mg prednesolone, imuran and a large dose of 5ASA's(Remicade and Inflixmabe were not discovered yet), all of those pills when i was 8 years old. The doctors thought that this is a stupid decision from my mother and that kind of drugs at young age might cause problems for me in the future. But when i grow up and i understood how things work, i didn't know how much i should be thankful for my mother's decision about the total colectomy surgery. her reason for rejecting the surgery was that she didn't want to be the reason or take a part of something that i might hate it in the future. she actually waited tell i reached 16 so i can made the decision by myself which was NO for me as well. from your post i think you have a good background about UC . you also know that uc is a condition of peaks and troughs. if you can handle with that for a long period period of time till your son get conscious about priorities, possibilities, side effects and all other information that will help him to make a better decision and select from alternatives. i know it is hard, tough and needs a tremendous effort to Waite all that time. just be patient ! who knows what may happen!!!!. i was on a remission for 6 years before without any medication. a lot of people here as well said that sometimes they found their self in a full remission without a single pill

talking about the natural food. for my condition, nothing form this natural food is working for me. i actually tried every kind of diets, every kind of vitamins and every kind of other things that might put you in remission Naturally but nothing actually worked. I don't say that all those things are useless or there is no point to try, but my point is that all those things are good when you are close or in a remission as it put you in a longer remission period and save you from nutrition problems. Here in the UK, doctors didn't tell me anything about natural food that might cause improvement as they don't believe in it.

last thing, don't collapse between legs or joints hurting and prednisolone tapering side effects. actually, i started having bone and joint troubles since i was 13 and all the doctors diagnosed it as a prednisolone long term and tapering side effects. after a long time, tests, MRI and X-ray shows that i was actually facing arthritics flare related to UC and the prednisolone reduction side effects was the wrong diagnose. no doubt that prednisolone tapering cause painful joints. on the other hand, arthritics is one of the UC syptoms. so just make sure that the lower legs hurting was because of the tapering and not something else.

I know it is a massive reply, i hope it helps

thank you Change is Possible! i can't begin to tell you how valuable your information is to me and for the welfare of my son! I pray everyday and just keep on along with what we are doing. I hope that my son will be able to hold out long enough till he can make the decision on his own. the info on your pred. experience is priceless! as i've tried to tell his doctor many times that his joint pain is only when we are tapering at a very low does, not any other time. she just assumes that he is going downhill because of the pred. but, i'm hoping some tests will prove otherwise later. either way, we will have to face it. and, thank God he has not had any stunted growth either. thank you so much! I know I am lucky that he is doing so well right now, and I don't take that for granted.

@Chris'Colon, I think you made the right decision for your son. I am very glad he is doing so much better and you have opened my eyes to the possibility that a young child can thrive even after a total colectomy. I have no doubt you are a great mom and make the best decision possible.

I'm feeling inspired and not as sad today because of you both and for everyone who replied to my post. You all know how hard it is and we are all in this fight together!!!

@ElephantPipe, I'm in Florida. I was completely opposed to surgery at first, but am now open to if necessary, mostly due to people on these type of forums who talk about their experiences. I was reading experiences on the jpouchsurgery website, and most of them were horrible in the beginning, but, they survived after a few years of complications and infections and then are now living happy normal lives. I know you can't believe everything you read, but, it is the site dedicated to that surgery. it's still a tough decision, but I am greatful at least it is an option to save and improve lives for many. I've been reading a lot about to Tumeric/Curcumin. I do cook with it sometimes as I love the taste. I was thinking about trying this next, but don't want to overwhelm my son's colon since we just started VSL#3 and Fish Oil. I think we will try it next as I read mostly all positive on it. I am even open to accupunture and meditation, but, have to sit down with son and explain it since he is 6 and might think it's weird.lol. could you please tell me what Raynaud's syndrome is? i've never heard of it. thanks.

Hi Elephant Pipe, thanks for the info. yeah, I think maybe it could have just been the surgery stories that I read that were horrible. the recovery part was bad, but then they said they went on to live normal, healthy lives. I really am glad it is an option for my son if it has to come to that. sometimes we have no other choice. May I ask how long you have been on azathioprine? Do you feel it plays a big part in your remission? My son has been on it just shy of one year. We had the initial very expensive! test (our co-pay was $350 even with good insurance) to make sure his body could handle it, but since then have just gotten the usual blood tests and so far so good. I am hoping the new doc will be able to run some test to be sure that the azathioprine is effective for his UC as I'm sure no one wants to take an immunosuppressent unless you absolutely have to. also, did you ever take prednisolone in the past? did it help to reduce very slowly and towards the end, reducing to every other day so your body can start producing it's own cortisal? my son has flared 6 times in the past year trying to taper off the pred! i will take anyones answers on this last question. thank you.

Hi subdued! this is so true! no matter what! we are our own and our children's advocates. I think I've actually become obsessed with internet searching.lol. but, i have learned so much about alternative treatments and other people's experiences in the process.

Looks like you're getting some great advice and support here, UCsuffering.
I just wanted to mention that you may want to be cautious if you're considering zinc. I don't know what it helps with, UC-wise, but it can be pretty irritating for some.

Years ago, before I had any GI issues, I had taken some for a cold and it made me vomit. Thought it may have just been the virus itself so I tried it again at some point with the same result. I've heard from other folks (I used to work in a natural food store) that they were sensitive to it also.

Anyway, just keep it in mind to start with a very small amount if you'll be trying it out.

hang in there!