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My daughter has chrons ??Question??

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Posted 8/21/2008 6:14 PM (GMT 0)
I have a 13 yr old daughter who was diagnosed with Chrons shortly before her 10th birthday. She had a normal life and diet, 4 months prior to her diagnosis she started getting diahrea and initially we were told it was a stomach virus. She went from 88 pounds down to 64 within 90 days. SHe was referred to a pediatric gastroenterologist and she discovered that my daughter had chrones. she was on Prednisone, asacol, flagyl, Iron, and pepcid. This was the first year. She was then tapered off of allof her drugs except the asacol. But last year she started losing weight again and Dr said she was having a small flare. She did not have any pain and her stools were semi formed. No bleeding. Her Dr left the practice but before doing so recommended that she be places on Remicade infusions every eight weeks. She has since done the infusions every eight weeks for the last year. She has no symptoms really other than dry skin and her mouth stays dry and lips are chapped a lot. She still lays around and sleeps a lot too. Lack of energy. She started her period this past year and bleeds quite heavy. Dr says this is one of the side effects of the remicade. How long will she have to be on this remicade. Dr seems to think that she can take it indefinately. But Im not so sure. Any comments are welcomed. Im just worried about the long term effects as well as her quality of life if she should have to stop taking the infusions.

Thanks in advanced.

Posted 8/21/2008 6:50 PM (GMT 0)
I am sorry she has this terrible disease.  She is TOO young to suffer like that.

I can't comment on remicade, sorry. 

Posted 8/21/2008 6:55 PM (GMT 0)
Thanks Shelly for commenting. Im just worried thats all.
Posted 8/21/2008 6:58 PM (GMT 0)
I cannot tolerate Remicade, but I do know that this is something she will need to do for as long as it helps. She will need treatment of one form or another for the rest of her life.

I'm sorry to have to give you this bad news, but she may reach the point of remission sometime, which can last for years in some folks. I've not yet had full remission, but I keep hoping.

***********
I edited your sig, as it is too long - Ivy.

Post Edited By Moderator (ivy6) : 8/21/2008 4:53:48 PM (GMT-6)

Posted 8/21/2008 7:04 PM (GMT 0)
Thanks Stephanie, the Dr did sayindefinately. To me that sounds like forever. But for what its worth I will do whatever it takes to make her life as symptom free as I can.
Posted 8/21/2008 7:04 PM (GMT 0)
First, I am sorry to hear that she has to deal with this at her age. This disease is hard enough to handle as an adult!

In terms of Remicade, I have only had one infusion to "jump start" my Imuran (immunosuppressant). I am not sure why some people get ongoing infusions and why some are like me - only get one and then switch to Imuran.

I am sure there will be other folks on here who will be able to answer your questions. In the meantime, please know that you and your daughter are in my prayers.

Good luck -
Posted 8/21/2008 7:04 PM (GMT 0)
Even though we reach remission we should always be on some type of maintenance medication. My only maintenance med is Asacol, but others are maintained with Remicade, Humira, or some other Crohns drug. We have to remember this is a chronic and incurable disease that we will have for life. The best way to keep it quiet is by taking a maintenance med. Hugs to your daughter, it always make me sad when I see little ones who have this darn disease. Also, that time of the month was really hard for me too. Birth control helped me some there, but she is still a little young. Good luck!
Posted 8/21/2008 7:08 PM (GMT 0)
Hi sydneysmom! I feel very badly for your daughter. No. No one should have to deal with this at any age. And it's especially hard to see your child suffering. Heart-wrenching...

I'm sorry that I can't answer your Remicade question, but I'm sure someone will come along who can.

I only want to add that we have had amazing results following the SCD (Specific Carbohydrate Diet) and taking supplements. Our pediatric GI was not supportive in the beginning, but I think he now is eating his less-than-encouraging words.

I will keep your daughter in my prayers!
Posted 8/21/2008 7:32 PM (GMT 0)
Thank you :) Nanners her regular pediatrician has suggested that we try birth control soon to try and help her with the heavy periods. But she just turned 13 and Im not ready for her to take them. But we will see how it goes over the next year and then decide. EMom I will start researching the SCD diet, i never heard of it and would like to gather info on that as well.
Sylvia
Posted 8/21/2008 8:22 PM (GMT 0)
I'm so sorry your daughter is having to deal with this. I self diagnosed at 13 and was basically told I was lactose intolerant. But, my Mom had CD and I knew what I was looking at. Having gone untreated for 10 years, I don't know what damage was done. Like Nanners said, this is disease that needs to be managed with maintenance drugs. Some people have success with diet, but in the long term, who knows what underlying damage is being done. Like I said, I managed for 10 years by diet, and ended up with 3 resections in my 20s.

That isn't to say that her quality of life can't be improved by having a very good diet and sticking to it, but as a teenager, it is very hard.

Also, having basically lived with CD my whole life (my Mom and me) I have seen such changes in the treatments and drugs available that make everyday life so much better, so I am sure that in the near future the possibilities will just be great as far as our options for treatments. I personally take an off label drug that has made a huge difference in my quality of life. More and more research is being done all the time, so chances are good that remicade is not going to be a "forever" drug for your daughter.

As far as periods go, a lot of us have more trouble with our periods and our CD. Both my Mom and I were officially diagnosed when our first born children were 1, so I truly believe that hormones play a big part in my CD. I had my tubes tied years ago, but I take birth control pills to help with my heavy periods, and they do help a ton.

I have 2 daughters myself and I worry constantly about them, given my family history, my younger one in particular. She also has always had period issues and we had to put her on birth control pills to help control it at around 14. So I do understand where you are coming from. We don't want to put more drugs into our kids, what kind of message...... But she was miserable and missing too much school. It really did make things easier for her, and she is much less moody as a bonus!

As a last little piece of advice as a daughter who witnessed her Mom have this and as a Mom who is worried about her daughters. My Mom tried hard to live a normal life, she didn't always succeed, but she tried, and she set a good example. So when I did finally get my diagnosis, I wasn't shocked or scared, it was just, "OK, what do I need to do to get better". And I have tried to do even better for my girls. So, if you don't treat it like some sort of horrible, scary thing, your daughter won't be as likely to see it that way either. I've never let it stop me from doing anything, and I've had it pretty bad. So there are ways to go about just about everything. I've worked, raised a family, traveled and led a great life. Your daughter can too!
Posted 8/21/2008 8:41 PM (GMT 0)
Very well said Zanne.....
Posted 8/21/2008 9:02 PM (GMT 0)
So far I have not noticed anyone talk about nutrition. You need to be sure that your daughter takes a multi-vitamin/mineral (without iron - needs to be taken separately). Her digestive tract is likely damaged and will not be absorbing nutrients properly. The most common deficiencies are iron, B12, folic acid, and B6. You need to be careful with iron supplements though. A number of people just don't tolerate them well and you should try an easily absorbable form like iron citrate. I hope your doc has done the blood work to check for those possible deficiencies. It is a lot easier to avoid a B12 deficiency than to try to fix the problem. If you become seriously B12 deficient for long enough, you lose the ability to absorb it and then you have to take huge amounts for the rest of your life. One other suggestion: get a good probiotic supplement. Look for a number of Lactobacillus type bacteria and also Bifidobacter. Bifidobacter is killed by exposure to oxygen, so it needs to be refrigerated to survive. Also, look for a supplement that does NOT contain FOS. FOS is basically bacteria food and can promote the growth of undesirable gut bacteria. A number of people report good results from taking a probiotic and since your daughter has been treated with antibiotics, most of her Lactobacillus and similar beneficial bacteria will have been killed off.
Posted 8/21/2008 10:12 PM (GMT 0)
Sydneysmom- I'm so sorry to hear about your daughter. I was dx'd at 16, so I know it's hard when you are young. I don't know about heavier periods because of the remicade, so I don't know about that. BUT... I can tell you about "indefinite" on remicade. I wish that were possible, but it is most likely not. I was on remicade for 6 & 1/2 years - which is a pretty long time. Some poeple build up anti-bodies or a type of resistance to it and it starts to not work the way it used to, or it stops working altogether. If she has been on remicade for a year and it is helping then that is GREAT news. There's really no way to tell how long it will work for her. You'll just know when you see that the infusions don't have the same effect they used to. Also, there is a lot of ground to cover in between - the GI can step up the dose and/or the time frame (every 6 or even every 4 weeks). I was at the "high dose" 10mg/kg every 6 weeks for a years before remicade petered-out on me. There was even a time of severe flaring when I was on it every 4 weeks. So, you have a lot of options.

IF the remicade stops working for her, there ARE other medicines similar to remicade that she can try. For example, my GI put me on Humira, it seems to be doing pretty well. Not as great as I would like it to, but WAY better than being sick all of the time and I am able to pretty much accomplish what I'd like to.

As far as long-term remicade effects - having been on it for so long, the only thing I see as as a "problem" is that I have developed chronic sinusitis - I'm always a bit stuffy in my nose, but it's really not a big deal. I've also had 2 remicade babies (infusions while pregnant) and they are happy, healthy, bright children 4 & 2 years old. I'm pregnant with baby #3, who will now be a "Humira baby". I know the farthest thing from your mind is your darling girl having a baby, she's still just a baby herself. I just wanted to tell you that if she has a good GI and can find the right meds that work for her, she CAN have a very happy, productive, life. And she can accomplish anything she wants to. She will have plenty of spells of "tired and sleeps all the time". I think I spent my entire senior year of high school in bed. But, be encouraged, you just have to find what works for her and you WILL. We're all so different and we respond so differently to things. I have also tried the SCD and it works WONDERS for me. It's pretty strict, so maybe hard for a teen to try, but I'd say it's VERY worth it to see if it helps. I also think that you might find that a good Probiotic will help (WITHOUT FOS! like Keeper said).

I hope you find what works for her. Poor dear, she's going to have a time of it, but she's also going to be made stronger because of this and you will be amazed at the young lady she will become. Hang in there Mom!
Posted 8/21/2008 11:49 PM (GMT 0)
Wow ! So much information to absorb. But well worth it. Thank you all so much for your responses. I feel that there is hope for her and maybe one day she will be a mom, she will go back to playing soccer. I know one thing for certain is she loves to play the flute and she is committed to the 8th grade band. Thats one thing that peeks her interest. Anyway thanks everyone.
(((HUGS)))
Sylvia
Posted 8/22/2008 12:07 AM (GMT 0)

sydneysmom said...
EMom I will start researching the SCD diet, i never heard of it and would like to gather info on that as well. Sylvia

Sylvia, if you care to email me personally (click on the yellow envelope under my name to the left) I would be happy to send you all the SCD links I can find--at least the one's I've found to be especially helpful. The information online is extensive--and that's an understatement! There are also countless cookbooks on the market that are "SCD compliant".

Now if you're like me, the thought of learning to cook a new way may seem daunting. It did to me at first, but I'm here to say if I can do it anyone can!

I also want to ditto Stef and Keeper on probiotics. They are the good bacteria in our intestines. I started my son on one shortly after his diagnosis. When I told my son's GI we were using them, again he was not supportive (just telling you this to let you know how your GI may react). But that's okay! Too many people here report great success using them. Some more progressive doctors are even beginning to recommend them!

We also recently added the SCD legal yogurt for even more beneficial probiotics every day. This is one good thing you can't have too much of!
Posted 8/22/2008 12:29 AM (GMT 0)
Hi Welcome to HW. If it were me I would just keep looking to see how children are responding and if there are new sideeffects being found. Glad to hear your daughter seems to be doing so good. lol gail
Posted 8/22/2008 3:36 AM (GMT 0)
I am sorry for you and your daughter =( I was 26 when I was diagnosed.

Remicade was the last resort medicine for me. I was having between 10-20 bloody bowel movements a day and was having accidents too. My doc tried asacol, 6-MP and then finally put me on Remicade (I have also been on prednisone on and off the past two years in conjunction with all these meds).

I'm not sure why her doc would put her on Remicade if she wasn't having awful flares, but weight loss is very serious too. I don't really know how things work for children, so I'm sure he had his reason. If you are uncomfy with this you should get a second opinion! It never hurts! All I know is that Remicade was the last resort for me.

I've been on it for about 11 months now and really don't get any side affects from it besides extreme fatigue after my infusions. However, after about 3-4 days I'm back to normal. Good luck with everything and please keep us updated!
Posted 8/23/2008 4:36 AM (GMT 0)
lilturbo, she was placed on the remicade because she continued to lose weight on all the other meds and she would still have 7-8 loose stools a day. It got to the point where as soon as she took her meds they would come back out in her stool. Not justthe asacol that is normal so I have been told for it to come out whole in the stool. But another thing. I live in a town where there is only 1 pediatric gastroenterologist. And he just replaced my daughters original Dr who moved back to New york. We live in Ga and she is a patient at the Medical college of Ga childrens medical center. Its the closest place within 100 miles. So There are no other opinions really at this point for her. Since being on remicade she has gone from 78 pounds to 120 she grew 4 inches. Of course she is 13 now and was between 10-11 when all of this first started. Im really pleased with her growth and development, overall, I just wanted to know if remicade is for ever.
Sylvia
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