If you could go back....

[Farran7]

I would love to hear what others with mild/moderate Crohn's disease might have to say about medications....and if they could go back to when they were first diagnosed if they would have done anything differently in their treatment plan?

My son (10yrs) has a very mild form of Crohn's disease, not really having too many symptoms other than slowed growth....this has been a long journey to diagnosis...and now that we have it....we don't know if we should medicate him (Dr. wants him on Apriso) or try the nutritional/supplement/vitamin route. Either way it will be difficult to determine if anything is making a difference bc all of his blood work is normal and he has no symptoms externally.

If you have lived this experience, please share with me your reasons for choosing one treatment over the other....and what you may have done differently if you could start over.

We just don't want to start medicine so early (he is 10yrs old) if he doesn't need it just yet. I hope I made sense....this is such an agonizingly painful decision to make for our child....we just do not want to make the wrong choice and make anything worse for him! Thank you for any and all thoughts!


farran7

 

[Zoodles]

Well we were severe/uncontrollable crohn's on diagnosis. As hard as it was to accept personally, we went with the top down approach. Tried traditional medications to gain control and progressed to biologicals when they failed us.

If I could do anything differently, I would have forced the issue with our pediatrician. It was almost two years before he was diagnosed.

Does your son have low grade fever or anything else you can use to monitor?

 

[Mumof4]

My son is 12 and was diagnosed in August. We are going for top down therapy he was on a liquid diet for eight weeks to help put him in remission and is also on azathioprine. We agonised about him starting on such a strong drug, but after lots of research and reading this forum we realised we would be doing him more harm by not starting it. We can't see what is happening on the inside and even if he is not symptomatic there can still be damage going on. I have read of too many people who ended up with strictures due to damage they did not realise was happening. I want to minimise long term damage if possible and get the disease under control as fast as we can, for as long as we can. I believe that the top down approach gives us the best chance of doing so. This is just my opinion and others may disagree. It is a hard choice to have to make on behalf of your child, all you can do is educate yourself as much as possible about the options, the pros and cons of each and then make a choice which you believe to be best for your child and your circumstances. Good luck.

 

[Crohn's 35]

If I knew 20 years ago and had a computer in those days and this amazing forum. I never would of taken Prednisone so much and was on 27 different pills a day and opted for surgery which gave me amazing 7-8 years pain free but on Entocort 3mg a day.

I also would never have had Remicade because I had a terrible reaction to it. I think when you are on the "big guns" medications for long periods of time, it makes your body weaker...ONLY MY EXPERIENCES. I may not have been needing a second surgery and then more meds... I didnt learn to look after myself. Stupid..:ybatty::yfaint:

 

[DustyKat]

To me, slowed growth would be enough to consider one of the alternatives the doctor has suggested. They are both the least aggressive in term of side effects when it comes to treatments.

For inflammation to have slowed your son's growth means that damage is already being done even without other symptoms being present. I think the question you need to ask yourselves is...Has this been so insidious that we haven't noticed the changes over the years?

The only reason I say this is because of what I am are experiencing with my own son. He was diagnosed last December after one week of very, very mild symptoms. The biopsies showed his disease to be mild to very mild. Unfortunately it all went down hill from there, culminating in surgery in April. His inflammation obviously didn't start overnight but just how long had it been there? If the way he presents now is anything to go by, then quite a while. Now that he is in remission I see sides of him I haven't seen in, well I can't remember when and the only thing that is different is active Crohn's, albeit mild, as opposed to remission. Prior to diagnosis I thought he was happy, relaxed, full of energy and he was, but it is only now that I realise it was nothing compared to how he is now and leaves questioning just how long this has simmering away.

Good luck Mum, I know full well how agonising these decisions are...:hug:

Dusty. xxx

 

[kimmidwife]

If I could go back I wish I would have known about the enteral nutrition. I definitely would have used that as a first line therapy. I am so sad about my child having to put all these poisons in her body and wish there was a way to avoid them.

 

[Farran7]

Wow...thank you all for your insight.....words cannot express how much just hearing your experiences/advice/opinions help us! We have been haunted by the thought of doing something.....and haunted by the thought of not doing enough of something.....I just honestly, don't think I will ever feel good about any of these medicines used to treat this disease and I feel almost depressed over the thought of putting them into my son's body...even if it is one of the "safest" ones out there.......but i also feel helpless and that no matter how much research, no matter the diet changes, no matter the supplements.....the disease is going to do what ever it is going to do and we don't get to choose that......we feel we can only try to ward off anything worse than he has already experienced and pray that in doing so....we don't cause him any other harm in the way of side effects.....or worsening of his symptoms. This poor kiddo already has to deal with Life threatening allergies on top of all of this too....enough is enough.

 

[steph38]

Wow, If I would have known 16 yrs ago, about the bad side affects of long term steroid use I would have never let my doctor start me on it for maintainance. My body is now hooked so to speak and I cannot get off I end up in the hospital everytime I try. Gained like 150lbs, and who knows what side affects are too come. Good Luck to you and your Family. All you can do is what you think is best at that time.

 

[Loriebird]

If I could go back, I would have started a treatment plan when I first began having mild/moderate symptoms at the age of 15. Then maybe it would not have developed into severe crohns. Instead, I went undiagnosed and untreated for almost a decade until it spiralled out of control and I had no choice but to go on the big gun meds. May I say that your child is so lucky to have such a supportive mom. Wishing you both the best!

 

[dodie74]

Hi farran7, i felt the very same as you when my son was diagnosed, on our part tho, it all happened so quick, he had abcess on his anus which was sorted by surgery( didnt know he had crohns at this point and didnt realise this could be a symtom as id had abcess down there too n i dont have crohns) after that he had the odd sore tum but i did notice his tummy got VERY bloated. took him docs, referral straight away for every test going and yes it came beck he has 4 different areas with crohns. I agonised over the meds, spoke to his ibd nurses and consultant and they were superb, they said the benefits of these drugs outweigh the risks we read about. my son has been on salofalk and 6mp for nearly a year now and looking back im positive we done the right thing. he has colour now and not pale, endless energy and his eczema has totally cleared. no bloating at all now and touch wood is fine. when i first gave him the first dose of 6mp i fekt guilty and cried my eyes out and did feel depressed but i see now its doing its job. Keep positive, wishing you all the best. xx

 

[Farran7]

dodie74, thank you so much for your positive words of encouragement......Guilt is exactly what I know I am feeling and will feel over whatever we decide.....we are leaning m ore towards medicine and alternative....not really sure which will make the true difference in his case.....but Guilt is haunting us for sure. I will know we made the right choice when I see my son doing better.....it is just hard to imagine that he is sick right now bc he looks so healthy and acts fine to us......but maybe we are just used to the "sick" version of him and that makes me sad.....again thank you to everyone who has posted so far.....definitely a wonderful community of support we have here! xo

 

[Brian'sMom]

I agree with DustyKat that slow growth isn't a small symptom. The body is fighting the inflammation so all the calories and nutrients are going to fight the crohn's and starving the body of what it needs. If I could go back, I'd have started fighting the crohn's the first time they mentioned it to us. He was only 6 and I thought I was 'protecting' him from a wrong diagnosis. I also think the medicines don't make them weaker...I think when you have crohn's in remission you're letting their bodies BE healthy again. My son hasn't been sick...not even a cold...since he started Humira. Before that, he was catching everything!! Combine the medicines your doctor suggest with the nutritional/ supplement/vitamin route you talk of. Then you've got every base covered. Keep his intestines healthy while we wait for a cure I believe one is coming.

 

[LilyRose]

Hello farran7.

I hope you are going ok, I think having a child with a chronic illness is very stressful and full of these difficult decisions. You just want the best for your child with minimal side effects, and for them to have a happy healthy future.

I think you are being a great parent by investiagting the best approach for him, and you should feel good about that. I know the guilt is always there, and the worrying.

I too have a young son with only minor problems - perianal - and wonder which approach we should be taking. I will be raising it again at my next appointment. So I fully understand your situation.

I do agree - gowth issues are important. I hope you have a great medical team that can give you all the info you need and the benefit of their experience. The hard thing is because crohns is long term, we want our kids to be well now, but also be as well as possible as adults.

Sorry for the rambling!!

take care,
Lily Rose

 

[Dexky]

Add my vote to Kathy and Dusty's!! Every day I see my son feeling and acting normal is a gift!! He's been on Humira since this spring and like Kathy says, he has hardly had a blip since then

 

[Emily]

Personally, if I could go back I would have never quit medication as a kid. It made me depressed and gave me social problems because I felt alienated because I was sick so I refused all medicine. Ten years later, I paid for it with a severe stricture requiring immediate surgery. So my advice looking back, please listen to your son if he displays emotional problems with having to take medicine, but hold your ground on maintenance meds for him. My parents didn't (and I could NEVER EVER blame them, how could I??) but they still apologize for taking me off maintenance meds.
That is just my two cents. All my best to you and your son a I hope that you can figure out a good treatment plan for him!:hug:

 

[Crohns08]

If I could go back I never would have gone off my medication and my diet. I was so well with the safer drugs like Pentasa and on a pretty healthy diet (The SCD) and thriving. Now I've had two (albeit minor) surgeries and now I'm on the big guns medications because my crohn's went from mild to severe. I've also had a blood transfusion and two iron injections, one of which caused a reaction in me, causing my chest to tighten up and my blood pressure to dip. Please, please, please I can't stress how important it is to find a treatment and stick to it as long as you can.

 

[Farran7]

Update on my son: We visited the Gastro yesterday.....and we decided to start the apriso...our doctor did discuss the option of EN and said our son would need 1500 calories of Vital Jr per day and could then eat solids if he was hungry.....but doubted he would be.....the formula would have to be with him at school as well bc it is about 6 cans per day to get in that calorie load.

We opted not to go the EN route merely bc of the quality of life issue. Our child already has to avoid so many things due to food allergies it almost seems cruel to make him have a liquid diet. Our Doctor said this would be indefinite for now if we chose this path bc his disease is so mild we don't really have much to go on other than scoping him and how he is feeling. His bloodwork was normal with the exception of mildly elevated Sed rate.

So our plan is to start the Apriso (2 oer day), give him caltrate, multivitamin, continue the Prevacid (30mg) and continue with the inflammacore and protein shakes (ultra meal), although his doctor has asked us to think about stopping the last 2......bc he doesn't really feel those items are safe due to lack of regulation.

I have read every comment anyone has made to me about my child...and I greatly appreciate it! I know when I recount my son's history it is crystal clear there is a problem.....it is hard to accept that my child has a chronic disease......but I do not want him to continue down the path of worsening problems due to lack of treatment or not enough treatment. I am scared....I feel guilty....like I am putting poison into him, but I do fear what could happen if we don't do something now while it is mild.

I have to give this one to God.....it is very hard to do, but I know there are others who have and are suffering far more than my child....and I recognize that it is actually a gift to find out this early in the disease and be able to do something before he has a blockage or worse. So, we will move ahead for now....even though I don't really believe I will ever be at peace with any decision.

 

[Dexky]

I wish I could tell you that the decision making will get easier or the constant wondering if you are doing the right thing or every thing possible to help your child. I've come to the conclusion that one can quickly drive oneself over the edge with the myriad possible courses of treatment. I've decided I may as well trust the GI. At least his is the most educated guess. Good luck Mom(I'm assuming)!!

 

[AZMOM]

Farran7 - I think you are choosing the right course of action. I know, believe me I know...that all these medication decisions are tough. These kids have a looooooooong way to go so anything we can do to preserve these little bodies and give them the quality of life they so deserve has to be done. It is difficult when they don't look "sick" but like everyone else said, the damage can be done silently and then when you can "see" it, things are very very bad.

We'll be thinking of you and hope the Apriso gets you where you need to be.

Hugs,

J.

 

[DustyKat]

I think the only way I resolve myself to having to make these awful decisions is to have an aim, much like J.

My aim is to do whatever it takes to get them into remission and keep them there as long as I can. Each day, week, month and year that can be achieved brings forth better treatments and most of all closer to a cure.

Dusty. :hug:

 

[Farran7]

Just out of curiosity....have any of you experienced heel pain at all when you are flaring? My son has complained non stop about his heels and back of his heels bothering him....I kind of shrugged it off....now I am wondering if it could be related to the disease process??

thanks
Farran7

 

[DustyKat]

Hey Farran,

I know of other adults on here that complain of heel pain.

Matt didn't have any signs of IBD at your son's age however at about 10/11 he did have major issues with heel pain and he was diagnosed with Sever's Disease. It is not all that uncommon in children and affects boys more than girls, it seems to be made worse if they participate in sport that played on hard grounds, Matt plays soccer. It occurs when the growth plates grow faster than the tendons, causing stretching and therefore inflammation and pain. There are growth plates in the heels (Sever's Disease), below the knees (Osgood Schlatter Disease) and in the lower back. Matt had the most trouble in his heels but later those in his knees became problematic as well, they eventually grow out of it.

I realise there is some irony in this since your son is having growth issues but it may be just a thought if you can't find an answer elsewhere.

Dusty. xxx

 

[Farran7]

DustyKat

Thanks for your reply.....this may be a silly question...but whom do I take him to see for the heel pain?? We see so many physicians already.....is that a rheumatologist, pediatrician or ortho??

Farran7

 

[Brian'sMom]

My son complained of heel pain when he was flaring last December. His inflammation was high then. (And he was also playing indoor soccer...after a fall season of soccer). When they got his inflammation in normal range...all seemed to go away. (We also took Jan-May indoor soccer season off). During that time, my son also had those bumps on his shins (erythrema nodsom).

 

[DustyKat]

If it is related to his IBD then I would go to his GI and that is where I would start if you are concerned about it. As Kathy has said...once his intestinal inflammation is brought under control then his extra intestinal manifestations, like heel pain, should resolve as well.

If it continued after his flare is under control and he is in remission then I would seek further advice via the paediatrician.

Dusty. xxx