Do doctors know it all? Starting to doubt!

[srzm]

Hi, new to this forum and confused as to what we should do next. My 15 year old was diagnosed 6 weeks ago. My son never had diarrhea but had stomach aches and major weight loss, 30 lbs in a short time. Doctor started him on 30mg of prednisone that has been tapered down to 5mg and will be done on Sunday. At the same time, we started him on the SCD diet. Day 3 into the diet and pred his stomach aches went away completely. He has gained back over 20 pounds in 5.5 weeks and works out almost everyday including playing a highly competitive sport. On Tuesday we went for a 2nd opinion at CHOP (#1 pediatric gastro hospital). Matt has zero symptoms at this point but the doctor insisted on giving us a prescription for Pentasa as "maintenance" and told us he could not recommend the SCD diet because it was not clinically tested.

At this point I am scared of what will happen when the pred runs out on Sunday. Anyone else have an experience with SCD?

 

[SarahBear]

Welcome, and glad to hear your son is feeling better!

I personally have no experience with the SCD diet, but someone who does will probably come along shortly. Just wanted to ask, did the doctor advise that your son stops the SCD diet? If he just said he can't recommend the diet (and not prescribe medication), why not continue with the diet and the Pentasa hit the disease from both angles? :/

 

[Trysha]

Hi srzm
Welcome to the forum.
It is always sad to hear of a young person with an IBD such as crohn's or ulcerative colitis.
There is usually good response to prednisone and this could be why he has made such good progress.It could be dangerous to assume the SCD has played any part in this and time will tell.
If only we could all be cured by diet alone it would be a wonderful world.
Some do find items of food which aggravates the system,others find that diet plays little part in it all.Everyone is different.
Prednisone always quiets the inflammation and is known to increase weight, it is usual for the GI to introduce other longer term measures such as Pentasa to control the disease.
If no such action is taken even if the inflammation symptoms appear to fade away, the internal damage can still continue to a crisis situation.
I am sure you would not want to risk that happening.
You should be able to discuss things further with the GI if you feel strongly about the diet.
I have recently being going through agonies of indecision regarding Remicade which I
will be shortly receiving .
Personally speaking I would be going along with the GI advice.
Feel better soon
Hugs and best wishes
Trysha

 

[David]

Hi srzm,

I'm sorry to hear about your son's diagnosis, that's tough My heart goes out to your entire family.

Does the SCD work? Yes, for some I believe it does help but I always cringe when that's all someone is doing. In my opinion it should be used as a COMPLIMENTARY treatment as I believe people with IBD should have their disease treated from every angle imaginable. Western medicine, dietary changes, lifestyle changes, supplements, vitamins and minerals, etc.

I must admit, I got a (sad) chuckle that your doctor won't recommend the SCD but then put your son on a medication (Pentasa) that hasn't performed well enough in people with Crohn's disease to get approved for its use so he's using it off label. Now, I don't have a problem with Pentasa being prescribed, but I do have a problem with that being the only thing people are put on. I'm glad you're doing SCD in conjunction with Pentasa. But there's lots of other angles you can hit as well.

Anyway, we have a thread dedicated to the SCD located here if you're interested.

 

[ALotToLearn]

Hi srzm,

My 12 year old was also diagnosed with Crohn's in July. He's never experienced pain, but in hind sight, has been dealing with inflammation for probably the past year. Initially noticed blood when going to the bathroom, then multiple trips in a day with blood before we progressed from the pediatrician to a GI. Our GI also wanted to start with pred, but I resisted and asked if Entocort would work instead. GI agreed, but now after 7 weeks, starting to have higher levels of inflammation again. Started Pred. yesterday, and last night my son had severe bone pain. Did your son ever experience anything like that, or other side effects? My son plays hockey and wants to start basketball next week as well. If the pred is causing this pain, I'm worried he's going to be forced to quit what he enjoys. By the way, he's also taking 6 mp as a maintenance drug assuming he's able to achieve remission. Not at all happy about pred. GI has him on 40mg for 4 weeks, then tapering by 5mg a week until done. 11 weeks total plus the 7 weeks he's been on Entocort. Trying to learn quickly. Hate this.

ALTL