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crohns_disease

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Jul 6, 2014
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Hi
Currently taking Humira 40 mg every fortnight and liquid diet supplements
15 year old boy - wondering what is the ideal weight so that growth can begin
 
It isn't a certain weight, you are looking for healing and improved nutritional status. Ideal weight would be correlated with his BMI. There isn't a "perfect number" for vertical growth because it is dependent on a variety of things.

Edit to add:

For example my son has gained about 25 lbs using EN but he has active inflammation so his vertical growth is affected, he has gained a bit over 1/2 inch in vertical growth while on EN. I would think this is due to the fact we have active inflammation and without EN he wouldn't sustain this weight.
 
If the inflammation is under control then an endocrinologist might be able to help .
They can help figure out your bone age - how old your Skeleton is so you may have longer to grow .
A lot of crohn's kids have delayed growth but catch up later due to a younger bone age .
 
I'll just reiterate what the others have said... the disease must be under control, particularly any inflammation, and then, when all is well, you'll see growth. First weight and then height. What are your concerns exactly? Height? Weight? Lack of puberty?

My son is finally in remission and has has clean labs for seven months now. He started putting on the pounds very quickly once Remicade knocked everything into place. Now his weight is tapering off, but his height is really starting to shoot up. He's doing the classic "catch up" growth.

If you're concerned and your son's disease is under control, a visit to an endocrinologist might be in order. Although, at his age, you may want to go anyway just to check in.
 
Keeping weight at a constant place is difficult but the main concern is height is a lot lower than it should be, especially considering the genetics.
 
If he can''t keep wweight on then he is almost certainly not in remission. Without remission do not expect growth. If you want him to be taller get him into remission. Have you had a bone age done? If not this should be done along with DXA scan to check his bone quality.

If his bone age is behind then you have time. If not then you are in trouble because he is in the peak growth period and once it is past it is much less likely he will grow a lot.
 
Tried azathioprine, prednisolone and pentasa - only time he was well was whilst taking prednisolone which helped weight but not weight so getting into remission has been difficult
 
Well the AZA takes a while (months) to be effective. Was he able to tolerate it log enough to know for sure whether or not it was going to work?
 
Things to think about
When was his last scope /mre / bloodwork ?
How many calories is he taking in by mouth
Food and formula
Types of formula
Some kids need it to be broken down more than standard polymeric formula to absorb it .
Polymeric -boost /ensure etc...
Semi elemental - peptamen /peptide
Elemental - neocate /elecare /Eo28 splash .


Sometimes the biologic by itself is not enough and needs to be combined with an immunosuppressant .
This is the case for DS ( not crohn's side but arthritis side).
Has he tried remicade ?

Hopefully you can get some guidance from his Gi soon.
 
28g of protein is taken in daily JUST by the liquid diet substances as well as at least two other meals a day with snacking in between.

Rrmicade has not been used yet but willing to give it a try, would it be used in addition to the humira or as a replacement?

Thanks for replies
 
Been on humira for about 3 months, suddenly getting back pain and hair is starting to thin. No immunosuppressant is currently being taken because he does not like taking azathioprine - this is probably the cause but would appreciate it if anyone can recommend an alternative to the azathioprine
 
What about Methotrexate or 6MP?
It might take Humira longer to fully kick in. For the back pain, has he seen a rheumatologist?
 
Thank you for all your suggestions, an appointment will be made to discuss immunosuppressants with doctor and potentially changing humira to remicade.
 
We haven't done the humira route but did the azathioprine for years, in the end it just wasn't strong enough to get all the way to remission and growth was affected. My son started on remicade in January and pounds quickly went on bring him to about 25% where he was before crohn's hit, he has hovered between 1-5% for the last several years. But as others have said first weight, then height. We are seeing height now and has grown about 3 inches in the last 3-4 months. Shoe size also gone up a size and 1/2 since January.
We have not done the dual therapy as he had a reaction to methotrexate when we tried it and seems to be doing well on mono therapy currently.
 
Humira can take longer than three months to work
It took closer to 5-6 to work for DS .
Also the type of liquid supplement does matter general protein shakes are not enough .
Typically complete nutritional shakes are needed
 
The azathioprine caused hair loss and other pains in the back so he chose not to have them.

The liquid diet supplements taken are Nutricia Fortisip and he takes 2 daily at the very minimum but has only added this to his diet in the last week or so.

After researching the other immunosuppressants that he can take they all seem to cause hair loss as a side effect which he doesn't lke. However, he has never fully reached remission until he started prednisolone which comes with its own side effects of delaying growth
 
Got it. Well, even though they are listed as a possibility, perhaps the doctor might suggest that he's had difference experience with one than another for the hair loss? A big part too, I suspect, on the hair is the nutrition piece and the ability to absorb the nutrition.

We are using methotrexate and have not experienced hair loss to date.

J.
 
Currently without taking any immunosuppressants, hair is still thinning whilst just taking 40mg of humira - blood tests were recently done to check why but doctor hasn't got back to us yet

However, whilst taking prednisolone - weight gained by about 10 kgs in about 2 months and all symptoms were gone, would that be ideal to take and could we expect height improvement whilst taking them?
 
Pred has serious side effects .
Stunted growth is one of them .
Brittle bones
Diabetes etc...
It is a rescuers and should not be used long term.

No growth can be expected while on pred.
Hair loss sometimes starts at first with Aza only to go away later.
Dusty son had issues with hair loss that were related to crohn's .
 
So what would you recommend? Should HD stay on humira and wait to see if there's ant difference or should he go onto remicade. Also, which immunosuppressant would you recommend?
 
As another parent (not a doctor) I can tell you it took longer than 3 months for my son to get into full remission on Humira. Unless your doctor says otherwise I think you need to give it more time - perhaps 6 months.

Remicade typically works faster but could still take 3 months before remission is achieved.

I have heard of hair loss on AZA but not on MTX but I am sure therre are people who lose some hair on MTX. As others have said it may be a temporary side effect. You may want to post on the adult treatment thread asking about hair loss and AZA. That's a much larger audience.

Many doctors seem to have reduced their prescribing of AZA and substituted MTX since the recent research came out showing a tiny association between AZA and cancer. So I would suggest you ask your doctor about using MTX instead of AZA. There is also newish research showing that MTX is effective where before there was scant evidence for this.

I agree that nutritional deficiencies may be playing a role in his hair loss but it's hard to say for sure.

It's not typical to get back pain from these meds (with the possible exception of prednisone especially when weaniing). I would suspect that this is a symptom of his disease not the medication and he should make sure the GI knows about it. He should probably see a rheumatologist about it particularly if the back pain is in his low back. That could be a particular kind of arthritis that is associated with Crohn's Disease

Prednisone is used to bring about abrupt remission of most severe symptoms. It has many system wide severe side effects and potential side effects which MLP referred to. Among them is that it stops bone growth completely. It can cause diabetes, sometimes temporary sometimes not, makes you susceptible to severe infection and is generally held in reserve as a rescue medication not for ongoing treatment.

I think you need to have a thorough conversation with your doctor about all these alternatives. You might use the memory aid BRAND to help with that conversation:

B - what are the Benefits of the proposed treatment?
R - what are the Risks?
A - what are the Alternatives?
N - what if we do Nothing?
D - Decide

All the best
 
When reading through the forum, and particularly the Azathioprine sub forum, you will find that it is not uncommon to have hair loss with Imuran (Azathioprine) but the vast majority find it to be a temporary problem. Considering that Imuran is generally commenced when people are at their most poorly i do wonder how much the condition of the hair can be put down to the drug alone.

As mlp has said, my son suffered with hair loss during his post diagnosis period and his hair even appeared to change colour but I don’t know if this was an optical illusion due to the thinning. I personally feel that in our case his hair loss had far more to do with him flaring and being in a poor physical state than it ever did with the Imuran. I know everyone responds differently but as a comparison, my daughter commenced Imuran after surgery. The surgery induced an immediate remission and although she was still in a poor physical state the Imuran had no effect on her hair.

Dusty. xxx
 

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