Remicade/Metho Update and a Question

[JenniferJuniper]

My 13 yr old son has completed his loading doses of Remi and will move onto his maintenance doses every 2 months from now on. At our last appt with gastro Dr mentioned that his blood work is trending in the right direction. No remission yet. He has never had any side effects from either treatment except tiredness after metho doses.

When he was diagnosed, he was malnourished and anemic.

From July to the beginning of Oct he was very faithful about his shakes and was drinking 4-5 per day. During that time he gained 9 lbs.

Now that we're into the school year he is drinking 3-4 shakes per day and his appetite has grown but his weight has not changed in a month.
Thoughts?

Remi not working? Is weight plateau normal at this point? Are the decreased shakes making this difference?

 

[my little penguin]

It depends
Is he in more activities ?
Has his weight hit his normal curve yet ( typically what he was at age 2)?
Ds gained a lot of weight at once then hit a normal pace of gain some sometimes and not others following his curve .
Growth happened later .

 

[Brian'sMom]

I think school has something to do with it. No snacking... A hurried lunch.

 

[JenniferJuniper]

Hi Penguin!
So, with the 9 lb gain that puts him at 77 lbs and 58 inches which is the 3rd percentile. At least he's on the chart now but at around 2 he was in the 50th percentile. What do you think?

 

[JenniferJuniper]

Brian'sMom, he has been eating at school. Like, today he had pizza, tater tots and a banana and brought a Baggie of goldfish and some beef jerky to munch on during the day. It seems like enough food to me but what do you think?

 

[Brian'sMom]

I just know that my kiddo likes to talk at lunch and probably doesn't finish before time is up! He always tells me what was on the menu... But he's a kid that we have to say..."Keep Eating" and encourage him to clear his plate at home. So I just know that with my kid, once school starts, its harder for him to gain weight.

Your son's school food sounds good

 

[Clash]

I would think since he isn't in remission that could play a role, just having one or two fewer shakes(that are more easily absorbed) could be making the difference too. But I agree school can be a hurried schedule more scarring down food as opposed to the grazing kids do during the summer.

 

[crohnsinct]

If you just finished loading doses it is probably to early to think that the Remicade/Mtx fixed things to the point where he would be absorbing all his nutrition and gaining without all those supplemental shakes. It took my daughter a good 6 months to get healed enough to the point that she started gaining and even then it was a slow start, then came in huge spurts, then came vertical growth. Like everything else with this disease, "patience is a virtue" Good Luck!

 

[my little penguin]

Could he throw a shake or two in a stainless water bottle in the nurses fridge and drink during study hall ?

Shakes are just easier to add weight wise until they get in remission

Ds drink two for breakfast no cereal
So you could do
Two breakfast
Two snack in study hall( kids wouldn't know since they can't see inside).
1 after school
And two before bed

So easier to get 7 a day in

I agree it's way to soon on remicade

 

[my little penguin]

Btw to put in perspective
Ds was 50 lbs at dx age 7
After loading dose 70 lbs due to 3-4 'months of pred age 8
2.5 -3 years later only 86 lbs but on he curve 75%.-age 10 after biologics

 

[myboy12]

My son has been on Remicade and 6mp for 6 months with no weight gain. In fact, he lost a few lbs. Perhaps he was still losing a little of his excess Predisone weight? His labs look good, he has no symptoms and he is growing. He is a swimmer and is very active. I am hoping that he begins to put on weight as he continues to sprout!

 

[Maya142]

My daughter's scopes improved immensely on Remicade, but she still was not able to eat enough calories to gain weight. She now get supplemental EN via an NG tube and is very slowly gaining weight. She hated the idea of the tube but now thinks it's much easier than drinking Peptamen.

I would agree that if he's only had 3 infusions, it's too early to tell if Remicade is working. Encourage him to drink more shakes if he can.

Seeing a nutritionist who can figure out how many calories he needs and whether he's getting enough also might help. If possible, one that has experience with IBD would be best.

 

[JenniferJuniper]

Ok thanks everyone- I think I was overly optimistic due to that early gain. My plan will be to bump up shakes during the day, try to add a second for breakfast and it sounds like the secret ingredient is waiting!!

 

[crohnsinct]

it sounds like the secret ingredient is waiting!!

Yep! Something we are all very good at

 

[Jmrogers4]

Little late to the party but we had a good weight gain initially and then a plateau and now we are seeing just a small steady growth about a pound every 8 weeks. Jack started on remicade in January and as others have said the weight came first and then the height. He started about 7% and is now just above the 25% so still shy of his growth curve pre-crohns which was 80% but if I look at a 13 year old which is what is bone age is/was in January he is really close to that percentage. He is about 20% for weight which seems about right for our family his non-ibd sibling is right there at 80% and 20% for weight and they were the exact same percentages at the same ages until crohn's hit.
We are seeing about a pound weight gain and about 1/2-1" growth every 8 weeks and growth velocity curve compared to others is well above the curve. It didn't really start taking off until about 6 months in. So yeah, waiting.... Have I told you all how much I suck at that? No patience.

 

[Mehita]

For perspective, I just looked back at my son's records. He's been on Remicade one year now and his weight gain in two month intervals (at Remi appts) has been 2, 6, 4, 3, 0, 3 pounds with that 6 pound high being after the loading doses. He started Remi at age 13 1/2, so quite similar to your son. Like the others said, it just takes time.

** His height had a similar pattern over the last year too with no change one time. Overall though, he's up 4" since starting Remicade.

 

[JenniferJuniper]

I always feel better after I bounce things off all of you. I suck at waiting too!

It's nice to see your son's breakdown of weight gain to put it in perspective. Thanks!