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New to Forum, newly diagnosed 13 year old - J's story

crohnsinct

Well-known member
Yep! O did most of her gaining and growing post EN. All healed up and ready to go! Great news!

P.S. I saw your joint pain thread. O recently grew 3/4" and has been complaining of joint pain. Doc says could be cd, coupld be psoriatic arthritis, could be growing pains!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
P.S. I saw your joint pain thread. O recently grew 3/4" and has been complaining of joint pain. Doc says could be cd, coupld be psoriatic arthritis, could be growing pains!
Yeah, was 3/4 inch in one week a typo? Even puppies don't grow that fast!!:)
 
Great news!!!!!!

Since all of you weigh your kids (maybe) as much as I do, do you find a big fluctuation in their weight?

Johnny can weigh 126 one day and 132 the next and then back to 123. The over all trend is up, but maybe I just weigh him too often??:biggrin:
 

Tesscorm

Moderator
Staff member
Great news Carol!!! :banana: Like Crohnsinct's daughter, Stephen gained more weight once the exclusive period ended and he on supplemental EN plus a regular diet.

Johnnysmom, Stephen's weight fluctuates by 6 to 7 pounds regularly. Do you weigh him at the same time each day? I don't mean to say that you should weigh him daily but, if you do, there can be a difference in weight between morning and evening weighings - not 7 or eight pounds but a pound or two plus the normal fluctuations could seem like a lot.
 

crohnsinct

Well-known member
3/4" in a week...hahaha didn't catch that. Maybe they feed em some miracle grow in Alaska!

Yep! Obsessive compulsive weighers here in CT also. O fluctuates only a pound or two though but she only weighs 85 pounds so as a percentage of weight maybe the same. I think as long as you are trending up that is a good thing.
 

CarolinAlaska

Holding It Together
We only weigh once a week with similar clothes, similar time of day in the doctor's office where I work. That way we don't see the day to day fluctuations, but the overall picture. The height change was pretty specific because the MA who was measuring her had adjusted her height last week due to measuring it wrong and had double checked it. Another MA measured her this week and the first MA went to the scale and remeasured her because she didn't believe it, but it was right. Maybe that is why Jaedyn's been having some joint pains! She does have a lot of catching up to do.

Did I mention that with 3 more pounds she'll actually be on the growth chart (in the colored part?)! She hasn't been "in the blue" since she was a baby... Her current growth in height has put her at 50% (she was at 28% last October)! Her weight in percentiles has gone from 0.25% to 2.4%! Can you tell I'm really proud of her?
 
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my little penguin

Moderator
Staff member
We weigh DS every night same place same time it is within a pound or two.
Only because we supplement and have gotten to the point of not wanting him to gain too much....(see it can happen)- we adjust his shakes if he seems to be adding too much too fast.
 

DustyKat

Super Moderator
Thanks so much for the fab update Carol! :):):):):):) Happy, happy, happy for you!

Onwards and Upwards Jaedyn! :heart:

Dusty. xxx
 
Awesome news on the growth! We also weigh at the same time and in similar clothes, we used to weigh daily but now just once a week(well I record once a week, I think C actually weighs every time he goes to take a shower...habit I suppose!)
 
We weigh once a week now as well instead of daily, athletic shorts at 8pm Thursday night, seems to be maintaining between 98-101. Drinking 2-3 a day now.
So glad Jaedyn is gaining and growing. I probably annoy people with my "look at his cheeks, he has cheeks!" remarks but I've had to listen and bite my tongue for the last 3 years as they have given me "advice" on how to fatten him up.
 

crohnsinct

Well-known member
Where at the same point as MLP, in trying for no more weigh gain. Sarah has gain 16kg
(35 pound) since dx.
Ummm..yeah o.k. Catherine. Hard to imagine a girl who swims a 5K race in open water for fun has to worry about weight gain. :p Guess that goes to show how good she is doing. She looks great in the pictures you posted!
 

Catherine

Moderator
I don't think it a real issue but before her dx. Sarah could eat anything she liked and never gain any weight. My daughter eats like a teenager boy.

It more like learning to eat like a normal person again. Also at 17 and half she has stopped growing.
 

Catherine

Moderator
Carolin, Sarah has always eaten like a teenager boy. We were forcing extra food into her prior dx on medical advice. 3 main meals plus 4 snacks, no eating fruit as snack as too low in calories. Now she unlearning this way of eating. A good problem to have.
 

crohnsinct

Well-known member
I hear ya Catherine. Docs are telling us a milkshake a day for Olivia because all the healthy food doesn't have enough calories. Young fast metabolism plus all that swimming just burns it all off. Unfortunately my older girl learned the hard way that when the swimming stops you have to stop that eating. She went to a college without a swim team and is really paying the price.
 

CarolinAlaska

Holding It Together
Up another 4.5 lbs in 2 weeks. Maybe at this rate by the end of the summer she'll be able to take the safetypins out of her swimming suit bottoms! :)
 
Oh that is just wonderful ! I truly needed some positive news, my Nick is loosing fast and it's scary to see. I am so afraid to know what to feed him incase it ends up causing him pain. Well done to the both of you !!!!!!
 

CarolinAlaska

Holding It Together
I'm so glad she's better with her weight. Do you think a g-tube is worth it now?
How many does she drink now?
We mix 4 cans Ensure Plus (Vanilla or Dark Chocolate) with 3 Peptamen Juniors (vanilla) into a pitcher every morning. She can't drink either drink straight, but can drink it in combo - go figure. Anyway, she sips on it out of a tall glass with a straw all day.

The MICkey button is on hold indefinitely now, since this is working. As long as we can find a combo that she can and will drink, we'll avoid the surgery... I'm so glad we went this route! She's been pain free for a couple weeks now and gaining weight like crazy! I don't even ask about her stools anymore! I guess we'll see how tomorrow goes. We'll be driving to Anchorage. That usually makes her sick... The one thing that isn't happening much is that she still isn't hungry for much of anything else, and I don't think she eats much more than one or two small meals a day - but she can pretty much eat what she wants. We haven't done steak, raw fruits or veggies yet though.
 
Amusingly we use the Vanilla Ensure Powder and Liam loves it (despite the fact it makes his reflux much worse). Initially I mixed it in to smoothies but then discovered he really likes it straight. He has managed to convince his 14 year old big brother that it's a special treat!

If we've had a particularly tough day or Owen (the 14 year old) has been particularly fantastic, I'll sometimes let him have an Ensure, which makes him feel very spoilt.
 
Location
Canada
He has managed to convince his 14 year old big brother that it's a special treat!

If we've had a particularly tough day or Owen (the 14 year old) has been particularly fantastic, I'll sometimes let him have an Ensure, which makes him feel very spoilt.
LOL. My non-Crohnie daughter also thinks of these drinks as a treat!
 

CarolinAlaska

Holding It Together
Here's an update. Jaedyn lost 3 lbs after a bad cold, but has managed to gain them back. She still has very little appetite most of the time. Our docs had her check her zinc level because this can cause anorexia and inability to taste food. Hers was low. We are going to start her on Zinc supplements (Zinc Chelate 30 mg/day). The pediatrician recommended 1 mg/kg/day, but that makes 38 mg, and the doses come in 30 or 50 mg. I'm not sure whether her recommendation was for Zinc sulfate or what - she just said zinc. I am reading that Zinc chelate is better absorbed. For any other crohnies out there with skin rashes or hair falling out, zinc deficiency seems to cause various skin conditions, and I'd recommend having your child's zinc checked.

Camp Oasis is coming up in 2 weeks. She's looking forward to that.

Jaedyn did a 2 week drama camp and made it through (after deciding the next morning that she wasn't going to come back!). All 3 of my girls went to it and they had a play on Friday evening. It was a success! Jaedyn decided to overcome her fears and did great.
 
hmmmm. zinc? I don't think we have ever had zinc checked. We pulled Jack off the periactin to see if he maintained his appetite and it has definitely dropped off he is back to eating very little. He has GI appt after they get back from camp so I'll put it on my list to ask about.
Glad Jadeyn is feeling good and getting out there doing things, good for her you must be proud.
We got our camp packet yesterday and Jack was looking at the map and talking about the different cabins, He thinks Jaedyn will be in Sleem based on her grade. Jack is also very excited for camp.
 
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DustyKat

Super Moderator
Thanks for the update Carol! :)

It is so good to hear that Jaedyn is getting on top of things again. :biggrin:

Well done to your girls for doing so at drama camp and an extra kudos to Jaedyn for overcoming her fears! :thumleft:

I hope all goes well with Camp Oasis and she has an absolutely fab time!

I had Matt's Zinc checked last November, at David's recommendation, and his was also low. Our GP prescribed Zinc Citrate 30mg daily and from what I have read that is also a well absorbed form of Zinc. He now has zinc regularly tested along with his other bloods and it is now at the upper end of the normal range. David did state this to me re dosage:

Cool, 30mg once a day should be fine. 50mg and above you start to worry about potential toxicity.
Dusty. xxx
 
H was tested for zinc in march 2012 and was low. Dr suggested 15 mg per day for him. The rash on the side if his nose cleared soon after supplementing. Dr tested zinc again this winter and he was normal. Dr said keep him at 15.


Here is a link that I found at the time
http://www.bcm.edu/cnrc/consumer/archives/zinc-Crohn's.htm
Link between low zinc and Crohn's disease symptoms studied

A pilot study designed to determine why children with Crohn's disease have low levels of zinc might lead to more effective treatments for this chronic inflammatory bowel disease.

"Many symptoms seen in Crohn's disease, such as stunted growth, a poor sense of taste and skin rashes, are also characteristic of a zinc deficiency. Because most individuals with Crohn's disease have low serum zinc levels, many question whether a zinc deficiency might be the cause of at least some symptoms," said Dr. Steven Abrams of the USDA/ARS Children's Nutrition Research Center at Baylor College of Medicine in Houston and the study's principal investigator.

Crohn's disease is a chronic condition that can affect the entire gastrointestinal tract. Flare-ups are characterized by intestinal inflammation, fever, abdominal pain, severe diarrhea, and bloody stools. Even when the disease is under control, many individuals continue to experience poor appetite and chronic diarrhea, which can affect their nutritional status.

"No one knows whether the low serum zinc levels seen in Crohn's disease is due to diet, poor absorption, or increased losses caused by the disease. But, because zinc is involved in over 70 physiological processes, including cell division and protein formation, it's clear that a zinc deficiency during growth periods can have serious and life-long repercussions," said Dr. Sandra Kim, a Baylor research fellow who is also working on the study.

Abrams and Kim believe that pinpointing where abnormalities in zinc metabolism occur could help determine whether supplementation relieves some Crohn's symptoms. If so, this knowledge might also help researchers identify the best methods for administering supplemental zinc and for monitoring zinc levels.

According to Kim, approximately 10 to 15 percent of the nearly one million individuals with Crohn's disease are diagnosed in childhood. Caucasians suffer most frequently from the disease, but the incidence among Hispanics and blacks living in Westernized cultures is on the rise.

Although the cause is unknown, many believe that the disease is initially triggered by a gastrointestinal infection. One theory suggests that the body somehow fails to properly "turn off" the normal inflammatory immune response once the infection is resolved, which sets up a vicious cycle of intestinal inflammations, diarrhea and other symptoms.

"Understanding how zinc metabolism is affected by Crohn's disease could lead to an improved quality of life for these children," Abrams said.
 

CarolinAlaska

Holding It Together
Good information, everyone, thanks!

I forgot to mention that Jaedyn's sed rate was also up a little bit (normal CRP). We are now waiting for results of a fecal calprotectin test to see if that is the cause.

Jacqui, I think that your son's use of periactin started this, as I knew he was doing well on it. I asked our GI if that would be something Jaedyn can try. She said we should check the zinc first, and now I see it was for good reason. I think it would sure be with a try in checking it on your son. I hope it makes a big difference. I'm still not sure as to the dose in the form she has, but I hope it works. I guess we can always give her more if it doesn't. Today she had her first dose of zinc and didn't seem to have any problems with it.

Have a good night.
 

CarolinAlaska

Holding It Together
I guess it is time for another update. Jaedyn just got back from Camp Oasis and had a fabulous time. She wants to go back next year. Before she left, she began slacking off on her formulas, and is only getting about 1200 calories (4 cans) in a day with that.

We haven't weighed her for a couple weeks, but before she started slacking off she was fitting her swimming suit without the safety pin!

I don't know how well she drank at camp, and they effectively cut the parents off from contact with the kids during the week, which I'm not sure I like too well. They didn't tell me how well she did or anything either, since I couldn't drop her off or pick her up from the camp. She went with a chaperone from the Anchorage airport. Her appetite isn't impressing me too much yet with the zinc, but Jaedyn seems to think it is helping a little.

She is playing soccer and seems to tire quicker than the other kids, but that doesn't surprise me much because she doesn't exercise much. I think I'm going to get her back into swimming lessons again soon to help her increase her activity now that Camp Oasis is over. Soccer is only twice a week...

She had an appt with her GI two weeks ago and she was very impressed with Jaedyn's growth and weight gain. She won't be seeing her again for 4 months, but sees the pediatrician July 11.
 
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Glad she had a great time, Jack was full of stories yesterday. Yes Dex they are supposed to follow parent protocol and the nurses are there to make sure it gets done on time. Jack usually does better at camp eating because they are on such a schedule and everybody else is eating as well.
Hope her Ped appt goes well and she hasn't lost any weight. Jack goes for GI check in on the 9th.
 

CarolinAlaska

Holding It Together
Hey Carol, doesn't Camp Oasis have to follow the med protocol as set by the parents?
Giving the meds is the easy part. Getting a Crohn's child to drink 48 oz of a formula mixture with no appetite and a busy schedule is a different issue. We have a hard time making it happen at home. She was the only one having to drink the formula and no one else in her cabin even did nightly feedings with NG tube or any kind of enteral nutrition. Frankly, looking at the pics, she seemed to be the only child who was underweight in her cabin! I was really hoping that she would see that she wasn't alone out there in doing the enteral nutrition thing, but she says no one else at camp was doing it, that she could see... Of course I'm sure there were others, but it wasn't obvious enough that she could see it, and none of the other girls were encouraging or said things like, "oh I had to do that once..." sigh.
 

DustyKat

Super Moderator
Thanks for the update Carol. :)

It is so good to hear that Jaedyn had a fab time at camp! :dusty: But I do hear your concerns too. :ghug:

Good luck with the appointment and I hope your lass is continuing to hold her own. :goodluck:

Dusty. xxx
 

CarolinAlaska

Holding It Together
Jaedyn and I had a talk about her formula. She needed some motivation to do it. Right now if she drinks her 6 cans a day, she gets a dollar. If she doesn't, she gives up her right to electronics the next day (TV, computer, Wii). It is really a double motivator, and doesn't cost me much. It was her plan and so far she failed the first day, but met it yesterday... This could cost me $365/year, but that would be so worth it for $365 days less of nagging!
 
The lack of nutritional feeds may be due to the fact that the US tends to utilize Pred more?

It is always had to get C to get in supplemental drinks into him and we a whole system of bribes/takeaways. Just wanted to send some hugs your way!!
 

crohnsinct

Well-known member
Remind me Carolin...is she just supplementing at this point? Does she have a problem with milk? Just wondering as for just simple nutrition and weight gain there are a bunch of other options out there...but...if it is for trying to knock down inflammation maybe not so much.

If just for nutrients and weight gain, do you know a good registered dietician? If not maybe find someone with experience with patients who have anorexia nervosa. They are well adept at helping kids pack in a lot of good nutrition and some pretty yummy sneaky ways. We were seeing one of those for O and O was her easy patient as she liked to eat!
 
Same here we are still having problems with adherence but I can see how much better he is, how much more energy he has when he does have a couple a day at this point
 

my little penguin

Moderator
Staff member
No issues here yet - but he is still only nine . I am sure its a matter of time.
I can say the vsl#3 taste far worse than the peptamen according to DS which I didn't think was possible .
Is she eating as well ?
Once DS was back on foods we were able to cutback to two to three a day so less of an issue .
 

CarolinAlaska

Holding It Together
The good news: Jaedyn reached her 20 lb weight gain a few weeks ago! She weighed 90 lbs even!

The bad news: Jaedyn got strep throat again and was on 10 days of antibiotics then caught a bad cold that turned into a sinus infection for which she was put on a second antibiotic after 6 days of fever... Now she's lost 6 of the above 20 lbs and won't drink her formulas any more. She's finally starting to eat again (had 4 meatballs and some cooked cabbage at supper!). Yesterday we started school but she had to stop to lay down due to belly pain, and she's had orange stools with diarrhea since starting the second antibiotic - hoping this is a side effect of the antibiotic! I guess my rose colored glasses have been broken, and we haven't beaten this thing yet! :(
 
I hope this is just a bump in the road and Jaedyn will feel well again soon. It's like riding a roller coaster having a IBD member in the family. You are doing and have done such a wonderful job, keep your chin up and this to will pass.
Sending hugs to both of you.
Ps. Great news about the weight gain, fingers crossed it will come back plus more !
 

Tesscorm

Moderator
Staff member
Sorry she's not feeling better! :( But, great news on the weight gain! :D Hopefully, once she's feeling better, she'll get that weight back!
 
Sorry she is not feeling well, hopefully it is just a small bump in the road and she can quickly get back those pounds she lost. Awesome on the weight gain though!
 
How much longer will she be on the antibiotics? And she's on 6MP, right?

Like the others said, maybe it's just a bump in the road.
 

CarolinAlaska

Holding It Together
Thanks everyone. She has lost 6 lbs so far, but seems to be on the mend. Her appetite is starting to improve and she drank 3 ensure plus formulas made into "Orange Julius" type drinks yesterday in addition to food. She was doing 6 drinks previously, but at least she is drinking it again :). She felt good enough to start soccer yesterday too!
 
Glad to hear she is doing a little better. Is she on a probiotic? I don't remember. If she's not make sure to get her on one. It will definitely help with some of those antibiotic side effects.
 

DustyKat

Super Moderator
So good to hear about the weight gain! :dusty::dusty::dusty:

I am sorry about the setbacks though...:(...and sending loads of luck and well wishes that the turnaround continues for your lass, bless her. :heart:

Onwards and Upwards!

Dusty. xxx
 
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