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Crohn's Disease Forum » Parents of Kids with IBD » C winter update-frustrated


 
01-05-2014, 10:58 AM   #61
my little penguin
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Allergy can start any time there is a change
Puberty or menopause
Keep in mind chemical changes happen long bettors the physical changes
So they could explain the onset of allergies
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DS - -Crohn's -Stelara
01-05-2014, 11:22 AM   #62
kimmidwife
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Clash,
The trace of blood in urine should be checked out if it continues however some people just have it. I always have microscopic blood in my urine. I had all the workups done and everything was negative. My doctor told me some people just have it with no explanation. I am glad you are getting the ovarian endometrioma checked out. If it worries you push for a biopsy. Definitly work on the Vitamin D if they won't give you a prescription get an OTC one. Keep us posted when you are going to Mayo.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-05-2014, 12:41 PM   #63
Clash
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kimmidwife- I have been having this endometrioma checked every six months for the last two years, I had just moved to once a year after having it checked last February. I have had issues with menstruation where the schedule is all wonky and the gyn finally admitted I probably have endometriosis. She gave the option of birth control or some type of uterine ablation to decrease the amount of bleeding or a hysterectomy in which they would remove the endometrioma and ovary if necessary. That has now been put on hold until we figure the heart thing out.

My Little Penguin, that is good to know. I have had hormone panels done a few times and all has come back perfect. I was hoping all my period issues and flushing was related to that but no such luck. I hadn't even thought of allergies being related, thanks!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
01-05-2014, 06:52 PM   #64
imaboveitall
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Bone marrow biopsy is the best way to irrefutably dx mastocytosis, it will not diagnose MCAD(S). During V's second scope I had the pathologist look for gut masto. The slides must be stained a certain way, and they must know what to look for.
The difference between these two are: mastocytosis is an overproduction of mast cells, MCAD(S) is mast cell activation disorder/syndrome in which a normal amt of mast cells are produced, but they "misbehave" and degranulate easily and with varying triggers.
Pruritis and flushing with OR without urticaria are both common in all forms of masto and MCAD.

Ask for a tryptase level, simple blood test and if elevated shall give you a starting point for further investigation.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
01-05-2014, 06:55 PM   #65
Clash
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Thanks!!! I'm going to push my GP to do that tomorrow.
01-13-2014, 06:11 PM   #66
Clash
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So I thought I would drop in an update on C and me too I guess. C has been doing good. He seems to be sailing along but I do think the Remi nurses are going to be shocked by his weight. It is still rebounding from the flu and of course seems to be taking longer than I want it to. He is trying to drink smoothies with the Ensure/Boost but mostly he just gags it up, still a texture issue.

I go to my local cardio EP tomorrow to go over all the tests performed while I was admitted in the hospital. He just changed my med again, so now I'm on nadolol. We'll see how this goes. I'm still scheduled for the Mayo in Jacksonville for the first part of Feb. I'm not sure if the trip is even necessary as I think the POTs is a defo but I would like to have tests run to try and discover type and rule out anything insidious as the cause.

Interestingly, enough while researching dysautonomia and POTs, I found that a lot of POTs patients are Vitamin D deficient, severe fatigue, vitamin B12 deficiency and have IBS or motility problems with the bowel including gastroparesis. It is so uncanny to read the stories of those with POTs and realize no matter the chronic illness it has such a profound impact on the sufferers' lives. So far, I have only faced this as the parent of a child with chronic illness as mine isn't as debilitating as those I have read about. Still, there is a process of coming to terms with it that I'm trying to wade through. I worry most about not being healthy when C is having a flare, I really hope this med gets me back on track.

Hope everyone is doing well and things are looking up for this new year!
01-14-2014, 04:59 AM   #67
DustyKat
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{HUGS} to you Clash. It surely is a lot to process and I hope more than anything that this new med is just the ticket for you.

It is good to hear that C is going along fine and that he soon packs some meat onto those bones! Bless him.

I also hope your fears about your own health and C’s never come to fruition Clash but regardless, your exceptional knowledge about this disease is something that your body can never take away from you so C will always have you in his corner.

Sending mega loads of love, luck and healing thoughts your way!

Dusty. xxx
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01-14-2014, 07:43 AM   #68
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Good to hear C is doing fine. Good luck for your appointment, hope the new meds help.
01-14-2014, 10:49 AM   #69
Jmrogers4
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Sending lots of hugs your way! Good luck with the appt and glad C is doing well and hope the weight bumps up quickly
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-14-2014, 11:13 AM   #70
Tesscorm
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Just lots of hugs... no advice but just thinking of you and hope you're feeling better soon!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-15-2014, 12:48 AM   #71
jmckinley
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Wow Clash! (((HUGS!))) I am so sorry for all you have been going through with your health. I hope that you get some answers soon. It is very frustrating to not feel well yourself when you are already dealing with C's issues. That's a lot to deal with!

It's amazing to see how similar Ryan and C still are. Ryan had flu dx on December 20th...and he had the flu shot in October! But I suppose the mtx and Humira left us with no hope but to catch the flu. He is still tired and it is January! Glad to hear that C is drinking his shakes and trying to bring that weight up. Man it's hard to put the weight on them!

Hope to hear that you have found some answers for your health soon! I will check back in on you!
01-19-2014, 09:55 PM   #72
kimmidwife
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Glad to hear c is doing well. Sending hugs your way! Hopefully this new medicine works. I think it is worth it to keep the appt at Mayo. Sounds like a lot of people here have had such good experiences there.
01-23-2014, 05:15 PM   #73
Clash
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Ok so C had his remicade today. All went well this stretch, no symptoms and he has been feeling great.

So, I knew the nurses were going to be upset about his weight and sure enough, shortly after he went back the nurse came out and said that C's weight was concerning. The doc was in-service this week but she felt he needed to see doc and the nutritionist. She felt at this point, the doc may consider the nightly ng tube to see if we could get some nutrition into him. He was 112.5 and she wants him at 118 when he comes back to see nutritionist. Oh and if he loses anymore they may have to consider admission. They did his labs and I should get results in a day or two.
01-23-2014, 06:04 PM   #74
Jmrogers4
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How's his appetite? Is he still trying to gag down an Ensure/Boost.
01-23-2014, 06:17 PM   #75
my little penguin
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What about the protein powder you can add to things??
Have you tried other versions carnation, Kellogg , slim fast etc???
Yes even slim fast will cause weight gain if taken with a normal diet .
01-23-2014, 06:31 PM   #76
xmdmom
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Anything with calories can cause weight gain if it's absorbed and eaten in quantity. What foods/drinks does he like and also tolerate?

What's his height and what's been the trend with his weight? I'm wondering why the nurse was talking about an NG tube.
01-23-2014, 07:00 PM   #77
Clash
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xmdmom, C's weight has been an issue off and on, his last hospital admission(Jan. 2013) was due to joint pain so they went ahead and did scope, MRE and FC. The GI was happy with his tests but he was suboptimal for weight so they wouldn't release him. We were there 7 extra days trying to get his weight up.

His last FC was his last remicade and it was normal. The GI and nurses have spoken to C about supplementing his diet with ensure/boost but he doesn't tolerate them, he doesn't like the texture so he gags them back up. We've tried everything, mixing with fruit and ice cream to make a shake, adding chocolate syrup, I truly believe it is a mental thing at this point.

He had been at 120, then 118, but this last stretch he got the flu(about 4 weeks ago now), he lost down to 109 but has gained back to 112.5 as of today. His appetite is great, our grocery bill is proof of that. He eats all the time and both he and I told the nurse this. Supplemental EN with NG tube has been discussed before that is why she brought it up. The nurse said she can't say for sure what steps the nutritionist will want us too take at the appt but if it about absorption then the elemental formulas via ng tube may be necessary. She told C to make sure he was eating high calorie meals and snacks and to try to really pack on weight, if by doing this he still doesn't put on weight by the appt, that will give them more info to work with.
01-23-2014, 07:20 PM   #78
crohnsinct
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So frustrating! I am assuming you told them about the flu bit right? I mean isn't it a good sign he is gaining again? Slow but gaining? Any concern there is simmering inflammation that might be interfering? I know FC test is usually pretty predictive with him as is his own accounting of how he feels and his appetite so maybe he just needs to find his magic food. Aren't you from the south? Can't you whip up some of those deep fried, calorie laden foods? What kind of a southern girl are you? Shall I send you some lasagna and Italian pastries?
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
01-23-2014, 07:35 PM   #79
Clash
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Yeah, I told her about the flu and all. This has been brewing from his previous GI appt. The GI just thinks he should be gaining more. I think personally, it is probably scar tissue and an inability to absorb. I mentioned this to the nurse and she nodded that his tests, appetite, and no symptoms do point to that. She was really taken back at the how hollow she said C looked. I knew C looked skinny but seeing him every day I guess I am not able to gauge how bad the weight loss has looked.

The nutritionist appt is first then a few weeks later the GI/remicade appt. She told C that the nutritionist would make recommendations to the GI and he would take them into consideration in what the next steps should be.

Today:
Banana when he woke up

McD breakfast combo otw to remicade

Cookies and chips at remicade

Shane's Rib Shack combo after appt(cleaned the plate)

snickers bar otw home drive

doughnut when he got home

plate of tater tot casserole when we got home(loaded with cheese, sourcream, butter, mushroom soup)

And he will probably eat again before bed.

CIC, anytime you want to send some of your Italian food my way, feel free...why don't you just bring it yourself along with some wine and we will just have us a sweet ol' time!
01-23-2014, 07:36 PM   #80
xmdmom
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The weight gain from 109 to 112 is better than nothing but most healthy people who lose due to flu gain their weight right back.

Does C have any ideas about how he could gain more weight? Does he exercise?

I'm curious to know his height.

I wasn't clear if you were using boost/ensure in all of your smoothies. I don't know about the texture of boost but I do know the smell (YUCK). My son hate BOOST but it helps maintain his weight. I've been making coconut milk/greek yogurt/ fruit smoothies for him too.
01-23-2014, 07:40 PM   #81
xmdmom
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If he's not absorbing, I'd expect some gi symptoms.
01-23-2014, 08:21 PM   #82
Clash
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His height is now 5'7" so he is under the 5th percentile.

He hasn't been exercising, but he does play around with friends at school basketball, football, Frisbee. Oh yeah his idea to gain weight is can he eat at the Japanese Restaurant once a day? He gets snack money to eat off campus during one of the junior breaks and he always chooses thai sushi, he said he was going to start doing milkshakes and other high calorie food instead.

He doesn't have any GI symptoms or any of his usual EIMs such as episcleritis, joint pain or the ulcers that show up with his flares. He does stay on the go, especially on the weekend but he and his friends are usually grilling out, or going out to eat so it doesn't seem that he is eating less then but he did say he was going to take the nurse up on the calorie app she sent him and track how much. I was doing this for awhile but his calories were almost always over 3000 a day for the last few months so I had stopped pestering him with it.
01-23-2014, 08:28 PM   #83
Clash
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We make shakes and smoothies with and without the boost since the nurse has said pack whatever you make full of calories.

I feel like testing is probably going to be our next step. To see if we are dealing with simmering inflammation or scar tissue or what. But I guess the GI will be discussing all that.

I told C the night before that the nurse was going to be concerned about his weight. Up until this point he has never been concerned about it but last night he said he was worried about it too. In the past, his usual answer is this must be what I'm supposed to weigh cause I am eating.

I guess we will just be waiting for all this to come together.

My Little Penguin, I'll look into the protein things. He eats protein bars, it was never really for the protein he just liked these certain ones that had chocolate and peanut butter.
01-23-2014, 08:32 PM   #84
crohnsinct
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Has his thyroid been checked? I can't say with certainty but I remember reading thyroid issues with either Crohns or Mtx.

That hash brown casserole sounds amazing! PM me the recipe...I wouldn't want it circulating on the open forum for fear we would be poisoning everyone.

And girl! Sitting a spell on your nice warm porch eating and drinking sounds divine right about now but I have plaster to rip out and water to sop up....trust me the wine is a flowin!
01-23-2014, 08:52 PM   #85
Jmrogers4
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Beneful makes an unflavored protein powder easy to add to shakes, smoothies, pudding, etc and then he doesn't have to worry about taste.
Tater Tot casserole sounds amazing
01-23-2014, 09:22 PM   #86
Clash
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Thanks Jmrogers4, I'll see if I can find that next trip to the store.

Oh and he just fixed him a fried egg sandwich, I'm telling you guys, this kid eats constantly!
01-23-2014, 10:55 PM   #87
my little penguin
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Are you using fitness pal app or the like to log a food diary .
We did this for DS
It calculated how much fat carbs etc he was taken in and how much he needed to gain weight .
That was how we knew he had an issue when 2600 calories didn't cause him to gain weight at age 7.
We put butter under his peanut butter/jelly sandwiches, avacados,
Olive oil to cook with .
Milk shakes ice cream etc...

Hope you get answers soon.
01-24-2014, 04:21 AM   #88
Sascot
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How frustrating when he seems to be eating so much. Hope he manages to bring the weight up without the NG tube. My son couldn't tolerate any of the supplemental drinks - he just gagged them up too.
01-24-2014, 05:10 AM   #89
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Good to hear that all is hunky dory with C clinically.

Weight: I know the benefits of being in a ‘healthier’ weight range so don’t bonk me over the head for saying this buuuuuut…

In view of the fact that he is starting to gain again following an acute illness, is doing well Crohn’s wise, is eating like the proverbial horse and has ileal Crohn’s with the likelihood of scarring…do you think there is too much emphasis on his weight? Does it bother C?

Dusty. xxx
01-24-2014, 06:23 AM   #90
Clash
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MLP I was just keeping up with calories with an excel sheet but the nurse gave C an app to use on his iPhone, not sure what it is.

Dusty, C hasn't really worried about his weight. His philosophy had previously been, if I'm eating and I don't gain then maybe that is where I'm supossed to be. But when he lost down to 109 I think that worriedhim because it was only a couple of lbs. more than what had kept him in the hospital last year.

Before bed last night he said I'm not worried about the weight the nurse said with the ng tube for supplemental I didn't have to wear it if I spent the night off so I say bring it on. I'm hoping he will use this app and do his best to put on weight but I'm letting him take the lead he is 17 and the decisions and managing of care will fall to him soon enough.
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