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Crohn's Disease Forum » Parents of Kids with IBD » Dropping albumin levels?


07-11-2016, 10:03 PM   #1
kernelmom3
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Dropping albumin levels?

DD and DS had their Remicade infusions today. DD labs came back and her GI says she's concerned that her albumin levels keep dropping (they went from 3.5 to 3.1 in 8 weeks). Now she wants a fecal test and is talking scopes! DD has NO symptoms and after what happened to DS two years ago during his colonoscopy (they perforated his colon, emergency surgery to repair) and the fact that she just had a resection 7 months ago, I told her no scopes right now....or for awhile. Isn't albumin the test where the level shows what your level was three months ago? It's one of the nutritional markers but I can't remember which one. Also, does dropping albumin always mean inflammation? She rarely eats red meat and her only big source of protein is peanut butter so maybe it's just that she needs more protein? GI upped her dose of Remicade from 5per kilo to 7.5 today so maybe that will help things too.

But with no symptoms, great weight gain, etc. I just can't help but feel like fecal tests and scopes are jumping the gun for less than 1/2 point drop. Add to that the fact that DD is VERY anxious/nervous about everything, I'm in no hurry to start all this testing right before she starts high school next month!!! HELP!!!!
07-11-2016, 10:11 PM   #2
Maya142
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I can understand being hesitant about scopes, but a stool test is non-invasive and could give you good information. Fecal Calprotectin measures inflammation in the gut and that may give you a better idea about whether she needs scopes.

My daughter had low albumin too, when she was very malnourished. Has your daughter tried nutritional supplements, like Boost or Ensure?

Does she see a psychologist to help her manage her anxiety? My daughter was also very nervous about all things medical and seeing a psychologist who has experience with kids with chronic illnesses helped her a LOT. This disease is for life (unfortunately) so they have to learn how to cope. Your poor girl has been through so much, it may really help her.

My daughter was VERY against seeing a psychologist but thankfully her GI insisted. It took a while, but now she is comfortable with her psychologist and is quite happy to see her.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-11-2016, 10:19 PM   #3
kernelmom3
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Thanks for the quick reply! I really think it might be malnourishment. She's 100 pounds now (up from 70 pounds right before her resection!) but she doesn't get a lot of protein which is something we've been working with her on. She has been seeing a psychologist since before diagnosis and it does seem to help her. She has chronic motor tics from all the anxiety and was prescribed Prozac but is too nervous to take it!! She's had the stool test before (her younger brother is going to take one too because both his siblings have Crohn's so we want to test him but start out non-invasive). I just worry when I tell her she needs to do this test she's going to freak out and ask if she's sick, if she has to go back to the hospital, etc.
07-11-2016, 10:27 PM   #4
Maya142
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Could you talk to her with her psychologist? Or perhaps ask her psychologist how best to deal with this?

You could tell her that it's a standard test, done to monitor Crohn's and they just want to make sure that there is not a lot of inflammation. The idea is to prevent complications like another resection.

My kiddo has been on a different SSRI and has done very well on it. It has made a world of difference. It doesn't take her anxiety away, but it does help her cope with things, as does talking to her psychologist and learning various techniques to keep calm. She has not had any side effects or issues with it.

How tall is she? Would she consider trying something like Boost or Ensure? If she cannot tolerate those, then a semi-elemental formula like Peptamen or Pedisure Peptide might be better. However, those taste much worse than Polymeric formulas like Ensure, so I'd have her try those first. They are easier to drink when they're cold and there are plenty of flavors, depending on what she likes (my daughter liked the dark chocolate Ensure).

I'm going to tag some other parents -- perhaps they will have more ideas about how to talk to her:

my little penguin
crohnsinct
Tesscorm
Clash
pdx
07-11-2016, 10:46 PM   #5
kernelmom3
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Thank you thank you thank you! Really....I think everything is catching up with me and I'm losing it a little! I just turned 40 last week, two kids with Crohn's that I never really had a chance to cry about and the beat goes on!

DD is SUPER picky!!! Before they placed her NG tube and started TPN before resection we tried to make HER try Vanilla Ensure (she doesn't like chocolate) and all the Boost flavors. No amount of bribery would get her to take more than 3-4 TINY sips of them. I think I AM going to tell her that the stool test is just how this GI monitors Crohn's.
07-11-2016, 11:03 PM   #6
Maya142
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So I know this is probably the last thing you want to think about...but what about an NG tube? I'm sure she has bad memories from the hospital, but honestly, they're actually very easy. My daughter was so anxious about getting one and we were so intimidated by the whole thing, but after the first two nights (which were rough), she was absolutely fine!!

It took her about a week to get good at inserting it. She just inserted it at night and pulled it out in the morning. We ran her feeds overnight and no one at school had to know.

We used an infant sized tube - 6Fr - which is about as thin as a piece of spaghetti and soft and flexible. She did complain about a sore nose and throat but only for 2 nights. After that, she was absolutely fine.

She is also VERY picky and now she says the tube is WAY better than drinking the shakes (she drank Peptamen Jr and then Neocate Jr which tastes even worse) and she will never drink them ever again.

She now has a GJ tube that was surgically placed in her belly, since it's clear that she will need it for a while. She has gained about 27 lbs and is much healthier.

Prior to the tube, she was hospitalized several times just because she was so malnourished.

My daughter was against both options initially -- drinking the shakes and the tube. However, her GI said she either had to drink them OR try the tube. She tried drinking them for about a year, but just could not drink enough to even maintain her weight, much less gain. So then her GI insisted on the tube and I'm SO glad she did!

Hang in there. You've had a very rough couple of years. It does get better over time.
07-11-2016, 11:38 PM   #7
DanceMom
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Could be Protein Losing Enteropathy which can be caused by IBD. An Alpha1 Antitrypsin stool test would be helpful. I would request that test before agreeing to scopes.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
07-12-2016, 12:16 AM   #8
pdx
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Sorry to hear about the low albumin, and all the resulting decisions to be made. I agree with the others that you should at least do the fecal calprotectin test. It's so easy and noninvasive, and it should help you figure out if the low albumin is due to IBD inflammation, or just low protein intake.

My daughter is the same age as yours, and also went down to 70 pounds at her lowest weight. She used an NG tube to great effect last year, but I think it would be a very hard sell to get her to use it again now, now that she is at a much better weight (around 110 pounds). I imagine it would be hard to convince your daughter to try an NG tube at this point too. But I do think she's old enough to work with you on adding protein to her diet, if peanut butter is really her only protein source. My daughter doesn't eat much meat, but she does eat a lot of seafood, eggs, yogurt, and ground nuts (in nut butters and things like Lara bars).

Finally, my daughter is also an extremely anxious kid, and Prozac has been very helpful for her. Has your daughter told you why she is nervous about taking it? My daughter hasn't had any side effects from her low dose, and it makes a huge difference in her coping ability.

Best of luck to you and your family; you guys haven't had an easy year.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
07-12-2016, 06:55 AM   #9
Farmwife
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My daughter's is low also.
Gets its from malnutrition.
I said the same thing to get doc, but doc she's gaining weight. He said that can be very deceiving.
You can have malnutrition in certain " areas" of nutrition ( like vitamins, protein.....).

Also to you mom,
Start to take time for YOU!
PICK SOMETHING EVERY WEEK TO GO DO ( walk, shop, read a full book)
Keep yourself mentally strong and it will help a lot.
This disease will still be there when you get back but having taken some time for you will help a lot!
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
07-12-2016, 07:27 AM   #10
kernelmom3
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Join Date: Sep 2014
Thank you all SO much! I'll have her so the stool test and go from there. I'm glad her GI is so proactive and I know at the end of the day we know our daughter best. She also just passed a kidney stone last month and has several others in her right kidney. She did that test where she collected her urine for a day and based on those results we may have to change her diet.
07-12-2016, 08:26 AM   #11
Tesscorm
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I'm also a fan of shakes for nutritional supplementation! It 'can' be such an easy fix...

My son also did the tube, every night for over two years. Like Maya said, it took him just a few days to get the hang of the insertion, by the end of the first week, it was no problem at all. And, during the two years, I did give him the option of drinking shakes but he always said he preferred to just have it overnight through the tube. It helped that when he was diagnosed, exclusive EN was presented to us as THE treatment (with only vague mention of steroid option) and we weren't offered shakes - just the elemental formula with him learning to insert the tube nightly. Believing we had no option, didn't leave us much choice! I remember, at the time, feeling strangely like I'd been railroaded into a treatment but not knowing why I felt that way. But, in their greater wisdom, I'm now grateful it was approached that way.

If there's any way you can ask your daughter to try for just one week, she may come to feel the same way Maya's daughter and my son felt - easier than drinking! (If you do try, be sure they give her a small size tube, 6Fr! If it's too large, it'll be difficult/painful and will convince her it can't be done!).

If the tube is 'no go' at all, and drirnking the shakes won't work either... Boost also sells fruit beverages. My son drinks them once in a while and he says they taste like juice. He's also always been very picky but likes juice, so these were an easy sell. I've also seen nutritional puddings (I believe Boost makes them??), we haven't tried them but might be an option for you. Also, if you google Boost recipes, they have a site with recipes that use Boost shakes (I'm sure you can use any brand). Lots of the recipes are smoothies but there are some baked goods and a few other things.

I've also found that my son has some anxiety with any symptoms (crohns or not). I think they also come out of this with a 'once burned, twice shy' feeling... It doesn't usually affect him on a day-to-day basis, so we've never seen a psychiatrist or therapist. But, when a test is needed or if I want an 'extra' test because of results, etc., I just talk to him about it very matter-of-factly, acknowledge he has crohns, discuss 'concerns' as if 'hey just a part of routine life, and need to be followed-up but that following up doesn't indicate strong concern. (I hope that made sense??)

Some of his liver numbers were off slightly at his seconpd last infusion. After researching, I read that alcohol can affect the numbers within a 24 hour period. So, before his infusion last week, a few days before, I told him his liver numbers were slightly off but, anyone tested every 6 weeks is likely to have fluctuating numbers. I wanted to be sure all was good and explained he couldn't have a drink for 48 hours (not a single beer after a hockey game, etc.) so we could have a clean test. He asked if I thought there was a problem but I just said 'no, but why waste labwork by leaving the same questions'... Perhaps he worries but doesn't show it but, keeping conversations very bland and short seems to help.

Also, my daughter (no crohns) had lots of anxiety in high school about tests, exams, etc. She'd literally be itchy all over, break out in hives, become emotionally overwhelmed, etc. She met with a psychologist for a few months and it helped immensely!! I don't know what the dr told her but, whatever she did, my daughter truly entered university a different person. She managed all exams, etc. with nothing more than the usual stress anyone would feel. With a bit more time, your daughter may start to instinctively use the skills her dr is showing her.

And, yes, you also need some time!!! Try to give yourself a bit of 'me' time. For me, a hot bath, with relaxing music and a book always worked wonders! I think, a 'routine' also became a mindset and, regardless of the situation, the bath immediately gave me relief. And, yes, candles, bubbles and wine help!
__________________
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
07-16-2016, 03:18 PM   #12
silec
 
Join Date: Jul 2016
Location: Ireland

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My daughter's is low also.
Gets its from malnutrition.
I said the same thing to get doc, but doc she's gaining weight. He said that can be very deceiving.
You can have malnutrition in certain " areas" of nutrition ( like vitamins, protein.....).

Also to you mom,
Start to take time for YOU!
PICK SOMETHING EVERY WEEK TO GO DO ( walk, shop, read a full book)
Keep yourself mentally strong and it will help a lot.
This disease will still be there when you get back but having taken some time for you will help a lot!
Hi Farmwife this is slightly off the point but if I can ask a few questions please?
Albumin loss - is this measured from blood, urine or by some other parameter?
Is the albumin loss connected to a flare up?
Thanks in advance
silec
07-16-2016, 05:22 PM   #13
Farmwife
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Hi Farmwife this is slightly off the point but if I can ask a few questions please?
Albumin loss - is this measured from blood, urine or by some other parameter?
Is the albumin loss connected to a flare up?
Thanks in advance
silec
Grace's is measured in her blood test.
I'm not sure if it can be measured by any other test.
I've never checked.
Your second question gets a yes and no answer
She has disease in her stomach so absorption is an issue with her, even when she isn't in an active flare.
it seemed with pushing meat ( Turkey, lamb, chicken) her levels went up a bit.
If she does full EEN it went up also.
it's never been a huge issue that the docs want to fix.
07-19-2016, 03:04 PM   #14
Jenn
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What's the latest? Sorry so late to the topic. My son's albumin was stubbornly low while on Humira pediatric dose, we added 6mp for a year and the protein levels recovered. He's now only on the adult Humira dose. No amount of supplement helped us, had to get the IBD under control. As an aside, my super picky-eater son is now not so picky, I think maybe there's a correlation to how they feel. Getting older helped too of course.
__________________
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
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