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Crohn's Disease Forum » Parents of Kids with IBD » Summer Time Update for my Farm Kids


 
07-17-2014, 09:41 PM   #1
Farmwife
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Summer Time Update for my Farm Kids

Summer has been chugging along and its been busy but nice to have some routine.

Grace's update hasn't really changed, it's better then before dx but still not right.
Her bowel habits seem to be changing. Also I think we'll have to up her humira because day seven or eight she seems to flare a bit.

My boy hasn't been back to the GI since his scopes.
We hoped it would get better but it hasn't happened yet.
The GP labeled him with Ibs and gerd.
His symptoms- pain in his stomach when he eats and sometimes when he's not.
Bad abdominal cramps before having bm ( not all the time). Low body weight but not ftt yet. He has had blood in his stool but does have a fissures.
GP want the GI to take the lead for the gerd/Ibs like symptoms.

So next month we meet with the new GI. Should be loads of fun.

I hope y'all are doing good. I don't post as much but I always try to check on ya.
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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
07-18-2014, 12:14 AM   #2
FrozenGirl
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Was hoping for a better update but nice to let everyone know. I hope upping the Humira helps Grace. Poor boy, must be tough on you having two with GI symptoms. Good luck with the new gi!
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Dx: Ulcerative Colitis, Nov 2013
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Vitamin D 1000iu
Calcium
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Methotrexate: 15 mg (injection)
07-20-2014, 07:53 AM   #3
Farmwife
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Humira every ten days, how does your pharmacy handle this?

Grace's specialty pharmacy only sent me two humira because they come in a pack.
I called and said she needs three a month now. The can see the order but don't now how to handle it because two come in a pack. You wouldn't think it's a big deal but it seems to be.

I just used her last humira and still no word on how they'll handle it.
07-20-2014, 09:08 AM   #4
my little penguin
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I thought she has been on every 10 days for a while.
From dealing with our I think you just have to call more often .
One box every 28 days. But call after 20 days to be delivered before day 30( her third shot ).
Our will ship within 24 hours of calling sometimes needs 48-72 hours for a new script.
You won't have extra but then your not suppose to .
Good luck
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07-20-2014, 11:51 AM   #5
Maya142
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You can ask her GI/ rheumatologist's office for a sample, if they don't get you one on time.
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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
07-20-2014, 12:23 PM   #6
Farmwife
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Mlp and Maya we were using samples the rheumatologist gave us already.
They've run out.
Grace can't be the first at the big mail pharmacy to need three shots a month.
You think they would have a protocol for this......like mlp describes.

Of course what's ironic is I think she might have to go to seven days for the humira but I'm still in my bubble until it pops.

Insurances you gotta love them.
07-20-2014, 12:53 PM   #7
my little penguin
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If you used samples when was the new script called in ??
07-20-2014, 02:45 PM   #8
Farmwife
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A month ago.....I believe.
He gave the samples to make sure it would improve things, if not we would head to Remicade.
It's worked (kind of), so he sent the new script though.
I'll call tomorrow.
Just wondering how other pharmacies do it.
07-20-2014, 02:48 PM   #9
Maya142
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You might have to chase it a little - I vaguely remember calling several times when M was put on Humira every 10 days. She had to go to weekly shots and I remember that our insurance had no issue with that - it was easier than getting Humira every 10 days!
07-21-2014, 01:12 PM   #10
Farmwife
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Yup, they'll call every twenty days. Why did that have to be so hard. for such an easy answer.
07-21-2014, 06:41 PM   #11
my little penguin
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Glad it is working out .
08-03-2014, 09:45 PM   #12
Farmwife
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Some help PLEASE.
Grace's is having more issues
She's going pee a lot. She seems like the need to urinate last for a few hours and then goes away. Took her to the GP and no UTI. She had no pain and the urine appears normal in color.
She's had this before and the pediatric urologist said he believes it caused from pressure of the colon put on the bladder.
Well Grace is going poo 3-4 (maybe more) a day. That it's new for her. It can be formed to lose water stool all in the same day. Plus low grade fever and easy bruising.

So to me if the colon is moving the stool out that their would be no pressure on the bladder, right?
Do your kids have bladder involvement that's not UTI's?


Also her arthritis has return. I know something evil is happening I just don't know what. We meet with the new GI this week and the rheumatologist hopefully will call Monday and let us know what he wants to do. The last appointment Remicade was mentioned. I'm hoping to keep with humira a little longer and up the time.
No easy answers.
08-03-2014, 09:55 PM   #13
DanceMom
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A has some funky UTI-ish symptoms as well. She gets sharp pains that last anywhere from a few seconds to a few hours. She also feels the urge to go often and has even wet her pants. Her urine is clear and it doesn't hurt worse when she urinates so we haven't gone to the doctor about it yet. When she had a UTI back in February she was in severe pain and had very bloody urine, so this is different. Not sure exactly what is causing it and I'm sorry Grace is having issues as well.
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Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
08-03-2014, 09:57 PM   #14
my little penguin
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Just sending hugs
No ideas
Let us know what the Rheumo/gi say
08-03-2014, 10:06 PM   #15
Maya142
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Not sure - could it be overflow diarrhea? I think the medical term is encopresis: http://www.mayoclinic.org/diseases-c...n/con-20029758

I hope the GI/ rheumatologist can figure it out, whatever it is! Did you ever move her to weekly Humira? It made a big difference for M.

The other thing I've heard of is urethritis with AS (my husband had it when he was younger, in his 20s). I've never heard of it in little kids ( but I have met a parent of a teenage boy with Juvenile AS who does have urethritis when he flares).

Also, M has low-grade fever with her arthritis flares. Her doctors have never been very concerned, it's just more evidence that she's not in remission. Hers actually goes away when she's on steroids.

Sending hugs!
08-03-2014, 11:12 PM   #16
Catherine
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Urine test? Did they only do the dip test in the office?
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
08-04-2014, 04:05 AM   #17
Sascot
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So sorry to hear things are deteriorating! I hope the GI can help,that's good it's not long till the appointment. As for the urine, it may be irritation of the muscles around the bladder. I believe it is called trigonitis - inflammation of the trigone muscle around the bladder. If her joint issues are worsening, then maybe the area around the pubic joint is inflamed. I had this issue for a few weeks, irritation and frequency but no UTI, we never got any real answers but it did just go away on its own, so maybe Grace's frequency will too.
08-04-2014, 06:32 AM   #18
Farmwife
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Urine test? Did they only do the dip test in the office?
Catherine, yes they did the dip and then looked under a microscope in the office and then send it for a culture. She always shows WBC in the urine but only a small amount.

Maya and Sascot that's always possibilities. She had this before but it seems worse right now.
DanceMom or girls sound alike. Grace in the flare a few months ago had the sharp pain but not to much this time but she does has abdominal pains now.

Off for her to get her labs taken but they never show to much.
08-05-2014, 08:31 AM   #19
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Back to the hospital to have Grace give another urine sample.
Labs say her sed rate is 14 which is in normal range (0-20) but Grace is always between 2-5 even at her sickest.
Also her bun level has dropped really low.....I guess. I'll be asking for the report today.

Has any one dealt with low bun levels before?
08-06-2014, 03:27 PM   #20
Farmwife
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Tomorrow is the big day to meet with the new gi.
I don't know why but it's a bit nerve racking.

Rheumatologist nurse called and got my message mixed up,
so now I have to wait another day to find out what to do with Grace's worsening symptoms.
08-06-2014, 03:30 PM   #21
Maya142
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Steroids? Has Grace ever had joint injections? They usually do them under anesthesia for little kids and if many joints need to be injected. They've worked really well for M in the past, I think we'll be doing more soon.
08-06-2014, 04:15 PM   #22
Farmwife
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I'm willing to do the shots in the future but right now I don't think it's bad enough.
I think her issues are more her tendons and/or ligaments.

I'm wondering about a pred burst but I'll see what all the docs say.
08-06-2014, 04:18 PM   #23
Maya142
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If it's her tendons and ligaments, it sounds more like JSpA than JRA (which makes sense considering the IBD). M is on steroids now and really enjoying feeling good!

I hope they're able to get her weekly Humira SOON!
08-06-2014, 05:12 PM   #24
my little penguin
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^^^^ yeah that
80% of low grade Ibd kids go on to develop JSpA
08-06-2014, 05:17 PM   #25
Farmwife
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"Low grade" mlp?
08-06-2014, 05:28 PM   #26
Maya142
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I think she means visually mild IBD. So for example M's scopes always look mostly ok (just some redness) but biopsies show inflammation and granulomas.
08-06-2014, 05:46 PM   #27
my little penguin
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Yep same with DS
Visually mild but biopsies tell a different story .
The paper referred to it as low grade Ibd
I just have found a copy yet
08-06-2014, 06:25 PM   #28
Farmwife
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That's what confuses me Why if it's low grade or microscopic in Grace's case is this so complicated? Why isn't her symptoms mild? Why do these kids with "low grade" have to be prone to everything???

Sorry my rants over. Just stressed with what will take place tomorrow.
08-06-2014, 07:42 PM   #29
Tesscorm
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Good luck tomorrow!!
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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
08-07-2014, 11:01 AM   #30
Sascot
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Hope the appt goes well.
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