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Crohn's Disease Forum » Parents of Kids with IBD » We have a diagnosis! (And I'm not crazy!)


 
07-21-2016, 05:10 PM   #31
DanceMom
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Yikes! I hope they work well for her. I know they used to use long-term steroids a lot for JRA and RA before there were biologics. What dose is she going to be on?

Fingers crossed for no side effects!
The doctors haven't agreed on a medication or dosage yet. There just aren't a lot of trials done or case studies on what works. And each kid is so different. We may go with Prednisone or a steroid that targets the gut. We may do daily or several short bursts per month. Probably a trial and error kinda thing.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
07-24-2016, 05:45 PM   #32
kimmidwife
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That is frustrating! Hope they figure something out soon and come up with a plan!
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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.
08-11-2016, 10:42 AM   #33
Imerald
 
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I'm a little late, but I'm so glad you have a diagnosis! Will you still see Dr. F for other reasons at all? Regardless, I hope you love the next person just as much. I know how much that makes a difference. ((Hugs))


08-11-2016, 12:37 PM   #34
DanceMom
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We have an appointment with the Immunologist next week so hopefully we'll have a treatment plan after that. We see Dr. F next month but I'm not sure if he'll agree with the diagnosis or not. So many things still up in the air.

Meanwhile A seems to be getting worse. She wakes up every morning with facial edema. Could be a sinus thing (she has had bloody nasal discharge for a few weeks) or could be a sign of disease progression. She is definitely more fatigued and I worry she'll be miserable when school starts next week.
08-11-2016, 12:39 PM   #35
Imerald
 
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Is she still on the steroid? Could that be causing the edema at all?


08-11-2016, 01:07 PM   #36
DanceMom
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No steroid. She's at her best when on steroids. She's currently on Flovent, Zyrtec, IVIG, and nasal rinses. We stopped the Flonase in case it was contributing to the bloody noses.
08-11-2016, 08:13 PM   #37
my little penguin
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For Ds we were told to use the Flonase /nasonex etc then use saline nasal gel which keeps things moist
For Ds at least using the Flonase nasonex etc caused nose bleeds but not using them increased nose bleeds as well
So doctor had us add the saline gel

Did you let the immunologist know about the facial edema ???
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08-11-2016, 08:18 PM   #38
DanceMom
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For Ds we were told to use the Flonase /nasonex etc then use saline nasal gel which keeps things moist
For Ds at least using the Flonase nasonex etc caused nose bleeds but not using them increased nose bleeds as well
So doctor had us add the saline gel

Did you let the immunologist know about the facial edema ???
We were planning on d/c the Flonase once she'd been on the Zyrtec awhile anyway. It didn't seem to be working for her. The sinus rinses seem to be clearing her out pretty well. Lots of blood. Yuck.

The Immunologist doesn't know about the facial edema yet. I've taken pictures and will show her at the appointment. She's only in clinic Tuesday and Wednesday so we may as well just wait. It's very common in PIL unfortunately.
08-12-2016, 04:49 AM   #39
Sascot
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Sorry to hear that. Hope the immunologist can help next week
08-17-2016, 11:19 AM   #40
DanceMom
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A is going to start Octreotide. Not sure if Immunologist or GI will be prescribing. Don't know any details really and have to wait on insurance approval. We will be testing vitamin levels next week and supplementing if necessary. Also going to look into a therapist for her. I already know these injections may not go well (she's anxious already). Very hopeful now that we have a plan though!
08-17-2016, 11:20 AM   #41
ronroush7
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A is going to start Octreotide. Not sure if Immunologist or GI will be prescribing. Don't know any details really and have to wait on insurance approval. We will be testing vitamin levels next week and supplementing if necessary. Also going to look into a therapist for her. I already know these injections may not go well (she's anxious already). Very hopeful now that we have a plan though!
Congratulations

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08-17-2016, 12:17 PM   #42
Maya142
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What is the Octreotide for?

I hope the injections go well. Has she tried Buzzy? That might help a little.
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Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-17-2016, 12:48 PM   #43
DanceMom
Senior Member
What is the Octreotide for?

I hope the injections go well. Has she tried Buzzy? That might help a little.
I'm not 100% sure how the medication works, but it is supposed to reduce the amount of lymph produced/leaked and hopefully resolve the diarrhea.
08-17-2016, 12:53 PM   #44
Maya142
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Oh I see, that makes sense. Just had never heard of it and I was curious. I hope it works well for A! She deserves a very long break from all of this!

We have had great success with seeing a psychologist. For us, finding one that worked with kids with chronic illnesses is what really made the difference.
08-17-2016, 06:00 PM   #45
Sascot
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Hope the med works great. Fingers crossed she copes okay with the injections
08-17-2016, 10:24 PM   #46
kimmidwife
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Fingers triple cross that this med helps her! she really deserves a break!!! Will be waiting to hear some updates on how she is doing.
08-18-2016, 12:52 AM   #47
DustyKat
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So much catching up to do on my part, DanceMom! I am so happy to hear that a diagnosis has finally been found and am hoping with all my heart that this med provides lasting relief for your lass, bless her.

Good luck!!!
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08-19-2016, 04:47 AM   #48
CarolinAlaska
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I hope this makes a huge lasting improvement for her.
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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
08-29-2016, 01:36 PM   #49
DanceMom
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Anyone use the Boston Children's online second opinion program? I'm exploring all of our options because I'm sick of standing by while my girl declines and doctors argue about what to do.
08-29-2016, 03:01 PM   #50
Maya142
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We have been to BCH but haven't used the online program. We've only been to rheumatology there, not GI. It was great!
08-29-2016, 05:06 PM   #51
Farmwife
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FranG is a new mom with an update. That's where her son goes.
Hopefully this will tag her.

Hugs to you both
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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
08-29-2016, 06:24 PM   #52
Maya142
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I'll tag crohnsinct - she has been there for GI.
09-11-2016, 10:33 AM   #53
DanceMom
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We've decided to see a GI in Atlanta that treats other children with IL. We just weren't comfortable starting daily painful shots without his recommendation. So we head up next month and hopefully we'll develop a plan.

A is doing okay. She continues to have diarrhea and fatigue, but that's become her new normal and she handles it well. She's training for a 5k she wants to run in a few weeks. The sicker she becomes the harder she fights. Her WBC are down to 3.3 (4.5-13.5) ....and that was a week post infusion when they should be at their highest. Her disease is progressing.
09-11-2016, 10:39 AM   #54
my little penguin
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Just an FYI running -(training ) will increase diarrhea in most
Since runners trots is common in non Ibd folks
Are the docs ok with her WBC count being that low and waiting a month for a consult and basically longer without meds
09-11-2016, 10:49 AM   #55
DanceMom
Senior Member
Just an FYI running -(training ) will increase diarrhea in most
Since runners trots is common in non Ibd folks
Are the docs ok with her WBC count being that low and waiting a month for a consult and basically longer without meds
Somehow she pushes through physical activity (dance, running, PE) but does tend to have accidents. That's not new for her. She's happier when she's active so her doctors don't discourage it.

Our GI here ordered the labs but didn't seem bothered by the results as he wrote me a message and encouraged me to cancel our appointment scheduled for next week. He wanted us to see another GI in the practice but couldn't get us in until the end of October. We decided Atlanta was a better option. I spoke to the Immunology nurse about the low WBC and she said it isn't considered critical for her diagnoses. Hopefully they'll retest at her infusion (a little over a week away).
09-11-2016, 11:05 AM   #56
Maya142
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Hope you get a good treatment plan from the appt. Fingers crossed.

Way to go A! She is one tough kid. I hope they can get her feeling better SOON.
09-11-2016, 03:06 PM   #57
kimmidwife
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Hope it goes well with this new doctor. She really is an amazing kid!
09-12-2016, 04:29 AM   #58
DanceMom
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Lab results are slowly filtering in....

TTG IgA is 4 (weak positive, normal is less than 4). Her biopsies have always been negative for Celiac. Think this means anything? As far as I know this is the first she's had this lab so nothing to compare it to.
09-12-2016, 04:41 AM   #59
my little penguin
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Biopsies are the gold standard
When was her last upper scope done
And was she eating large amounts gluten at the time
My DH has one blood test positive ( not that test though ) but is not celiac
Or gluten intolerant
Ds is gluten intolerant but has negative tests and biopsies
09-12-2016, 04:52 AM   #60
DanceMom
Senior Member
Upper scope done in January. At that time she was on a regular diet so she had gluten daily.
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