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06-08-2017, 10:35 PM   #61
kimmidwife
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Prayers that this passes quickly!!!!
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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.
06-08-2017, 10:37 PM   #62
Maya142
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Way to go A for gaining weight!!

Really hope she starts feeling better soon. UTIs are awful!
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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
06-09-2017, 09:19 AM   #63
Optimistic
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Quick update....

A has gained 10 lbs this month! We're cutting the Periactin to every other day. Unfortunately the EN have flared again and she has another UTI. Third one this year. UTIs always start a downward spiral. We leave for vacation tomorrow and her recital is next week...so prayers and positive thoughts appreciated!
Sure. Hope you enjoy an uneventful vacation.
06-21-2017, 09:26 PM   #64
DanceMom
Senior Member
A is maintaining her weight very well. She looks great, very healthy. We saw the Immunologist today and will probably try Cellcept instead of Tacrolimus. Anyone used Cellcept? I'm a little concerned it may affect her liver. ALT and AST go up just slightly every month. ALT is 35 (10-30) and AST is 52 (10-30). I know they're practically normal now, but she couldn't tolerate 6mp. We'll see.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
06-21-2017, 11:13 PM   #65
Maya142
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We have talked about it but not used it. It's used a lot in Lupus and it can be very tough on the liver. It can also be hard on the stomach.

But we do know one or two kids with Lupus that it has helped a LOT.

But Tacromilus is worse in the long-term - really hard on the kidneys, I believe. It's used a lot in transplant patients. It's occasionally also used for IBD, in very refractory cases.

Just wondering - if A has an immune deficiency, why would they use something like Cellcept?
06-22-2017, 07:45 AM   #66
DanceMom
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We have talked about it but not used it. It's used a lot in Lupus and it can be very tough on the liver. It can also be hard on the stomach.

But we do know one or two kids with Lupus that it has helped a LOT.

But Tacromilus is worse in the long-term - really hard on the kidneys, I believe. It's used a lot in transplant patients. It's occasionally also used for IBD, in very refractory cases.

Just wondering - if A has an immune deficiency, why would they use something like Cellcept?
To be honest, she's complicated, and her GI and Immunologist can't quite agree on a treatment plan. She is deficient in IgG and often WBC, but she also has some autoimmune things going on like chronic erythema nodosum. The Immunologist believes that's what is attacking her rib cage and it's extremely painful for her. The GI believes Tacrolimus would help but would prefer sending her to a pain clinic to help her learn to live with the pain. I think that's cruel and want to prevent the stupid lumps from occurring. The Immunologist thinks Cellcept is a safe choice. She wants to treat the lymphangiectasia with Octreotide because she thinks it's affecting her absorption and overall well being. The GI thinks the lymphangiectasia is minimal and doesn't need to be treated. He's a little more wait and see....she's more like fix it before it becomes a huge problem. I just want her happy and pain free.
06-22-2017, 08:10 AM   #67
my little penguin
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Have you looked at auto inflammatory for the EN?
Skin stuff can be fixed by kineret
Including EN
Painful shots
But is used a lot in periodic fevers syndromes
Which involves many area including GI
Not hard on the liver at all

Used for sepsis so good for immune


It has been a miracle for ds sweets syndrome (same family of disease as EN )

Might be worth asking
Stelera would be the other one used a lot for skin issues and GI
06-22-2017, 08:20 AM   #68
DanceMom
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Have you looked at auto inflammatory for the EN?
Skin stuff can be fixed by kineret
Including EN
Painful shots
But is used a lot in periodic fevers syndromes
Which involves many area including GI
Not hard on the liver at all

Used for sepsis so good for immune


It has been a miracle for ds sweets syndrome (same family of disease as EN )

Might be worth asking
Stelera would be the other one used a lot for skin issues and GI
I don't think the lumps on her ribs would be considered a "skin issue". They're under the skin, so don't look like your typical discolored EN. She also has malabsorption and mild GI inflammation we're hoping the Cellcept will treat. Both doctors agree it's an immune dysregulation issue. It's more than just a rash. It has to do with energy levels, nutrition, etc. I'm on board with the Cellcept.
06-22-2017, 09:00 AM   #69
my little penguin
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I understand it's more than just a rash
Sweets is systemic
And so is pediodic fever they are immune dysregulation at its finest
Affecting all areas of the body
Not just the skin
I was trying to explain that systemic side of it may respond to kineret
Since IL -1 helps immune dysregulation

Most kids on it have GI skin joint
Lung kidney liver eye ear etc...
Issues as well as fatigue
Nausea

Sweets is systemic and unfortunately not just a rash
Symptoms are like the flu x1000 per Ds

Which is why I mentioned kineret
Since it took years for the docs to
Try it on Ds
06-22-2017, 09:06 AM   #70
my little penguin
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I realize you made a drug choice
Just letting you know what else is out there
Since we tried many many drugs to try and stop it
06-22-2017, 11:31 AM   #71
Maya142
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Worth a try!! I hope it will help!! A pain clinic isn't a bad idea to help her cope with the pain, but I agree, they should DEFINITELY treat it.

I hope Cellcept goes well .
06-27-2017, 11:51 AM   #72
DanceMom
Senior Member
2 doses in on the Cellcept! Due to her dose it had to be liquid. Initially she was disappointed, but says it actually doesn't taste too bad. I believe her dose is a moderate one given her weight, so I think we'll know whether it's going to work in a few months. She's excited that she's exempt from her 7th grade immunizations! lol
06-27-2017, 02:31 PM   #73
Farmwife
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My brother didn't have to get the shots either in school.
Lol he use to brag and I would be so jealous. Lol

I hope the meds works for A.
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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
06-27-2017, 05:09 PM   #74
Maya142
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Good luck!! Glad it's going well so far .

Is she not allowed any vaccines at all or just specific ones? We weren't told about that when we discussed Cellcept, but maybe my daughter would have taken a lower dose. She had already had the flu shot that year...
06-27-2017, 10:26 PM   #75
DanceMom
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Good luck!! Glad it's going well so far .

Is she not allowed any vaccines at all or just specific ones? We weren't told about that when we discussed Cellcept, but maybe my daughter would have taken a lower dose. She had already had the flu shot that year...
On Cellcept she will be considered "immune suppressed", so definitely no live vaccines. But vaccines are basically pointless for her anyway because her system can't continue to produce the antibodies. She's considered a "non-responder". The IVIG she gets should protect her, as long as donors are immunized. She relies 100% on herd immunity. She still gets the flu shot but we have no idea if she actually responds. Our guess is that it protects her for about 2 months.
06-28-2017, 05:18 AM   #76
my little penguin
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Fwiw none of the 7th grade shots are "live " vaccines so for kids with Crohns who are immunosuppressed due to mtx /imuran or biologics they can easily get all of their immunization including 7th grade -just not live ones like chicken pox

Since she doesn't respond regardless of drugs -I could see why they would skip them

Hope the meds work
06-28-2017, 06:29 AM   #77
DanceMom
Senior Member
Fwiw none of the 7th grade shots are "live " vaccines so for kids with Crohns who are immunosuppressed due to mtx /imuran or biologics they can easily get all of their immunization including 7th grade -just not live ones like chicken pox

Since she doesn't respond regardless of drugs -I could see why they would skip them

Hope the meds work
Thanks...but being immune suppressed with an immune deficiency is probably a tad different than being immune suppressed with Crohn's. I'm aware that the Tdap is not live...I was responding to Maya's question regarding what vaccines she can have.
06-29-2017, 06:05 PM   #78
kimmidwife
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Glad the first two doses went well. Fingers crossed for her!!!
07-21-2017, 02:48 PM   #79
DanceMom
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Almost a month on Cellcept and A is doing well! She spent some time at Camp Boggy Creek and has felt great. She's maintaining her weight without Periactin and her liver numbers have actually gone down! Her body definitely seems happier on Cellcept. Praying things stay peaceful!
07-21-2017, 04:51 PM   #80
Maya142
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That's wonderful!! So glad she is doing well!
08-02-2017, 07:21 PM   #81
DanceMom
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A continues to do well. She still has an inflammatory lump on her rib but she doesn't complain about it much.

She did have some side effects after her last infusion - severe stomach pains, diarrhea, vomiting, nausea, and headache. It was pretty rough for a few days. She's been asked to trial a new IVIG medication, Prometic, as part of a research study. I definitely think it's time for a switch.
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