02-11-2013, 04:01 PM   #271
Mylittlesunshine
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Thank you it means a lot to have
Good friends like u all.
I hope ur kids are doing well x
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Currently on EN
Neacate LCP
Multivitamin
Folicacid
Iron
Dalavit
Calcium sandos
Dyclavlovin
Inhalers x3
Pred tapering
02-11-2013, 04:23 PM   #272
CarolinAlaska
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MLS, I'm so sorry you aren't making progress. Are you seeing a cardiologist or just an internist?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
02-11-2013, 05:34 PM   #273
Mylittlesunshine
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Carolin I'm seeing a cardiologist
02-11-2013, 07:18 PM   #274
CarolinAlaska
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Good. Sometimes it isn't straightforward and just takes time. I hope that you get good answers soon.
02-13-2013, 01:38 AM   #275
upsetmom
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How are you feeling MLS .....and how's your little girl.
02-13-2013, 04:40 AM   #276
Sascot
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Sorry to hear you are still in the hospital. Hope they get some answers soon so you can get home.
02-13-2013, 08:05 AM   #277
Suzysu
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I hope they get you on some meds and out of there asap - I really feel for you and am keeping my fingers crossed that you will be on the road to recovery soon xxxx
02-16-2013, 07:52 AM   #278
Mylittlesunshine
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Hi everyone
Thank you so much for the lovely messages
I'm still in hospital after two long weeks.
One of the symptoms I had was a enlarged
Right eye and after some tests I've lost
A quarter of my vision in it.
There not sure if its tempory or not.
02-16-2013, 07:54 AM   #279
Farmwife
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Thanks for the update.
Did you ever find out the biopsy result for your kid?
I hope they were clear. You have enough to deal with.
Keep us posted.
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I'm mom to............... Little Farm Girl 9 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 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
02-16-2013, 07:57 AM   #280
Mylittlesunshine
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Update on Lucy
Lucy is doing well she is having
Approx 4 feeds a day at the moment
It's enough.
I've got a telephone appointment booked
For Monday morning to discuss bioposys results.
So will let you all know.
02-16-2013, 08:00 AM   #281
Farmwife
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That's great.
I'm so happy to hear good news.
Has your hubby been able to bring the kid(s) to see you?
02-16-2013, 11:52 AM   #282
Mylittlesunshine
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Yeah farm wife hubby tries to bring them
In for an hour or so each day
It's not them same though.
How's grace doing ?
02-16-2013, 01:47 PM   #283
Kimberly27
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Dear Mylittlesunshine,

I know you have longer relationships with the people who have been posting on your thread, but I'm sure I speak for a lot of us (newbies and others) who have been following your story as well as your daughter's. We are all routing for both of you- good thoughts, prayers, positive energy, etc. I just wanted to point out that you are in many people's thoughts and prayers, including mine. I lit two candle: one for you, and one for your "sunshine".

Hugs.

Kimberly
02-16-2013, 02:25 PM   #284
xmdmom
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I've been following your story and am sending healing thoughts to you and your daughter.

MylittleSunshine, do they doctors understand what caused your cardiomyopathy? (If not, did they rule out hyperthyroidism? It can cause cardiomyopathy, elevated bp, fast heart rate and eye or eyes that appear enlarged, and sometimes vision loss.)
02-16-2013, 05:27 PM   #285
Mylittlesunshine
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Xmdmom I haven't heard them mention it
Will look into that thank you for mentioning
It will let you know x
02-16-2013, 07:11 PM   #286
CarolinAlaska
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MLS, I am sorry you are still in hospital. The eye thing sounds terrible and scary. You're in my thoughts and prayers.
02-16-2013, 09:21 PM   #287
Jmrogers4
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Thinking and praying for you still. You and Lucy could sure use some good news.
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Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-20-2013, 12:38 PM   #288
Mylittlesunshine
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Another update
I've seen the eye speaicalist yesterday
And have been told ive lost a quarter
Of my vision in the right .
I'm waiting for him to let me know
What the outcome will be .
I've had today a MRI brain scan which
I needed sedation for depending if
This shows anthing will depend if I
Get to go home by weekend.
It's been along 3weeks .
02-20-2013, 02:17 PM   #289
upsetmom
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Thanks for the update.
02-20-2013, 04:50 PM   #290
Kimberly27
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Sending good thoughts your way.

How's Lucy? Did you finally get some answers?

Kimberly
02-20-2013, 05:02 PM   #291
Jmrogers4
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Thank you for the update. Sending positive and healing thoughts and prayers your way.
02-21-2013, 02:58 AM   #292
Mylittlesunshine
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Hi everyone
Yes biopsy results are here finally
Diagnoised as crohns officially
Was told she had inflammation
In theTI, rectum, colon and stomach
Also she has lymphnode hyperplasia
At the moment GI is happy to
Leave her with EN treatment until
I'm out of hospital, I still have many
Questions and and want more details
As the conversation was short.
Will try and start a new thread soon for
Lucy.
At the moment she is doing ok the EN
Seems to be controlling symptoms
But she still hasn't put weight I think.
I'm still trying to take this all in feels
Abit much to handle at the moment
And I'm scared for what the future holds
For her x
02-21-2013, 03:15 AM   #293
Sascot
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Sorry to hear about the Crohn's diagnosis, but at least they now know what is happening and can start giving the right treatment. My son did very well on only EN for a while, so at least you can think through all your questions before deciding on a maintenance med. I hope you will be able to leave the hospital soon - how are you feeling?
02-21-2013, 03:42 AM   #294
Mylittlesunshine
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Sascot I'm not feeling to bad some days
Are better than others I just take each day
As it comes , I'm just finding it hard to
Sink in that I've got a serious heart condition
That is going to affect the rest of my life.
02-21-2013, 04:25 AM   #295
upsetmom
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I'm sorry about your daughter
Take care of yourself and try not to stress...
02-21-2013, 11:20 AM   #296
Jmrogers4
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Sorry about the dx's but at least you have an answer and can move forward making a plan. Take care of yourself.
02-21-2013, 06:44 PM   #297
CarolinAlaska
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MLS, sorry for so much bad news at once. If you are anything like me, though, at least some diagnosis is better than the worries about what it could be. Now you can face it for what it is. I pray you both find healing.
02-21-2013, 07:04 PM   #298
Mylittlesunshine
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Today I saw the eye speaicalist
And have been diagnoised with
Keracotonus disease of the right
Eye, this can not be cured the
Only is they can prolong it from progressing
It's where the cornier goes goes a cone she
And thiner as it progresses which scares me
As I could loose my sight in that eye or
Have to have a cornier transplant .
It feels like I'm a walking time bomb
Ready to go off, I can't help wondering
What other illness my body has been hiding
Because in 3 weeks a I found I have 2
Diseases which has majour effects.
Everything feels like its breaking apart
And I just feel like crying 😭
02-21-2013, 07:08 PM   #299
Clash
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MLS, I'm so sorry that you are having to deal with so much right now. I want to send my support and hugs as well as prayers your way. We are all here for you whenever you need support. If you feel like crying then I say let it out. And we are always here.
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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
02-21-2013, 08:16 PM   #300
Farmwife
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Hugs, hugs, hugs, hugs, hugs!!!!!!!!!!!!!!!!!!!!!!!!!!
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