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Crohn's Disease Forum » Parents of Kids with IBD » The Little Farm Girl, LDN, Full EEN & Mayo Clinic


 
12-01-2013, 04:39 PM   #61
my little penguin
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Leg rash call rhuemo
Does it blanch when you press on it ?
Is it in streaks ?
Pain when you touch it?
Things Rheumo needs to know
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12-01-2013, 04:40 PM   #62
Farmwife
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Thanks MLP.
Her headaches aren't horrible yet. She rubs her forehead and says it hurts but no meds needed YET.
I don't know if that would warrant a Neuro.
I'm not just saying that because I don't want to add another specialist to her life. lol
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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
12-01-2013, 04:45 PM   #63
Farmwife
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Leg rash call rhuemo
Does it blanch when you press on it ?
Is it in streaks ?
Pain when you touch it?
Things Rheumo needs to know
Yes it blanches, no streaks, painful only when it's red.

It's on the surface. It feels like sand paper. Her toes (bottom ONLY, not in-between) have been a problem for months and the top of her feet rash has been there for a few weeks and just now is spreading up her legs. I know LDN can cause fungus to flourish in some.
12-01-2013, 04:56 PM   #64
my little penguin
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Log the headaches for a month then see a Neuro
Depending on how many ....
They may do more
12-01-2013, 05:02 PM   #65
Niks
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Farmwife, J has been getting headaches too, I was thinking that it is more likely to be down to not keeping enought fluids down. I know Grace doesn't have that problem.

Really hope they don't get to bad for her xx
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3. Nephrolithiasis
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12-01-2013, 05:07 PM   #66
Farmwife
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Well Grace is mostly food now. She still has 3 EEN juices at night.
Her weight has gone up 4 lbs since starting some foods. Her nausea is almost gone. YA!
12-01-2013, 05:43 PM   #67
DanceMom
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A gets headaches too, always has. Tylenol doesn't help her headaches much. We still haven't figured out the cause of her headaches. A is also a rashy child. She still has some sort of rash on her thighs. These things make me wonder about an autoimmune disorder.....
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12-01-2013, 06:22 PM   #68
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DanceMom, the Mayo GI was wondering that about kids like Grace.
12-01-2013, 07:12 PM   #69
Mehita
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That rash sounds like what DS had back in Oct/Nov while flaring except his was on his forehead and nose. Particularly the sandpapery feel. It has since gone away with Remicade.
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- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
12-01-2013, 09:07 PM   #70
Momto2girls
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Gracie had headaches a lot, too. And also always her forehead. She's rashy too, but never her feet? Sorry Grace isn't doing so great. Hang in there!
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12-02-2013, 07:16 AM   #71
dannysmom
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Danny had a headache in his forehead for years. We never did figure it out and nothing helped. (His serum ammonia levels were always elevated when he had a headache.) Has Grace started any new medications recently? Good luck with your dr calls!
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12-02-2013, 09:51 AM   #72
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Caitlyn gets headaches and rashes too. Maybe it is a Crohn's thing. We are going to bring it up at the appt at CHOP.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
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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.
12-02-2013, 08:49 PM   #73
Farmwife
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HELP


OK the blessing of Grace getting older is she can describe things better.

Grace has always had joint pains and at times it seems like she has to move during the legs pains.

For the last few days she has been in a sitting potion and the has to stand.
Of course this happens during dinner or at school, during situations that she NEEDS to be sitting.

Today I asked what is going on.
She said that it hurts when she sits for more than a few seconds (minutes in adult time)
and that she stands to help the pain. I said does the pain go away? She said no but it helps to stand.

Also my hubby noticed that Grace has taken a few falls over the last 3 days.

I'll be on the phone AGAIN with the rheumatologist tomorrow.

Any ideas? Does this happen with anyone here?
12-02-2013, 08:52 PM   #74
DanceMom
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I have restless legs syndrome and standing relieves the achiness temporarily. RLS can be caused by low iron. Has she had hers checked lately?
12-02-2013, 08:55 PM   #75
Farmwife
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She newly dx with anemia.

I've had RLS. My mom has to have meds to help her RLS.
But Grace seems like she's in a lot more pain. Does RLS cause you to fall or trip?
12-02-2013, 08:57 PM   #76
DanceMom
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No, I don't fall or trip but my legs do twitch uncontrollably at times. Kids are pretty clumsy though. Even my dancer walks into walls and trips over her own feet.
12-02-2013, 09:00 PM   #77
Farmwife
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Thanks, I'll check that out.

I guess my biggest concern is that it has to do with her spine.
Like something's pinching a nerve.
12-02-2013, 09:01 PM   #78
my little penguin
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See juvenile arthritis

http://www.m.webmd.com/a-to-z-guides...nile-arthritis
12-02-2013, 10:29 PM   #79
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Both my daughters have a form of juvenile arthritis and their biggest complaint is pain when sitting for long periods of time. They both have 504s and one of their accommodations is extra breaks so they can get up and walk around in long exams. Pain that gets better with movement is one of the characteristics of inflammatory arthritis.
Hope she feels better soon!
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Mom of M (20)
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Mom of S (23)
dx with JIA at 14
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12-05-2013, 02:54 AM   #80
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I'd go back if I were you and get all the test done. You can contact Angel Flights (I think that's the name, not sure, google it) for free flights for medical care. We did that when my son had to go out of state for a test that wasn't offered in our state at the time. That's where he got his dx of severe delayed gastric emptying.
12-05-2013, 03:10 PM   #81
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Feeling totally deflated at the moment.

I had Grace's GP called and tell me that maybe we're over doing it here.
Lets take her off some of the meds and just try to treat the constipation.
Maybe the top eight free diet will be enough to fix things.
Do you ALL know how I've dreamed of that.


It's easy enough for me to question myself. I don't need help doing so

Why does Grace's smile rate her pains? Why am I thinking the GP is right when I know she's dead wrong? Why do I have to find a new GP?


Why don't doctors listen?
12-05-2013, 04:11 PM   #82
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I know how that feels hun.

Sending big Hugs xxxx
12-05-2013, 04:28 PM   #83
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It is so depressing when doctors don't listen. They seem all keen, try a few tests and treatments, but the minute kids don't get better straight away, it's like they lose interest again. Sorry you are having to go through this.
12-05-2013, 09:36 PM   #84
my little penguin
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Can you explain why with a complex kiddo like grace your gp is dictating GI care?
And why you are not referring to your current Gi or even mayo Gi instructions?
Did they ( either Gi )tell you to just treat the constipation ?
Did they( either Gi) want her back on a top eight free diet and off EEN ?
How fast did you reintroduce food ?
I know for DS it took close to a month to be able to eat normally again since the gut was not used to food .

A gp is just that a gp and typically is not the specialist handling her GI issues .
So why is your gp advising on her GI issues ?


Hope she feels better
12-05-2013, 09:53 PM   #85
Farmwife
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The more I think about it, I think she was overwhelmed with Grace's care.
She a private doctor. Small staff and is nearing retirement.
She's always on vacation or taking days off.
I was thinking about moving to a bigger practice with better hours and hospital privileges for Grace.
I do like her and am very thankful for all that she did but time to move on.

I'll have to call and get her a new GP soon. She was up tonight in horrendous gas pain.
This is what it was like a year ago.
12-05-2013, 11:22 PM   #86
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Oh this poor kid breaks my heart. Sounds exactly how my road started except for me is started at 30.

I think it's just hard to accept that doctors are shooting in the dark on most IBD issues. I am lucky enough to live 4 hours from the mayo, but i often asked myself have they really done anything for me in 16 years of treating there. If i crash i want to be at the mayo, but i really cant say they have done too much to help me with the day to day stuff.

Btw, once you tell your local doctors you have been to the Mayo...yikes. It's almost like they won't give an opinion anymore and will simply refer you to the Mayo recommendations for fear of malpracticing.
12-06-2013, 11:30 AM   #87
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Hello farmwife. My son gets pain when sitting for a while. coccyx, back and neck, sometimes ribcage sides. Legs get sleepy, He feels better when he stands up and moves. We have appointment with a neurologist, I will suggest you take Grace to one, at least you will have peace of mind if nothing is wrong with nerves or muscle. Did she had a lumbar or pelvis mri? If she had a tethered spinal cord it will show. Hugs.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
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12-07-2013, 05:11 AM   #88
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Hey FW

Re headaches: For Sarah headaches were one of her symptoms pre diagnosis. They can be a EIM of IBD and for Sarah they eventually abated when she gained remission.

Thinking of you and your princess and sending love and squishy hugs your way.

Dusty. xxx
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12-08-2013, 10:38 AM   #89
Brian'sMom
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Thanks, I'll check that out.

I guess my biggest concern is that it has to do with her spine.
Like something's pinching a nerve.
We have a friend that is a chiropractor in our town. He recently told me that he treats some crohns patients with doing adjustments on them. He said there are nerves in lower back that contribute to bowel area. He said he gives them an adjustment to help 'release' the nerve... I'm not explaining it like he did. Whatever it was he said "Its like when you have a pinched nerve in the neck that is causing hand problems...releasing that helps. The colon area has nerves too". The whole nervous system thing. You might want to ask one.... I've never been to a chiropractor nor has anyone I know. But now I'm wondering about it. He did an adjustment on Brian. He wants to do 2 more this month and then maybe monthly or bi monthly. I'm still researching it. He said a chiropractor can NEVER cure crohns...just help. So he would never replace medicine. He's a nice guy just trying to help us where he can. I included a couple links... I haven't studied them thoroughly cause I'm just looking into it. But these links talk about the nervous system and the spine and its relation to the nervous system and colitis. Probably better articles. I just haven't spent a lot of time on it yet.
http://kimbertonchiropractic.com/how...tis---ibs.html
http://www.chiroone.net/how-chiropra...crohns-disease
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.

Last edited by Brian'sMom; 12-08-2013 at 11:19 AM.
12-08-2013, 05:03 PM   #90
crohnsinct
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O was seeing a chiropractor weekly for a few months and she felt great. This is another couldn't hurt (well unless you get a lousy chiro) might help. We stopped in August because insurance didn't cover it and she is begging to go back. Looking for one on our plan now.
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Daughter O dx 2/1/12 at age 12
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Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
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Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
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