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


 
11-09-2013, 11:13 PM   #31
Brian'sMom
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So glad your trip went well. We also were amazed with Mayo. Since you didn't get to see the GI doctor until Thursday, did you say they didn't do the tests she was wanting to do? (scopes, pill cam, etc). Were they able to do any tests before you had to leave?

Younger bone age in crohns is good. Means they have a window to help get things under control and time for her to catch up in growth
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Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
11-10-2013, 02:25 AM   #32
CarolinAlaska
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Jaedyn had a 10 year old bone scan at age 13 - it was the poor nutrition prior to her diagnosis.
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11-10-2013, 08:00 AM   #33
Farmwife
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So glad your trip went well. We also were amazed with Mayo. Since you didn't get to see the GI doctor until Thursday, did you say they didn't do the tests she was wanting to do? (scopes, pill cam, etc). Were they able to do any tests before you had to leave?

Younger bone age in crohns is good. Means they have a window to help get things under control and time for her to catch up in growth
She had the ct scan. We were asked to come back but I'm not sure we can.
Still waiting for results of the scan.
The GI assumed she was the first doc we saw and I informed her that wasn't the case.
We should have seen her first but their system is set up with first available gets schedule first and so on.
Her head doc said if we come back that she personally will make all Grace's appointments.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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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
11-10-2013, 09:52 AM   #34
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I am glad the experience was all good. I hope you are able to find a way to go back. Thanks for the update!
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11-10-2013, 10:59 AM   #35
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Sounds amazing FW. I so wish I could get the money together to take J.

Fingers crossed for your scan results and getting back there!! xxx
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11-10-2013, 06:43 PM   #36
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FW,
I hope you guys can get back there! Sounds like it was amazing. I am now in the process of deciding where to take Caitlyn for a second opinion.
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Crohn's Dx'ed Sept 08
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New secondary diagnosis: Gastroporesis Dec 2013
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11-11-2013, 04:37 AM   #37
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Sounds really great. What happens if you don't go back? Do they just send all their opnions/results back to your usual doctor? It's a pity all hospitals/doctors aren't as good!
11-11-2013, 12:42 PM   #38
Farmwife
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Sounds really great. What happens if you don't go back? Do they just send all their opnions/results back to your usual doctor? It's a pity all hospitals/doctors aren't as good!
Yes they'll work with the docs here. It's just with Mayo you can get things done fast where her hospital her takes awhile. Still it's good to know they will try to help all they can.
11-11-2013, 01:17 PM   #39
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Hi Farmwife. So glad everything went good. some of the big hospitals let you see the test results in the internet. I hope you get some answers.
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11-11-2013, 07:24 PM   #40
Farmwife
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Good news

CT Scan was normal for the bowels. YA!
She still suggest scopes and a pill cam but we'll see what Grace's ( Devos) hospital says about that. A trip is just not doable to the Mayo again.

The blessing is that the ct scan did show a problem with her spleen. So on to another specialist.

Update on Grace:
She's sick with a bad cold again.
Asthma, Eczema, poo pains and VERY painful hiccups are back with a vengeance.

I think where ready for a change in meds.
11-11-2013, 08:11 PM   #41
Jmrogers4
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I think we may be heading there as well - medicine change that is...
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11-12-2013, 11:59 AM   #42
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Hope she feels better soon.
11-12-2013, 12:26 PM   #43
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Hope she feels better soon!
11-12-2013, 02:10 PM   #44
Mylittlesunshine
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Hi Hun
Not been on here much so trying to catch up
So glad you made it to mayo clinic
And that it was worth the trip.
I do hope you manage to get answers for grace
So you can put her on the right treatment.
Hugs
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11-13-2013, 05:25 AM   #45
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Hi - Sorry Grace has been so poorly again - sounds like the Mayo clinic are helping a little - Sorry to not have been on here much and no time to catch up properly - Just wanted to send you hugs and support xxxx
11-21-2013, 03:31 PM   #46
Farmwife
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Hi all.
Corn is coming to an end on the farm as the sky threaten to drop tons on snow.
It's hard to believe another harvest is behind us.
The quiet solitude of winter is welcomed on this farm.

Well onto the reason for the post.

All opinions are in from the Mayo Clinic.
The GI at Mayo had Grace's slides shipped to her and their pathologist reviewed them.
They believe her disease was still very active during the second scopes.
As where her current GI believes there was improvement and classified it as mild.

Mayo GI believes that Grace has gastritis in the stomach that went into deeper layers by the second scopes. She now believe this could be the reasons for Grace's vomiting. nausea and lack of appetite. The path reports from her current GI never mentioned that.

Also her GI and Endo from Mayo are concerned because she has tested low in her serum cortisol. In her letter she stated that Grace is at risk for adrenal insufficiency. She recommended possible stress doses of steroid "might be needed".

The dietitian and Endo believe the reasons for Grace's sporadic low blood sugar could be from the continual feeds on EEN. They think she might run the risk of diabetes and such if her pancreas starts having more issues.
Her Primary doc and I also agree. It started when she started EEN.

Now the million Dollar Question..........................
Does she have just EGID's or just IBD or both?????????
She doesn't know.
She says by the second scopes she should have cleared most eos. She didn't. Matter of fact in two area's it slightlyincreased like you see in IBD.

She is recommending another scope and pill camera.
Her comments were that she believes Grace is "evolving" into full IBD.
So not too different then what her current GI thinks about early crohn's.
Mayo GI just thinks her disease is more active then what her current GI thinks.

The Mayo GI will be calling soon. I have more questions.
Her current GI will be getting a copy. I will be calling and discussing the results and a possible scope or maybe a med change.

Keep in mind we still have to meet with the Urologist down state. She still have WBC's in her Urine. It's a year now of this.

Update on Grace:
Grace recovered from her latest virus.
We started foods. She's had one night of overnight feeds and no vomiting. YA!

So there's the novel.
I thought the Merry-go-round was starting to slow down, but I guess not.
11-21-2013, 05:10 PM   #47
dannysmom
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Thanks so much for this update. I'd love to know what Mayo will do in terms of testing and treatment for Addison's .... this is something I felt was never completely ruled out for Danny. Will be thinking of you!
11-21-2013, 08:02 PM   #48
Farmwife
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Thanks so much for this update. I'd love to know what Mayo will do in terms of testing and treatment for Addison's .... this is something I felt was never completely ruled out for Danny. Will be thinking of you!
dannysmom what is Addison's???

Oh forgot to add. Grace's GP has added a endocrinologist to her list of future specialist.

So that makes:
GP, allergist, eye, GI, rheumy, dietitian, urologist, orthopedic, derm and now an endo.
11-21-2013, 08:12 PM   #49
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Addison's is adrenal insufficieny
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11-21-2013, 08:17 PM   #50
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Ummmm ok, her letter says she's a *risk* for this. How does one know if the have it.
11-21-2013, 08:25 PM   #51
araceli
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I know is very hard to go to a new Doctor expecting to find answers only to come out with more questions. I hope your Merry go around slows down soon.
11-21-2013, 08:26 PM   #52
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FW,
She may need some further testing to see whether or not she has it. It sounds like the people at Mayo are really on top of things. I really hope they will be able to give you more answers. I am so glad you were able to go there.
11-21-2013, 09:23 PM   #53
crohnsinct
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dannysmom what is Addison's???

Oh forgot to add. Grace's GP has added a endocrinologist to her list of future specialist.
But she saw an endo at Mayo. Maybe GP just wants one closer to home?
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11-22-2013, 08:34 AM   #54
Farmwife
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But she saw an endo at Mayo. Maybe GP just wants one closer to home?
Yes, she thought might as well get one now. It's not a bad idea to have one on Grace's team.
11-22-2013, 09:46 AM   #55
dannysmom
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A disease like Addison's could explain many/all symptoms - your body does not produce enough cortisone or aldosterone. The normal hormone levels do fluctuate and the normal range is pretty wide. (Addison's could also cause elevated sweat tests which Danny had.) Basic testing involves blood tests and urine/24 hour urine. There is also an ACTH stimulation test ... which Danny did not have as his basic testing was considered normal enough by his endocrinologist. Addison's is treated by replacing the missing hormones.
11-23-2013, 03:36 PM   #56
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Farmwife. I do not write often (usually reading on my phone) but your family is in my thoughts often. It has been quite a journey from the doctors not thinking much was wrong to having a team and various dx floating around. Your family is lucky to have you taking care of them.
I do not know much about Addison's but watched something on JFK yesterday and apparently he had it. Perhaps she will not be princess grace when she grows up but rather President Grace.
Hope she starts feeling better soon.
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11-28-2013, 10:28 PM   #57
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I'm so thankful that we had a good afternoon for Thanksgiving because
the evening was bad.
Stomach cramps, cancer sores problems and the most upsetting news was
watching her wince in pain while passing stool.
Also I saw some red but am in denial until I see it again.
I can't believe after two weeks of reintro to some foods she's into a flare again.
I mean I felt she was heading there for a month or so but to actually see it is so upsetting.


My hubby and I agreed that LDN is not enough at the present time to keep her in remission and in the coming week will discuss new medications with her GI.
11-29-2013, 04:38 AM   #58
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So sorry to hear that. Thinking of you!
12-01-2013, 04:27 PM   #59
Farmwife
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Headaches and belly aches and rash.

Grace has told me for 3 nights in a row that her forehead hurts. Also her belly pains are picking up.
It's only happening at night. At first I thought allergy related and it still could be but she is on 4 different meds to control it. Allergy wise she's doing fine....ish.

What can cause headaches as a new symptom?

Is there anything that can be done to help her overcome them.

Also, she has what I think is a fungus infection the popped up on the bottom of her toes and is on the top of her feet and is spreading up her legs. The crazy thing is when she's resting it blends into her leg but when she's running or showering it turn red. It feels like dry skin and seems painful when it's red. I've treated with anti-fugal cream but it's not going away. I've also treated for possible eczema but that doesn't help? Any Ideas????
I'll call ALL (or most of them tomorrow) docs tomorrow.
12-01-2013, 04:35 PM   #60
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Headaches = Neuro
Log them
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Crohn's Disease Forum » Parents of Kids with IBD » The Little Farm Girl, LDN, Full EEN & Mayo Clinic
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