# LDN and my little farm girl



## Farmwife

After much research and thought we decided to start Grace our 4 yr old on  Low Dose Naltrexone (LDN). This is a promising treatment with little side effect. I hope in the coming days to see it working wonders for Grace.

Her GP, GI and Pharmacist were all contacted and ask there opinions on this drug BUT at the end of the day it was left up to us to make the call.

Please remember parents that untreated IBD is NEVER a good plan.
 Always seek your GI's advice before taking any advice from this thread.
 I'm not a medical professional.
 I'm just a mom trying my best to make the right decision for 
the love of my life (one of them:smile.

So here starts yet another new direction for us and what I hope to be the direction of lasting remission. 


Her dose is 1.5mg to be taken a night. 

HUGS to all:ghug:


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## Devynnsmom

(((hugs))) I hope you see wonders for Grace too!!


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## Mehita

Good luck, Grace!


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## jmckinley

Good luck! It would be great if LDN is the answer for Grace!!


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## Sascot

Good luck!!! Hope it works wonders for Grace :thumright:


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## polly13

Fingers and toes crossed that it will work for grace


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## Niks

Have everything crossed for Grace!!  :ghug:  xx


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## Jane and Nick

LDN looks so promising. I wish you lots of luck that this works for Grace. I would also pick this for Nick if it is an option.
Fingers and toes crossed.


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## Johnnysmom

Keeping my fingers crossed this does the trick for Grace!!  

How long does it take before you know if LDN is working?  

((((((Hugs))))) I know these decisions are so hard.


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## Tesscorm

Good luck!!!  I so hope this works for Grace!!! :sun:


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## ChampsMom

Praying this is the answer!!  Hugs to Grace and you!!!


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## EthanClark

Good Luck Grace!!! :ghug:


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## Kev

Best wishes.. fingers crossed.  Dosage based on her size, as per the pediatric study?


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## Farmwife

Kev said:


> Best wishes.. fingers crossed.  Dosage based on her size, as per the pediatric study?



Thanks everyone.

Yes Kev. I even made sure he (Pharmacist) uses the right filler. Grace can have up to 2.0mg BUT the Pharmacist was more comfortable with 1.5mg because he's compounded that dose before. If she seems to need more at least there is some wriggle room.


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## Farmwife

Johnnysmom said:


> Keeping my fingers crossed this does the trick for Grace!!
> 
> How long does it take before you know if LDN is working?
> 
> ((((((Hugs))))) I know these decisions are so hard.


My understanding is that LDN can take up to 3 months. I should check that again.:yfaint:


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## momoftwinboys

Hope LDN gives Grace the healthy carefree childhood all kids should have.

I posted in the research section an update from the company given orphan drug status for LDN and approved for phase 3 clinical trial for adults and peds. 
http://www.crohnsforum.com/showthread.php?t=51441


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## Farmwife

Thanks momoftwinboys.

The first official update of Grace starting LDN.

Day 1

Today she seemed tired (but has been for the last week).
She seemed angry (she's four year old princess:yfaint.
Joint pains seem to be a bother.
Acid reflex tonight.

STILL NOT AS BAD AS BEFORE!!!!!!!!!!!!! Every symptom is livable.

Oh...no poo!:ybatty:


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## my little penguin

Good luck with the princess thing


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## Niks

Bless her! The Princess bit made me smile!  J at four would run up to my bedroom and throw a tantrum infront of my mirrored wardrobe, so she could see the full affect!!

(((hugs))). Hope her symptoms ease off very soon xx


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## Jmrogers4

Hope it works wonders for her.  So she can concentrate on being a princess only.


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## Mehita

Has she started taking it yet?


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## xSophiexx

Oohi SO hope this works!! good luck little farm family!! xx


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## CarolinAlaska

FW, I'm glad you have found something hopeful to try for Grace.  How are things the last couple days?


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## Farmwife

Day 4

She seems to be sleeping wonderfully. Good news!
Still pale
She had a slightly painful BM.
Not as hungry

Today
We had to cancel our afternoon plans because Grace was having bad acid reflex (I believe).

We made the choice to stop trailing food right now. 
We need to know what is working and what's not. 
Having any food failures would just mix the results. KWIM

Thoughts on LDN so far....
It's not going to be a quick fix.


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## Farmwife

:banana:Grace poo'ed!!!:banana: I mean she poo'ed normal! It was brown and formed! My gosh, she has the ability to poo normal. :awe:Who knew????? Is it because of the LDN??? :yrolleyes:I don't know????



:ghug:
(Hard to believe I was once a professional.):yfaint:


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## Tesscorm

GREAT NEWS!!!!  :banana: :banana:


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## Jmrogers4

:yoshijumpjoy::yoshijumpjoy: Yahoo!  Whatever made it happen, just glad it did.


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## Sascot

Yay for poo!!!  Fab news :thumright:


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## LJS

Such great news!! How is Grace doing now? Are you having a local pharmacy compound the LDN or are you using the one in FL or NY?

I am meeting wtih my Ped GI on Friday at the hospital to discuss using LDN (instead of MTX) for my son. He's now about 4 1/2 weeks on EN (not exclusive) adn doing great. More energy, feels really good.. and has gained a little over a pound..woo hoo!


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## Mehita

Yeah for poo!!!!


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## Devynnsmom

woohoo!! Yay for poo!!


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## Spooky1

A proper poo?  I bet you praised her a great deal, well done the magical princess lol


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## my little penguin

:soledance::soledance::soledance::soledance:
Great news


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## Niks

Amazing news!!!!!!


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## Farmwife

Thanks everyone.


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## upsetmom

Great news!!!
Isn't it funny how we get excited about a normal poo!!!....:ylol:


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## ChampsMom

:banana:  Wahoooo!!!  :banana:

May it continue!!!


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## Farmwife

Does anything ever last with this blasted disease???????????

Update:
Hard as ROCKS BM mixed with blood. The hard BM is completely new for us. The blood I think is because it was hard stool. I'll keep an eye on it.

The good news, very little joint pains. Next to nothing. YA!!!!!!!!!!


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## Niks

I hope her BM's settle down!  Poor little thing    xx


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## ChampsMom

I always thought hard BMs can be a result of dehydration.  I'm sure there are multiple other reasons, but can she add more fluid?  (I know, so hard to get kids to drink more...)  

((HUGS))


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## Jmrogers4

^^^ I was thinking the same thing


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## Farmwife

Well she's on full EEN and that should supply all her water. I mean it always has. 
I did however give her more water through her g-tube today. I'll keep giving her some. 
I have notice she's been peeing a lot. Her urine is the right color.

THANKS


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## Mehita

Are hard stools a side effect of LDN or anything?


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## Jmrogers4

Not one that we experienced fwiw.


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## Farmwife

I'm wondering?
I'll go to the LDN group and ask.

Some thought on this one.........
Grace has been itching her head (no lice) and now I just noticed a dime size red spot at he base of her hairline on her neck. It flush with the skin and doesn't hurt her? 
*Any thoughts*? 
I'll call her GP tomorrow if it's still there or worse.


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## ChampsMom

(Feeling like I'm talking to the choir - given the whole Farm wife part...) but could it be ring worm?


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## Farmwife

Well............she's never had it but it's a possible. I'll look into it. Thanks
How would one treat that?

BTW- Ring worm is not common on my farm.:smile:


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## ChampsMom

There is a prescriptive cream that you apply that would solve it - but it is HIGHLY contagious.  My non-IBDer son got it in the hospital - go figure.  He sat on a bench in a shower and picked it up on his buttocks (both sides!) and was put on isolation in the hospital.  

Laughs... shows what I know, farm does not equal all worms, duh... (It's not worm anyway, sigh... I sink to lowness.. sorry...!)


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## Jmrogers4

Had it several times as a kids if I remember right there is a cream like an anti fungal you put on several times a day


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## xSophiexx

Anti fungal cream. She could have picked it up at school .. very common xx


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## Sascot

Glad the joint pain is settling.  You could take Grace to the pharmacist to look at the red spot - save a trip to the docs!


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## Farmwife

Hubby looked (he's had it before) and said NOPE! He's a man of few words.

So what is it???????????????????????? He told me to get her to the GP!


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## xSophiexx

What kind of spot... Small, big, flat, raised, does it have a head?!

May be nothing but  best be safe xx


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## Farmwife

Flat and mostly round, reddest around the edges and lighter in the center. It sounds strange BUT it feels wet in the center almost like it's going to start leaking. I'm hoping it's ring worm (Crazy the things we hope for). BUT NO RAISED BUMPS AND DOES'T SEEM TO HURT OR ITCH.


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## ChampsMom

Take a picture and post?


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## xSophiexx

If its ring like possible ringworm. I would go pharmacy.. they can generally tell you what it is with - hopefully - minor issues. Good luck xx


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## Farmwife

ChampsMom said:


> Take a picture and post?


No, cameras and farm wives do not mix.:yfaint:

Ya, tomorrow I'll be going in.
My hubby say no to it being ring worm but I still want to know what it is.


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## momoftwinboys

Could it be a tick bite? Tick bites are really ichy The bulls eye that they talk about for Lymes comes to mind?  Hope not, but if it is ..it is very treatable if caught early.


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## Niks

It does sound likecit could. Be ringworm. One of the kids I work with caught it from horses! It is highly infectious though,so could pick it up anywhere. Really easily treated too xx


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## crohnsinct

Check around the rest of her scalp.  Are there any other spots like that.  Could be simple (well not so much) seborheic dermatitis.  Basically just itchy red spots.  My youngest has them allover her scalp. We treat hers with witch hazel.  Works like a charm but only for a very short time.   If they are weeping could be psoriasis or eczema.  Very typical to have that at the hair line around the scalp.  

Good luck.  Keep us posted.


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## my little penguin

Yeah that DS gets atopic dermitis ( since his affects his scalp as well as the rest of him)
His went away for the most part when we stopped remicade .


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## Farmwife

Spot still there and hurts now when I cleaned it.

Off for another unpredictable day.:yfaint:


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## ChampsMom

Good luck at the GP today - XX fingers for an easy remedy!


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## Farmwife

Back for the Urgent care. 
The Doc there says she HOPES it ring worm but....
She said it doesn't look like what she's use to.
The hair isn't falling out
and their's just one.

She's concern because it's a lesion that it might infected. 
She want Grace into her GP next week. 
Told me to call the allergist if it gets bigger or more pop up.

So know I don't know what to think.
I guess we have no choice to wait the out.:ybatty:


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## Tesscorm

Just curious, is Urgent Care the same as going to Emergency?  I know I've taken the kids to Emerg over the years (not for crohns) and get the same sort of answer.  Doesn't make sense to me...  go back to the GP for follow-up so they can then refer me to a specialist who is based in the hospital and will run hospital tests!?!?!?  Can we not just skip step 2?  :yfaint:

In any case, I hope it goes away on its own over the weekend! :ghug:


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## Jmrogers4

Impetigo?  I also had that as a kid (apparently I had sensitive skin)


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## Sascot

How frustrating!  Hope it just goes away on it's own so you don't have to worry what it is.


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## Niks

That is frustrating!! Did they not give her anything to treat it, In case it iris ringworm :S xx


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## Farmwife

Niks said:


> That is frustrating!! Did they not give her anything to treat it, In case it iris ringworm :S xx


Yes:ghug:


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## ChampsMom

@Jacqui - impetigo was my second guess (except I've only seen it on a wee fella in our old day care center & he had it his face around the mouth)...

FW - did she prescribe you a topical ointment?


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## Farmwife

Yes, but she said she want Grace to go to her GP to see if she needs something stronger or to be refereed to a Dermatologist.

Something feels a bit off or is it just me? Is there a skin condition that starts with a man's name like Steven?


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## ChampsMom

Farmwife said:


> Yes, but she said she want Grace to go to her GP to see if she needs something stronger or to be refereed to a Dermatologist.
> 
> Something feels a bit off or is it just me? Is there a skin condition that starts with a man's name like Steven?


IF it is ringworm, the oitment will start working very quickly...  If it isn't ringworm, it won't have any effect on it.  

Stevens-Johnson Syndrome - Did they mention that?!  If not, don't look it up... (Do not borrow trouble.)


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## Farmwife

Oh sure......Don't look it up..............don't borrow trouble!!!!!!!!!

I was always the stupid kid that looked at the sun when told not too.


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## ChampsMom

oh my gosh... I can't stop laughing... *that* is so ME!!  :ylol::


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## Jmrogers4

Yep, me too! (of course I looked it up Champsmom) Reverse psychology works really well on me, just tell me I can't do something.


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## EthanClark

Farmwife-I have also gotten ringworm and other fungal infections. As us with this disease have a compromised immune system it makes sense. I am battling a current infection now but no one else in my family has it and we have no pets. The fungi live on our skin naturally so if your immune system is not up to par you can get an infection. Mine sounds exactly like hers and the medication starts to clear it up in a day or two so I know this is what i have.
Good LUck :ghug:


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## Farmwife

EthanClark said:


> Farmwife-I have also gotten ringworm and other fungal infections. As us with this disease have a compromised immune system it makes sense. I am battling a current infection now but no one else in my family has it and we have no pets. The fungi live on our skin naturally so if your immune system is not up to par you can get an infection. Mine sounds exactly like hers and the medication starts to clear it up in a day or two so I know this is what i have.
> Good LUck :ghug:



THANKS-How's Ethan?

Well now that I looked up the Stevens thing.:ymad:

I sure in sam hill hope it's ring worm.:yfaint:


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## Farmwife

So now Grace has a slight rash on her checks and slightly swollen hand and feet. She just came from outside. I hate this!!!!!!!!!!! Is it allergies, fungus or God knows what else.

Good night y'all!


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## EthanClark

He is doing very good. Just got over bronchitis and we will be switching his g tube to a mic key on June 11th. he is still having some granulation tissue so we are treating again with the steroid cream before we move to silver nitrate. I am hoping they will run blood work again when we go in for the switch as I would like to see if his levels have come back down since going back on EEN. I would assume they have as his fevers, joint pain and tummy aches have went away again and he gained back the 1 1/2 he lost when we pulled his g tube but I want hard evidence. LOL We haven't started foods again yet. Not sure when we will because we are so afraid it will pull him out of remission again. The doctor said 4 weeks but we are waiting longer than that. He seems to do so well without foods that we don't want to rock the boat. I hope Grace does well with the LDN and good luck with the ringworm(hopefully) :ghug:


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## ChampsMom

Farmwife - could this be a reaction to her LDN?  When I researched side effects (I searched Naltrexone, not Low Dose) this is what this link (http://www.drugs.com/sfx/naltrexone-side-effects.html) says for Dermatologic effect:

Dermatologic side effects associated with the extended-release injectable suspension have included pain, tenderness, induration, *swelling*, erythema _(reddening of the skin)_, bruising, pruritus _(itchy)_, abscess, sterile abscess, and necrosis. *The reported cases occurred primarily in female patients.*

**Italics - I added definition; Bold - I added per her symptoms.

It is going to be nothing... (keep saying that over and over...)  Ringworm. 


Hugs and prayers...


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## my little penguin

Hugs 
If anything spreads or you get worried at all call 911 or on call doc.
Allergic reaction can go south very fast especially if its a drug reaction.


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## xmdmom

Champsmom- the link that you posted wrote that the dermatologic side effects that you wrote about were seen in *with the extended-release injectable suspension * so fortunately I don't think this is relevant for Grace.  The site is also talking about side effects for much higher doses used for opioid dependence.

"Dermatologic
Dermatologic side effects reported *during treatment of opioid dependence* have rarely included oily skin, pruritus, acne, athletes foot, cold sores, alopecia, and rash.

Dermatologic side effects *associated with the extended-release injectable suspension *have included pain, tenderness, induration, swelling, erythema, bruising, pruritus, abscess, sterile abscess, and necrosis. Some cases required surgical intervention, including debridement of necrotic tissue. Some cases resulted in significant scarring. The reported cases occurred primarily in female patients."

Farmwife  I hope it turns out to be nothing serious!


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## DustyKat

I hope all settles and it has NOTHING to do with the LDN. :ghug:

Fingers, toes and everything else crossed! :goodluck: 

Dusty. :heart:


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## ChampsMom

xmdmom said:


> Champsmom- the link that you posted wrote that the dermatologic side effects that you wrote about were seen in *with the extended-release injectable suspension * so fortunately I don't think this is relevant for Grace.  The site is also talking about side effects for much higher doses used for opioid dependence.



I remember FW saying LDN earlier on, and you are correct about the link - that's why I said it was not for the LD treatment, but regular.  

In reading about LDN I didn't find much regarding side effects, so I went looking at the regular dose.  It is the same drug but at a lower dose, right?  (We have not used this drug, so I have no first hand experience with it...)  

Anything that presents as a possible allergic reaction catches my attention.


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## xmdmom

Champsmom,
it is true that allergic reactions can occur at any dose of really any medicine and these sometimes manifest with on the skin.  However, the particular side effects listed above  are actually talking about a reaction that occurred at the site of the injection.  There was no way for you to know that but I didn't want Farmwife to worry.


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## Farmwife

Well as mysterious as it came, it has gone.

She's also on a load of asthma meds. I'll watch and see if theirs a connection somewhere.

Thanks everyone.:ghug:


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## Farmwife

Grace is on Singular and guess what??????????????

Dermatologic
Dermatologic side effects have included rash, eczema, urticaria, and dermatitis. Postmarketing experience has included erythema multiform. Postmarketing reports include Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN). Churg-Strauss syndrome has been reported in association with montelukast therapy

*Has anyone had problems with this drug?*


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## my little penguin

Any med basically can cause skin rashes or even worse SJS.
DS had "drug eruption" from remicade per dermo.
Basically allergic skin rashes the so e times take longer to develop .
Singulair is a leucotriene  so it calms the allergic immune system.

The best doc to help figure it out would be your allergist .
Hugs


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## ChampsMom

Hey Farmwife,  

Thinking about you all and praying Grace is having a good day!  (You too!!)

((hugs))


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## Farmwife

Thanks, no reaction to anything today. The spot seems clearer. YA!!!!


BUT.....................
:confused2:Her left wrist for the first time ever, hurt so bad in the middle of the night.
 I had to wrap it up and give meds to help.:confused2:
 I also had to give a suppository to help her poo.
 Her GI told me to vent her g-tube 3 times a day:yfaint: to help her tummy pains now.

Well I knew with LDN it might get worse before it gets better, so..................
I guess the worse has started.:ymad: SHOOT!


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## my little penguin

So sorry to hear.
Hugs


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## momoftwinboys

Sorry Grace is having more issues. She is due some relief. Hang in there. Wish things were easier for you guys


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## Jmrogers4

Hope it passes quickly, sound like about the same timeline with LDN that we had week and half of good then it all went downhill for about 2 weeks before it started looking better again.


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## CarolinAlaska

I'm sorry Grace is having trouble again - and after such encouragement as a formed stool.  Our nutritionist has had us give extra water for Jaedyn while on enteral nutrition.  She doesn't typically have the hard stools either.

Did the rash on her head go away too?  I'm glad.  I don't care what it was as long as it disappears!

Thanks for all the updates!


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## upsetmom

:ghug:...I hope she starts improving soon.


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## Mehita

These kiddos go through so much! I hope she finds some relief soon.


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## Sascot

Hope she turns the corner soon into feeling better!


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## Farmwife

Update:

Grace is doing good. No real pain to speak of. She's happy and full of you know what.

However, the LDN (I believe) is now causing constipation. Tonight will be number 8 of having to use suppositories.:confused2: Also she is now back to pee-pee accidents. 

*So here is a question ..........................................
When do you change doctors??*
I know, I know, I fought to get into this GP but now I'm worried that Grace has "to many moving parts" going on. I feel like the last couple appointment that the GP is getting overwhelmed and can only focus on one thing. But:yfaint: she's very nice and does what I ask, like giving LDN a try. I'm so confused.:yrolleyes:


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## Farmwife

Oh, the sore on her neck.....it's gone. It was the only one.


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## Tesscorm

Do you have a better option than the GP you're with?  It's a bit sad (and scares me and makes me mad) to admit this but I feel that I have to be the 'overall' GP for Stephen.  I like his GP (fairly new with him as well) but, when I was asking some questions at one apptmt, he straight out told me that he isn't a specialist in GI and that he simply didn't know the answers.  I wish I had a 'specialist' GP :lol: for Stephen but I don't think they exist!  Actually, I think they're called 'moms' (or 'dads' )! :facepalm:

I just went through an incredibly stupid runaround just to get info on Stephen going to Dominican Republic:

-emailed GI to ask if any special concerns, he said talk to 'travel doc' but let him know of any vaccine recommendations before proceeding
-as I didn't know any 'travel docs', asked my mom to ask her ID specialist if I could just call/email her with a couple of questions - mom couldn't reach her so went back to simply finding a travel doc
-meet travel doc, he's 'crazy' :lol:  literally called me names, got very upset because I wouldn't go along with his recommendation without speaking to GI  (when I checked his recommendations myself, he'd recommended at least one vaccine Stephen didn't even need!)
-sent GI the recommendations...  waiting, waiting for his response
-meantime, mom's doc won't do phone/email consult but will squeeze Stephen in (didn't think I really needed apptmt now but she is a true BIGWIG in ID specialty, was doing the favour of booking us in, didn't think I could say no...).
-drag (almost literally) Stephen to this apptmt...  she is a Godsend SERIOUSLY, gave me tons of info
-another email to GI with NEW recommendations (because neurotic mom here wasn't happy with first ones! :yfaint
-GI finally gets back to me, agrees that first travel doc was wrong in almost all recommendations and agrees with what second one said...

Whew...  but all this because I was 'coordinating' everything...  getting the necessary info, double-checking recommendations, etc.  But, makes me mad and scared because I'm NOT a doctor!!!  I shouldn't have to check all this stuff and what if I don't double- check something or ask the right question next time???

So, sorry for the rant :redface: but, in answer to your question...  if you can't get a 'better' doctor, I would stick with one who's willing to see you quickly, responds to phone calls/questions and, in time, will build a history with Grace and will learn more about Grace's issues as time goes on...


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## upsetmom

Most GPs don't know too much about IBD.
Any problems we have l ring the GI even if l don't think it's IBD related. And they are usually very good if they can't help us they refer us to someone who can.


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## Farmwife

:ylol:Tess your amazing! Not just because of your typing skills but because you haven't gone postal on any docs yet!

Ya, well she's not easy to get into and it takes a couple of days to get a call back but..................I GET WHAT I WANT! So for now I guess I'll stay. Not because I'm smart but because Tesscorm is.:lol2:


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## Niks

Fab news to hear that she's doing much better!!!  :dance:

I think you're right.  Stick with the Devil you know!  You probably know more about Grace's condition than any Doctor!  If she's willing to listen and try  your suggestions, then surely that is pure Gold in Doctor terms  xx


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## Farmwife

:mario2:She went poo on her own. Then I said , no meds in bum tonight. :emot-dance:She than shouted, Praise the Lord God! I love this kid.


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## LJS

I'm so glad Grace is doing better.. does she only see a GP and not a ped GI? I LOVE my pediatrician and she is amazing, but no way would she be "qualified" to handle the GI stuff.. I didn't realize you don't see a pedi GI..just curious as to why.. might be how it's done where you live, etc.. Not judging, just curious..

But biggest thing is that your baby is doing better.. I am so happy for you both!


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## Farmwife

LJS
Where we live????:ymad: For crying out loud, :ymad:how bad do you think Michigan is???? :ymad:
Just kidding!:ylol:

Yes she sees a pead GI. Along with other specialist. However it is her GP that wrote the LDN.


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## my little penguin

FW
Specialists are the ones trained to handle their area
The GP/ped is able to handle the normal childhood stuff ( colds, flu, ear infections etc...) NOT IBD or arthritis or eye "stuff"
YOur individual specialist should be the captain of the ship on each areas.
I understand your GP prescribed the LDN (not sure why your GI didn't if the doc is ok with it)
but the GI should be calling the shots on how to care for her GI tract.

GP just dont have enough training in that area to fully understand everything that goes into IBD.

That said you shouldnt expect your GP to be able to handle all the specialty areas that is Grace. Only the normal kid stuff.


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## Farmwife

I guess I should have been clearer MLP.
* I was not implying that her GP should also act as a specialist but
 rather she seems flustered with what all the specialist have to say and are doing.*
 My hubby said that would happen to anyone that only sees me for 20 minutes.:yrolleyes:
 Ya, I guess he's right. :ymad:
I'm just nervous ( worried is more like it or just plan crazy) that she's feeling overwhelmed.
:yfaint: But again the sound of reason (hubby) said she's the kind of doc that will call and ask more questions if she has to.


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## crohnsinct

^^Yeah dat MLP!  


O's GI is like our general contractor.  All goings on get reported to him and he decides if we need to see anyone and who that anyone shall be.  He wants reports from all docs.  Of course if it is a simple ear infection/strep throat issue we go to regular ped but they have it down to notify GI of the visit and detail the meds she is perscribed.  

So much of what can go wrong in a body tracks back to the GI system.  O had a miscellaneous eye infection and then a week later complained of hip pain and a stiff back...the two don't sound related at all, right...well they could be...ankylosing spondylitis.  GI heard all this and ordered the appropriate tests.  No way to expect a regular GP to perk up at those two complaints.  

I know your GI is far but a partnership with him is critical.  Especially given the two issues you are juggling. 

BTW - tests were 9 days ago and no news so assuming she is all clear on the AS front.  Just overworks her body.


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## Farmwife

Well crohnsinct, thank God she didn't have AS.

Also refer to post 108.

HUGS


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## Johnnysmom

I agree with MLP about the GP and the GI.  Our GP was gold only because she took all of our concerns seriously, did research, gave us quick referrals when we needed them (dermatologist, rheumatologist, etc) and checked with our GI before she did things like prescribe antibiotics for ear infections.  A GP really doesn't know anything about treating GI issues compared to a Ped GI.


----------



## dannysmom

I agree with others in reference to your GP. I see that our GPs (practice of 3) also have hard time keeping up with everything going on with Danny ... it is just too much information. I do provide my own summaries from time to time - especially after reading some specialists letters that get things mixed up!


----------



## Jmrogers4

Love Jack's GP and even though he has IBD himself he still refers to the GI for treatment/guidance on anything other than standard colds, well child visits etc.  Lucky for us the GP just moved into the same building as the GI and are now on the floor directly above the GI


----------



## Mehita

I agree with Niks. Stick with the devil you know. I sensed that our GP was getting a little overwhelmed at one point too. At an appt I just flat out said, "We have a lot going on here, do you think you can keep up?" Thank goodness he said yes. I still do all the coordinating between docs and clinics, but when I need back up (or Emla creme, no questions asked) he's my guy.

He knows a little bit about a lot of different things, while I know a lot about the few things particular to my kids. Our relationship is the complete opposite with our GI. Somehow it all works.

Do you really want to start over with a new doc? That's a lot of work.


----------



## CarolinAlaska

FW, I don't think it would hurt to ask around to your friends if they have a pediatrician that they love who is knowledgeable.  I work with a pediatrician and have worked for years with general practitioners.  Our pediatrician is solid gold in what she knows and is willing to do and I wouldn't trade her for the world for any GP.  She had a background in being a hospitalist pediatrician and I think that made her much more comfortable with chronic illnesses.  I don't think there is anything wrong with looking around and seeing who is out there.


----------



## Farmwife

Grace has a rash across her neck now. It's small blisters and don't seem to itch much. None of them have opened up yet. Any thought? 

Today Grace asked me to put a suppository in. That's a new one. I said why and she said please put it in. WOW!:confused2:

Also more pee-pee accidents. Plus tonight will be the second night of pain meds for her knees.:yfaint:


----------



## my little penguin

How often do you update your Gi ?
We call at least once a week 
Sometimes more if things are bad
Rashes and joint pain plus constipation  go with an Ibd flare for DS 
Hope things calm down soon


----------



## Farmwife

*IF* I go more than a week or two they assume she's fine or we're dead.:smile:

If the rash gets worse I'll call her Allergist. 

I guess for us, what equals a flare is............

Constipation+Joint pains+Tiredness=Flare

She's not to tired yet.


----------



## ChampsMom

I'm with Caroline on asking around... Asking doesn't mean changing, but opening up your options.  

We are extremely blessed with our GP and GI doctors.  It was our GP that said it was Crohn's and sent up to the ER at Children's.  When they sent us home, he picked up the phone and said I'm sending them back - look again.  It's a large practice (probably 6 or 7 doctors), we've been with them for 16 years - truly amazing group (really get to know the families!) I know there has to be others out there like them.

Our GPs work hand and hand with our GIs - after every appointment we have with our GI she sends a detailed letter (never less than 3 pages) with labs, next steps, etc...

 Sorry she's not feeling well again...  

HUGS...


----------



## happy

Could the rash be shingles? Does it hurt? Shingles is usually on one side.


----------



## 723crossroads

I have blister like things on my feet and have for over a year. Don't know what they are, but never had them before they said I had crohns.


----------



## Farmwife

No happy it doesn't hurt or even itch....right now.

Teresa ( 723crossroads ) I've been meaning to tell you, I love your avatar.


----------



## dannysmom

I'd mention the new rash to her GP ... especially with her allergy history. Sorry the "something new" seems to never end!


----------



## happy

Glad the rash doesn't hurt--so that rules out shingles--she doesn't need that complication--ow!


----------



## my little penguin

Fwiw you can't get shingles unless you have had chicken pox first .
The chicken pox lays dormant in your system until for some people it comes out as shingles much later .


----------



## Sascot

Sorry to hear that!  I would have said molluscum maybe for the rash, but I'm not sure how quickly it can spread.  Really wishing things would improve!


----------



## upsetmom

my little penguin said:


> Fwiw you can't get shingles unless you have had chicken pox first .
> The chicken pox lays dormant in your system until for some people it comes out as shingles much later .


 MLP l learn something new from you everyday.:ysmile:


----------



## Catherine

Lack of pain doesn't rule out shringles either.  Sarah had no pain with her shringles until she had the rash for 10-14 days.


----------



## ChampsMom

How is she doing today?  Rash still there?  I was thinking chicken pox virus yesterday, but couldn't come up with the word shingles (thanks happy!)...


----------



## Farmwife

Thanks Shell,

Her rash is still there and now Turing dry and itchy. Calling a Derm tomorrow. 

She vomited twice in the morning and for the second time ask for a suppository. Their was a hard BLACK piece of stool and then soft behind it. Great, now what's going on.:yfaint:

Also more pee-pee accidents. Going to call GP and see if we can get Grace in for an ultra-sound on the bladder.

Other than that...............she still smiles.:ghug:


----------



## Niks

Bless her.  Hope the rash clears up soon and she doesn't continue vomiting.  

Chicken Pox is pretty obvious.  I think you'd know if it was.

Good luck with calling GP xx


----------



## ChampsMom

Aww... FW, so sorry to hear... What a trooper she is - she is a princess!!  To keep smiling through it all... My thoughts and prayers are with you both... :ghug:


----------



## my little penguin

Hugs
Let us know what the Gi says


----------



## momoftwinboys

Farmwife, you and Grace are amazing.  You guys are dealing with so much adversity at the moment and you still manage to smile.  Wishing you lots of reasons to smile soon.  You guys deserve a break.


----------



## jmckinley

I hope the rash turns out to be nothing! Sorry you and your princess are still having new things popping up. Time for a break for you!


----------



## CarolinAlaska

Farmwife said:


> Thanks Shell,
> 
> Her rash is still there and now Turing dry and itchy. Calling a Derm tomorrow.
> 
> She vomited twice in the morning and for the second time ask for a suppository. Their was a hard BLACK piece of stool and then soft behind it. Great, now what's going on.:yfaint:
> 
> Also more pee-pee accidents. Going to call GP and see if we can get Grace in for an ultra-sound on the bladder.
> 
> Other than that...............she still smiles.:ghug:


Is the rash both sides or does it stop at the midline?  Shingles is only one-sided.  The pee accidents could be from the constipation - the stool pushes on the bladder and makes it hard for little ones to hold it.  Meds can also have the side effect of not allowing someone to urinate completely (urinary retention) so they have to pee sooner than expected.  One of my daughters had that at your daughter's age when she was on a seizure med...  We backed off the dose and she stopped wetting the bed and having accidents again.  I'm not sure an ultrasound of bladder would tell you much except perhaps whether she is voiding completely.

Hope that helps.


----------



## 723crossroads

Sure hope you get some answers soon!:ghug:


----------



## Farmwife

GI said put her back on Miralax (which doesn't work:ymad and start senna every three days.
We have an apt. in a few weeks will see how she's doing until then.

She has her first Derm apt. in a few weeks also. We made apt. with a Derm down at the children's hospital. At least they've seen kids like Grace before.

Her GP gave a script for a bedside cameoed (sp?) (child size). :confused2:

We're going to wait out the bladder issue and I do believe it have to do with this flare.


----------



## Farmwife

Tomorrow is a full 3 weeks for LDN.
Were still hitting a few little bumps on the road 
BUT nothing out of control as of yet.

I'm concerned that her tummy and drainage is becoming an issue.
6-8 hrs later I can pull (through g-tube) out food or vitamins. 
Than the next she's draining normal. I don't get it. 
The painful hiccups are back. :confused2:Acid reflux is causing havoc also.
I don't believe LDN has anything to do with this.

So hopefully her mini-flare will be under control soon.


:ghug:


----------



## DustyKat

Are you doing bolus feeds FW? 

Dusty. xxx


----------



## my little penguin

"Food"????
I thought she was still EEN
Until things got under control ???


----------



## Sascot

Hope this flare goes away soon.  Can't remember - does she take an antacid for the acid reflux?


----------



## Farmwife

MLP -she can have boiled chicken & over cooked rice. She also can have smarties and cotton candy. Keep in mind that she has stopped eating most of that. She can only have about a 150 cals from food. 

DustyKat-Yes were doing bolus feeds IF she can't drink it by mouth, she's been doing all by mouth the last couple weeks.


Sascot- she's on a PPI.


Update- This is her third stool that is hard at the beginning. Why did it go from soft for YEARS to now hard? Had to use a suppository again.:confused2:


----------



## Tesscorm

I know really nothing about the food allergies, etc. but, when Stephen was on EEN and he was allowed freezies, popsicles, candies, etc....  one thing they stressed he could NOT have were chocolate popsicles or candies.  I don't know what it was about chocolate specifically but perhaps you could try to replace the smarties with another type of treat/candy (ie Stephen was allowed lifesavers, gummy candies, etc.).  I wouldn't think just one or two smarties would cause a problem but maybe...??

Hope all settles soon!


----------



## ChampsMom

Is there any possibility she is dehydrated?  I can't help but think with some of the skin issues she has been having that dehydration might be playing a role?  

((((HUGS))))


----------



## Farmwife

Tess I don't think it's the candy. I've removed those for a long period and nothing changed. Smarties are so FAKE theirs no real allergen. 

Shell- I know add water through the g-tube each time. Also she can drink ice water and often does plus her Splash has a lot.


----------



## my little penguin

FW smarties in Canada are like m&ms here so candy covered choc.
They are made in tree nut /peanut free facilities .

Tess smarties in the US are pure sugar compacted to gether with dye and artificial flavor 
Apparently called rockets in Canada 

http://www.torontomike.com/2011/03/american_smarties_vs_canadian.html


----------



## Johnnysmom

MLP does your scope of knowledge know no bounds???

I'm impressed!


----------



## my little penguin

we had to buy canada smarties from a US "nut free shop" for Ds due to allergies-
otherwise I would not have known there was a difference


----------



## Farmwife

Has any of you or you kiddo's have had a red dry rash around (but not in) you belly button? 
It's spreading but not a bother to her yet.

Oh, I love allergy season but the rash "things" are new to me.


----------



## Jmrogers4

Like eczema? Hope it clears up soon


----------



## my little penguin

I forget has she seen dermo and what daily antihistamine is she on?
Cerave creme is the best over the counter creme comes in a tub
Very good for allergic kiddos
May want to try wet wrapping as well.
Hope the dermo has some advice


----------



## DustyKat

Our Smarties are your Smarties Tess.  

Thanks mlp, they say you learn something new everyday and today you have taught me two new things! 

Dusty. :study:


----------



## Sascot

I tend to deal with most rashes with an antihistamine cream.  If that doesn't work, then I go to the docs.


----------



## my little penguin

Please be careful with antihistamine creme 
It can not be used if the child is on a daily antihistamine there are warnings on the box.


----------



## Farmwife

She is on an zertek (sp?). 
I'm using good old glycerin on the spot. That's the only thing that works for us.
It's still there this morning but hasn't spread.
 I'm just so frustrated...if it's not one thing for Grace, it's another. 
We NEVER had all these allergy type problems before.

On the GI side of things and joint pains, she seems better. Maybe the LDN is kicking in.
Hey I'll take while I get it.


----------



## my little penguin

FW allergies tend to show up more around age 3-4.
It is called the allergic march
Grace is atopic on all fronts so be prepared for more not less.
I would let her allergist know about the rashes as well as Rheumo/Gi
Since they can be from non allergic things as well.
Also keep in mind with an atopic kid
What creme sunscreen worked before may not work again.
Since the immune system is ramping up between ages 4-6.


----------



## Farmwife

For crying out load.................... a yeast infection now!

:ymad:Are you kidding me! What in Sam Hill is going on with my girl???????????????:ymad:

Is this because of LDN????????? 

I'll be off to the walk-in tomorrow with Grace if this don't improve dramatically.

Have a good week-end y'all.:ghug:


----------



## Farmwife

Weird!!!!!!!!!!!!! When asked about her leg yesterday she said it felt weird.
I notice sometimes when she has had leg problems (weakness, not baring weight on it), I'll ask does it hurt and she'll say no. Yesterday was a BAD day for her leg. I asked again and she came up with the word WEIRD. She said it felt weird. I think she means numb but being 4 she doesn't understand that word.

So what causes a leg to have pain in the joints one day and then a "weird" feeling the next?
I did call the Rheumy and they said we can wait till October.:yfaint:

I'm getting concerned that LDN is causing to much of a flare.
 Will she be able to pull out of it? 
 I'm already coming up with another plan in my head. :yrolleyes:
The problem is, my head has no plans. :lol2:HUSH y'all.:ymad:

Still not pooing, unless helped.

:confused2:Sorry I'm just a worry wart today.:confused2:


----------



## Jmrogers4

Poor little princess.  You know I'm currently a big fan of LDN but she may need something more for now to get her all healed up and feeling good.  You could always try LDN again later.  Jack was in a good spot when we started and was symptom free for the most part or as I like to say was about at 90% when we started.  Now I'd say we are at 99% (if I could just get him to eat I'd say 100%).
It is not that there are no plans in your head it is just so full that you are having a heard time grasping that one plan 
Hope her leg quits feeling "weird" and she is up and running around again.


----------



## Spooky1

Hi,
Just wanted to say that I sometimes have a leaky belly button, itches like mad too and gets very sore.  My ears often were the same way.  I used to have steroid drops for the ears and vasaline for the belly button.  But I think sea salt water, not in the sea, but supermarket stuff, was good.  haven't had it in a little while, but oh the peg area!


----------



## Tesscorm

FW, that 'weird' feeling...  keep in mind it could be RLS (restless leg syndrome)...  but maybe we have talked about this before???  Is she low in iron? - when I was low in iron and HGB, I had really annoying RLS!! :ymad:  I've periodically had RLS for years (guess it's an indicator of my iron levels ) and in my experience, it can happen with only one leg (usually how I feel it) but NEVER happens when in movement...  so is her leg feeling weird when she's sitting, laying down, resting, etc.  When it's been at it's worst for me, the 'motionless' time doesn't have to be a long time, it's happened even just on a quick drive somewhere.


----------



## my little penguin

Not sure why you only see Rheumo what every 6 months and the same for Gi???
Typically until things are under control
Visits to both every 6 weeks to two months
Once under control every three months.
That is way too long between visits.

Try to get her to describe "weird " to you
What it looks like to her
Have her draw a picture 
Don't describe it for her
Trust me btdt
DS kept saying his stomach was "nervous" in first grade or kindy prior to dx.
He just didn't know the word nauseous yet


----------



## Niks

Could it be numbness low B12 levels?  Jaime had this, but she had numbness and pins and needles from head to foot, but started in her legs...  Just a thought?  

Hope her infection clears up soon, and hope you find out what she means by funny xxx   :ghug:


----------



## jmckinley

Could that rash be the yeast also? Candida can cause a rash.

I hope she is feeling better soon. Ready for Princess to catch a break!


----------



## 723crossroads

Farmwife said:


> Tomorrow is a full 3 weeks for LDN.
> Were still hitting a few little bumps on the road
> BUT nothing out of control as of yet.
> 
> I'm concerned that her tummy and drainage is becoming an issue.
> 6-8 hrs later I can pull (through g-tube) out food or vitamins.
> Than the next she's draining normal. I don't get it.
> The painful hiccups are back. :confused2:Acid reflux is causing havoc also.
> I don't believe LDN has anything to do with this.
> 
> So hopefully her mini-flare will be under control soon
> 
> 
> Can she eat at all? Sugar cures hiccups or a small spoon of pnut butter. Or also salt in yogurt works too. Keep in mind for when she can eat.


----------



## Farmwife

Jmrogers4 said:


> Poor little princess.  You know I'm currently a big fan of LDN but she may need something more for now to get her all healed up and feeling good. * You could always try LDN again later.*  Jack was in a good spot when we started and was symptom free for the most part or as I like to say was about at 90% when we started.  Now I'd say we are at 99% (if I could just get him to eat I'd say 100%).
> It is not that there are no plans in your head it is just so full that you are having a heard time grasping that one plan
> Hope her leg quits feeling "weird" and she is up and running around again.




Ya, I know! I was just kinda, sorta, prayin that this would work.:yfaint:

The LDN is doing a good job with her joint pains. I mean it's worth it for just that.


----------



## Farmwife

Spooky1 said:


> Hi,
> Just wanted to say that I sometimes have a leaky belly button, itches like mad too and gets very sore.  My ears often were the same way.  I used to have steroid drops for the ears and vasaline for the belly button.  But I think sea salt water, not in the sea, but supermarket stuff, was good.  haven't had it in a little while, but oh the peg area!



Thanks for the info.
Grace has eczema (I think but pretty sure it is). I've been treating it and it looks better. It's spreading to her Mini button now. I've already tried to smack her hand away a couple times.


----------



## Farmwife

Tesscorm said:


> FW, that 'weird' feeling...  keep in mind it could be RLS (*restless leg syndrome*)...  but maybe we have talked about this before???  Is she low in iron? - when I was low in iron and HGB, I had really annoying RLS!! :ymad:  I've periodically had RLS for years (guess it's an indicator of my iron levels ) and in my experience, it can happen with only one leg (usually how I feel it) but NEVER happens when in movement...  so is her leg feeling weird when she's sitting, laying down, resting, etc.  When it's been at it's worst for me, the 'motionless' time doesn't have to be a long time, it's happened even just on a quick drive somewhere.


It could be. I believe she's had RLS before. 
However it makes the leg weak and she can't walk on it to much. Does RLS do the same?


----------



## Farmwife

my little penguin said:


> Not sure why you only see Rheumo what every 6 months and the same for Gi???
> Typically until things are under control
> Visits to both every 6 weeks to two months
> Once under control every three months.
> That is way too long between visits.
> 
> Try to get her to describe "weird " to you
> What it looks like to her
> Have her draw a picture
> Don't describe it for her
> Trust me btdt
> DS kept saying his stomach was "nervous" in first grade or kindy prior to dx.
> He just didn't know the word nauseous yet


We see the GI every three months.

Good ideas about having her draw a pic.
I'm careful not to put words in her mouth. 
I think "weird" means numb but I'm not sure.

Her Rheumy said since she has more good days than bad she can wait until October. However, they said they can get us in sooner.
YES,  I've already called and they said she can still wait.:yfaint:


----------



## Farmwife

723crossroads said:


> Farmwife said:
> 
> 
> 
> Tomorrow is a full 3 weeks for LDN.
> Were still hitting a few little bumps on the road
> BUT nothing out of control as of yet.
> 
> I'm concerned that her tummy and drainage is becoming an issue.
> 6-8 hrs later I can pull (through g-tube) out food or vitamins.
> Than the next she's draining normal. I don't get it.
> The painful hiccups are back. :confused2:Acid reflux is causing havoc also.
> I don't believe LDN has anything to do with this.
> 
> So hopefully her mini-flare will be under control soon
> 
> 
> Can she eat at all? *Sugar cures hiccups or a small spoon of pnut butter. *Or also salt in yogurt works too. Keep in mind for when she can eat.
> 
> 
> 
> Great!!!!!!!! Grace is going to want hiccups all the time.:lol2:
> 
> 
> 
> *Also how in the world do y'all do multiple quotes on one post*.:ymad:
Click to expand...


----------



## Tesscorm

RLS never caused any numbing for me.  Actually, most (all) of the RLS sensation would go away once I started walking or moving my leg for a bit...


----------



## Spooky1

Lol, FW, really, my hand can't help but go to itchy areas, every species find this a natural reflex action.  Poor girl.  Hope it gets better soon.  Does she have any oral zinc?  that's brilliant for the skin but from inside as topically its not so good.


----------



## Farmwife

:soledance::rosette1::dusty::thumleft::mario2: :us_flag:

Just an update:

*Hooray for LDN!!!! *

Grace's most recent labs look GREAT (well except the blood sugar)!

The GP is happy with the progress and we're hoping that the little bumps were still hitting will resolve with a little more time.

Her muscle pain has almost *vanished *and her appetite is back.
Which is great when you can't feed her much food.:yfaint:

Her LDH total for the first time in a long time is finally back to normal. :smile:
That was the only real numbers we had to go on for her disease during flares.

I'm as happy as a lark!
 Hopefully the GI will feel the same.:ghug:


We have a GI meeting on Friday.
I'm making my list of question already!:eek2:


----------



## Jmrogers4

:dusty::dusty::dusty::dusty::dusty:
Fabulous news! Hope it keeps on improving, she deserves a break and just to enjoy being a princess :queen:


----------



## Sascot

Yay, great news! Hope the "little bumps" get fewer and fewer.


----------



## Tesscorm

:dusty: :banana: That's GREAT news!!!!!   So glad to hear!! :banana: :dusty:


----------



## upsetmom

:dusty::dusty::dusty:..Great news!!!


----------



## ChampsMom

Yeah!!!! :dusty:!!!


----------



## Catherine

Glad to hear Grace is doing better.


----------



## Mehita

Woohoo, great news!


----------



## Niks

:dusty::dusty::dusty::dusty::dusty:  Woohoooo!!!

Loving the dusty emoticon!!!!  xx


----------



## Clash

Great news! Woohoo for Little Farm girl!


----------



## Farmwife

Thanks everyone.:ghug:

I just hope this means that LDN is working.
 Also when talking to the GI it will give us some wriggle room. I think???
 :sign0085:Who knows what he will say tomorrow. 
I hate when you think it's going to go one way and you walk out totally shocked because you didn't see it come. KWIM

My Grandpa gave me a "thingy" (new word) to keep track of Grace's blood sugar.
I'll test her twice a day for 4 days. At least we should know if it was a fluke.

So off to the city tomorrow. I have to say that I'm getting use to the driving and location. 
I still wish the hospital was in the middle of a field.:smile:


----------



## my little penguin

FW talk to your gp
There are better test to see over the past three months if she has been having issues with blood sugar.
Depending on when and how you test with thingy 
You could get very wonky not useful at all numbers
Discuss your concerns with your gp
Good luck with the Gi in am


----------



## Catherine

We have the "thingy" at home.  Does your machine record the time and date when the test is done?


----------



## Farmwife

Yes Catherine. My Grandpa is a diabetic. He told me how and when are the best times to do it. I guess I'll take his 30+ years of expertise.:smile:

MLP I'll ask IF number seem off! Thanks for the advice as always:ghug:

Have a good night y'all.


----------



## Catherine

My husband has it for the same reason.

I was asking about machine itself, as our things records 3 months of readings.  So if you got a funny reading your would have it recorded on the machine.

I am sure you got instructions on it use.


----------



## DustyKat

Wow! It is so brilliant to read that Grace is doing fab! :dusty::dusty::dusty: 

Sooooooooooooooooooooo happy for you FW! 

I was just reading your other thread re BSL's. Doing the conversion it surely is on the lower side and naturally you need to look at the NRR of your lab but for a couple of the labs I have used here that figure is the low end of normal or maybe only a snig under it. I hope it is only a one off hun and not something new for you to worry about. :ghug: 

Good luck! 

Dusty. xxx


----------



## Tesscorm

Good luck at apptmt tomorrow!  Hope the only surprises are good ones!


----------



## Farmwife

We have to decided to part ways with Grace's GI.
We parted on good terms and smiles.

I have nothing bad to say about the GI and the hospital. 

So Monday we're back at square one. Well.......at least we have a dx's. 

Gosh, now that it's been made final, I feel sick.:yfaint:

Hugs to all this week-end.:ghug:


The good news is Grace went to her first Zoo. She loved it and the monkeys even came up to the window to greet her. SO CUTE! No pics forgot camera.:confused2: 
Oh, she grew an 1 1/2 in 6 months. YA!!! :smile:


----------



## crohnsinct

You mean you didn't use the vice?

Well can't say I didn't see this coming but what was the straw that broke the camels back?  Do you have a back up plan?  How long will it take you to get in to the other GI?  Grace is a complicated case and needs to have a GI driving the bus. 

I know I am not telling you anything you don't already know.  I know you have another city doc somewhere (Cincy please) up your sleeves. 

Good luck!


----------



## Farmwife

1-Cincinnati Childrens
2- Mayo Clinic
and her GP has an "in" at John Hopkins 

Cincy would be the best and most practical. 
I have no idea how long. The Social worker from Devos will do all the switching over.

I have all week-end to obsess on it.


----------



## crohnsinct

UGH!  Is this the same social worker who was working on it last time?  Did they give you any idea of how long it would take?  Just your patient city friend wondering....


----------



## Farmwife

Yes the same one. She was a help last time. I pray she will be again. 
Grace's GP already said she'll make sure things get done too

Now that Grace has dx's, I hope she'll get in faster.

At least Grace is stable and happy. So waiting a bit to make sure LDN is working won't bother me.


----------



## QueenGothel

Just lurking and glad all is going much better. I can't believe you will be venturing our of the state.  Good for you and your big girl britches.  Before you know it you will be a city slicker... Not gonna happen.  lol. Hoping this trend keeps going in this direction still have to catch up on your other threads.  You take care my FW friend.  Doing a fabulous job per usual!


----------



## Spooky1

Whoopeee for Gracie.  Good luck with specialist.


----------



## Johnnysmom

If you can get your appointment at the Liberty campus of Cincinnati Children's (if you decide to go there) you won't have to venture into the big city.  It is also closer to Michigan so it would save you about 40 minutes of driving.  We had our first appointment downtown and it is a pain, huge compared to Helen DeVos and not as easy to navigate.  Johnny now has all his appointments at the Liberty campus.  

Good luck FW, I hope you find some solid answers and relief for your girl!


----------



## Farmwife

Thanks Johnnysmom,
I'll ask about that campus. I don't know where the EGID's clinic is at. I hope it's at that one. Grand Rapids was crazy to us. I can't imaged it where you are.

QueenGothel,
I looked at Mott's but I coundn't find any info about it. I NEED a GI that has treated these. 

Of course the insurance will be a HUGE factor for us. I just hope we can make it work.


----------



## my little penguin

http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/

Wait list for those with egid a dx may be still over a year.
It was 3-4 months two years ago.
Chop /cchmc all tend to have a 3-4 month wait list for general Gi stuff

How will you handle things if she goes down hill prior to getting in to see a new Gi ( 3 months is minimum wait time just to be seen)?
Your gp really isn't equipped to handle it.
Is your current Gi handling things until she gets officially in with another Gi
Or did you completely part ways?

One thing you need to put into place.
If she gets sick at 8 am  most Gi s require a plan in place where they can physically "lay hands" on her before the end of the day.
At the very least - a children's hospital locally that they can phone in directives .

Do you still have those options open ?
Not saying not to go . 
We have more than a few times 
But logistically you need to be prepared because the docs will ask how do you plan to handle those situations.
Since we all know Ibd can go from 0 to 60 in less than 24 hours.
We also know hospital care is a given .


----------



## Farmwife

Care until then will be handled by her GI at Devos, until she's transferred.
We are very blessed to have a huge and highly rated hospital with in miles from us.
However their not a children's hospital. They do work with children's hospitals though.
We are keeping Grace's Rheumy and Dermatologist at Devos. So we still will be going there.
Monday and Tuesday (maybe longer) will tell us about her transfer.

I'm still going to phone Mott's  where Rowan goes and see if they have treated EGID's and what is their protocol for it. That will tell me a lot.

The special state insurance will be the big thing. They say IF a hospital in Michigan can treat it you HAVE to go there. Devos does say they treat EOE. Grace however has EGE. No hospital says they treat that in Michigan. I'm hoping that's my way around the rule.

Sadly my son is showing more and more signs everyday. I think Cincy would be the best to take both of them.


----------



## Mehita

What sorts of symptoms is your son showing?


----------



## polly13

I'm off line for a few weeks and as always fw you are still on a roller coaster.  So glad to see grace is doing better, please god it will continue.  You sound happy with your decision re a new GI so hope that goes well for you and Grace.  Am worried to hear your son has some symptoms , I will say a prayer that it turns out to be nothing serious. Hugs to u and grace.


----------



## Sascot

Hope the insurance doesn't give you any trouble.  Hope the transfer goes well too!


----------



## DustyKat

Thinking about you FW and your little princess. I hope more than anything the transfer is smooth and uneventful. :ghug: 

I am so sorry, I didn't realise your little guy was having issues too!  

Sending you loads of love and well wishes your way. :Karl: 

Dusty. xxx


----------



## kimmidwife

Farmwife,
I totally missed this whole thread somehow. (I don't know with homeschooling and being ill myself and having a million things going on I somehow missed it) I caught up with most of it. I am glad you guys are going to cincy. I hope that will be a good move for you guys. Caitlyn has had some constiptaion issues with the LDN. I wonder if their body is just so used to diarrhea that it does not know how to cope with hard stools. I try to make sure she keeps up her liquids to try to help. Though I guess since Grace has the tube the helps with that a lot. Sending you guys hugs. What is happening with your son?


----------



## upsetmom

Sorry to hear about your son.


----------



## Niks

So much going on FW your head must be spinning.  I hope everything gets sorted quickly for Grace.

Sorry to hear your little lad is not doing so well.  Has he been referred to GI?

Everything crossed for both of them (((hugs)))  :ghug:  xx


----------



## Farmwife

:ybatty:Oh sorry everyone. I confused forums.:yfaint:

My boy is showing signs of EoE. He lost 10 lbs in 3 wks. He put it back on but I have to supplement with boost now.
He's on swallowed steroids now to see if it helps his throat. Stomach pains now are coming and going BUT nothing that needs meds to help it yet.
So if you don't mind I'll still take a dip in the river of De-Nile a bit longer.
Yes he is seeing a new GP.:ghug:


All is well here.
Grace's GI said I could cut back her PPI in half for a week and then stop it.
I'd like to try it and see what happen.

Have a good Sunday!


----------



## QueenGothel

I do know a mom (one of my parents of J-poucher friends on FB) that was going to Devos and was having a lot of issues after the j-pouch surgery was transferred to Motts for their second opinion and that is where they found his EGID.  I will message her and see if she got a referral from Motts and who it was and where she is going from there.  I remember the GI whom diagnosed him was Dr. Pamela Brown.  But idk if this is her area or if there is someone else at Motts.  I will get back with you once she responds.


----------



## Farmwife

Thanks you Mary.


----------



## my little penguin

I have had two kids on reflux meds for years 

I thought you had posted her reflux was so bad last week you took her to the ER.
I am not understanding dropping the PPI if her reflux was bad??
ALso you normally wean from a ppi slowly to a lower level drug then drop but only if the symptoms have been non existent not the other way around.

ALso who put your son on swallowed steroids?
And was he scoped first? Normally you do not treat EoE unless you have had a positive scope. You cant dx EoE or any EGID without a scope.
Was he dx with EoE?


----------



## Farmwife

Ok, the GI thought the reason we had to take her to the ER was because of gastritis (if that's what is was?????) causing the back up and the acid reflex. Sure enough the reflux stopped a day or two later. 
Since then she has been back to normal. I told him she still has some reflex from time to time but said gas pills should help take care of that...DON'T SAY IT :yfaint:and to stop the PPI.

No my son is not dx yet. His Allergist put him on a short round of the swallowed steroid.
If it worked well then that means it's something but if not the allergist and or GP will point us in a new direction. 
:cool2:I KNOW THAT'S NOT HOW SOME WOULD DO IT but it's what we want for now.
He's meeting with a new GP that's the head of a big department at the hospital. I'm hoping this means he'll be more with it to get him help IF it's needed. Keep in mind it might just be one of those thing.


----------



## QueenGothel

Still waiting for her response. :smile:


----------



## Farmwife

Thanks Mary. I'll wait for you response. I did find a page describing EGID at their web-site but it never made mention to treating it there. I guess my biggest Q is....... how do they treat it?


----------



## Farmwife

Wow how things change.

Grace is going in for scopes.

I called the head nurse and simply and politely line listed our concerns.
She said that our request are NOT unwarranted 
and she would go straight to the GI and let him know.
She called 2 hrs later and said the GI will be doing the both scopes.
Just waiting for someone to call and schedule it.

:yrolleyes:Also we're wondering if it will be possible to switch GI's with in Devos. 
The head GI we've dealt with and she's very nice.  If we want a fresh set of eyes why do we need to leave the state. 
I don't know if Devos has rules against that?????:sign0085:

Mary we still want to hear about Mott's. That will be the back up plan.

After talking in length about it with the hubby we both feel Grace NEEDS a GI in Michigan. 
We have grown to love Grand Rapids and the hospital. I know shocking, right? I love it as long as I know were coming back to the farm.:smile:
 I have family that lives there and it's doable for my hubby to do the day trips with us. 


We still want Cincy for the EGID's program.


----------



## crohnsinct

So the GI you parted ways with it doing the scopes?  

Sorry I may have missed something...why do you want scopes?  To recheck and see how things are going?  Just wondering if other issues popped up that I missed or more likely am forgetting.


----------



## Farmwife

crohnsinct said:


> So the GI you parted ways with it doing the scopes?
> 
> Sorry I may have missed something...why do you want scopes?  To recheck and see how things are going?  Just wondering if other issues popped up that I missed or more likely am forgetting.


Yes that GI. 
That's why I called the head nurse. We just felt over the week-end since we are switching GI, we having nothing to lose by calling and stating why we feel his care of Grace is misguided and undertreated. The nurse took the statement seriously and said we (or she) needs to let the GI know this.

See what happens when one has time to calm down!:smile:

She needs more scoping because.............
1- To see if the microscopic damage has changed for the better or worse.
2- To see what her Eos count is at.
3- MORE biopsies need to be taking. Not just 6 total.

What the furture will hold I don't know.
This time around Grace is on EEN, LDN and PPI's. 

Now if you don't mind I have to call the rheumy and tell them that Grace is back to daily joint pains. Oh the rash on her neck is getting worse. It's a good thing the Derm gave us some cream to try. Oh and yes, she was dripping a few drops of blood while passing stool.:yfaint:


----------



## crohnsinct

Well the current GI gets points for agreeing to scope even after your parting of the ways.  Maybe see if you could get assigned the the new GI in time for scopes so the new doc treating her is the one actually seeing what is going on.  It can't always happen that way but if it can it is helpful.  

Good Luck.


----------



## Farmwife

crohnsinct your pm box is full.

Sorry let me clarify "parting of the ways".:yrolleyes:

We walked out and said (between ourselves) we need a new GI. Nothing was said to him. Well, until today. Their's a lot of GI's that don't know how to treat EGID's. Not just him.

I'm also glad he'll do the scopes and I'll ask how many biopsies he will be taking.


----------



## crohnsinct

Farmwife said:


> crohnsinct your pm box is full.
> 
> .


Oops sorry bout that!  Just cleaned out.  

Oh so the new GI is more for the EGID than IBD...makes sense.  I would still try to get resassigned prior to scopes  and see if I could get the new GI to do the scopes.


----------



## Farmwife

Hi everyone. :rosette2:
Sorry I've been lurking but not typing much. 

Grace's EIM's are picking up.
She's sleeping more.
Weight down more.
Back to constipated.

The newest problem is I went to put a suppository in and 
she screamed and cried and almost shook because of the pain.
 Now she's never liked the suppositories put in but she lets it be done. 
So this makes me think that something is swollen further up.
:shifty-t:*Has anyone ever had that*?????

It's harder this time around, I don't know, why but it is. 
Maybe because I thought we were so close to her having remission
 and now it feels like we've slipped back down.

Have a good night y'all. I'm off to eat something fattening and then to bed.


Oh and my boy's new GP said he needs to see a GI get scoped. 
:yfrown:Man this just isn't my week.


----------



## Tink572

I haven't been around much lately. Trying to catch up on everyone. Sorry to hear both your children are having a tough time.  Hope things turn around soon for you.


----------



## ChampsMom

Oh FW.... :ghug:   

Wish I could offer more...  sending prayers your way...


----------



## DustyKat

Oh my goodness FW...:ghug:...what a difficult and heartbreaking time for you!  

We have never had issues really low down here and I am so sorry that I can't be of more help to you. Just know that you are are all my thoughts and I am sending mega loads of love, well wishes, luck and healing thoughts to you and your little ones. :heart: 

Dusty. xxx


----------



## my little penguin

Similar issues here 
Call your Gi Monday at the latest.
On call if it gets any worse sooner


----------



## CarolinAlaska

I'm sorry your daughter seems to be going downhill again.  So frustrating!  I wish you could have found the new GI before your son needed him/her too.  Any updates about switching GIs at DeVoss or within Michigan?  How old is your son?  You and your sweet little ones are in my thoughts and prayers.


----------



## crohnsinct

!I agree with Carolin.  Best to get them both scoped by new GI.  What's up with that?  Have you been reassigned?  What is taking them so long...you are staying with the same practice so it is a simple shift!  Do you have a date for G's scopes yet?  Geez!  Things move slow in there! NYC girl would have to be drugged to survive that pace.


----------



## Tesscorm

FW, sorry both your little ones are struggling!  It's already so tough when older kids suffer but can't imagine when they're as young as yours. 

I hope they feel a bit better today! :ghug:


----------



## Spooky1

Oh, poor little things, hugs to them and to the mums doing their best to look after them.  It does seem to impact on the whole family, doesn't it.  At least you're amongst friends, understanding ones, on here.  good luck to both.


----------



## polly13

Hi farm wife hope things are a bit better today - definitely talk to GI about new symptoms Lucy was like that before she was diagnosed.  So get what you are saying about it being harder second time round - I think ibd is incidious and lulls into a false sense of security --- then it rears its ugly head again!! Hugs to you and grace


----------



## QueenGothel

Did you ever talk with anyone about seeing a doc at Motts now that you have the new CSHC? Like would they cover it?  FYI everyone I did respond but sent my friends response via PM because she does not belong to the forum.  Basically she stated that she had went to Motts for the second opinion and the GIs recommended allergy testing for the EGID.  Her son whom recently diagnosed with EGID (at Motts not Devos) after colectomy due to UC was found to be allergic to corn (at Devos with an allergy/immunologist).  They removed corn and he is doing better.  Did they ever do a scratch test on a Grace?  Has she saw an allergy specialist yet? Is Cincy in the picture for this or do you plan to see someone at Devos?  Has that GI recommended allergy testing?  

I hope she is doing better today.  Sorry your doing the two steps back after your forward move seemed so positive.  Could it be not food related and something environmental since she is doing the EEN still?  Hugs to you FW and Grace. <3


----------



## my little penguin

Mary 
Her daughter is not EEN she eats chicken and rice plus formula  so Ibd or EGE could be a factor.

FW hope the Gi has answers or you found a better place to have a scope .


----------



## Farmwife

Scopes at the end of the month.

I'm not worried about this GI and Grace's colitis and doing scopes. 
He's the one that found he Eos disease. 
I believe he can handle that.
It's the EGID'S + Colitis that concerns me.
BTW, I have found NO GI's in my state that treat this right.
It's just to new I guess. 
Believe me I don't want Grace scoped every 2-3 months BUT I don't want her being tube fed for the rest of her life either.
:voodoo:So which devil do you choose?????:voodoo:

Cincy is a no go for the special insurance for now.

Mary, Grace has had the skin prick test. It showed Wheat, eggs, CORN (the big one) and beef. 
However EGID'S is notorious for showing false negatives and positive. Plus she has a sulfite AND fructose sensitivities. 
So any food high in those are a no go for her.:eek2:
 Wow, after typing this maybe she'll never eat.:ybatty:
Her Allergist has two sons with EoE.
 Grace's disease has mainly to do with the lower GI track.


Update:
I went two days without doing a suppository and she seems fine for now.
Her joint pain is now in her left elbow.
Sleeping more.

Also her blood sugar is a bigger deal than we first thought.
Might be starting diabetic testing soon.:voodoo:
* Also for the 3 rd time her sodium levels are low on her blood test. Does anyone know what that has to do with anything????*
Her vitamin D has dropped right down. :voodoo:

The farms busy. First cutting of hay is in full swing, corn sprouting up and cherries fast approaching. Oh how I love summer. 
:hug:I'll check in when I can.:hug:


----------



## Farmwife

Never mind I read the sodium wiki page.:voodoo:


----------



## Farmwife

Update:

Grace seems to be happier.:hug: Well she's still struggling.
She's been doing full EEN for two day and she seems to be in less pain.:dance:
Thanks God for the formula and g-tube.


I'm off for awhile. Lots of stuff coming up on the farm and in the family.
 I'm looking forward to it and so are the kids. 
Just send some prayers our way that their health holds out and my endurance.

Hugs to all this summer. I'll check in when I can.


----------



## ChampsMom

You all are in my thoughts and prayers...  ((((hugs))))


----------



## Farmwife

Hi all,
 Well a couple weeks off and........................................

Grace was in the hospital for a cellutitis infection around her g-tube and belly button. Almost had to pull her tube. Thank God it's still in. She just finished her course a antibiotics. Oh man I hope she doesn't get c diff again.:voodoo:
Her stoma is still slightly red. I'll be keeping a close eye on it.:eek2:

Her joint pain got unbearable and she has a day of no walking.
Went to the Rheumatoligist down state and the PA said she still believes the her colitis is playing a big factor. :voodoo: She also concerned that her arches of her feet are falling (she had high arches at one time). Also her Hyper-mobility (double jointed) might be more problems then we want (as in she thinks we might be looking at a connective tissues disorder). She wants to wait for scopes. She ordered physical therapy, special shoes and soft braces for her legs.

Oh and her eczema flared big time!

The good news is her GI problems seem to be doing GREAT. No pain when pooing, no being backed up and no pains in belly......well except the cellutitis (sp?)
I hope that the colitis is not the problem. 

So far I think LDN is helping.:dance:

Despite some set backs we've been able to keep crazy busy and do stuff on the farm and with family. It feels good and I know Grace likes it.:hug:

I'll be on when I can.
Miss ya all!:hug: Well......most of you:tongue:


----------



## Jmrogers4

Sounds like our month  cellulitis led to a course of antibiotics which led to C-diff (Hope she avoids that).  Eczema is running rampant!! 
Poor Princess hope her joint pains get all worked out soon.  Glad you are able to do some normal things well at least normal for a farmwife :ycool:


----------



## Tesscorm

Oh my!!!  Sorry poor Grace (and you) have had it so rough the last couple of weeks!!! 

I hope you see only improvement going forward! :ghug:


----------



## Spooky1

I've had cellulitis in the peg tract before.  its painful, poor Gracie.  I now have crohns in the peg tract.  a tube change is excruciating with my nurse playing tug of war with it for twenty minutes.  The new tube is also difficult to get in.

Hope things settle for Gracie and you.


----------



## QueenGothel

*Eczema*

I have research a ton on excema lately because i am going chemical free. so am making our soaps, shampoos and detergents. Have you tried going detergent free completely? Like using Dr. Bronners to wash her clothes and sheets and body? Let me know if you want to try it. I have a few easy recipes for shampoos/bodywashes that aren't as harsh as well.

Hope she turns the corner soon.


----------



## Sascot

Wow, I seem to have missed so much being away for the wedding and holiday.  Sorry to hear Grace has been having so many issues.  Glad her tummy is okay at the moment.  Hope you manage to get something done soon to help the other issues out.  Hope your poor boy gets on okay seeing a GI


----------



## kimmidwife

Far wife,
Is Grace on a probiotic? Some say it helps to lower the chances of getting c diff. Caitlyn's doctor says it is extra important for these kids to be on a probiotic.


----------



## Farmwife

:tank:*OPERATION CLEAN OUT HAS STARTED!*:tank:

:dance::dance:I LOVE THE G-TUBE!:dance::dance:
When I find the time, I shall write a poem of love to the g-tube.
Perhaps just a short sonnet but it will be profound none the less.


First question-
Does any of your kids sweat when going through the clean out???

So everyone pray/wish/hope for CLEAN SCOPES for my little lady.
I know she still struggles but I am seeing some improvement in the bathroom area.
I pray this reflects in her scopes.:hug:


----------



## LJS

Sending thoughts and prayers your way! I hope her scopes reflect healing and healthy parts! Poor baby and poor mama! So much to bear! But Grace is so very lucky to have you.

Lin


----------



## Sascot

Good luck for the clean out and scopes!!  Don't remember any sweating while doing the clean out.


----------



## upsetmom

Good luck with the scopes!

I don't remember any sweating either.


----------



## Niks

Good luck!! Really hoping everything comes back clear.  No sweating here either!! 

Xxx


----------



## Mehita

DS alternates between sweating and the chills whenever he has D. Not exactly a clean out, but similar.


----------



## Spooky1

Me too Mehita.  Can't say I've noticed it with any clean out, but if flaring the clean out can aggravate the crohns areas.  Can't think why we need a clean out when we suffer D lol.  Perhaps, we hope, the little one is better and does need a clean out.


----------



## Tesscorm

Good luck!!!  I hope the results are good news!!


----------



## Farmwife

Thanks everyone.:hug:
Start of day two and all is going great.
:dance:No more pain or sweating and she's happy.:dance:


LDN has been worth it to us. I just hope it continues.


----------



## Farmwife

Well that didn't last to long.:voodoo:

She's been vomiting most the night and her last bowel movement was Monday morning.
So nothing in the way of stool since then. :eek2: Should be an interesting trip. I'm putting small amounts of water through her g-tube to keep her hydrated.

Did this happen for any of you?


:hug:


----------



## DanceMom

A always vomits.  It isn't fun.  The last clean out she did not have any BMs but instead vomited feces.  GI had us go to the ER to get fluids, enemas, zofran, and an x-ray to check for obstructions (she did not have one).

Hope things turn out okay for Grace!


----------



## jmckinley

Yes, Ryan vomits with clean out. Poor thing had to drink stuff twice last time. He got it all down and blahhhh.....had to start all over! So sorry Grace is having a hard time. Sweats too. It is never fun. I hope the scope shows some good results!


----------



## kimmidwife

Just wanted to wish you good luck. Hope you get some answers!


----------



## Niks

Poor little thing   Really hope you get some good results xxx


----------



## Spooky1

I always end up quite exhausted through this procedure. nice lot of fluids if she can take them after procedure.  Good luck with it.


----------



## Sascot

Thinking of you both!


----------



## Farmwife

Home and all went well:hug:

:dance:Gi said the visual looks good of her track:dance: but he'll know more when he gets the biopsies.

So now I wait. We all know how good I am at that.:tongue:


----------



## QueenGothel

Right here with ya... Waiting freaking sux!  Glad all went well!


----------



## Kev

Glad to hear the visual went well.  As for the biopsies, my disease still shows up under microscopic exam.  Just doesn't flare up or progress... sort of like the LDN keeps it in a stasis (poor choice of words... maybe dormant is better).  Which is why I tell folks that I don't consider myself cured, or even in remission  (like, if I was cured/in remission, then I wouldn't need to keep taking a pill every nite, right?).  Regardless of whether my take on it is correct or not, these little pills do what they do, however they do it, and I'm OK with that... with not being 'cured'... not in a 'remission' where I no longer have to take any medication..  I've got a life, a good life, and sometimes that is all one can ask for. Mind you, if someone came up with a wonder drug... one shot, one pill, and it all goes away for ever and ever... I imagine I would be willing to play lab rat once again to try it.

Anyway, my long winded point... count your blessings.. take your victories where/when you can.  Focus on the positive.  My Crohnie gut tells me the biopsies will turn out good too.


----------



## Jmrogers4

Glad visual looked good, hope biopsies come back sparkling as well.


----------



## Sascot

Really glad it went well and the visual was good!  Hope the wait isn't too long for biopsies!


----------



## kimmidwife

Glad to hear it went well!!!


----------



## Farmwife

Got the biopsies results back.

:dance:There is some Improvements the nurse said.:dance:
 So the GI wants to add Apriso and Pulmacort (sp?).

Am I wrong??? Why say improvements and then add MORE drugs.

Also her GP has been sent the biopsy results and I will be there in the am to get my copy!:hug: Like y'all didn't know that.:tongue:


Oh he wants her to have a FC test this week and is going to redo it in two months.
Does it sound like he's not telling us everything?

The nurse will be calling back tomorrow.


----------



## Catherine

Maybe the doctor wanted faster improvement.


----------



## my little penguin

simple- improvements - means the gut looked better than last in terms of biopsies but not to the place of remission where there is no on going damage.

pulmocort ( swallowed steriod) - would be for her EOE/EGE - it does not work on EC or IBD

Asprio - more evidence of damage still to the colon.

I would ask the GI to contact you and review the results and what they mean and why you are treating your child with XYZ-
any change in treatment ( especially adding a med) warrants a chat with the actual doc.

REALLY NEED to talk to your gi so you can understand what is going on.
We cant do that for you.


----------



## Farmwife

Well I have to admit that when I heard the nurses voice I was excited
 because that would mean good news. :dance:
So the last sentence she slipped in the new drugs
and I said why and she said she would find out.

But yes, I will be asking for the GI to call.
:dance:My advantage now is that I get to write out questions and be more prepared.:dance:


----------



## Spooky1

So how is she coping with having been through ghastly tests?  Hope the little one is doing well. Not heard of some of those meds, and we wait weeks for biopsy results.
Best wishes to both you and her.


----------



## Farmwife

Grace is a trooper through it all. Thanks for asking.

Ya, last time it only took one day to get the results.
Even the GI says it will take 5-7 days but it never does.
No complaints here.:dance:


----------



## DustyKat

Is Pulmocort the same as Pulmicort? 

We only have Pulmicort (Budesonide) available as an inhaler or as respules here, is that how you use it? 

So good to hear that things are still heading in the right direction FW and Grace is doing well through it all, bless her. :heart: 

Dusty. xxx


----------



## Farmwife

Dusty the kind of Budesonide he was speaking of is also called Encort (Brand name).
We've decided to ask for Uceris instead. It's suppost to work better in UC.


HELPOk now for a non-IBD question.

Grace was hit below the eye on Wednesday night. Her brother did it on accident.
Since then a deep black and blue bruise would show up and then fill in with blood under the skin. 
It's two days later and it's still happening.
 Now it's going UP on the side of her nose.:eek2:
She's in no pain but I've never seen anything like this.
 Can LDN or Singular or Budesonide (for the nebulizer) cause a reaction like this???

I will be taking her to the walk-in tomorrow if it get's much worse.
 Oh, my hubby lost a chunk of his nose in a farming accident. Thank God it wasn't worse.:kiss:

Always something around here.:ybatty:


----------



## my little penguin

You need to call your on call ped.


----------



## DustyKat

Oh okay, so Pulmicort is also called Entocort there. 

I agree with mlp in seeking advice. 

If you are using a nebuliser you would be using a full face mask, yeah? If so I wonder if that could be aggravating things??
Plus it will take a couple of days for the haematoma/bruise to fully develop. 

Dusty. xxx


----------



## Farmwife

I called and the Doc said she knows that days 2-4 are the worst for these types of bruises.
She said if she has head aches, or walking funny to bring her in ASAP. 
I'm glad I called. In my 6 yrs of being a mommy I never seen a bruise this bad.


----------



## Clash

Dusty, they are both budesonide but I thought pulmicort was used to treat asthma and was inhaled not used for CD at all?


----------



## my little penguin

Pulmocort can be used for asthma and IT can be swallowed for EGID's in the esophagus or stomach.


----------



## Clash

Does entocort or uceris also treat EGIDs in the stomach or esophagus?


----------



## DustyKat

:lol: I'm getting confused. 

I know Pulmicort is Budesonide but is Pulmocort the same as Pulmicort and does it come in tablet/capsule form? 

Is Encort the same as Entocort or did I just surmise that? 

Dusty. :ybatty:


----------



## Farmwife

Dusty I'm horrible at spelling. It's a good thing that some one else is teaching the kids.

Grace takes one ampule of BUDESONIDE in her nebulizer. PULMICORT is the name brand for this drug. And yes it's ENTOCORT. 

*Give me a break I thought my daughter's eye was going to pop out.*


----------



## Farmwife

Clash said:


> Does entocort or uceris also treat EGIDs in the stomach or esophagus?


Yes I "think" it can. I mean they give Pred as a treatment. So Uceris should work. I'm going to ask the GI if he thinks this is a good option.

I don't think the eos disease has much to do with the inflammation left. I think it's colitis (UC). BUT that's just my thought. I guess if I got paid 400 dollars an hour I would try to debate it with y'all. I don't so off to bed I go.:hug:


----------



## DustyKat

Farmwife said:


> Dusty I'm horrible at spelling. It's a good thing that some one else is teaching the kids.
> 
> Grace takes one ampule of BUDESONIDE in her nebulizer. PULMICORT is the name brand for this drug. And yes it's ENTOCORT.
> 
> *Give me a break I thought my daughter's eye was going to pop out.*


Settle Petal. :lol:


----------



## my little penguin

Uceris can't treat  egid in the upper part of the Gi track since it only releases in the lower tract .


----------



## Clash

MLP thanks, I think I get it now. One more question if this is the explanation and comparison of Uceris and Entocort:



> UCERIS tablets dissolve at a pH ≥7.0, the approximate pH level near the entry to the colon. During this process, the pill matrix expands and forms a hydrogel. Unlike UCERIS, Entocort EC* (budesonide controlled ileal release) targets the ileum and/or ascending colon, dissolving at a pH >5.5—the approximate pH of the duodenum.


then wouldn't entocort possibly be more effective for someone who has inflammation at the terminal ileum or would it be covered by either?


----------



## my little penguin

Not sur one thing to remember if your child is taking a ppi or h2 antagonist then the ph of their digestive tract may be different from normal since ppi 's lower ph .


----------



## Farmwife

MLP she's not on a PPI right now.

Clash - good point. When I research Uceris was before the scopes. Now it seems most of the problem has been pushed back to her TI.

Paging Dexky - Has Uceris been working for your boy? Where is his active disease?


----------



## Spooky1

Just about the eye, FW, steroids of any sort can mean you bruise super easy.  I also used to have red dots, like a rash, come up if I knocked myself, so sounds like a bruise which lead to a little more of a bleed under it.  I haven't been on steroids for years, disastrous side effects for me.  But I do remember the continual bleeding.
hope the little one is better soon.


----------



## Farmwife

Well Spooky1 she's been off of Pred for 5 months. Could it still affect her this far out???

Her bruise seems to be yellowing now. Hopefully it won't get bigger.


----------



## Sascot

Ouch that sounds sore!  I agree it's worth just keeping an eye on symptoms like dizzyness.  I remember my daughter falling into a metal bench - never seen her cheek swell/turn black and blue so bad either.  Went to A & E and spent 4 hours there only for them to say as long as there is no visual deformity they refuse to x-ray a childs head :ybatty:.  Of course if in doubt, best get it checked!


----------



## Dexky

Farmwife said:


> Paging Dexky - Has Uceris been working for your boy? Where is his active disease?


We won't really know until fecal cal in Sept.  He had no outward signs of problems before he started it.  He still feels great but ,unlike Claire(AZMOM), he gets the pred-like side effects from it.  We have backed off from 9mg/daily to every other day.  There seems to be some moderation of the facial swelling but he still has it.  My wife swears she can tell a difference on the day he takes it vs. the day off.  I'm not so sure.

Good luck FW with whatever course you choose!  How's her eye doing?


----------



## Farmwife

Thanks Mark.

Grace's eye is impressive but has stopped growing.
 I was thinking about teaching her to say........................ 
you think this is bad, you should see what I did to the other Princess.:rof:


----------



## Farmwife

Update:
I talked to her GI and we decided to hold off on the 5-ASA's for now.
He said she can do Budesonide if we wish and or when she flares up.
We're BOTH happy with the progress. 
I asked about the inflammation that is still there, he said that even the 
big drugs only bring *FULL MUCOSAL HEALING **30-40 **%* of the time.:eek2: Wow I didn't know that.


Now onto the twist...............................
Grace is getting worse in her joint pains, weakness and lameness.
Everyday now it's there and she's back to using a stroller full time.
My GI said he would call the Rheumatologist and let him know he thinks it's not IBD related.......for now.
When he looked at her file the Rheummy said that the next step
 would be Pred and Methotrexate.:awe: ARE YOU KIDDING ME! 
Grace now is doing P.T. two time a week. The Therapist said Grace has GREAT muscle tone but is weak at her joints where she has the problems.
Another mystery to burst my bubble.:voodoo:

But honestly I'm afraid that Grace won't be able to walk in a few weeks. 
Why is nothing ever clear cut for her.


----------



## kimmidwife

Sorry to hear that! Have you looked into tumeric at all? I have been researching it and it is supposed to help with inflammation anywhere in the body. Might be worthwhile to try for the joint inflammation. I have a lot of joint pain and issues. I just started taking tumeric or curcumin is the medical name. If you get it make sure to get the one that has bioperine which is a form of black pepper that increases the body's ability to absorb the curcumin with out it is barely absorbed. I also have been researching D phenylalanine which is supposed to also help with chronic pain and inflammation. I have started taking that one as well. Keeping my fingers crossed that they help.


----------



## CarolinAlaska

FW, sorry your daughter is hurting so.  I know it is hard on you too.


----------



## Niks

Poor Grace ale:

I really hope her joint pain gets better.  She really doesn't get a break  

(((HUGS)))  xxxx


----------



## Sascot

Thinking of you both!!  Hope the rheumy sees her soon! :hug:


----------



## polly13

Hope the joint pain resolves soon


----------



## Niks

How's Grace doing FW?  xx


----------



## jmckinley

Sorry to hear there are more ill effects for Grace...and Mommy! (((HUGS))) Ready for you guys to catch a break!


----------



## Farmwife

Thanks for the check in. :hug:

Grace is HAPPY. 
We just have to get her increasing joint weakness/lameness under control.


My son, well.........he has something.
Whether it's EoE of even IBD :voodoo:I just want to find out.
It's amazing how their presenting in different ways.

The exciting news is this week we're going:dance: SCHOOL SHOPPING.:dance:
The kids will get uniforms this school year.:dance: I LOVE IT!:dance:
I can't believe Grace is old enough to go to school. 
What, oh what, will I do with my time??????

So if y'all know of good sales for uniforms or school supplies let me know. 

HUGS


----------



## farmerswifey

Hey Farmwife, sorry to hear about Grace and her pain!  If it's not one thing, it's something else!!!! How exciting, you will have a little schoolgirl, and I bet you will cry happy, excited tears on her first day, I always did with my three!!  They grow up so fast.....xo


----------



## Jmrogers4

Have you looked at Old Navy for uniforms?  They seemed to have some good deals, Jack's new school has a dress code.  No jeans and collared shirts.


----------



## Tesscorm

Emily and Stephen wore uniforms throughout elementary school - the BEST thing ever, in so many ways!!! 

When Em started high school, their HS did not use uniforms - she wrote some essay (forget what the assignment was??) giving her opinion that she preferred uniforms and felt all schools should have them.  Not sure how popular that made her :lol: but she really did feel it was so much easier to get up and only have to decide between the grey skirt or pants! 

I'm sure you'll miss Grace at home but, at the same time, I'm sure you'll enjoy having that 'free' time as well!


----------



## Mehita

We don't have uniforms, but another school in our community does. A lot of the parents order from Lands End, but lots of deals can be found at their outlet stores too or in their clearance section online.

When is the first day of school?


----------



## my little penguin

Old navy and children's place run good sales on uniforms plus most schools have hand me down uniforms you can purchase
These go quick


----------



## Farmwife

They'll start the first week in September but Grace will miss her first day because her Rheumy apt. is that day.



Just got a call from farm boy's Doctor (his nurse). She said the labs came back and his CRP is climbing.
His CRP is at 2.4 and the normal range is .09.

Do your kids get higher than that when there inflamed????


----------



## Dexky

What unit of measure do they use for CRP?  Ours says normal is anything under 10.0 mg/L.  EJ's SED rate has been above normal but his CRP has never been out of range.


----------



## Farmwife

Dexky said:


> *What unit of measure do they use for CRP*?  Ours says normal is anything under 10.0 mg/L.  EJ's SED rate has been above normal but his CRP has never been out of range.


I have no idea. 
I should be getting the results in the mail today. That's the only thing that erks:voodoo: me about his new GP office. You can't pick up the labs until the GP sign's off and they mail it straight to you. Grace's GP knows to let me pick it up whether she (GP) looks at it or not.:kiss: I'm training them well.


I talked to my son's GI nurse and told her what's going on. He seems better. His Allergist put him on 3 days of Pred and Amoxicillin because his cough and sinus like problems. Basically he's on all his trigger food which we (GI, GP and Mom) believe is making him very sick. 5 1/2 weeks to scopes for him. I just pray he makes it that far. Why do these things have to happen before school.


----------



## my little penguin

Pred within 6 weeks of a scope will reduce the inflammation and presence of EOS
You may want to "talk" to your Gi .


That was what we were told from Cincy egid program
Pred within 6 weeks invalidates a normal scope.


----------



## Farmwife

I did yesterday but your message made me realize:ybatty: I never got a straight yes from the GI nurse because we got talking about other things.
Just called the GI and the nurse said she would ask the PA.
 :stinks:Well it's kinda to late!:voodoo:
 Already gave him is second dose and tomorrow he gets is last. 
It was only 3 days of pred and the scopes are 5 1/2 weeks away.


----------



## my little penguin

Doesn't matter three vs five pred is pred .
Have your Gi not PA call Cincy that is their protocol .
No sense in wasting a scope .
The counts and biopsies will not be accurate period.
The Gi will know this .


----------



## Farmwife

Well that just ticks me off. Why was that not a red flag to the GI nurse??????

I'm waiting for a call back. NOT A HAPPY CAMPER RIGHT NOW!!


----------



## my little penguin

The first time DS was scoped upper only to look for EoE our Gi knew he had been on pred 7 weeks before but didn't think about it.scope normal
Following year we were going to Cincy found out 6 weeks was their cut off.
We were suppose to scope there but crohn's symptoms reared their ugly heads and we scoped soon and he was dx with damage in the upper and lower scope.


----------



## Farmwife

Never heard from the doc about my boy but he is having stomach pain big time and complaining about swallowing.


By the way for future readers, if you want to buy school uniforms go in the middle of summer because by August the store have sold out of most of it.:voodoo:


The blessing is the rack had 4 dresses left...IN THE WHOLE STORE.:voodoo:
 I needed a size 6. Their was one size 8 and three size 6's. :dance::dance:
I snatched them up like a thieve and even hid them under my groceries so no other mom's would try to steal them.:rof: Crazy moms out there.:tongue:


Grace is so happy but theres a bit of a cloud for us.
She now has a constant pain/weakness/lameness in her legs and right arm (shoulder to elbow). It never leaves now. 
The Rheumy is referring her to an Orthopedic doctor.
She is doing PT 2 times a week. She loves going and Therapist is seeing what I am and thinks........well we'll see what the docs say.

Have a good week-end y'all. Tomorrow we're finishing all the school shopping.:dance::dance:


----------



## ChampsMom

Hey FW - 

I've been away so just catching up - Sure do hope Grace feels better soon - how exciting starting school with a uniform!  I love the uniform idea - they are so cute!!  Our Target sells uniforms (not sure price comparisons, I just know they sell them).

Good luck with your shopping!  And I pray everyone starts feeling better..


----------



## DustyKat

Dexky said:


> What unit of measure do they use for CRP?  Ours says normal is anything under 10.0 mg/L.  EJ's SED rate has been above normal but his CRP has never been out of range.


That surprises me Dex that they are using the same unit as measure as we do. The US normally uses a different unit of measure but I don't recall what it is...maybe mg/dl??  

Farmwife - That would be equivalent to 29 in the unit of measure that Dex is using. For Matt his highest reading was a little over 360 mg/l so about 36 in the unit of measure you are using. 

Well good grief! I didn't know you guys wore school uniforms in the US (well some of you)! They say you learn something new everyday and I just did! :lol:

Dusty. xxx


----------



## Dexky

DustyKat said:


> For Matt his highest reading was a little over 360 mg/l so about 36 in the unit of measure you are using.


So Matt's was 36 times higher than topmost normal??  Even at dx, EJ's crp has never been out of range.


----------



## DustyKat

Yep, it was Dex, soooooo different to Sarah. 

Even at diagnosis when his symptoms were mild to say the least his CRP was 155 or thereabouts.


----------



## LJS

So excited for Grace to be starting school!

My son's CRP level went as high as 90..that is when he was first diagnosed! His levels for CRP, Sed, etc were through the roof...we go in a week from today for some bloodwork adn  hopefully his time on EN will show great benefit in his labs


----------



## kimmidwife

Good luck with school! You may want to order some uniforms online. We did really well at old navy last year when our kids went to school. This year we're homeschooling so don't have to worry about it. Also sometimes the school will sell uniforms or other parents will sell used ones.


----------



## Farmwife

I got ALL of it. :dance:
Target had a good sale.
Oh, I went a bit nuts. There was a jacket for Grace that was perfect. :kiss:
Sooooo cute and soooo expensive. 
I told my hubby that the jacket made the uniform.
I didn't tell him the price. It's best he not know.:rof:
Of course I also bought hair clips to go with the jacket. 
I really do need help.:tongue:


I wanted to ask, *does any of your kids have undigested food in their stool?*
How long did it last and did they (GI office) give you any warnings about it????


I'm off for a week.
 I'm determined to move my son into his new room. 
But first I have to move the mountain of junk that clutters it.:ybatty:
I told myself I won't get on here until it's done. 
We'll see if I can do it.:hug:


----------



## Farmwife

A good and bad update.

The bad............................:voodoo:
Grace's GI, GP and Allergist believe it's best to keep Grace on EEN and keep her an VERY limited diet. 
No new food for the near future.
Basically I got told to "enjoy the good times while it last" and "let's not rock the boat".

The good news........................
Her Fecal Cal. came back and it was 45.
That's right!!!!!!!!!!!! Ya for LDN! 
:dance::dance:<<Do you know what these bananas are doing?>>:dance::dance:
----------------*THEY'RE ROCKY THE BOAT BABY*!


----------



## Tesscorm

Uggh, sorry that Grace has to stay on EEN   But am glad that it and LDN seem to be working for her!

Just caught up on your shopping spree!    Ya just gotta splurge sometimes!  And, as you were told, enjoy the good times!!!!  Especially when they're small!  I'm a bit jealous, S is leaving for school on Sunday, went grocery shopping tonight and I don't know how many times I thought 'oh, don't need that, S won't be home', 'oh, can buy multi-grain now, S won't be here', 'hmmm, don't need to buy so much milk, we won't finish it without S at home'   Didn't actually cry but, after the umpteenth reminder while shopping, sure felt like it! :lol:  But, anyway... it's a good thing, he's growing up and moving on!   But, do enjoy your little ones while they are little! :heart:


----------



## Farmwife

My heart goes out to you Tess:hug:.
My twin and I moved out the same week. 
My mom adopted two dogs that look like...twins.:tongue:

Tomorrow is my birthday.

 Who knows what my poor mom will buy now. :eek2:
Her twin babies our middle aged.:lol:


----------



## crohnsinct

HAPPY BIRDTHDAY FARMWIFE!  :birthday2:

Twin bottles of wine perhaps?  For your mom not you!  You get a twin pack of seltzer!


----------



## Tesscorm

:wine::bdayparty::wine:

Happy Birthday FW!!!  Hope you have a GREAT day!


Yes, similar story actually with my mom...  my brother moved out in June, our dog of 17 years died that summer and I moved out in November.  She barely had time to adjust to one 'change' before the next one happened!:eek2:


----------



## crohnsinct

I can't wait for everyone to get out of my house!  Dogs! Kids! Bats! Mice! :wine:


----------



## Tesscorm

:lol:  what about hubby?  Does he get to stay?  At the very least, he can uncork the bottles!  :rof:


----------



## Farmwife

crohnsinct said:


> HAPPY BIRDTHDAY FARMWIFE!  :birthday2:
> 
> Twin bottles of wine perhaps?  For your mom not you!  You get a twin pack of *seltzer*!


 ???seltzer??

I've heard of that before....I think my Grandma told me about it.:tongue:


----------



## araceli

:rosette2:Have a very HAPPY BIRTHDAY.


----------



## CarolinAlaska

Happy Birthday and congrats on the FCal level!


----------



## Sascot

:bdayparty:
Hope you have a great day!!


----------



## upsetmom

:birthday2:

Happy Birthday FW!!!


----------



## Niks

Fabulous FC results FW!  :dance::dance::dance:

Have a fantastic birthday 

:birthday2::bdayparty::birthday2:


----------



## Kev

Took me years before I became ... "rock solid confident" in LDN.  Maybe that's because of the nightmare this disease can be... maybe it's male pessimism.. well, the list goes on and on (sort of like myself).  I kept sort of... 'expecting' .. it would stop working. So for years I kept taking 4 G of Salofalk (5-ASA) although there was absolutely no indication it was doing anything.  It wasn't, but it kept my GI happy.  And I kept to my rigid diet. I think, in one way, my pessimism, superstition, whatever you want to call it, did me some good.  A sensible, strict, IBD beneficial diet never hurt any of us.. and the healing that the LDN had started... continued.  So, I not only managed to stop my disease with LDN, but I then provided my body time... time to heal, time to rest, time to rebound, before I started 'experimenting' with normal food.  Now I can eat pretty much anything. The only things I have to watch are gassy foods (scar tissue does not enjoy my eating gassy stuff.... nor do people close by)... and sugars & carbs strictly due to my diabetes. So, if the doctors want to stay on EEN, I think they are being cautious, careful, taking it safe.
Which is a very good thing.  Doctors don't have a lot of... historical data to turn to... or peer information to seek out... or medical documentation to fall back on.. when it comes to decision making with regard to treating someone with LDN, even less in combo with EEN.  Much better to play it safe, take it easy, and avoid letting their guard down, even refrain from getting a parent or care givers hopes up... until they are absolutely confident.  And confidence takes time to develop. As I'm sure you are already aware.


----------



## Spooky1

Sounds like she has the same boring foods as me, along with the liquid feed.  Must find a doc to give me LDN


----------



## ChampsMom

:bdayparty:  Happy Birthday Farmwife!!


----------



## QueenGothel

:bdayparty:

:birthday2:

Today is my moms Birthday too!  Hope you have a great day.


----------



## Jmrogers4

:bdayparty:
Fabulous FC results


----------



## Catherine

:bdayparty::bdayparty::birthday2:


----------



## DustyKat

A GREAT BIG HAPPY BIRTHDAY TO YOU FW!!!







Hope you have a fab day filled with love, laughter and surprises. 

Dusty. :heart:​


----------



## Spooky1

oops Happy Belated Birthday!  Hope it was a good one.


----------



## Dexky

Missed you b-day FW!  Hope it was happy!

Good news for Grace...that's the best present ever!!


----------



## Farmwife

Thanks for all the B-day wishes.:hug:

My hubby:kiss: gave me a 12 day orphan kitten . 
He was so sick and I told the kids he might not make it. 
Grace with her BIG blues eyes said, I was sick but you helped me. 
Oh man, that about killed me. 
After vet bills, special cat food, round the clock care for two weeks and the love and devotion of a little girl...
I'm happy to say that my kitten named Texas Tough is alive and playing. 
Come to find out Texas has a cleft lip. 
That's why mom cat didn't take care of him because he couldn't nurse enough.

Update:
Grace has been put back on full EEN for a week or two. 
She's having some issues but it's still unclear what's the cause (EGID's or IBD).
We still have room to increase her LDN but no talk of that yet.

On a good note,
Grace receive custom made inserts for her shoes and a big difference in her pain and walking.
She still is having pain but it's better. For the last 4 nights she's needed NO meds to help her pain. YA!!!!!


My boy started his clean out today. Thursday is scopes and I'm one nervous wreck as to what this kid has. I still hope it's just BAD allergies and acid reflex. Crazy the things we hope for.:tongue: He has told me his knees hurt and lately he has pain going poo. Still I'll be in my bubble until Thursday.

Hugs to all.:hug:


----------



## Sascot

That's great the insoles are making a difference!  Every little good thing makes a difference.  Hope the EN helps the other issues.
Good luck for the scopes on Thursday!!  :hug:
Glad the little kitty managed to pull through - I would love a cat, but hubby doesn't like them at all.


----------



## Tesscorm

Good luck tomorrow!!!  I hope you get answers but only the ones you want!! :ghug:

Hope all improves for Grace soon and she has NO pains! 

And, yay for the kitty!!!


----------



## upsetmom

Good luck with the scopes.:hug:


----------



## CarolinAlaska

Thinking of you and your son as you head to scopes tomorrow.  Glad to hear Grace found something to help her pain - I hope the EEN helps put her back on track...


----------



## Dexky

Best wishes today FW!


----------



## upsetmom

:ghug:..Good luck!


----------



## Mylittlesunshine

Good luck with the scopes today x


----------



## Sascot

Thinking of you. Hope all goes okay


----------



## Jmrogers4

Thinking of you today, Good luck hope all goes well with scopes


----------



## Spooky1

Hoping all went well today.


----------



## CarolinAlaska

Any news yet?


----------



## QueenGothel

What's the word Farmwife?


----------



## Farmwife

Scope for my boy went well.:kiss:
Vissaully a looked well. 
Of course EoE can still be at the microscopic level.

I must be spoiled rotten.:tongue:
Grace's biopsies both times came back the next day.
His, since it was done in the afternoon and it was Friday yesterday,
 I still haven't heard and won't till Monday now.
 I HATE WAITING!


----------



## Sascot

Wow, next day results .  Takes at least a week here!
Hope you get them first thing on Monday!


----------



## Niks

Seriously quick results!!  Glad all looking good xx


----------



## Spooky1

I usually have to wait 6 weeks!  Bloods are quicker of course.


----------



## Farmwife

No word back yet about his biopsies. 
Why next day results with Grace and not with my son????
Just thinking/venting/worrying out loud.


----------



## kimmidwife

Hope you get them quick! Always took us at least 10 days!


----------



## Farmwife

Biopsies back and no EoE! YA!!!!!!!!!!!!!!!:dance::dance:
He does have inflammation in the esophagus but we're hoping it's reflux.
He'll be taken off his known food allergies.
Hopefully his pain stops and life goes on.:dusty::ybiggrin::dusty:


Update on Grace
Sick with a cold, which flared her asthma, which also flared her eczema.:yfaint:
Back to using the g-tube full time. She says she just can't eat.


----------



## Jmrogers4

Great news on your son!
Hope Grace feels better soon


----------



## Spooky1

Poor little Gracie, but hope bro is easily treated.  Got your hands full really haven't you, FW.

best wishes.


----------



## Niks

Good news about biopsies!! Everything crossed that it is reflux :ghug:

Poor Grace, they pick up everything once they've started school. Hope she feels better soon xx


----------



## DustyKat

Oh my FW, how up and down for you! :ghug: 

So fab to hear that your little guy's biopsies were clear! YAY! :dusty: Sending loads of luck and well wishes that it his issues are easily resolved. :heart: 

 So very sorry to hear about Princess Grace, bless her. :hug: I hope more than anything that you can soon get off the carousel and start enjoying the rest of the park. 

Thinking of you! 
Dusty. xxx


----------



## kimmidwife

Few,
So glad to hear about your son! That must be such a relief. I am sorry Grace is feeling sick again! Hopefully just a bump in the road and she picks up again fast!


----------



## araceli

So happy about biopsies results. Hopefully Grace gets better soon.


----------



## Tesscorm

Glad all looks okay with the little prince!   And, hope Grace is feeling better soon! :heart:


----------



## Farmwife

We were so close! 
I see it happening again. 
The down turn. 
Today she sat to go poo and nothing happened. 
That's how it (colitis) started last time (1 1/2 yrs ago).
If I remember correctly it was during a virus also.

Her asthma is out of control and now the allergist wants her on a 4 day pred burst.
Her eczema is worsening. 

She's losing color and I'm on the verge of putting her back on her pump once again.
That'll be fun carrying her back pack around at school.

Her leg pain was the worst I've seen it. 8 hrs of on and off again screaming with no meds helping.

The Rheumy never called back, The GP said give Tylenol and I'll get a hold of the GI tomorrow.
I'm wondering if a higher burst of pred would be better? I'll ask the GI tomorrow.

I just pray once the virus settles, she'll be able to pull through quickly.

:voodoo:I hate allergies/asthma/eczema, :voodoo:I hate viruses, :voodoo:I hate EGID's and :voodoo:I hate IBD.

Oh, my hubby wants me to push for a *mobility study *for Grace. Great the one thing I haven't looked up. Any thoughts on what it is?


----------



## Tesscorm

Sorry, no info re the motility study.  But, hoping with you that all settles once the virus clears! :ghug:


----------



## CarolinAlaska

Glad to hear your son doesn't have eos on his biopsy.  I hope it ends up being something common and easily treatable.

Sorry dear Grace is doing so poorly.  Maybe you can feed her overnight so she doesn't have to carry her bag all day at school...  Can you do a rate from 3 pm to 7 am?


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## araceli

I am so sorry your baby is not feeling well, I hope she gets better soon.
I think a mobility study is a study where they assess mobility of  muscle, bones etc. Usually done for arthritis or people who have chronic pain that prevents them to do all the things that are easy for everybody else. Also Pain assessment and management. Not sure if I am correct.


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## Farmwife

No, we have to do day feeds for 2 reasons.

1- Grace was sick at night with EEN. Even at a slow rate she was sick.
Day time feeding helped because she was moving and her track seemed to work faster.

2- Her pain is so bad, she wakes up screaming and running for mom. 
Also she's roller in bed. I got tired of the alarm.


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## Sascot

Sorry to hear Grace isn't feeling good.  Hope the pred burst helps quickly!  Sending lots of healing thoughts her way!  Never looked into motility studies so no idea there, sorry.


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## Spooky1

I'm laid up with excruciating joints at the moment.  Sitting is extremely painful.  I feel a lot like Gracie, but she's so young its sad.  Hope the Pred works soon.


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## Farmwife

Another update:

Last day of the pred burst and no change.
If anything she's a bit worse as in she put herself down for nap and still went to bed early.
Virus departing but asthma and eczema still lingering.
Constipation returning even on full EEN.

I'll be asking to increase her dose of LDN to her full strength of 2.0mg.
We'll see if that will nip this in the bud.

We might also consider leaving Grace on FULL EEN for a loooonnnnnggggg time.
The GI said in passing a few months ago this might be reality.

Every illness might bring on flares which means pred burst or tappers.
She's four and between her Egid's, colitis, asthma and eczema that all might require steroids ....well that's a lot of steroids.

Hard choices, never easy but it's about her quality of life now.

I'm off for the week-end. 
Our leaves are changing to beautiful fall colors. 
The air has the wonderful smell of apples and peaches that are being harvest.
Perfect day for some fresh air and a long drive.
 Hugs to all.:hug:


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## Kev

When I first started on LDN, if I got hit with a virus... bad cold, flu... anything like that which... strained my immune system... I would flare.  Hasn't happened for years, but if memory serves me correctly (and I don't trust it, but I 'think' I used to mention it in my posts from those early years)... after the virus would pass, and my immune system then rebound, my mini-flare would peter out.  I 'think' (but have no medical expertise of any kind to back it up) that LDN counts on the immune system to battle IBD.  Over tax it, and despite the LDN still doing its thing... and IBD symptoms would creep back up some.

Now, with time, fewer and fewer of these mini flares happen (or at least in my case). I'm hoping that with time it will be your experience also.  However, I can't guarrantee it, as you've got more than a few complications going on with your little Farm girl.  The issue with LDN is that it is slow... and considering a little girl with a big list of health issues, you may not have the luxury of waiting.  It might help if you do up her LDN dose, but I don't know... use the weight to dosage ratio they used in the pediatric study as a guide.


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## Sascot

Hope the flare does start to ease off soon.  Full dose LDN may be the way to go.
Enjoy the lovely weather - it was really warm and sunny here as well after a full week of cloud and rain. We enjoyed it!


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## DustyKat

Motility studies look at how the muscles, mucous membrane and the gut in general works when swallowing and going through the processes of digestion. They are naturally looking for a dysfunction in that process that may help explain away symptoms that are being experienced. 

Thinking of you and yours FW! 

Wow, you harvest peaches way later than us. 

Dusty. xxx


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## Farmwife

Update:

Grace is holding study but losing color and energy.
Her bladder seems to be better. I'm looking forward to what the specialist says.
We have to increase her water intake to almost as much as her amount of formula. 
So back on the pump she goes. She wants to do it. 
She's tired of drinking right now.
 Thank GOD for her G-Tube

So here's my BIG QUESTION!

 Her GP said that Grace has not grown for 3 months but before this had a big growth spurt (was during her remission). She said she's not worried yet but we have to keep an eye on it.

*When do your docs worry about their growth?*

Off for the week-end.
:ybatty:I have to unearth my sewing table to be able to sew on it.
Isn't amazing how any areas in the home meant for mom gets covered by the families junk.:tongue:


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## DanceMom

A first started seeing her GI last December.  He was very concerned with her lack of growth, even more so than her weight.  My husband and I are both very tall people, yet A was extremely short, not even on the growth chart.  It is the main reason that he continued to search for answers and not simply accept that she had IBS.  Lack of growth indicates real problems.

That being said, I think kids tend to have growth spurts and periods where their growth is a little slower.  The fact that Grace hasn't grown in 3 months wouldn't concern me, especially since she had a big growth spurt prior to that.  If she went 3 more months without growing I'd probably get a little anxious that things may not be quite right.

A has grown less than an inch since December.  I'm assuming that Prednisone and an extremely brief remission is the cause.  Sorry for having a terrible memory, but has Grace been on Prednisone recently?

And totally off topic, but I think it is really awesome that you live on a farm AND sew!  Both just seem really peaceful and totally cool.


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## Spooky1

Hi, I too would not worry about Grace's growth for the minute.  Back onto liquid feeds might just help put things into remission, then perhaps she'll have more growth once things have settled.  As for water, my friend, retired GP, suggested water with sea salt and sugar in.  I have google amounts, but I do notice its different for children.  I am trying this but in the early days using this rehydration fluid.

Bad news, doc said I can have just one loperamide (immodium) a day, and very little pain killers.  Gastro bloke says he can't do anything about the crohns in the peg track, oh dear.

but hoping Gracie gets well.  Just as well she has such a caring mum.


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