LDN and my little farm girl

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Sorry to hear there are more ill effects for Grace...and Mommy! (((HUGS))) Ready for you guys to catch a break!
 
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
 
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
 
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.
 
Emily and Stephen wore uniforms throughout elementary school - the BEST thing ever, in so many ways!!! :D

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! :D

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! :)
 
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?
 
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
 
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????
 
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.
 
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.
Click to expand...

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.:(
 
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.
 
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.
 
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 .
 
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!!
 
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.
 
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:
 
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..
 
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.
Click to expand...

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
 
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.
 
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
 
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.
 
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:
 
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!
 
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! :D 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' :cry: 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! :D But, do enjoy your little ones while they are little! :heart:
 
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:
 
HAPPY BIRDTHDAY FARMWIFE! :birthday2:

Twin bottles of wine perhaps? For your mom not you! You get a twin pack of seltzer!
 
: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:
 
:lol: what about hubby? Does he get to stay? At the very least, he can uncork the bottles! :rof:
 
Fabulous FC results FW! :dance::dance::dance:

Have a fantastic birthday :D

:birthday2::bdayparty::birthday2:
 
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.
 
A GREAT BIG HAPPY BIRTHDAY TO YOU FW!!!

500_500_csupload_31495384.jpg


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

Dusty. :heart:​
 
Missed you b-day FW! Hope it was happy!

Good news for Grace...that's the best present ever!!
 
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. :cry:
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:
 
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.
 
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!!! :D
 
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...
 
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!:(
 
No word back yet about his biopsies.
Why next day results with Grace and not with my son????
Just thinking/venting/worrying out loud.
 
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.:(
 
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
 
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
 
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!
 
Glad all looks okay with the little prince! :D And, hope Grace is feeling better soon! :heart:
 
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?
 
Sorry, no info re the motility study. But, hoping with you that all settles once the virus clears! :ghug:
 
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?
 
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.
 
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.
 
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.
 
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.
 
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 :eek:....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:
 
Last edited:
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.
 
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!
 
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
 
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.:eek:
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:
 
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.
 
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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