LDN and my little farm girl

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Farmwife

Farmwife

Joined
Apr 28, 2012
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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:
 
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.
 
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.
 
Kev said:
Best wishes.. fingers crossed. Dosage based on her size, as per the pediatric study?
Click to expand...


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.
 
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.
Click to expand...

My understanding is that LDN can take up to 3 months. I should check that again.:yfaint:
 
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:
 
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
 
FW, I'm glad you have found something hopeful to try for Grace. How are things the last couple days?
 
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.
 
:banana:Grace poo'ed!!!:banana: I mean she poo'ed normal!:eek: 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:
 
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!
 
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!!!!!!!!!!
 
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))
 
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
 
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.
 
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:
 
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...!)
 
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
 
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!
 
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!
 
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.
 
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
 
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.
 
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
 
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.
 
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 .
 
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:
 
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:
 
How frustrating! Hope it just goes away on it's own so you don't have to worry what it is.
 
That is frustrating!! Did they not give her anything to treat it, In case it iris ringworm :S xx
 
@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?
 
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?
 
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?
Click to expand...

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.)
 
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.
 
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.
 
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:
 
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:
Click to expand...


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

Fingers, toes and everything else crossed! :goodluck:

Dusty. :heart:
 
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.
Click to expand...


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.
 
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.
 
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:
 
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?
 
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
 
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.:eek:
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!
 
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.
 
:( 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!
 
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??
:eek: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:
 
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 :eek: (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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