PRED is Our Frienemy

[imaboveitall]

WOW, today V feels MUCH better, almost normal. Day 3 of a short 6 day pred course.
She walked with me a half mile or so; two days ago she could barely walk to the kitchen from her room. She says the "brain fog" has lifted.

Here's my new idea:
Maintain her on a low dose of pred, start naltrexone, STOP Humira, and wean pred as naltrexone takes over.
I just emailed The Saint; we'll see what he says to that. :thumleft:

 

[Tesscorm]

That's GREAT news! I am so glad she's beginning to feel better!

Personally, I 'think' that sounds like a great plan and, if given the choice, I would prefer to have Stephen on that plan rather than the stronger meds but... I know with Remicade, once you stop you may not be able to go back - is that the case with Humira? I'd only be afraid that by stopping the Humira now, you may not have given it a chance to work and then you may not have the option of trying it again if the LDN doesn't work???

These are such tough decisions to make!! :ymad: (... leaving the stabbing to you! ) Am curious to hear what the Saint says!

But, in any case, way to go Violet - glad she's finally up and about!:dance:

 

[Twiggy930]

Glad Violet is feeling better. Pred is definitely a frienemy.:voodoo: Hope the brain fog stays lifted.

 

[Sascot]

That's great news. Glad she is feeling better!

 

[Mom2oneboy]

Soooo glad she is feeling better!!! We're still on pred which is longer than what I wanted but what cha gonna do?

Gotta love a girl with a plan :thumleft:!!

 

[crohnsinct]

Wow! First Claire and now Violet! I love a day I can read that two of our kids are feeling so much better. GO VIOLET!

Totally get the Frienemy Feelings...we are playing love hate with it as well and after 8 weeks it is getting old.

Plan away girlfriend! Praying things continue to get better!

 

[imaboveitall]

Now I feel guilty (crohnsinct can you dig it?) I didn't use pred earlier.
Maybe could have avoided Humira altogether, and she would've felt better fast...what was I thinking...:frown:

Tess, Humira can be stopped/started with no detriment unlike Remicade.

She's made plans to go to church tomorrow night (hasn't been in months, too many stairs and long halls to walk), is talking about summer camp...*sob* and I was so against drugs I kept her sick longer than she maybe had to be...ale:

Reply from The Saint was just ecstatic that she is better, confirmation the pred is what did it and is anxious to see the next LF. No comment on my med plan.
I'll press it after the next LF (next Tues).

 

[crohnsinct]

Guilty can I dig it? LMAO! Seems that its the one thing we will all agree we do perfectly...feel guilty.

Don't beat yourself up for not trying pred sooner. Easier said than done I am sure. Although an expert at guilt I am far from a medical expert but who knows maybe timing was a critical factor here. Maybe if you tried it sooner it may not have worked. The important thing is you found your way there and she is feeling better. Celebrate that! Good luck getting your plan approved and have fun at church!

 

[Tesscorm]

Julie, you have absolutely no reason to feel guilty... but, sigh, it's what moms do way too often. You made the best decisions possible given the circumstances and options! And, as Crohnsinct said, timing may certainly have been a factor!

She's starting to feel better and you're getting her there! :thumleft:

 

[izzi'smom]

Glad to hear she is feeling better. As I am sure you've read, while the response for Humira increases between 4 and 12 weeks, it isn't a super significant response. Your doc may be concerned, though, that Pred is a short term solution. While some kiddos respond well and can taper, some are refractory like Izz and steroid dependent (the longest she has been symptom free without it is a month). Hoping that LDN is your answer!!! Hope V is enjoying her newly found energy

 

[DustyKat]

SQUEAL!!! It is so wonderful to hear that V is feeling fab Julie! anda:anda:anda:

Kudos to you hun for always being there, always questioning, always researching and always being one step ahead! :thumleft: Your plan is great.

Soooooooooooo, no feeling guilty!

Oh Julie, we all make decisions based on what is happening that very moment in time, what we know, what we have experienced, what we read, what we are advised. Remember, we are never truly alone in the decisions we make, we take a load on board and every decision we make for our children is done with a heavy heart. No decision is ever wrong, we are just taken down different paths and along the way there is many a twist and turn and change of direction. It matters not how we get to there just that we do.

Be kind to yourself hun and believe me when I say that V is one very, very lucky young lady to have you as her Mum. :heart:

Dusty. xxx

 

[imaboveitall]

Thanks, girls :kiss: But it was a stupid decision, I know enough about pred that I should've been comfortable using it. Instead I went to Humira thinking it would be a quick and sure fix. Stupid. :voodoo:

Angie, no I didn't know that! Am I understanding correctly, that the first 4 weeks post loading dose has the highest response, and therafter it isn't notable? That'd be the loading doses plus one maintenance dose.
I'd rather she maintain on pred at a low dose than use Humira. With her having no gut sx, only EIMs, it complicates everything :stinks: But I'm excited about naltrexone, since The Saint has used it and is familiar.

If the next LF is lower, then she finishes this short pred course and it starts to increase again with just Humira on board, there's the answer.
So to deem it an official fail, I guess I'll have to continue it and watch LF with/without pred.

 

[crohnsinct]

Stupid question but haven't you always said you suspected some other mystery thing might be going on with Violet? Just a thought...could the Prednisone be treating that mystery thing?

 

[imaboveitall]

Please kill me now :voodoo: and make it slow and painful.

She FEELS LIKE CRAP AGAIN.

I can't believe this. Cannot fathom what the h*** is going on.
Why would she feel great and stabilize for 24hrs and then crash again?
Just emailed The Saint. Who knows what he shall say. Prob will start thinking she is malingering because this MAKES NO SENSE.

ONLY on here will anyone understand...

crohnsinct, that is far from stupid. Even though SIX docs cleared her of anything but dysautonomia and Crohn's I still think something else is up. But I cannot think of what stone to turn over.

 

[Sascot]

Oh dear, that's a shame she is feeling bad again. Could she maybe have caught a run of the mill virus to make her get worse?
Hope she picks up again!

 

[Tesscorm]

So sorry Julie! I can't imagine how frustrating for the two of you! Even if she only went for a short walk, etc., is it possible that she overdid it yesterday and just wore herself out???

 

[crohnsinct]

CURSES! I am speechless. Hold on to that good feeling from yesterday. Maybe this will be a two steps forward one step back kinda thing. Keeping my fingers crossed for you both.

 

[Twiggy930]

Oh Julie that stinks!!!:stinks:

We have been having similar issues on prednisone. I feel that my son goes from having tons of energy to having NONE at the drop of a hat. Particularly at the beginning of taking it he had periods of time (parts of days) where he was almost euphoric and hyper and then he would CRASH. It was like someone flipped a switch. The oddest thing about these swings in energy levels was that they were unpredictable. Granted when this was happening he was on a hefty 40 mg dose. He is now down to 20 mg and he still crashes at points in the day but the swings are not as wild. I can send him to school looking good and then 2 - 3 hours later he wants to curl up and sleep and he tells me the fatigue comes on suddenly. I have been wondering if this is a product of being on pred.

I know the guilty feeling well. It is far easier to see the "right" decision with the benefit of hind sight. If there was a crystal ball that we could see the future in life would be soooooo much easier. Try not to feel guilty, you have been a tremendous advocate for your daughter and she is one lucky girl to have you in her corner.

I hope that Violet's energy levels pick up again soon.

 

[imaboveitall]

Sascot, that is exactly what SHE is saying. She's very in tune and says she feels like she has a bug...throat is scratchy, back is achy. God, I hope that's what it is.

Tess, I thought of that too. But she says it's the usual weakness, not tired per se.
Here's another weirdness: she stabilized like yesterday, once for 24 and once for 48 hrs twice before since becoming an invalid in Oct. When she started Florinef (dysauto drug) and when she started atenolol (dysauto drug). Three days after starting both of these (separate occasions ) she totally stabilized and then crashed.

Twiggy, really? That makes me feel a tad better. Maybe with pred (this is her first time on it except for ages 2-4 for asthma) this is how it rolls??

 

[imaboveitall]

Plan per the Saint:
Finish this short course, check LF every week instead of every two.

If it stays low, goes down, and she feels good, then we know this pred burst was enough.
If it goes up, etc, add NALTREXONE and up pred to 30mg for two weeks then wean.

But I'm d/c'ng Humira either way.
SWEEEET. I love him...:kiss:

 

[DustyKat]

Take the Pred at face value Julie. I know that the majority of people on here do indeed have wonderful outcomes from this drug and in doing so experience many of the side effects. It is only natural given what you read about the drug and those experiences of others that there is a degree of expectation as to how this will pan out, particularly when V appeared to respond.

On the hand there are those that don't respond as expected. I do believe they are very much in the minority. Twiggy's boy is one and there are others, Matt was another. I watched and waited for both the miracle and the side effects and it just didn't happen. He was the standard course and wean over 8 weeks and although nothing obvious happened I do think it stabilised his overall condition but that was all. He had complications and all I can think of was this must be what neutralised its effect and perhaps the other issues with V may be having a similar effect or as Twiggy has experienced with her boy, good days, bad days, good hours, bad hours.

Good heavens! I think I am rambling because I so much want this to work.

Thinking of you hun and that fab girl of yours, :ghug:
Dusty. xxx

 

[imaboveitall]

Dusty, if she'd only make sense. This is the third time now since Oct she stabilized for a day or two after starting a drug, (others were for dysauto) then reverted back.
She doesn't seem to have ANY effects as are usually reported w/pred, i.e., mood swings, increased appetite. I recall when a toddler and her (also quite Saintly) pedi pulmonologist said she'd need 3-5 days pred every asthma attack as it was the only thing that brought her out of them, he said, "she'll be a hungry, cranky baby" while on it he meant. She WASN'T. It worked great to stop the attacks but she displayed zero effects.
So maybe she metabolizes it...oddly?
The weekly LF's shall tell the story, I guess.

Thank God for you guys. Love to all for caring enough to comment, I really do appreciate it :Karl:

 

[DustyKat]

I know hun...:hug:...it is be torture for you seeing your baby struggle day after day and your hopes dashed again and again.

I hate to say it but if the Naltrexone doesn't work, I hope it does!, do you think surgery is a viable option?
Blood and faecal results aside, could the "crappy" piece of bowel be wreaking all sorts of havoc that just isn't apparent on the surface?

Dusty. xxx

 

[imaboveitall]

I am all about sx, I'd do it in a second but I know they won't. She has just that small area of bowel affected, V said during fluoroscopy with the SBFT, she could see it was like 3in only. The rest has always been clean. Her GI hates sx, he says once they start to cut they have to keep cutting and end up w/SBS.
But if she keeps this way, with only TI disease until age 18, when she'll be legally an adult, I'm hoping they'll do it then.

 

[Sascot]

That's great that the Saint is willing to give her the naltrexone, hope it helps! My docs are talking medications depending on what they find on the MRI - scary stuff.

 

[DustyKat]

I have to agree with you Julie and disagree with the doc.

I understand what he is saying and for some, hell maybe even most, that subsequent surgeries are required but that isn't always the case for everyone, particularly as treatments improve, and I personally feel his views on this are a little extreme. As you well know and have said many a time, at what point does her QOL take precedence over all else. She needs to live life and she deserves to live life.

Matt only had 10cm (4") of diseased bowel and it wreaked havoc on him and he is far from the only one on this forum that has had surgery for this amount and less.

Ah hell, I know I'm preaching to the converted hun. Just wish there was more I could do for you. :hug:

Dusty. xxx

 

[imaboveitall]

Sascot, I know, I was afraid getting the naltrexone would be a hassle. So many on here say their docs have never even heard of it. I should've known The Saint would be aware of it and hearing he's used it was way cool.

Dusty, yep, if I could bypass them and just hire a surgeon I'd do it. V wants it too. He is maybe early 60's so his views are older school; in my exp w/docs, only surgeons love surgery and the others always want to use drugs.

Aside:
Q: What's the difference between a surgeon and God?
A: God knows He isn't a surgeon

 

[DustyKat]

Bahahahaha, love it!

I know I was lucky, in the sense that when Matt saw the IBD team in Sydney, the Crohn's specialists and the colorectal surgeons were all in agreeance. That level of validation does make the dark days just a little brighter easier to navigate.

Dusty. xxx

 

[imaboveitall]

I am actually jealous of all who can have sx. *sigh* This managing it w/drugs really doesn't suit my black/white extremist brain. :frown:

 

[crohnsinct]

How is V feeling today?

 

[imaboveitall]

Aw...thanks for asking.
Better than yesterday, better than before starting the pred, but not as good as the day before yesterday when she was almost completely stabilized.
Makes no sense. None. :shifty-t:

 

[DustyKat]

:hang: Julie!

Because we had no choice with Sarah's surgery, and I can't say you or anyone here has no idea cause ya all do!, I dread to think the hours I have spent wondering about the what ifs'. What if Sarah had been diagnosed much earlier and we had been given the opportunity to go down the medication path, would her life be different, would the outcome have been different.

Hmph...bloody Crohn's...:voodoo:

Dusty. xxx

 

[Catherine]

Spoke my sarah gi about pred she is still on 25after8 weeks. Her opinion pred help quickly, givies energy but it not the normal energy very ease to overdo it on pred. Make them tired harder to recovery after exercise.

She think pred is the reason sarah hasn't been able to up her training but it also reason she was able go back to training.

What trying to say is pred is making v better but is also allowing her to over do it as well. Maybe

Glad she even a little bit better.

 

[imaboveitall]

Catherine, THAT makes sense...they get a burst of "false" energy, go at it, and then crash as they aren't *really* better, just hyped up...that would make total sense with what happened here...wow.
I bet that IS it...she had one day, after three days on, of drug induced energy...then returned to her normal... :stinks:

The GI is talking about keeping her on at 30mg for two weeks depending on the next few LFs Do you feel Sarah is benefiting from being on it long? Is she better or just has the "fake" energy?? I don't know if I'm going to do the longer course...:eek2: :voodoo:

 

[Catherine]

Sarah now has no pain. She does much more energy than when she started on pred. All she improvement has been from pred, as 8 weeks is to soon for aza to be working? She is back at school and swimming. She has come so far from a 16 year who was so sick that we believed we could not leave lone at any time.

In some ways sarah is also not classic case. Her crohn's disease is mild but because she was untreated for so long it had become chronic. She hemoglobin has risen from 90 to 115. Pred must be doing something.

Sarah also looked very sick at 44kg and 5f 8. She now looks so much better at 51kg. Her is stepping down to 20 pred tomorrow, and hopefully down 5 every week but her gi want to go back to last safe level if,pain comes back for 3 days then try again.

Here hoping pred works as well for v.

One other thing we treated sarah with iron for anemia for well over 2 years and only got worse. She now has ferritin stores, rising hemoglobin.

Hope this makes sense.

 

[imaboveitall]

Makes total sense and is a help as it makes me feel better about doing the longer course. If your Sarah went from being really ill to going back to school, from pred...that gives me some hope that it'll be worth it.
Does Sarah have any bad side effects happening from it?

 

[crohnsinct]

FWIW - Olivia was hospitalized bleeding badly, diarhea, malnourished and in horrible pain. After two transfusions and two days of Prednisone she was up and around like nothing happened to her. Bleeding stopped 5 days after being admitted. She did get her first Remi infusion 4 days after being admitted but returned to school a week after being admitted, has gained 15 pounds, and swam in her championship meet two weeks after being released from the hospital and bested all her times and hadn't done that in over a year.

9 weeks and counting and so far no bad side effects...not even moon face. She is happy as anything, has a great appetite and no problem with energy. Has returned full time to spring track and long course swim training.

The only bad thing for us is as we taper the bleeding returns (today was especially bad so she needs prednisone or we need to come up with something else that will work as well that she can be on long term. It just doesn't look like remicade is going to work alone. Her little friend from church is having the same issues...poor pumpkins

You mentioned V was hoping to get to church Wednesday...I hope she feels well enough to get there Sunday. Wishing you and her a Happy, Healthy Easter!

 

[Catherine]

Her only bad side effect is acne and that has only started in the last week. But maybe that is her body starting to work again. She hasn't period n 12 months

 

[imaboveitall]

Thanks, girls. :rosette2: That really helps me...I was so afraid to use drugs...
She stabilized again today. It was early dismissal so all her pals went out and she WENT TOO. :thumright: She's going out tonight to lasertag...I'm afraid to get excited...

If this is what pred will do for her then I'm all for it.
Humira did NOTHING. Absolutely nothing for her QOL and six days on this cheap drug and she's totally stabilized?
The Saint and I have a plan in place that includes naltrexone as I said so NO stabbing today :soledance:

And yes, chronsinct, right in time for Easter services...:rosette1:. Everyone shall be so glad to see her.

 

[Sascot]

Great news!! So nice she is able to join in with her friends. May it continue!

 

[DustyKat]

Such wonderful news Julie! Long may it continue hun.

Dusty. x:heart:x:heart:x

 

[Mom2oneboy]

Julie,

Sooooo glad V is feeling better! S is on 30mg of pred right now too. Initially, he was only going to do a week at 40mg but because he had such a bad week and we didn't start EN until Monday, so we made the decision to keep him on it We will wean down weekly now. He hasn't had any side effects except for some night sweating.

Hope you all have a wonderful Easter weekend!

 

[imaboveitall]

Hey there, Shelley, is he staying on 30mg for awhile?
V did just a dose pack but the plan is, to do LF weekly and if it rises, start 30mg/day for 2wks then taper and add naltrexone. What's your fella's plan?
And is he feeling any bad effects from the pred beyond night sweats? V is retaining fluid this week, I got a natural diuretic at the health store.

This means I get to collect poo once/wk instead of every two weeks. I know you're jealous so don't even. :stinks:

Oh and she still feels GREAT...is at the mall at the moment...I wish the neuro who called her a malingerer could see this.

 

[crohnsinct]

Wow! First laser tag and now the mall?! This is awesome!

 

[imaboveitall]

I know, I am beyond thrilled. She has plans for tomorrow and Mon too, as it is spring break here. I am excited about the plan, I can't wait to d/c Humira.
I so wish I'd tried her on pred ages ago. Maybe posting all this will help other mothers hesitant about EN or pred to try it earlier than I did. And to hear about three kids so far on here, on pred and doing well makes me feel much better. :heart:

 

[DustyKat]

May it keep on keeping on Julie! anda:anda:anda:

Onwards and Upwards!
Dusty. xxx

 

[Mom2oneboy]

Hi Julie!

The goal for Stefan is to get him off the pred. I really don't want him on it long term. He has enlarged optic nerves in his eyes which causes the pressure in his eyes to run high as it is. Pred can increase this pressure so the shorter time we are on it the better. Night sweats are the only side effect for him so far, thankfully. He's only been on it a short period of time so maybe that's why?

We are on day 6 of EN and he is experiencing less stomach pains. Yay!! His coloring has returned too. We still have blood though. Boo! He's been leaving his ng tube in and says he may just leave it in place and wear it to school. He says he's gotten used to it and it doesn't bother his throat at all. We'll see if he changes his mind come Monday. I still feel such relief that he is getting the nutrition he needs!! He's liking the idea of getting bigger too. This morning he showed me his legs and said, "Look I think that feeding stuff is already putting hair on my legs." LOL

Naltrexone is the direction I want to go in next. The first time I discussed it with the doctor he said he wasn't convinced it would work, blah, blah, blah. We agreed to discuss it more later once we got S's flare under control with pred and EN. So, I'll be bringing it up again this week with him. We will be doing LDN with or without him! I'm stubborn that way :ysmile:. I asked him if I got from someone else if he would still treat S and he said yes. I really think he will end up agreeing to it. At one point he mentioned Pentasa. Not sure about that yet.

Well good grief, I didn't mean to write a novel here. I'm really hoping V continues with the good days. Both of you deserve a break!!

 

[momoftwinboys]

Great news!..kids feeling better Thanks for sharing

 

[imaboveitall]

Thanks all!

Shelley, I know it, they cannot maintain on pred long term. That's why we have this plan in place that I hope works. I am hoping she won't even need to do any more pred and this dose pack did the trick, though I suspect not.
If the next few LFs rise and/or she starts to feel bad again the naltrexone shall be added, pred course, and Humira dropped.
I too could get naltrexone from other docs (friends back home) and certainly would if he refused though I don't want to. Thank GOD, he is familar AND has USED it on other pts.

V and Stefan will be on the same treatment, then: EN and pred, and EN and naltrexone. Sweet. We can compare notes. Oh and V did a month of Pentasa in Oct. Made her bleed rectally.

 

[Tesscorm]

I'm going to bring up the LDN with Stephen's GI this week as well... What I would like is to keep Stephen on EN and add LDN; do all the regular blood tests and add LF or calprotectin. Then I'd like to follow up with regular LF/calprotectin tests and see if there are any changes. By coincidence, he also has his follow-up MRE in about 3-4 weeks - another test that can be used as a baseline and follow-up.

I'm not sure how 'time constrained' I am though... Stephen turns 18 in July and they have already mentioned that we need to start thinking to which adult facility we would like to be transferred... Not sure if this will impact GI's decision re the LDN.

We'll see next week.

But, so glad to hear everyone seems to be doing well!!!

 

[crohnsinct]

Haha! We also have a follow up GI appointment on Thursday and suspect that he is going to say we need to find something else to support the Remicade as it isn't working 100% on its own. I am going to ask about LDN and EN as well!

Happy Easter and Passover everyone!

 

[imaboveitall]

Hey Tess. Then your Stephen, Stefan, and old Violet would all be on EN and naltrexone. And maybe O too.
This makes me feel oddly good. Less alone. :smile: Plus I think (obviously) it is the best and safest plan so it makes me happy to see others doing it.

Tess, the beauty of LF (and I assume calprotectin is the same deal) is, you drop off the specimen (a perk right there oo and within hours you have an "accurate, sensitive and specific to gut inflammation" (The Sant) result. More specific than CRP/ESR for sure, and God knows he sure relies heavily upon it to dictate V's treatment plan.

V went to church today, helped with the Easter egg hunt for the little kids afterward, and has plans to go to Youth Group Wed night and sleep there at a lock in! (I let her skip nights on the pump for sleepovers etc, no oftener than once every two weeks).
I feel more optimistic than I have in awhile.

Poo to the lab tomorrow so a thrill for me in the a.m. when I get to see the Great Coral Reef's uglier twin. :hallo3:

 

[Catherine]

So glad to hear v still feeling great.

 

[crohnsinct]

"Tess, the beauty of LF (and I assume calprotectin is the same deal) is, you drop off the specimen (a perk right there oo and within hours you have an "accurate, sensitive and specific to gut inflammation" (The Sant) result."

I think you meant to say the beauty of LF is you get to play in the toilet with all your little toys...right?!

Uh oh...I feel a bad sore throat coming on...maybe I pushed it too soon...maybe I should run to the doc first thing tomorrow morning to be swabbed for the flu...don't want to be a negligent mother again. :shifty-t:

 

[imaboveitall]

crohnsinct, I know one always comes up with great comebacks AFTER the moment has passed but ONE time it went like this:

Nurse (to me): Does Violet use a seatbelt in the car?

Me: Not when I'm so drunk I need her to steer

I'm trying to come up with a good one for you when they call you negligent...

Poo play RULES :thumleft:

 

[crohnsinct]

LMAO!

O.K. so now seriously not going to take care of myself tomorrow because on top of three kids, a husband and two dogs I have just discovered a family of mice is living in my house and now I get to clean their poop up all day!

 

[izzi'smom]

LOL at drunk and needing her to steer. Sadly, they are required to ask as some parents are clueless.
Mice! UGH! I had one (or I keep telling myself it was only one) a few weeks ago. I bought as many traps as I could carry...came home the next day to find he had trapped himself...alive...in my empty garbage can. GAH!
I still am wondering why no one uses a hat instead of a spoon...?

 

[crohnsinct]

Ah! We are hat girls here in CT. Maybe it's a northern thing.

We have traps all over the house and the darn things just poop right next to the traps as if to mock and say, "yeah we see your darn traps and are to smart for that..we have moved in to stay". I wouldn't mind all creatures great and small and all but could they clean up after themselves?

BTW - just caught up on some threads and see all you and Izzi are going through and want you to know you are in our prayers.

 

[imaboveitall]

Hey Angie, the "hat" (who came up with that name for it) goes in the toilet, the Coral Reef is deposited therein, and then the fun begins.
In the past I had no hat and used a paper plate held under her...that was nice...:frown:

 

[Tesscorm]

OMG, you all make me laugh!! :rof: a paper plate?!?!?!


Re mousetraps - a new great use!... We also once had a mouse in our house! And also bought a bunch of traps. The traps we purchased were small rectangular trays (about the size of a Blackberry) filled with a very sticky substance (which the mouse sticks to when he steps in it). Anyway, at the time, we put these all over the house, once we caught the mouse, we forgot to remove some of these traps. Months later, I found them behind a couch, etc. with lots of ugly, disgusting bugs (I HATE bugs!!!!) stuck on them. GOLD MINE!! :devil: Since then, I keep tons of these traps around the house (under couches and beds, behind curtains, under shelves in mudroom, on the floor near Stephen's hockey bag, pretty much anywhere I think I can snag a few ugly bugs! :biggrin: When Emily had the rash last year, bed bugs were in all the headlines - threw some extra traps in her room! :yfaint: I just replace them every few months...

 

[imaboveitall]

Now THAT is sweet. V has a bug phobia. She'd love that.
Last year we went to DC on vacation for a week and rented a nice house right in the heart of the city, walking distance to Smithsonian, really lovely.
I started noticing small red dots on my legs after the third day...itched like crazy...I was baffled, and miserable. They REALLY itched...then on my torso...they were from BEDBUGS. I didn't realize this until we got home and after another week they were still there so I had them looked at, I was afraid I had scabies.
No one else got them, somehow they were just in MY bed...this place was not cheap to rent! How could I prove I got them there after the fact?
Horrible experience.


Yes, a Disney Princess paper plate in fact. This was at dx before I developed the necessary skills.

 

[Tesscorm]

ohhhh, I am an absolutely disaster in the summer when there are bees/wasps flying around! :lol: You know, I see other people continuing their conversations, casually waving their hands to 'push' away bees and I'm friggin' sweating, beginning to hyperventilate while I'm really, really trying NOT to jump out of my seat and sprint a 100 yards! The sprint wins 95% of the time! Then I get to watch my husband and kids roll their eyes at me and begin to make excuses for my odd behaviour! :lol:

 

[imaboveitall]

V's is to a phobic state and with good reason. We tallied up her insect attack experiences and there were like...ten? Including a bee swarm and stepping in a fire ant hill. They seek her out, truly. She says she cannot help the panic that ensues when one comes near. And she isn't "like" that, she is a levelheaded, quiet, unemotional reserved sort.

 

[Tesscorm]

Ah, see, therein lies my problem... I have the panic but not the reason! :yrolleyes: I think I 'may' have been stung once!!! And I say 'may' because a bee landed on me and then it hurt a bit - but, I believe my reflexes have become so fine tuned that I can swat faster than they can sting! :rof: Of course, this is not a pretty picture in action! :ytongue:

Poor Violet, I think I would have been traumatized for life if I'd been attacked by a bee swarm! :yfaint:

 

[izzi'smom]

I am loling thinkingabout tess racing around swatting...I let them land on me. Glue traps for bugs...brilliant! I have. Never used them for mice.
Julie, thank you for explaining. Those of us with kids with chronic d just pour out of the hat...I thought you were fishing in the bowl lol! I thought you *really* enjoyed being the pp.

 

[imaboveitall]

Angie, right, diarrhea...no wonder you were like ??? :ylol:
V's is more like the Loch Ness monster lying there. :yfaint:

 

[crohnsinct]

So at my Monday check in reported that O is having more BM's and we are seeing a slight increase of blood and today mucous. Instructions from doc were to hold at 1ml (practically nothing) of Prednisone and when he sees us Thursday he will give us a further plan. I am guessing we are done with Prednisone because if we weren't the instructions would be to either stop or increase. Wonder what his plan is...wonder if I should tell him my plan and see if he is as saintly as V's doc.....

At this point he will be looking at blood tests from 3/15...wonder how accurate those are at this point...

Wonder when I am going to start catching some mice...totally phobic and keep finding their poop and also wondering when I am going to come face to face with one....

 

[imaboveitall]

Interesting, he must have something else in mind if he isn't upping the pred...I'll be listening to hear how he reacts to your idea. I was talking about naltrexone to phys pals and they think it is unsound, unproven etc...I figure it cannot hurt to try it anyway. I don't have the huge faith in it some have, but I'm going to see what it does.

 

[crohnsinct]

Yeah that was my thought exactly. I am betting he suggests azathioprine as that was mentioned in the hospital as a possibility should the Remicade not totally work on its own. I am mentioning both EN and LDN because from what I have heard, they both could be as successful at reducing inflammation as prednisone and like you say can't hurt.

His nurse did tell me today that he is a top down doc and that the reason he goes top down is that he says the quicker you can get a patient into remission the less likely they will need surgery down the road (so doesn't seem likely he will like my plan). I thought that was interesting and would be curious to see a comparison of surgery needs in other countries that usually go bottom up.

 

[Catherine]

Crohnsinct, Sarah is currently taking asathioprine and pred. Our GI plan is to get Sarah is remission, and step down to med to a couple of years.

 

[imaboveitall]

Catherine, have you thought about naltrexone? That's where V is headed.

 

[crohnsinct]

We would be adding Azathioprine to the Remicade which I think is what scares most people because the risks of that cancer get so much higher when combined. I am trying to just concentrate on the absolute risks which are like 6 in 10,000...Heck..her risk of drowning is 1 in 1000 and I let her get in a pool everyday:shifty-t:

Not to mention unmanaged disease is probably even more risky.

So her new trick is mucus in the stool. Anyone have any ideas as to what that means?

 

[izzi'smom]

No idea...we've had it all...blood, mucous, every consistency imaginable (I truly know what currant jelly means now) but I neer bothered to ask lol!

 

[Catherine]

I will look naltrexone up. Our GI is still working on a plan that Sarah is in the 15% - 20% of crohn's patient who only ever have one attack.

This is a reason why the plan is currenting to get into remission of 12+ months and go of all meds sometime in the future. Her level of disease has never match her symptoms.

Her current treatment plan is matched to her symptoms at dx not her level of disease.

 

[imaboveitall]

crohnsinct, mucus is from inflammation of the mucosal lining of the intestine, it secretes more when inflamed, that's all. Why not try formula feeds before adding azathioprine? Harmless and it may help do what Remicade cannot.

Catherine, that's The Saint's plan. He said 12 mo symptom free and he'll take her off drugs. V's level of disease also has never matched symptoms. We treated according to symptom level for 3.5 years, knowing disease was brewing. As soon as symptoms worsened, we added drugs. Had we been treating to level of disease she'd have been on drugs from the jump.
See the Low Dose Naltrexone thread KIm started.

 

[crohnsinct]

Yes, I am going to ask about both EN and LDN at the appointment...I just think adding aza is going to be his suggestion. I shouldn't do this but I am already getting myself set for a let down...silly! I should go in with a positive attitude that he will be totally open to trying other things...How do I know he only wants aza? Maybe because he already said in the hospital that would be the next step. UGH! I could make myself crazy putting the cart before the horse. Oh well, it takes my mind off the awful mice!

 

[imaboveitall]

The naltrexone thing feels weird to me too, I feel like he may think I'm an idiot for asking to do it and drop Humira. My doc pals for over 20+ years think I am and have no prob telling me so. They've been saying she needed to be on pred for ...years.
She finally was put on it and guess what... RESOLUTION...so now they are like, "not to be obnoxious but we TOLD you so...".

Now the EN is HARMLESS so you won't look like a fool asking for it. It has a great rep and PROVEN benefit. Naltrexone is still like snake oil to some. But The Saint HAS used it (along with three other obscure things he listed) but had poor results he said. :frown:

 

[Jenn]

I think the top-down thinking really started with kids, it's so important to control the disease before/during puberty to maintain their growth. They are now advocating it for adult patients as they see the need for surgery gets delayed as long as possible. It is a risk, but everything is. It's all relative, of course. absolutely, untreated is riskier long-term. It's fabulous they've engineered these drugs, but scary too. I really wish there were easier ways, but dealing with the immune system is a tricky business, it's so fundamental. EN and LDN sound very hopeful to me. Good to keep questioning and getting educated, because we have to make these life choices for our kids and it's heart wrenching. <hugs>

Alex had a lot of mucus output as a baby, which I find interesting now that he's diagnosed with Crohn's. He doesn't now. I get it when I eat too much whole-grain wheat, but am not celiac/gluten intolerant.

 

[imaboveitall]

Jenn, I know, there's just NO easy way with this...:mad2: I can't feel good about any of the treatments except the formula.

 

[Catherine]

My Sarah at 16 years is considered an adult patient because first see GI after 16th birthday.

So I don't what the treatment plans would have been for children.

 

[Tesscorm]

So, no news on LDN for Stephen...

Had our apptmt with the GI today but LDN conversation went nowhere... unfortunately, regular GI was called away and we met with a new GI (Izzi'smom / Angie... definitely GI boyfriend material, very nice man and with a French accent ) and then we were told we would only have one more follow-up at their clinic before Stephen is moved to an adult clinic. Had pretty much expected that 'timing' might be an issue. Oh well, we'll see with the next GI... (both Stephen and I are really sorry that we have to transfer... )

Other than that, all seemed to be well - I'll get blood results in a couple of days. BUT, I got a bit of a chuckle/compliment during the apptmt, I...

- asked about LDN - he wasn't aware of it's use for Crohns, so I told him about the studies, Dr's name, where the study was conducted, etc.

- mentioned the tests for inflammation and then asked about Calprotectin - said it's not usually approved here (Ontario? Canada?) unless for special situations. Said their clinic is in the process of requesting approval for regular testing.

- then asked about LF - same thing re the approval...

He then asked if I was involved in some sort of related field, what did I do? :rof: :ylol2: I told him I'm just a mom!

 

[imaboveitall]

I get that too, Tess, as I am now a housewife though I worked for years as a genetics counselor, I always put "housewife" on the paperwork as that is the truth so they are prob not expecting me to have any knowledge and get the raised eyebrow when I start spouting med terms.

Maybe his new adult GI will be down with naltrexone. At least he is doing well and you don't have any stress/time factor. He could continue for years on just formula like old V did.
I am surprised how The Saint is so in love with lactoferrin and even the ped used it way back in the day at dx and some docs don't at all. Interesting.
Sent a specimen Mon and am awaiting quantitative result; I already got email saying it was pos.

 

[Tesscorm]

No, I'm not in any rush re the LDN. I wasn't sure how quickly they transferred patients at the 18 year old mark so had thought, either we have to try the LDN right away OR will have to wait until things settle at new clinic... but, as you said, medically, there isn't a rush to try something new.

Glad V's test is positive (assuming you mean 'pos' in a good way! Not 'elevated/positive' results! ).

Was surprised that both the doctor and nurse were surprised that Stephen has been following the EN regimen??? But the nurse said many patients slack off the 5 nights per week as time goes on! Considering that all their patients are children, I can't imagine that parents begin to slack off on their treatment! There hasn't been one week since Stephen began that he's missed the 5 night feed!

Hope the transition to the new clinic is smooth. The staff at the children's hospital have been wonderful - will certainly miss their patience and support. But, I expect it'll be fine. We're transferring to a well respected hospital in Toronto with a large IBD clinic and our children's hospital transfers most of their patients to this hospital when they reach 18. Coincidentally, it's the hospital where I had my kids

 

[imaboveitall]

Pos in med term means an affirmative result, i.e., what you are looking for is present.
So I meant, pos LF means LF is there. So that is a negative thing. Normal LF is 0-7. :voodoo:
I got to stab...I was worrying V would do so well I'd never get to stab again
:voodoo::voodoo:

 

[QueenGothel]

I hope the LDN really works for her. Take care.

 

[Catherine]

You probably already found this report.

http://www.virtualmedicalcentre.com...reduces-inflammation-in-crohns-patients/16271

 

[imaboveitall]

Thanks, Catherine, I hadn't seen it.
It seems the pts in the study were evaluated for response based upon colonoscopy. V's scopes are always clean. So does this mean it's only effective against colonic disease? I wonder what effect it has on pts with ileal disease...anyone know?

 

[Catherine]

The only other thing I have found is that it may stop the pain meds from working???

I see what I can find tonight.

 

[izzi'smom]

@Tess- OOOh, boyfriend material?? *swoon* I haven't been to Wonderland in a decade...maybe it's time for a visit!
*Just* a mom, huh?? :rof::rof::rof: Such an umbrella term for moms to begin with, but our IBD kids double the list of capabilities.
Stinks that he needs to transfer but hope that it goes smoothly and that the new GI is on board with ldn.
@J, has V been negative? I know you said she is doing well on Pred...did she finish her course? It quit working for us but was a relief while it was working...love to hate that drug!! Hope she's still doing fantastic!

 

[imaboveitall]

The weirdness continues

LF before Humira 3600
LF after loading doses 105
LF after 1st maintenance dose 162
Next 338
Feeling like CRAP the whole time, mind you.

Did six days pred and feels GREAT. STILL feels GREAT after six days off it.

Today's LF : 679

What in the effing F?

Pred must have corrected something else. Or else she feels better when inflammation is higher. KIll me now...oooh wait, STABBY...:voodoo::voodoo::voodoo:

Angie, yep, scoped every year and always normal both gross/histo.

 

[Tesscorm]

OMG, Julie, you must be so frustrated! :angry-banghead:

No doubt you and The Saint are looking but, has anything else changed in her blood results that may indicate what exactly the pred fixed?

Its so great that she's finally feeling better but I know you want to know what triggered the 'feeling good' and what isn't fixing the LF???!!!!

I know she has no GI symptoms but do you suppose an exclusive period of EN might settle the intestinal inflammation? But, poor thing, is just starting to feel better - would be so disappointing to have to take on a new challenge so soon! :ymad:

 

[imaboveitall]

Tess, honestly I am so glad she is living her popular girl's perfect life again that I don't want to mess with any of it any more unless she starts feeling bad again. Unreasonable I know. :voodoo: Stabby love...:voodoo:
Plus as you guys know The Saint seems to think food makes no difference, but I could try it and have considered it. She won't be on board though as she eats like a teamster and now is always out w/pals eating etc.

My doc pals say LF is invalid in her case and not reflective of what's really going on. The Saint loves it and the guys saying that aren't GI men so I dunno. He hasn't talked of doing any bloods before her f/u June 4.

He emailed me to say the usual course in a case like this at this stage would be to up Humira or add another drug. hahaha yeah right :ylol2:
He knows there's no way and I already emailed him back and said I am d/c Humira, adding nothing else unless it is naltrexone and sticking w/pred either in short bursts as needed or a longer course. He already gave me a month's supply w/refills to have in case.

Weirdest s*** ever.

 

[Jenn]

Sorry to see the increased LF for V. Seems like we always go by both bloodwork and general well-being. Wiki says about pred:
"Additional short-term side-effects can include insomnia, euphoria and, rarely, mania "

 

[imaboveitall]

Jenn, V is so weird that she reacts paradoxically to pred.
Appetite goes DOWN
Sleeps 12hrs instead of 8
No mood changes

This was the case when she took it as a 2 y/o for asthma and was the case again this month.
Again I say WhatintheEffingF ?

 

[Catherine]

Have you looked at hemoglobin level, this is what has gone up with Sarah. She hemoglobin moved from 90 to 115.

Comments appear on the bloods the week before the big increase says the results looked like she had a blood transfusion or was supplementing.

She iron studies except ferritin which have increase, have got worse.

She is so much better.

 

[imaboveitall]

No bloods until June 4 at f/u. Just weekly LF.
I'm starting to think he has a weird fetish attached to this test :shifty:

 

[DustyKat]

Matt never had the classic response to Pred either Julie. He had not one side effect when he took it orally. The only exception was when he received IV hydrocortisone for the second time in two weeks...an increase in appetite and a ever so slight moon face.

Dusty. xxx

 

[imaboveitall]

Dusty, no side effects would be less weird than paradoxic effect...I can't believe her HUGE appetite VANISHED (she barely ate) for the week on pred...and I had to wake her up at 9a when she usually gets up herself without an alarm by 6-7.
It just makes me think again and still that she is harboring some obscure thing.

BUT...as long as she is living life well, I DON'T CARE anymore.
Yes, bad mommy. :hallo3:

(My neighbor w/CD for twenty years plus tells me she used pred for ages and ages and it went like V's did...like flipping a switch and she lived her life like she had no disease. Old school way).

 

[willsmom]

Hey there imaboveitall,

Sorry to hear V’s still struggling on Humira.

Although my son Will had a classic response to predisone, he struggled on Humira. He went to weekly shots and then back on prednisone while still taking the Humira shots for about 8 weeks.

Once off pred, his levels were good and primary symptoms disappeared but he never felt well after 5 months of treatment.

He has since moved to Remicade and we are finally starting to see the old boy coming back to us (slowly but surely) and he hasnt’ been back on prednisone.

I don’t know why, but for some reason Remicade at standard dose is working better for him than Humira at highest dose.

 

[imaboveitall]

Heya, Willsmom, :bigwave: how did the masto investigation go?
The new plan is:
Two LFs and now calprotectin two weeks apart for a baseline after clearing Humira (last shot was Apr 6)
Then start NALTREXONE.

Even though I am starting to think The Saint has an odd fixation with stool tests as no one else's doc seems to rely so heavily upon LF, he is indeed still A Saint because he gave V naltrexone as soon as I asked for it :biggrin:

I know some on here have had issues getting it and I so hope any who want it do get it.
God, I hope it works...I'll post about it in Kim's LDN thread once she starts on it so we can try to keep the LDN posts together. :soledance: