# The Little Farm Girl and onto Remicade



## Farmwife

I never thought I would have to type this but here goes.

Onto Remicade.

The infusion office called and Monday is the day.
She will have Tylenol and Benadryl before and labs done.
The nice nurse said they want to keep grace most of the day
I know this is to watch for a reaction but it still a shock.


So I'm dancing between anticipation of this drug working and 
shear fear of the rare side effects, allergic reactions and or that this drug will fail also.

My darling angle is so scared, so very scared of the IV and there's no calming her.
I told dad to empty the bank because its going to take a large bribe to deal with this one.:yfaint:


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## Jmrogers4

Good luck, I hope it works wonders for her.  No advice on the IV.


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## Maya142

I hope it's her miracle! I'm guessing you've tried Emla and small needles? The nurse also uses heat packs on M's arms to make her veins easier to stick.
:goodluck: Bribery is always the answer


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## my little penguin

Good luck
The first couple infusions take most of the day regardless because the rate is so slow .
Distraction distraction distraction
Head phones with ipad new movie playing ..


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## Brian'sMom

For young ones the Buzzy Bee helps with IV's. I also liked when they did below the inside of the elbow instead of the hand... And I always would ask, "Who is the best at putting in an IV?" Some would say, "I am" and some would excuse themselves!!  But in an infusion center, that's all they do all day. So they are usually all good in those places. She's used to Humira that burns like none other... Maybe she'll be pleasantly surprised that the IV is better? Hope so. Just a heads up; when they collect blood samples before hooking up sometimes we'd see blood. That was scary when my son was little. So we'd be doing the buzzy bee and looking in an Eye Spy book. Distraction!!


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## Sascot

Poor girl, and poor mom trying to console her. I hope the nurses are super nice there and can put her at ease. Good luck for the Remicade, really hoping it works great!


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## Pilgrim

I hope the day goes smoothly for you, and Remicade works wonders for her. Our prayers are with you both for the day!


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## Momtotwo

Does your hospital have a child life specialist who can help with the IV? That is stressful for both of you. Hope all goes well for your little girl.


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## araceli

Hopefully remicade is the answer and your girl feels better soon. Make sure to take a book or something you can do to distract yourself when she sleeps, snacks and drinks for both. Sending Hugs.


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## my little penguin

Oh ask for child life sometimes blowing bubbles etc .. Works


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## Tesscorm

Good luck!  I hope it goes smoothly!! :ghug:


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## Farmwife

Thanks everyone. 

*how much Remicade does your child receive?*

I thought the nurse said 125mg or 150mg. Does that seems right?


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## Maya142

Remicade is usually mg/kg. So divide the amount by Grace's weight in kg. Most doctors start at 5mg/kg. Some doctors will start a bit higher (M started at 6mg/kg).


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## Farmwife

Stupid question BUT is the remicade mixed with a certain type of fluid?


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## Maya142

Saline I think? But not sure. Why?


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## Farmwife

The Rheumy nurse said it will be a 100ml (milliliters). 

Maya I just didn't want to faint when I saw the size of the bags.


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## Maya142

:lol: Honestly Remicade, in some ways, is easier than Humira since the nurses deal with everything! Try not to worry too much, sending hugs!


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## Tesscorm

:lol:  Never even thought about it that way, ie size of bag.  

But S gets 5 mg/kg too.


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## my little penguin

Also they flush with saline after .


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## JenniferJuniper

The bag was larger than I first expected so it must be mixed with saline - it was infused very slowly at the beginning then they increased the speed the longer he sat there.  I think it was slow the first 2 hours then faster the last hour.

My son was hysterical for his first IV but the "freezy spray" and distraction worked so well that by the time his first infusion rolled around (3rd iv ever) he was totally calm and still.  He puts on headphones and watches a movie and can't even tell when they are doing it.


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## Farmwife

Can you use the bathroom? Can you walk around with the IV tower?


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## Maya142

Yes, at our Children's Hospital kids take the IV pole to the bathroom. At one of the other hospitals we went to, the nurses would disconnect you from the IV if you wanted to go the bathroom which was nice!


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## Brian'sMom

At an infusion room they make your kid feel special. Bringing in movie lists to pick a movie. Or the Wii... or XBox... or even an Ipad! And then the menu comes. My son orders something even if he just had lunch. On our Menu there is a large selection. Last time he had just had lunch so he ordered 2 oranges, chips, and breadsticks. The nurse was like, "Coming right up!" Grace will do good. And 100ml is a small amount. The Vedo is mixed also with liquid and its 300ml. The bag is little. Don't worry too much. After doing Humira, you and Grace will Love the change. In our house, Shots were not a fun night.


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## DanceMom

A doesn't mind her infusions and swears it is better than the Mtx injections.  If Grace has been doing Humira this should be a breeze for her.

We weren't offered a menu, but I bring snacks or hubby runs downstairs to the cafeteria.  A says "hunger" is her side effect, lol.  She brings her computer or tablet and last time we brought Uno.  We take silly selfies and send funny texts to people.  We find ways to pass the time.  She unhooks her own IV pole and will dance in the doorway (it is mostly glass) to entertain anyone who will look at her.  She is in no way tied down or restricted, lol.

One thing to keep in mind....you and Grace may see some very sick kids at the infusion center.  Before going A and I had a chat about what to expect (bald kids, kids in wheelchairs, etc.).  I didn't want her to be shocked or concerned that she may experience the same thing.  I let her know that kids come there for different reasons and receive different treatments.  Didn't want to worry her needlessly.


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## my little penguin

Our place reclining chair that is stuck in one place .
Bathroom - they unhook you.
Tv monitor at each chair to watch movies.
Rockers for the parents .
Not sure on the food since DS had food allergies at the time so we brought our own snacks.
Be sure not to bring anything too messy ( Cheetos ) big no. No 
Cheese everywhere just saying


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## Brian'sMom

I forgot to add this! Have her wear comfy clothes. Whatever you have on you'll have on the whole 3 hours!! Once Brian wore a hoodie. He forgot to take it off before they put in the IV and so he had to wear it!!


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## Emily's mom

Hi Farmwife!

For my little girl the worst part is the needle to connect the IV. As soon as it's in the crying stops. We have her infusions done in a hospital. They have a child life specialist and the peds nurses are so nice. Peds procedure area has so many activities for the children. As long as everything goes smoothly I bet your daughter will find it kind of fun and not so bad.

The Remicade bag is about the size of a saline drip. Once you get to the facility the pharmacy department will mix her batch. I think Remicade is powder form that is mixed with saline. 

I hope this drug works wonders for your daughter. I know she has been through so much. Bless her little heart! My daughters ulcers were 95% healed after her third infusion. October will make #5 for her. The gastro was highly pleased and so were her father and I!

Keep us posted! Monday we'll be thinking about y'all! 

~j


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## CrohnsKidMom

I hope Remicade works wonders for Grace.  She has been through a lot.  Keep us posted!


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## kimmidwife

FW,
 I am praying that remicade is her miracle!  I also second the reccomendations to get her a buzzy bee. People swear by them. Also what helped Caitlyn is the nurse tells her to blow out the birthday candles. She takes a deep breathe and blows out at the same time they stick in the needle. Cailtyn says it really helps her. Good luck and keep us posted!


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## araceli

Remicade comes in a power form so it has to be reconstitute with sterile water and sodium chloride just before infusion. I believe is in a 250 ml bag, smaller than the saline bag. She will have blood draw before infusion, then a saline IV and then it will start with remicade infusion. I believe it starts at 5 or 10 for some time and increase little by little to 20, 40 etc. Most likely she will have a blood pressure arm cuff to monitor every 15 min. or so. We used to be in a closed room so we did not see any of the other kids. Now is a reclining chair but it has curtains that we can close. She has to be tested for TB prior to infusion day.


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## Max's Mom

Max was on Remicade for a year and a half ,before it stopped working.Way less pain than Humira.The Emla works great.His stomachaches went away the day after the first treatment,it was fantastic.My son loves hospital food,what does that say about my cooking?They let him order whenever and however much he wanted.Definately,ask for a more experienced nurse to do the IV.We had some bad ones,and I wish I would have spoken up sooner about that.And,after a while they get used to getting IVs.Bring some good movies.He was able to bring the IV pole to the bathroom.Good luck with everything.


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## Farmwife

Thanks everyone.


grace still having bladder issues and are getting worse ywow:30-40 trips a day). Now she has to push to urinate. 

Still no pain, color or smell when urinating.

has this happened to your kids?


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## Pilgrim

Did you mention if she has been looked at for the bladder issues? That sounds truly awful. Poor little sweet kid.

H has frequent bladder infections, but nothing so bad as 40 trips a day. There is a drug called Pyridine (If I remember correctly) that can help the bladder stop spasms while you are waiting for antibiotics to kick in - if it is a bladder infection. It is quite a relief.


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## Maya142

M has been having bladder issues recently...always has to pee. She just mentioned it to me last night and I couldn't help but think of Grace. She has no other issues - no pain or burning (but peeing feels "weird sometimes"). She's definitely not going 40 times a day though.


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## polly13

Hi farmwife hope remicade works for grace.  The infusion takes a while so bring books tablet etc to keep her occupied.  Lucy was able to walk around during the infusion which was good.  Bring a book for yourself too! Grace shouldn't have any problems with the needle she is used to getting a humira shot which is really painful so I reckon she she won't even flinch for the Iv.  Good luck


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## Farmwife

The doc as upped her prednisone and wants a 12 hr catch. I'm to call tonight with the update and then it will be decided if she needs to go to the hospital.

So  I will be spend the day at home catching urine. how fun.:lol:


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## Sascot

Poor thing. Hope they can do something to help, must be so frustrating having to go so often. Good luck for the Remicade on Monday.


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## Jmrogers4

We were told optimal dosage 5-10ml/kg, jack started on the 5ml/kg and didn't make it the full 8 weeks at that dosage so they upped it and went to 8 weeks and we are nearly there just very minor symptoms starting at week 7 so we'll be doing the 10ml next time. He started at 20 ml in January went to 400 and next time we'll be doing 500ml. Ours starts at a rate of 10 and they bump it every 15 minutes until we get to full speed but the first few times it was a lot slower. 
Hope it really works wonders for her.


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## kimmidwife

Thinking of Grace tonight and hoping things settle down for her. Bladder issues are not fun!


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## Farmwife

:yfrown: Princess Prednisone Mood rages have started.:yfaint:
I caught her throwing a folding chair because......it was stuck of course.:ylol:

good news is the joint pain has eased but no help for the bladder yet.


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## Farmwife

:soledance:
All done.
She did good and was brave getting her IV.:biggrin: 

but...............................

The nurse turn her pump of remicade up and her lower back started to hurt....a lot.:ywow:
 Next thing I know 3 nurses were around grace turning off her pump, 
holding her hand and asking her if she's ok but grace wasn't answering  ( I stopped breathing at this point). 
About 5 minutes later she was back to talking and smiling.:yfaint:
So they started her again at a lower rate and kept it there.
Only the last 5 minutes did they pump it back up and this time no reaction.
The nurses were great and the senior nurse said back pain isn't a normal sign of an allergic reaction to this medicine.

have you ever heard of this type of reaction to Remicade? 

Also her blood pressure was dropping before this time but went up after this episode.

So now we wait to see if its made a difference.:hug:


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## Jmrogers4

Praying it works and the next dose is easy and no issues


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## Brian'sMom

Did they premedicate with benedryl? My son's blood pressure drops dramatically with that, especially if its IV benedryl.


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## Maya142

I hope the next dose goes more smoothly! Silly question but this back pain is different from her regular back pain that she sometimes has right?


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## my little penguin

Never had that happen but DS did have two reactions.
Remicade normally causes the bp to drop as far as i know
Dropping bp can be a sign of anaphalaxis as well.


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## Pilgrim

How is her bladder?


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## Farmwife

Brian'sMom said:


> Did they premedicate with benedryl? My son's blood pressure drops dramatically with that, especially if its IV benedryl.


Yes they did. It was an oral dose. Thats good to know about the bp.

Thanks


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## Farmwife

Maya142 said:


> I hope the next dose goes more smoothly! Silly question but this back pain is different from her regular back pain that she sometimes has right?


Maya this was more sharp and above the hips. It went completely away once they lowed the dose. however I thought maybe she was to long in sitting but she had been up and down to the bathroom countless times.


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## Farmwife

my little penguin said:


> Never had that happen but DS did have two reactions.
> Remicade normally causes the bp to drop as far as i know
> Dropping bp can be a sign of anaphalaxis as well.


Well between the back and bp issues the nurses sure took it seriously.


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## Farmwife

Pilgrim said:


> How is her bladder?



I called the Urologist when we got home and we have an appointment next month. 

They also put grace on a med called Ditropan, anyone heard of the drug? 

She went at least 15 during remicade. The nurse put her next to the bathroom. :thumleft:

:ymad:Someone tell me how in Sam hill do I put multiple quotes in one post.:ymad:


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## momoftwinboys

Sorry things did not go smoothly. I think we were in parallel universes yesterday. H had his infusion yesterday and also experienced low back pain. It came on quickly and in a small area. They gave him a heat pack since they thought it was cramping related to sitting too long. The pain got worse. Dr said it could be a side effect rather than reaction. If I understood correctly, side effect is when body is not liking the medicine, reaction is when body is rejecting the medicine.  Apparently it is a rare side effect that they both experienced yesterday. 
They stopped the infusion. Gave Iv benedryl. When pain subsided, they started infusion back up again, with no issues. 
The infusion nurses suggested to contact his dr and discuss what occurred. H mentioned he had back pain last time but not as bad as this time. He did not mention it before. 
Hope the remicade works well for her.


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## Sascot

Really hope it works well! Well done to Grace for being a brave girl :thumright:


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## araceli

Back and joint pain is a side effect of remicade but I never heard it happens during infusion. I really hope is because of the chair or the position they were and not because infusion. Usually my daughter's BP drops during infusion specially when they increase the speed of IV. From what I have been told by nurse is that is not supposed to drop more than 20 points from the BP start point. When BP drops my daughter starts moving, eating or play games on the computer and it goes up, if not, they lower the speed rate of infusion. Hopefully next time is better. Sending Hugs.


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## Farmwife

:smile:Sorry I didn't mean to make it sound like we had a bad time.
Except for that little bump we had a good time.:hug:
They spoiled my dd and were all very sweet and
 even took extra time with me to explain step by step what was happening.


Now onto the good news, half the bathroom trips today. 
She still went pee about 15-20 times but hey that's better than 40-50.
I haven't given the new bladder med because I want to see if it will go away on its own.
I wonder could one treatment make a difference already.

:yfaint: the joint pain is still bad and now allergies kick in, she's starting to itch. I hate allergy season.:ymad:

That's good to know that back pain could be a sign of a side effect.

Momoftwinboys, why do our kids have to be the rare side effects. 
We really should play they lotto together.:lol2:


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## Brian'sMom

My son showed positive signs within 48 hours when it came to cramps.(Way back when-- when things were simpler) Are they worried about giving her Remicade if she has a bladder infection? Did I miss that she doesn't have an infection? Sorry if I did.


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## Farmwife

Brian'sMom said:


> My son showed positive signs within 48 hours when it came to cramps.(Way back when-- when things were simpler) Are they worried about giving her Remicade if she has a bladder infection? Did I miss that she doesn't have an infection? Sorry if I did.


She's never had a UTI all this time.   
Its been almost a year off and on but never a UTI.

Ive had three docs say its classic Interstitial Cystitis (IC). Its rare in kids but does happen. We meet wit the Urologist next month to confirm. 
I'm just  hoping the Remicade will take care of all of it.:yfaint:


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## Mehita

One treatment made a difference for my son. Second infusion he was feeling pretty darn good. Third infusion and we had clinical remission. His inflammation markers were normal within a week of his first infusion.

I hope it keeps working for her!


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## Maya142

My friend's teenager has Interstitial Cystitis. She had to do physical therapy (for pelvic muscles I think?) and also worked on stress management (not sure your 5 year old is very stressed though!). Anyway, it worked for her and she's doing very well, no meds needed.

I hope Remicade is Grace's miracle drug! Fingers and toes crossed!


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## happy

Hi Farmwife, I learned something new from you today. Before my IBD symptoms became severe, I developed problems with my bladder. I was just going through the diagnostic process when my IBD symptoms became so severe that they suggested that I get the IBD symptoms under control first and then return to them for more testing. However once my IBD went into remission, the bladder problems also resolved!

I remember reading about bladder problems when I was having symptoms and thinking that none of the diagnoses seemed to apply to my situation. After reading your post above, I went to the forum Wiki to look up interstitial cystitis and I read the article about IC being more common in people with IBD. I now realize that IC is what I had at the time and I am so grateful that it resolved. Thank you for clearing up a mystery for me.

May Grace's new medication soon put her digestive and bladder symptoms into remission.


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## Farmwife

Well I had to give the bladder meds. The last 2 afternoons have been horrible.
The good news is the med let her sleep.:dance: she was getting up multiple times at night.
 however the med doesn't seem to work during the waking hours.:voodoo:
Also I've been researching about diet playing a role in IC. :shifty:Ill be watching to see if any food irritates her bladder.

I will say she seems more energetic. She even had the teacher wore out.:redface:


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## AZMOM

What is the bladder med?  I probably missed it in the thread.  

That sweet girl needs a break!  Hopefully Remicade will be her ticket.

J.


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## Farmwife

Ditropan is the med J. 
Of course I was able to get grace off of Miralax, now I have to put her back on it because of that drug. Constipation is one of the side effects.


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## Maya142

More energy is a good sign! I hope it means the Remicade is already working it's magic!
Keep in mind though, some kids do feel better immediately, but plenty (like my daughter for one) take 3-4 infusions.

I hope the bladder stuff settles down soon :hug:!


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## Farmwife

She's driving us nuts.:ywow:
I've never seen her energy this high before. She's also sleeping a lot better.:medal1: 

Still GI, bladder and JIA problems but it seems to be improving. :biggrin:

So 7 days into Remicade and I'm happy so far.:soledance:


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## plaidknitter

Farmwife said:


> I called the Urologist when we got home and we have an appointment next month.
> 
> They also put grace on a med called Ditropan, anyone heard of the drug?
> 
> She went at least 15 during remicade. The nurse put her next to the bathroom. :thumleft:
> 
> :ymad:Someone tell me how in Sam hill do I put multiple quotes in one post.:ymad:


My daughter has been taking ditropan for years. It helps relieve her bladder spasms and helps her to not leak urine as she's incontinent and catheterized. Watch for overheating, dry mouth, and dehydration with ditropan.


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## Farmwife

My hubby and I have a question.
Why loading doses of Remicade? Is it to build up the medicine in your body?
 Sorry, never dawned on me to ask.

Sadly we are seeing symptoms creep back in the last two days


Tomorrow is Remicade number 2.:thumright:


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## kimmidwife

Good luck tomorrow! It is not unusual to see symptoms creep back a few days before. Yes I think the loading does are to build up the level in the body.


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## my little penguin

^^^ yeah that !!
Times two 
Some kiddos need every 8 weeks maintenance
Mine never made it  past 6 weeks but it still worked .
Happy recharge day!!!!


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## Maya142

Glad you're already seeing a difference, that's promising! We did infusions every 6 weeks initially and now do every 4.

Incidentally, Humira has a loading dose too if it is prescribed for IBD but not if it's prescribed for JIA or AS. I have no idea why :confused2:.


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## Sascot

Good luck for infusion number 2!


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## araceli

Good luck with infusion number 2.


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## Jmrogers4

Good luck with infusion #2


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## Farmwife

All's well that ends well.

She did FABUOLUS!:dance: Took the IV like a camp and even assisted the nurse in putting it in. :wink:

her WBC count has always been low and now its within normal range. 
:dance:The Lymphocytes that are always low have climbed to almost normal.


Now we wait 6 wks.

We will be starting to wean her off some meds in the next couple weeks(if she can).
It will be so nice not to have a cupboard full of meds.:kiss:


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## Sascot

Wow, great news. May it keep getting better and better!


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## Mehita

Woohoo!!! So glad she's finally finding some relief (and you too!).


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## Brian'sMom

YAAAAAY!!!!!! Sounds like a good start!!


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## my little penguin

Yippee!!!
Glad it went well .


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## kimmidwife

Very glad to hear it went well! wishing her continued improvement with remicade! :dance:


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## araceli

:luigi:So happy for you.


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## Farmwife

Joint , bladder and now abdominal pains returning.

We only made it two weeks into the third. We still have 3 wks until the next infusion. I'm hoping this isn't a bad sign and that it will not work.

I'm going to give it to next week. 

Also were changing her formula to a low sugar kind.
I'm not sure what.  The EO28 is hi sugar and I can tell its affecting her bladder. 


We feel kind of lost. grace is still happy but even she says she doesn't feel well from time to time and doesn't know why.


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## CrohnsKidMom

I feel so bad you are going through this.  Poor little Grace, she sounds like such a trooper.  I hope whatever the issues are, they're resolved soon.


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## AZMOM

So her infusion was 9/22?  that's only 9 days   Sounds like you are headed back to steroids.


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## Maya142

Poor Grace, she really is a trooper. I can't believe how grown up she looks from your picture!!

For some kids, it really just takes longer. M really did not feel good until after the fourth infusion (and then just got better and better till she felt GREAT!). She may need a higher dose too, but you'll figure all that out after the loading doses. We never made it to 8 weeks, we have always been at 4-5 weeks. 

Another thought, if Grace has grown recently, perhaps her MTX dose needs to be adjusted?


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## Sascot

Really sorry to hear that! Thinking of you, hope it doesn't mean it's not going to work.:hug:


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## Pilgrim

You must be worried sick. Stupid disease.


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## Mehita

Fingers crossed that she just needs a dose or schedule adjustment. Hang in there!


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## DustyKat

Whoa, what a roller coaster ride you are having Fw :ghug: you must be exhausted.  

I so hope that all will settle and Remicade remains Grace’s miracle drug, bless her :heart: 

Thinking of you and sending loads of squishy hugs your way. :ghug:

Dusty. xxx


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## kimmidwife

FW,
I so hope that it just has not been enough doses yet! Keeping my fingers crossed that it will work for her!


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## Farmwife

Thanks everyone.

I guess the issue for me is, it did work. 
The infusions made a big difference but just don't last that long (9-11days).

Now abdominals, neck (spine), and EN spots are back.
Waiting to hear from the Rheumy and GI soon.

So is it still possible that Remicade will work, when it seems to be wearing off so fast?


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## Jmrogers4

What is her dosage FW?  Is she at 5ml/kg?  We had to adjust Jack to max of 10ml/kg to make it to the 9 weeks?  Hope it's just a matter of adjusting dosage and time frame and it is her magic medicine.


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## Brian'sMom

So sorry to hear. Remicade worked well the first dose. 2nd we saw symptoms coming back and on the 3rd he had the allergic reaction. In the end... TNF didn't work for us either. Our GI is trying to get insurance to approve a geneology test. I don't quite understand, but they are 'checking to see why Brian's case is so difficult.' Grace's case seems difficult too. Our GI wants to know why and thinks this will help. Just fyi for ya  Hugs


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## Maya142

It is possible FW, you could increase the dose or shorten the interval between infusions. Also, once she's done with the loading doses, you should see a more consistent response.


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## Farmwife

Jmrogers4 said:


> What is her dosage FW?  Is she at 5ml/kg?  We had to adjust Jack to max of 10ml/kg to make it to the 9 weeks?  Hope it's just a matter of adjusting dosage and time frame and it is her magic medicine.


I forget the dose amount. :ybatty: Im sure its written some where.

Your boy looks so big driving. When did they/we get so old?????:confused2:


Next infusion in 2 wks. So that will put them 4 wks apart. I guess the doc will see how it goes from there.:yfaint: 

Until then Tylenol and heat packs.


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## DanceMom

In our experience, if the IBD meds don't work....you may not be dealing with IBD.  Just something to keep in mind.  I hope your girl feels better soon!


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## Farmwife

I always have that thought Dancemom.
The thing is the meds do work, just not long enough.

The Rheumy nurse said that since she improved so much after the infusions that the doc is/was happy to hear that
 and thinks Remicade needs more time to build up in her system to work longer and even better. Any hope right now is welcomed.


:voodoo::voodoo::voodoo:
So musing on the GI issues. 
:shifty:_I wonder is it her new bladder medicine Ditropan?_
I had to increase the Miralax because of this drug and read it might cause GI problems.
The Urology nurse said I could stop it any time. 
So as of tonight no bladder med. I will give it a few days to see if it makes a difference to her pains or bladder.


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## my little penguin

Is this her second infusion or fourth?
If it's still the first three it really can take that long to build up and start working longer we saw this in DS . He did however burn through it fast so we never got past 6 weeks and had to do a higher dose.

Good luck


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## Farmwife

It will be her third infusion mlp. I'm praying it will just take longer. 
I'm just thrown for a loop because I didn't expect it would work so fast but ware off like this.:yrolleyes:


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## my little penguin

If it was only her third then you can definitely increase and pull in .
Good luck 

It wasn't even fully working for DS by the third .


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## Maya142

Hang in there Farmwife! I know it's difficult to imagine when she's not doing well now, but it's very promising that she did get significantly better even if it was only for 9 days. 

Will be thinking of Grace. We are using a special heating pad for M's neck pain (specifically for neck pain), not sure if that might help Grace?


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## Farmwife

:soledance:Well 3 days with out the bladder med and she's doing better. 
No pains, no cramps and seems happier.
So for now it looks like the Ditropan was the issue.

We've been given a new bladder med that's suppose to be gentler 
(why didn't they use that one in the first place?) on the track.
Insurance is causing issues so I still don't have it. 
But right now her bladder has calmed down.

:wink:So for now all looks..............good.


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## kimmidwife

That is great news! Hopefully then the remicade is working!


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## Farmwife

The  Urologist dx my dd with Bowel and Bladder Dysfunction. 
This is kind of a catch all term but the doc explained why.
My girl very well could have the auto-immune type Interstitial Cystitis (IC). 
Its rare but since her IC got better after the first and second Remicade it seems likely.
This Urologist who is a pediatric specialist and takes the hard cases, 
says my dd might have nerve problems to her bladder/bowel/pelvic floor.
She ran down the whole list of why she believes this and for once I couldn't ague.
We now will have to go to the hospital for 3, two day stays for specialized therapy and nerve testing/training.
We have two new meds to help my dd but I want to get the GIs take on this. 

Symptoms returning, EN spots popping back up and her fatigue was bad enough I kept her home one day this week. :yfaint:

:mario2:But Remicade on Monday and all will be well................I pray!


----------



## kimmidwife

FW,
Why does this new doctor think that? At least they want to investigate and figure things out. That seems positive.


----------



## xeridea

There's this research being mentioned in some recent articles that discuss proactive monitoring of infliximab (Remicade) levels and doing dosage adjustment based on blood concentrations. This in contrast to the current approach which assesses for worsening symptoms and either doubles dosage (5mg to 10mg per kg weight) or increases infusion frequency. Circulating inflixmab levels have been shown to vary between individuals, and are affected by many factors such as age, weight and drug metabolism. The big takeaway was that with this approach about 1/3 less patients came off infliximab due to antibody development. 

Farmwife, not wanting to throw another piece of literature your way as it sounds you have lots on your mind already, but I think the approach makes sense and is something worth looking into.


----------



## Farmwife

Well Remicade infusion number 3 is a thing of the past and all is well.:thumleft:

Within a few days after infusion her EN spots are almost gone
 :emot-dance: , joint pains are getting better and belly pains are getting less and
 her bladder inflammation seems to be a distant memory.:dusty:

Now we wait 8 weeks for next infusion.
 I'm hopeful she can make it but will be surprised if she does. 

Personally as a mom for the first time in awhile I have been able to look forward to the future and to RELAX!
 I have been in the process of starting up a business. :thumleft:
This is only because of the good place my dd is in
 thanks to the good Lord and Remicade.


----------



## araceli

So glad to hear is working. Maybe if she starts having symptoms before the 8 weeks (hopefully not) her GI can order remi levels test to see if it needs to move it closer? It took a while for my daughter to see full results. Wishing you the Best.


----------



## Jmrogers4

Yahoo, It's taken us a while to find the right time frame/dosage but the good thing for us is for a majority of that time he feels great, actually he feels great the entire time it's just little things that have popped up in the last week(s) before infusion.
So glad she is feeling good and you can look at other things.  Good luck on your business venture.


----------



## Brian'sMom

I'm so happy for you and your sweet daughter. May the good times roll!!! :dusty:
Yaaaay!!


----------



## Niks

Good news FW!  Really hope she goes from strength to strength.  Good luck with your business venture!!  :hug: xx


----------



## DustyKat

After such a long and rocky road it truly is wonderful to read this and I can only hope with all my heart that the good times remain for a very, very long time to come. Lord knows you and your lass deserve it! :Karl: 

Dusty. xxx


----------



## Maya142

SO glad to hear this. If she doesn't make it to 8 weeks, don't worry! You have a lot of room to play with the dose/frequency. We've never had to wait till the next infusion to get the new dose/frequency approved, so I guess it must depend on your insurance. 

Hope she feels well forever


----------



## Sascot

Great update! Good luck with your business. This is the second time I have posted this - connection kicked me off


----------



## Pilgrim

I hope this mean life becomes, dare I say, NORMAL for all of you for a long time. What a blessing it would be! My prayers are with your family for a smooth road.


----------



## Farmwife

Update-
Constipation, 1 bloody stool,  joint pains, EN spots, 
fatigue and pale skin is back.
No virus as of yet. No real understing of why this is a cycle she's going through.

So this is where we stand with the doctors.

GI- The GI wants to discuss her slow down in growth and stalled weight (she lost the extra she gained).
 We meet next month. I have a feeling scopes will be happening.

Dermatologist- Now wonders if Grace's EN spots are rheumatoid nodules. 
Whatever they are, they are spreading to different parts of her body
 and its starting to worry us.

GP- Once he hears about the spots popping up on her body will want to do labs right away. 
I'm scared this is some serious form of vasculitis (sp?).

Rheumatologist- He mentioned switching Grace from MTX to Sulfasalazine.
 I would think he would want to up Remicade. 
Tomorrow is the 3 week mark since her last infusion.

To tell you the truth I didn't want to update at all. 
Its so embarrassing to go back and forth between the good and bad updates.
 But I feel if I don't at least share the good news I'll never find any.


----------



## my little penguin

Our Rheumo would not go "backwards"
Said sulfazine was too weak of a drug
Which is why we add Mtx..

Did she do the 23&me study ?
That might help you figure it out better .


----------



## Farmwife

Her Rheumy never made mention to it being a weak drug. I guess he was thinking of it helping the IBD side of things like the MTX does.

23&me, where do I get it from?


----------



## Maya142

Interesting, we were told the same about Sulfasalazine. That it was a milder drug. Could they up her dose of MTX? MTX worked much better than Sulfasalazine for M (actually, Sulfasalazine did nothing at all!).

Arava (Leflunomide) is another drug like MTX used for JIA. It worked well for M. Imuran also used to be used a lot for JIA and RA. It's also used for Lupus and certain kinds of vasculitis I think?

Sorry to hear things are so up and down. I hope Grace feels better SOON! Maybe just a higher dose of Remicade or more frequent infusions will get everything under control?


----------



## my little penguin

https://www.23andme.com/ibd/

Ibd gene study
It's free they give her raw DNa data from spit
There are online reports


----------



## DanceMom

I'm sorry to hear that Grace is struggling.  A has gone a bit back-and-forth lately too.  We've had a few spots pop up on her legs and arms recently, and it always concerns me too.  As you know, she's had 2 biopsies and we still don't have a clear answer as to what the spots are.  GI and Dermo think it is most definitely EN....Rheumo thinks it is cutaneous vasculitis.  The only way to know for sure is to have a biopsy, and in our case that didn't help!  

Given Grace's history, I don't think it is unreasonable to test for systemic vasculitis and your Rheumo should be able to help you with that.  A had an EKG, echo, and MRA of abdomen/pelvis to rule out systemic vasculitis.  We were considering a CTA, and should we suspect a systemic vasculitis again that will be our next step.


----------



## Farmwife

my little penguin said:


> https://www.23andme.com/ibd/
> 
> Ibd gene study
> It's free they give her raw DNa data from spit
> There are online reports


You have to be 6 or older. to partake in the study.


----------



## DustyKat

I am so very sorry to hear this Farmwife. :ghug: 

Sulfasalazine is the drug from which the more modern 5ASA’s (Mesalazine) were derived. It is the  aminosalicylate properties of the drug that have the beneficial effects so separating it from the Sulfa aspects is what gives the 5ASA’s the edge over Sulfasalazine when it comes to side effects. Therefore to go to Sulfasalazine you are going back to an entry level drug. I can see why some doctors would be loathe to go that path, particularly with Crohn’s, when you are already dealing with/have dealt with immunosuppressives and biologics. 

I hope you can get things back under control very soon and your lass starts feeling better, bless her. :heart: 

Dusty. xxx


----------



## Emily's mom

My heart goes out to you and Grace. I don't have any medical advice, but I hope Grace has resolve soon. Never feel embarrassed. We are all sharing similar experiences and I learn so much from people like you on this forum.

XO,
Julia


----------



## Sascot

So very sorry to hear that. Thinking of you and sending hugs. Hope they can come up with an answer :hug:


----------



## Catherine

Thinking of you guys


----------



## Farmwife

GI called and said for Grace to keep with Miralax and keep them updated.
Rheumatologist has yet to call back. I've left messages, Still no call.:voodoo:
She's done 2 days at school with no problem but was in pain half the night.

Ok, here's a question out of total curiosity,

Does your child's GI care more about lack of height or lack of weight? Or maybe both?

Before this flare up we asked if Grace could have her g-tube taken out.
But the GI said no because she hasn't really changed in weight.
However, she did gain 2.1 inches in the year.
She's not underweight at all and is even on the huskier side.
Just wondering what your GI's would think or have said?


----------



## Pilgrim

Farmwife said:


> You have to be 6 or older. to partake in the study.


We are sad about that too.

I just wanted to say please don't feel embarrassed. I think it is a testimony to the very nature of hope that even though there are so many discouragements along the way - when you try a new treatment for Farmgirl, or add or subtract something from treatment - you are really hopeful! I think you are passing a special gift to your child when she can see that you don't lose hope! 

Got to go deal with a poop sample...:ycool:


----------



## Jmrogers4

I would say both, she should be growing so typically a child would gain/grow at a certain level and if there is no change on either one and nothing that would effect that (diet/activity) then they should be gaining alongside growth if it was just a month with no gain then I wouldn't worry as I know a lot of kids gain, then shoot up in height to accommodate the weight gain.


----------



## DanceMom

When we first started with our GI (2 years ago) A was at the 5th %ile for height and 8th %ile for weight.  He was most concerned with her height and felt there had to be some absorption issues.  He said many kids are skinny....but with tall parents our daughter should not be at the bottom of the chart.  She's currently at the 16th %ile for height and 9th %ile for weight.  He's very happy with her increase in height but would like to see her weight match.  She's still on the skinny side, even with those stupid supplemental juice boxes.


----------



## crohnsinct

Our GI concentrâtes more on height but keeps an eye on weight.  Even non IBDers typically gain then grow.  A growth of that amount should put a little weight on though.  You would think the extra bone etc would weigh something.  Also, the GI likes a little cushion on weightf or flares.  O is still at the 4th percentile for BMI so not likely she will ever have a cushion.  

Our doc also has a saying, "skinny isn't a disease".  Some kids are just always going to be extra thin.  IBD or not.  So weight is a harder barometer but yes he watches it and certainly a loss gets more than a glance.


----------



## Farmwife

Hmmmm, very interesting. Grace weight has always been an issue. Full EEN she has to have 500-800 EXTRA calories to keep her weight at 40-43 lbs. Once on full food she gained fast but has since lost it. So according to her record she has been in between 40-44 lbs for the last year and a half. Growth is however the best is been in 3 yrs.


----------



## Farmwife

Rheaumatoligist called. She will be on Remicade every 4 weeks from now on.


----------



## Maya142

Moving Remicade to every 4 weeks made a big difference for M. I hope it works like magic for Grace!


----------



## Catherine

Wishing that Remicade at 4 week works to magic for G.


----------



## crohnsinct

Farmwife said:


> Once on full food she gained fast but has since lost it.


So it really isn't that she hasn't gained she has lost.  And a gain in height without some corresponding gain in weight within a year is still seen as a technical loss. 

O did a stint of 4 week infusions.  Has he done or is he planning a levels test?


----------



## Farmwife

crohnsinct said:


> So it really isn't that she hasn't gained she has lost.  And a gain in height without some corresponding gain in weight within a year is still seen as a technical loss.
> 
> O did a stint of 4 week infusions.  Has he done or is he planning a levels test?


The weight gain/loss was only over a 2 week period. 
It was at the start of remicade.
 The doc thought is was because she had intestinal healing taken place, 
so she was able to put weight on.

I'm ok with every 4 weeks, 
I just having one of those moments when I think.....
how did she get to this point.

The nurse warned me that our insurance company will probably deny the request to move up Remicade but that the Rheumatologist will appeal it.
So she said give them "some time" to call me back with a date for the next infusion.:voodoo:
Next week would be the fourth week. I don't know if it'll be sorted by than.


----------



## araceli

I hope it works with every 4 weeks and that you don't have problem with insurance. Hugs


----------



## Brian'sMom

Farmwife said:


> I just having one of those moments when I think.....
> how did she get to this point.


I think we can all relate to this. HUGS!!!!   And 4 weeks may just be her magic number and smooth sailing!


----------



## Sascot

Really hope the new schedule does the trick! Hope the insurance doesn't take too long to sort out.


----------



## Farmwife

:voodoo:2nd denial from Insurance company to move up the infusions.:voodoo:
The doc will appeal it AGAIN! 
Her pred burst is about to come to an end. 
Its worked amazedly well. I hate for her to go back to pain again.
I don't know if Sulfasalazine is working, I think its to early to tell.


----------



## Farmwife

The Rheumatologist called..........................
he wants her to stay on pred until the next Remicade infusion. I knew a burst was a joke.
Oh well, its working.:rosette1: My love/hate relationship continues.:biggrin:

So I have a weird question that might have nothing to do with IBD,

Grace's bottom front teeth have grown in. 
*But their as small as the baby teeth she lost.*
Could this because of her meds (like pred) that made her teeth smaller?
Or is this normal for some to have small teeth?
I don't even know who to call and ask.


----------



## my little penguin

She is 5 . Each tooth size differs 
Ask a dentist if your concerned they can tell if the teeth are normal for her age


----------



## Pilgrim

I don't know if this helps, but I found with some of my kids (those with no IBD), that their teeth can grow in really s-l-o-w-l-y (I'm talking months to grow all the way in). 

Maybe Grace's teeth are just having a Pina Colada or something before they finish growing?


----------



## Jmrogers4

^^^ yeah that seems like it took forever for my younger sons teeth to replace themselves all the way


----------



## Farmwife

That could be it but I think it's been at least 3-4 months now. 
Believe it or not it's my hubby that's more concern about this.
Lol, I get concern about blood in stool and such but he gets concerned about teeth size.:wink:


----------



## Pilgrim

Men are babies when it comes to poop.:ack:


----------



## kimmidwife

FW,
I think it is rare but I remember once reading that you can have an extra set of baby teeth. I would take her to the dentist. They can tell on X-rays for sure if those are an extra set of baby teeth or adult. They can also feel you if they are normal size.


----------



## Farmwife

Update
She vomited Friday night in the shower and there was blood in it. :frown:No bm Friday.
Saturday was fine but no bm's.:frown:
Sundays (today) her bm was pencil thin with a little blood and she vomited at church.:frown:

I'm thinking obstruction or side effect of one of her meds.

Remicade is tomorrow!!! I pray it helps!!!


----------



## DustyKat

Sending loads of luck and well wishes that the Remicade has your lass feeling on top of things again, bless her. :heart: 

Thinking of you, :ghug:

Dusty. xxx


----------



## DanceMom

I vomited blood when I had a kidney infection. My only other symptom was severe back and chest pain. I know Grace has urinary issues so I would let her doctor know this is going on.  I hope you can get things going in the right direction quickly!


----------



## crohnsinct

Poor baby  I also would call before leaving for the infusion just in case it might be an infection like dancemom mentioned or a bug. Sometimes if they are sick they will not infuse and if they do decide to infuse will move them to another room where there are no other patients.


----------



## Farmwife

CIC, Good idea about calling.

DanceMom, Grace has vomited blood before. When she was first dx it happened a few times. The GI (from Mayo) thinks the disease is in her stomach also. But I do think with the constipation, that kidney issues should be watched carefully. Thanks.


----------



## Sascot

Sorry to hear that! Hope the Remicade helps and she doesn't get any worse


----------



## Farmwife

:thumright:Well she seems a bit more chipper this evening. 
She was nauseous but no blood! Hey I'll take it.:rosette1:
So my love of Remicade is still there.:ybiggrin:

Hopefully well get through Christmas with little problems. :ysmile:


----------



## Brian'sMom

My son's response to very painful cramps is to vomit. I used to worry about obstruction... But it never was that for us. Also, when we were inserting NG tube in and out each day... We'd see a little blood in his vomit. I can't remember if Grace is doing NG tube right now.


----------



## Farmwife

Brian'sMom said:


> My son's response to very painful cramps is to vomit. I used to worry about obstruction... But it never was that for us. Also, when we were inserting NG tube in and out each day... We'd see a little blood in his vomit. I can't remember if Grace is doing NG tube right now.


She has a g-tube. She is having increased tummy pains by her bellybutton, so cramps could be possible. 
Her GI wants her to do some kind of poo test to check for blood. Something to do with a smear of poo on a cards over 3 days. I think she's done this before.
Of course now theirs no blood in her poo. Go figure.


----------



## DanceMom

A has bloody stool occasionally too.  It goes as quickly as it comes.  I realize it means that things aren't quite right, but I also realize things could be a lot worse.  I hope you get some answers for Grace soon.


----------



## crohnsinct

Those card tests are for occult blood.  Blood you can't see by just looking.  Just because you can't see it, doesn't mean it isn't there...sorry to be a bubble burster.  Hopefully those will come back perfectly fine as well.


----------



## araceli

When my son gets constipated he gets belly button pain. I hope everything gets resolved soon and she feels better.


----------



## Farmwife

Scopes coming.:yfaint:

I emailed an update on Friday to her GI and this morning the GI emailed back that she wants to scope Grace. She's hoping to tell if Grace has crohn's, UC or it's still microscopic ibd.
I'm waiting to hear from the scheduler from the hospital.


But here's my issue, if she's on all these meds, will the GI been able to tell which one it is?
I mean if there's no further damage and I pray theirs not, how will she be able to tell?


----------



## my little penguin

If you have full mucosal healing ( no damage visible or microscopic)
No way to tell.
Prior to remicade or Mtx  there was still damage ( microscopic and visible on the scope )
After remicade for 8 months and Humira for 6 months there was no signs of damage except the duodenitis.
So if the meds working on the Ibd but not on the arthritis you won't see anything at all.
If her arthritis flared from Gi inflammation then you will see some .
No way to know without scoping but if she is vomiting there is something going on.


----------



## DustyKat

It will depend on the extent of response to treatment, as mlp has said. 

If inflammation is still present then there may be landmarks that are peculiar to Crohn’s and not UC, such as depth of damage to the mucosa, granulomas (if present) and apthous ulcers. With treatment skip lesions may not be reliable as a marker for Crohn’s over UC. 

*HUGS* to you guys. :heart: 

Dusty. xxx


----------



## Farmwife

Thanks mlp and dusty. I know the GI is hoping to find granulomas, as she feels that Grace has crohn's because of the TI  involvement and probably stomach.


----------



## Maya142

M had the same things - basically microscopic inflammation in her stomach and colon (some tiny ulcers in her colon) and a "friable" TI. Biopsies showed granulomas.

Good luck!!


----------



## kimmidwife

Hope you get some answers!


----------



## Farmwife

No word yet on the scopes.:voodoo:

The Remicade is wearing off.
So 12/15/14 was her last infusion.  So that's 22 days. 
Still trying to get time to file the grievance.
 I need to contact 2-3 different people to make it happen.
Its ridiculous that I have to set aside 4 hrs just to talk to our Insurance Company.
.


----------



## kimmidwife

FW,
I am so with you there!!!!!!


----------



## crohnsinct

Lordy!  How hard is it to schedule a scope?  It takes five minutes!  Granted it may not be a date you want but the scheduler needs to get her in!  This could make a big difference.   

Sounds like you have quite a few calls to make. Good luck!


----------



## Farmwife

Grace has been vomiting all night. First thought is the flu but she's perfectly fine. No fevers, aches, pains and nothing else.
It seems like it's a lot of yellow.
Thank God she has her feeding tube but even the formula/ water mix is being vomited.
Calling the docs now!


----------



## crohnsinct

Good answer!  I hope it is a virus!  While you are talking to them ask them about scope date 

BTW - not to freak you out and put more pressure on you but those appeals/reviews and such have strict deadlines as determined by law.  Make sure you find out how long you have to file etc because missing a deadline will leave you out of options.


----------



## Sascot

Hope it's just a virus! Thinking if you both


----------



## Maya142

Sending hugs FW. I hope you can get the Remicade approved fast. I can't believe how difficult your insurance is making it  Any chance a dose increase (versus frequency of the infusions) would be approved faster?
Hope Grace starts feeling better soon:ghug:.


----------



## kimmidwife

Hoping for a virus! Please keep us posted! Sending her and you hugs!


----------



## Farmwife

The doc upped her Zofran and said once a fever hits that she is to go to the ER. 
Time to get my overnight bag ready....praying I don't have to use it.


----------



## my little penguin

Did the go tell you when the scope is ???
Typically you just call the scheduler once they put the order in and they give dates 
The Gi doesn't necessarily give us the date .


----------



## Farmwife

Called the gal twice and have left an e-mail requesting the date and time.

Still at home waiting....................................


----------



## crohnsinct

Call the main number...the one they actually answer.  Tell them not to transfer you or take a message.  Tell then you will wait on the line.


----------



## Farmwife

Theirs only one lady that schedules, she is also the head nurse for a different GI. 
Their is no waiting, only voice mail. 

Now I'm going to take on insurance while my hubby watches Grace.


----------



## crohnsinct

GO GET EM:tank:

Maybe you have to kick it old school with the scheduler/head GI nurse.  Show up at the office...how far is it?


----------



## DustyKat

My goodness! I hope you are soon able to get through to them Fw. :ghug: 

And I hope things settle for Grace, bless her. :heart: 

Thinking of you! 

Dusty. xxx


----------



## Catherine

Hugs to you all.


----------



## Farmwife

Still at home. Now my boy is vomiting and looks worse than Grace. 
Apparently she never got the memo that she was suppose to be the sicker of the two.
We'll see how tonight goes, I don't think I'll be sleeping much.


----------



## Farmwife

She's all better and bored because her brother is still laying out on the couch sick.
It's not the flu but the other bug going around.

Scope scheduled for the first part of February.:thumleft:


----------



## Maya142

So glad she's better and scopes are scheduled. Hope your boy feels better soon!


----------



## Farmwife

Update:

She's just not bouncing back from this virus. Fatigue, joint pain (right knee mostly), constipation and low food intake.

But the most concerning is a raised slightly blistery rash that has grown (over 5 days) to form a circle.
Ya, first thought was ringworm! 
But this is half dollar size and incredible painful and itchy.
 I've already done 4 days of Nystatain (sp?) to no avail. 
I'm going to send some pics to her dermatologist downstate and see what she says.

Have any of you had ringworm like this or can guess what is could be?


----------



## Catherine

I had ringworm as a baby.  My mother says it was a single ring on my head.  I caught from a cow.


----------



## my little penguin

Has she seen her pediatrician ???
They generally know ringworm


----------



## Pilgrim

Farmwife, YES! Last year before our diagnosis little H had a mysterious circular abdominal rash. I thought ringworm at first but it didn't respond to meds and ended up being Pityriasis Rosea. Very Itchy and spreads. She had 4 or 5 half dollar size spots. I may have spelled it wrong but you will find it on the net. 

I wondered if it was Crohn's related after the fact. I bet it was. Get some pics on the net and tell me if it looks similar.


----------



## Farmwife

Catherine said:


> I had ringworm as a baby.  My mother says it was a single ring on my head.  I caught from a *cow*.


----------



## Farmwife

my little penguin said:


> Has she seen her pediatrician ???
> They generally know ringworm


Appointment on Friday with the GP.
 Thank God I just found out my town now has a pediatric dermatologist. :smile:  Hopefully no more 2.5 drives.
I'm going to call and see if I can get her in tomorrow. 

Pilgrim ,Grace's is about 3 inches now:eek2: and is so painful she could barley sleep. Was your child's like this?


----------



## my little penguin

Really....Friday 
 our ped has daily sick appt slots
You just call and they give you a slot


----------



## Snez

Sorry about your girl Grace going through so many challenges. 

Could the rash be shingles?


----------



## kimmidwife

FW,
A painful fishlike that could be a number of things. Please call and tell them she needs an apt with a dermatologist ASAP.being on remicade puts these kids at high risk for certain infections. She needs to be seen. Maybe call and remind the doctor of the fact that she ison remicade.


----------



## Catherine

In case you don't know ringworm is very contagious!!

Glad you got an appointment.


----------



## Pilgrim

Catherine said:


> In case you don't know ringworm is very contagious!!
> 
> Glad you got an appointment.


Yes! Keep the cows away from Grace!:ylol2:

All joking aside, the rash I remembered with H (Pityriasis Rosea) was more itchy than painful. It spread from a single circle into multiple circles then rashy spots. Poor Grace, hope she gets figured out soon.


----------



## Farmwife

Had an emergency appointment with GI this morning. 
He ordered SED, CRP and CBC (boy, we have him trained).
The GP wonders is it's her EN, just a whole lot worse than normal.
but we're going to treat spot as ringworm until we hear from Dermatologist.
The one in town will not see kids as complicated as Grace.

Rheumy has prescribed Tramadol for Grace's joint pain. Has this med worked for anyone here?


----------



## DanceMom

Tramadol helped A's headaches and stomach aches, but not joints.  We use it sparingly.  It does cause constipation.


----------



## Maya142

Tramadol helps M's joints. She takes it daily because of how bad her joint pain is. It makes her sleepy and it's sort of hard to concentrate at school, but overall she manages quite well on it. If it wasn't for Tramadol, I'm not sure how she would function.
We used Miralax for the constipation.

Good luck!


----------



## happy

I just wanted to let you know that Tramadol has a very common side effect of urinary retention. I seem to remember that Grace has had some bladder difficulties, so this may be something to watch for. I had to stop talking this med because of this side effect. May you soon hear good news from the insurance company and helpful information from the dermatologist.


----------



## my little penguin

http://www.medpagetoday.com/EmergencyMedicine/EmergencyMedicine/46717

Please note tramadol as a narcotic now .

That said Ds has not tried it for his JSpA.

I am confused by your post 
Did you see the Gi today or the GP?
You said Gi at the top but then said the gp saw the rash ...?
Maybe it's the wine 
Or I just lost it completely


----------



## Farmwife

Lol, I meant GP not GI, stupid auto-correct.  :cool2:
Multiple attempts made to contact the Derm and no call back. Grrrrrrrr

The Tramadol I was told is to be used as sparely as possible.


Update:
In all fairness, the Derm did call and left message but I never saw it. Oops.


----------



## Maya142

That's how M was started on it too and it's really the way it should be - used as little as possible. M only started taking it every day because of how severe her joint pain was. Both her rheumatologist and pain management doctor said that it's very important to get pain under control, otherwise it gets amplified and you have a whole new problem to deal with it.

We are now (very slowly) weaning M off it to prevent withdrawal symptoms.

I really hope it helps Grace:ghug:


----------



## Farmwife

Well I'm not happy about the possible addiction factor and more worried about the possible constipation tramadol can cause. The bladder medicine  that she use to be on caused constipation and then the GI  flare hit hard. I don't want to make thing worse.

She's still vomiting in the afternoon/ night.:yfrown:


----------



## Maya142

My older daughter (S) has used Tramadol very infrequently for years. She has used the same dose and has always been able to stop it without tapering. If you use it sparingly, I wouldn't worry too much about addiction.

M's case is kind of special since she does have Juvenile Ankylosing Spondylitis that has been extremely difficult to control. We should have treated her much more aggressively earlier, but, of course, that ship has sailed.

 With M and S, we have treated constipation has been easily managed with milk of magnesia or Miralax. When M's Crohn's was causing constipation she did have to take 2 doses of Miralax a day to have a BM.


----------



## Farmwife

Spot on arm looks worse.
Labs came back, all look fine except her WBC count has dropped to 2.0 (normal range 5.5-15.5). 
Waiting on Derm to look at pics. 

With wbc that low I called the Rheumy to ask if I should give the MTX shot.
I wonder if the low wbc is causing Grace's extreme fatigue?


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## Sascot

Sorry I seem to have missed a lot. Wishing Grace could catch a break, poor girl. Hope your boy is feeling a bit better. My kids haven't used tramadol but I have and did find it helpful. Hope they call back soon about whether to give the methotrexate


----------



## Farmwife

Spot is still there and now a second popped up. So very painful.
Sometime this week she will be going down for biopsies. 

The Dermatologist said theirs 3 possibilities............................
1- Systemic Disease, (Still's Disease) still have to research this one.
2- Allergic reaction to her meds. She thinks this is less likely because its not more wide spread (Thank God) but anything is possible.
3- Infection of unknown origins. With her wbc count being so low it's a possibility.


The Tramadol has worked wonders at night for her. 
We're thankful for the sleep.


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## crohnsinct

How does Still's disease relate to juvenile idiopathic arthritis?


Still's disease is one type of juvenile idiopathic arthritis (JIA) and is also known as systemic-onset JIA. It is referred to as “juvenile” because it typically affects children under 16 years of age. By systemic, it is meant that along with joint inflammation it typically begins with symptoms and signs of systemic (body-wide) illness, such as high fevers, gland swelling, and internal organ involvement. By idiopathic, it is meant that the disease has no known cause. Systemic-onset JIA was formerly known as systemic-onset juvenile rheumatoid arthritis (JRA) and is the same disease. Several years ago, the naming system for all types of JRA changed, and JRA is now called juvenile idiopathic arthritis or JIA.




What are symptoms and signs of Still's disease?



Comment on this
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Still's disease usually begins with systemic (body-wide) symptoms. Extreme fatigue can accompany waves of high fevers that rise daily to 102 F (39 C) or even higher and rapidly return to normal levels or below. Fever spikes often occur at approximately the same time every day. A faint salmon-colored skin rash characteristically comes and goes and does not itch.

Poor appetite, nausea, and weight loss are common. There is also commonly swelling of the lymph glands, enlargement of the spleen and liver, and sore throat. Some patients develop inflammation around the heart (pericarditis) and lungs (pleuritis), with occasional fluid accumulation around heart (pericardial effusion) and lungs (pleural effusion). Arthritis, with joint swelling, often occurs after rash and fevers have been present for some time. Although the arthritis may initially be overlooked because of the impressive nature of the systemic symptoms, everyone with Still's disease eventually develops joint pain and swollen joints. This usually involves many joints (polyarticular arthritis). Any joint can be affected, although there are preferential patterns of joint involvement in Still's disease

Still's disease is diagnosed purely on the basis of the typical clinical features of the illness. These features include high intermittent fever, joint inflammation and pain, muscle pain, faint salmon-colored skin rash, swelling of the lymph glands or enlargement of the spleen and liver, and inflammation around the heart (pericarditis) or lungs (pleuritis). Persistent arthritis (arthritis lasting at least six weeks) is required to make a firm diagnosis of Still's disease. Other diseases (especially infections, cancers, and other types of arthritis) must be excluded.

Many patients with Still's disease develop markedly elevated white blood cell counts, as if they have a serious infection, but no infection is found. Low red blood counts (anemia) and elevated blood tests that indicate inflammation (such as erythrocyte sedimentation rate or ESR, C-reactive protein, and ferritin) are common. However, the classic blood tests for rheumatoid arthritis (rheumatoid factor) and systemiclupus erythematosus (antinuclear antibodies) are usually negative.

Of all patients with Still's disease, 100% have high intermittent fever, and 100% have joint inflammation and pain, muscle pain with fevers, and develop persistent chronic arthritis. Approximately 95% of Still's disease patients have the faint salmon-colored skin rash, 85% have swelling of the lymph glands or enlargement of the spleen and liver, 85% have a marked increase in the white blood cell count, 60% have inflammation of the lungs (pleuritis) or around the heart (pericarditis), 40% have severe anemia, and 20% have abdominal pain.


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## Farmwife

Thanks, she doesn't have high fevers or wbc. Hopefully that's a good sign.


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## my little penguin

http://www.stillsdisease.org/index.php/37-2/

Images of rashes for stills disease


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## Maya142

Your rheumatologist probably would have said if he thought she had systemic JIA. From what I have heard from parents, they say it's usually evident from bloodwork and can be very serious. High fevers that go down by themselves are common. Hopefully, her rash is not anything serious. Rheumatologists typically use different biologics for it: Actemra (IL 6 inhibitor) or Kineret (IL 1 inhibitor). Anti-TNFs don't usually work very well in Systemic JIA (but of course, all kids are different).

I'm so very glad she's sleeping at night. Hope Remicade works.


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## kimmidwife

FW!
Sorry to hear she has not improved. Did you guys ever see an immunologist? With all her issues I am wondering if there is not something else going on that she has not been checked for?


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## Farmwife

Ya Maya, what I'm seeing is not like Grace's spots. 
But can their be other skin manifestations JIA?  I'm also looking into ibd skin issues.

Plus we know she has vasculitis(sp?) on her feet and she has EN spots on her legs now. 
The Derm said I don't have to put the antifungal cream on her arm, since it hasn't worked.
My fear it is ringworm that just isn't responding to treatment.


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## Maya142

To be honest we haven't really dealt with skin issues much. M has psoriasis on her nails as a 4 year old (wayyyy before she was diagnosed - we only learned in the last few years that it's connected to AS and IBD ) and occasionally has eczema. Besides that, no issues.

Did the derm give her a cream or something to make it less painful? I wish insurance would just approve Remicade every 4 weeks - Grace very obviously needs it.


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## Farmwife

kimmidwife said:


> FW!
> Sorry to hear she has not improved. Did you guys ever see an immunologist? With all her issues I am wondering if there is not something else going on that she has not been checked for?


No she hasn't seen one yet. :yrolleyes: I was hoping to leave one specialist we hadn't meant.:ybatty:


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## Farmwife

No the Derm is contacting another Derm to get advice on how to treat this.
She asked me to call the rheumatologist and ask if Grace can do a biopsy with her wbc being so low.  Thankful the tramadol is helping at night.


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## Pilgrim

Farmwife said:


> Ya Maya, what I'm seeing is not like Grace's spots.
> But can their be other skin manifestations JIA?  I'm also looking into ibd skin issues.
> 
> Plus we know she has vasculitis(sp?) on her feet and she has EN spots on her legs now.
> The Derm said I don't have to put the antifungal cream on her arm, since it hasn't worked.
> My fear it is ringworm that just isn't responding to treatment.


I was told by a doctor that if ringworm doesn't respond to the antifungal cream (I think that is what they use) then it isn't ringworm.

Don't know if that helps. Probably not. I hope the derm can find a colleague in the know....


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## Catherine

Farmwife said:


> The Derm said I don't have to put the antifungal cream on her arm, since it hasn't worked.
> My fear it is ringworm that just isn't responding to treatment.


I think maybe question is, if its not ringworm will the antifungal cream do any harm.

Just is case it is ringworm are you applying the cream to the undamaged area around the sore.  eg approximately 4-6cm of unaffected skin all round the ringworm.


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## Farmwife

Catherine said:


> I think maybe question is, if its not ringworm will the antifungal cream do any harm.
> 
> Just is case it is ringworm are you applying the cream to the undamaged area around the sore.  eg approximately 4-6cm of unaffected skin all round the ringworm.


No, I was just told to apply it. Not how!  :yfaint:
Thanks for telling me.


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## Catherine

This is where I got the information about applying cream.

http://www.patient.co.uk/health/Ringworm.htm


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## Farmwife

:bdayparty:
Tomorrow is Grace's birthday. She'll be 6. It's hard to believe.

Update:
Spots on arms not any better. I am still using the antifungal cream but I don't think it's that.
I'm preparing to head down state for her biopsies.



For those who have had skin biopsies,

Will the biopsy leave a deep hole? How painful is it? Do they try to glue it up? 
The dermatologist asked if Grace would sit still for it.


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## my little penguin

Ds was suppose to have a biopsy
He was 8
After being at dermo office
Dermo reccomended a płastic surgery remove /do it under anthesia 
We scheduled a scope at the same type
He was having a blue Nevis remived and it was deep


----------



## DanceMom

A has had 2 skin biopsies.  The first was a punch biopsy done by the Dermatologist.  She had 3 external stitches but was dancing/tumbling on it that weekend.  She did request Tylenol a few times but the hardest part was keeping the area clean and dealing with the bandaid rash/reaction.  The doctors/pathologists argued about the results and I regretted having it done.  She does have a scar on her leg.

It took a lot of convincing for me to agree to the incisional biopsy.  A wanted to be awake for the procedure but the general surgeon wasn't too thrilled with that idea.  He'd never had a child that young request to do it without anesthesia.  A did fine, even watched most of it. He later apologized to her for doubting her.  She had internal stitches and those were a breeze.  The results were still debatable and I regret having that one done as well.  It left a dark purple scar.

Apparently skin pathology is very difficult to decipher.  Five different people may come up with five different diagnoses (or so I've been told).  I would exercise extreme caution, mostly because you could put Grace through all of that and still not know what you are dealing with.


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## upsetmom

:bdayparty:

Happy Birthday Grace


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## Maya142

:birthday2: Happy Birthday Grace! Hope she has a wonderful day:ghug:


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## kimmidwife

:bdayparty:
Happy birthday Grace!!!!


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## Sascot

:birthday2::bdayparty:
Hope she has a lovely day


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## AZMOM

Happy Birthday to Grace.  I agree with Maya - systemic JIA is very distinct - I feel like it would have come up earlier too.  I hope you all figure out what these troubling spots are!


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## Tesscorm

:queen::bdayparty::queen:

Hope she has lots of fun on her birthday!


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## Catherine

Happy Birthday!!!


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## araceli

:rosette2: Happy Birthday to Grace.


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## Farmwife

Thanks everyone. Grace had a great day for the most part. 
She spent half her birthday party in the bathroom sick but then got better.

:angry-banghead:So the worst mother award goes to me!!!!!!
I went to give her mtx and realized that's where her rash/wound/ringworm was.
And it hit me:ybatty: that she has been using a new numbing spray on her arm for the shot.
I bet its the spray. I feel so stupid for not realizing it sooner.
I gave the shot without the spray and we'll see if it happens again.


:dance:In the other thread I posted that they approve Remicade for every 4 weeks:dance:

Grace is set to get scoped in the first part of February.

 Does your GI's make the kids wait to get their Remicade if it's close to the date of the scope?


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## araceli

I hope it was the spray. Mine had the scope and two days later remicade. I will believe is better to scope before if you want to see if remicade made a difference at a later scope???


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## DustyKat

I am so sorry I missed Grace’s birthday! 







I hope your little princess had a fab day! :Karl: 

And I hope the spray was the cause of the cause of the rash and nothing more. :ghug: 

Thinking of you both. 

Dusty. xxx


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## crohnsinct

I think at initial dx it is best to wait to start a treatment but she has a dx and you are trying to access whether or not the Remicade is working so I wouldn't think the infusion would mess with things.  As a matter of fact, I would think delaying the infusion would muddy the waters more...if inflammation is present is it there because of the delay or would it have been there anyway?  

O is scheduled for her scope 4 days after her infusion.  Doc said that is perfectly fine. 

Good luck!


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## kimmidwife

Glad to hear you hopefully figured out a cause for the rash! Fingers crossed that that is what it was from. Good luck with scopes! Keep us posted!


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## Farmwife

It's clean out time! :yfaint:
Saturday= Liquid diet
Sunday= Clear liquid diet and 10 capfuls of Miralax in 50 ounces of Gatorade
Monday= Scopes

Is 10 capfuls of Miralax normal for a 6 yr old? It just sounds like a lot.


She'll have Remicade on Wednesday.:thumright:


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## DustyKat

Good luck Fw! I hope all goes well for your little one with both the prep and the scopes, bless her. :heart: 

Sorry, I am no help with prep’s in that age group. 

Dusty. xxx


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## Sascot

Good luck for the scopes. Never used Mirilax, so no idea on that


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## crohnsinct

If that is what the doc ordered then I would think it is normal or at least what the doc thinks she needs.  For comparison, T is 11 and 100 pounds and took a whole big bottle, a whole small bottle and a few doses of yet another bottle. 

You have done this before so probably have it down but I don't mix it all up front in the same type of drink.  I split the total miralax dose over how ever many ounces they want her to drink and mix them each time.  This way she can change up her drinks and not get sick of one flavor.  So Sprite one time, water, Gatorade, Perrier...you get the idea.


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## my little penguin

^^^ yeah that DS takes a lot of miralax for prep.
Talking bottles 
Just make sure there is bum cream prior to every bathroom visit to save her skin 
Good luck


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## CarolinAlaska

We're a day behind you.  We were instructed to do a capful of Miramax every 15-30 min until she has 3 clear stools in a row.  It only took 1/2 of the total amount prescribed last time to reach clear stools.  The girl eats so very little as it is.


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## Farmwife

*Day 1 of clean-out comes to an end*

She ate two bites of oat meal for breakfast, 4 cups worth of soup broth and 5 jello cups.

That's it and she's still in  abdominal pain and nauseous. 

That's a great tips CIC about switching up the drinks. I'll try that.
 Most of the drink will go thru her g-tube but
 seeing she can't have more than a 1/2 cup at a time of food or drink latley, I think it will be slow going.


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## CarolinAlaska

Farmwife said:


> *Day 1 of clean-out comes to an end*
> 
> She ate two bites of oat meal for breakfast, 4 cups worth of soup broth and 5 jello cups.
> 
> That's it and she's still in  abdominal pain and nauseous.
> 
> That's a great tips CIC about switching up the drinks. I'll try that.
> Most of the drink will go thru her g-tube but
> seeing she can't have more than a 1/2 cup at a time of food or drink latley, I think it will be slow going.


Hugs.  I'm sorry it is so slow going and that she is suffering.

We are cancelling/postponing our scopes this week.


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## Farmwife

Well thank God it went easier than I thought.:hug:

We started at 6 am and by 12pm we are done with the miralax. 
I would pump 5 ounces at a time thru her pump, every 15 minutes. 
I'll also notice she started pooing liquid already. 
That happened a lot faster than last times.:smile:


I hoping if the scopes come back clean I can request to drop the sulfasalazine.
I think this is contributing to her nausea and head aches. 
My only hole in that theory is she was having these issues before the medicine 
but it seems to be a lot worse now.

On a sad sidenote her  EN spots are back and she has a new sore on her arm. :ymad:

I can't wait for Wednesday Remicade!


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## my little penguin

I thought the sulfanazine was to try to keep her arthritis under control ?
That was adding to getting remicade every 4 weeks ....
Woukdnt you stay on remicade every four weeks for a few months to determine how things are going ..?


----------



## Maya142

We were told headaches are common with Sulfasalazine, and if M had them they could reduce the dose. M did have some mild nausea in the beginning but it went away within a couple of days. Is Grace having the Sulfasalazine after a meal? That helped M.

Sulfasalazine didn't help M's joints at all, even in combination with high dose Remicade every 4 weeks. We added Imuran for GI issues and that seemed to help both her joints and her IBD.


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## Farmwife

Yes it was added for her arthritis but I don't see how the side effects are worth putting up with the slight (very little) benefit of staying on the drug.
Of course I could be totally wrong and it might be disease trouble instead.
I guess we'll find out more tomorrow.
But I'm not arguing with the logic of waiting for the new Remicade schedule to kick in.


So would Imuran replace the sulfasalazine or MTX or both?
Can Imuran help stop or reduce antibodies to Remicade?


----------



## Maya142

Yes, it can help prevent antibodies.

M was briefly on a low dose of MTX (.3 -.4 ml) with Imuran (75mg) but the MTX made her nauseous and wasn't helping because it was really too low a dose for her weight, so we dropped it. 

Initially though, Imuran was added to replace Sulfasalazine and she remained on Imuran and Remicade for a few months (and now is still on Imuran and Remicade and her joints are doing better).


----------



## kimmidwife

Good luck with the scopes tomorrow!


----------



## Sudsy

Good luck!  Hope you are able to get some good news tomorrow....


----------



## my little penguin

Good luck


----------



## Sascot

Thinking of you both, good luck


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## CarolinAlaska

How did it go?


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## Farmwife

Visible damage in the stomach. 
The rest looks visually fine but will have to wait until the biopsies are back.

I'm just feeling discouraged tonight.
 I thought her IBD was under controlled and 
even convinced myself her nausea/pain was from the meds.

:voodoo:My happy bubble was rudely busted. :voodoo:


----------



## Maya142

Sending hugs. For M's stomach we used Maalox (over the counter) and Carafate (which is a prescription) when things got really bad. 

Hopefully Remicade every 4 weeks will take care of everything!


----------



## Catherine

FYI, I have visible damage to my stomach but no crohn's.  It gives me heartburn which is much improve on a low gluten/lactose diet.


----------



## Farmwife

That's good to know Catherine.
She's on a PPI and low acid diet for a long time.
It just irks me that  that nothing seems to help.

The GI said base on the biopsy results that an MRE and or Pill cam will be scheduled.

At least we know why she hurts and can't eat much at a time.


----------



## araceli

:ghug: I hope biopsies show better results and remicade every 4 wks give you a much deserved break.


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## CarolinAlaska

Sorry to hear it.  Proposed makes J sicker - diarrhea and worse abdominal pain.  Not all gastritis is excess acid .  I'm hoping for big changes with Remi.  I hope it works fast!


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## Sascot

Sorry to hear that! Hope the biopsies come back with better news!


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## my little penguin

Hope the biopsy results get back soon


----------



## Tesscorm

Just catching up FW...  sorry, scopes didn't give you better news.  But, hope biopsies show that inflammation is limited.  :ghug:  :ghug:

Poor thing, she (and you!) really do deserve a break from all this!


----------



## Farmwife

CarolinAlaska said:


> Sorry to hear it.  *Proposed makes J sicker *- diarrhea and worse abdominal pain.  Not all gastritis is excess acid &#55357;&#56862;&#55357;&#56853;.  I'm hoping for big changes with Remi.  I hope it works fast!



What ???:smile:


----------



## crohnsinct

Couple of things....

First, inflammation in the stomach is not necessarily IBD.  When O had her scopes he said he found inflammation in the stomach but wasn't ready to claim it was Crohns until he got back biopsies because there could be so many other reasons for it.  

Second, when T had her scope she had inflammation in her stomach and numerous Crohns type ulcers.  I said "ah" and  doc replied, "but that isn't what is causing her pain.  Crazy to me that inflammation and ulcers weren't causing her pain.  He went on to explain that the pain was more likely disease activity from small bowel inflammation/disease. 

So I think you really have to wait for biopsies before you get discouraged or encouraged AND I think an MRE or pill cam is really needed to access what is actually going on.


----------



## Farmwife

I'm calmer today. 

The GI didn't rule out problems further down the track and perhaps it's backing up and causing issues.
I've always felt her issues were more in the small bowel.

Whatever is causing them I want it fixed so she can start to eat normal amounts again.
She has to have something small to eat almost every waking hour to keep her weight up. I'm so tired of  looking at food.:tongue:


----------



## crohnsinct

Wait!  I am confused...No comments FW!  

I thought she was getting most of her nutrition through her g tube.  Can't you do a continuous feed with that?


----------



## my little penguin

Yeah that ^^^^^
is she still on night feeds ?
Or wearing her backpack ?


----------



## Farmwife

She's was doing 70% food, 30% formula.
Now she's 50/50. At last she can still eat, just not a lot.
But I'm hoping with the Remicade tomorrow that things will get sorted out soon.


----------



## Maya142

FW that's what M's GI told us - that M literally needs to snack every hour! She is not supposed to let herself get too hungry because stomach acid can increase the pain. She's also still doing night feeds to get her weight up since she eats so little during the day. 

M recently had a gastric emptying scan which showed delayed emptying, and so now we're going add meds for that. That is what is at least partially causing her stomach pain and nausea.

I agree with crohnsinct - M's stomach inflammation has thought to have been gastritis from meds, not necessarily Crohn's inflammation. That said, M is on an NSAID so she does have a very good reason for having gastritis.

Hope the biopsies come back soon! Hang in there!


----------



## CarolinAlaska

Farmwife said:


> What ???:smile:


Prilosec (PPI) not proposed.  Stupid Kindle.


----------



## Farmwife

She had her Remicade yesterday.
For the first time in 3 1/2 weeks she had no pain meds given before bed and.............
:dusty:SHE SLEPT THRU THE WHOLE NIGHT!!!!!!!!!!!!!!!!!!:dusty:
 which means mom slept thru the night:dusty: which means dad slept thru the night:dusty:which means her brother slept thru the night:dusty: which means our distant neighbors slept thru the night:dusty: which means world peace:ylol:

:thumright:I LOVE REMICADE!:thumleft:


----------



## Sascot

Yay :dance: Glad it helped so quick!


----------



## Jmrogers4

Fantastic! hoping for many more sleep filled nights


----------



## CarolinAlaska

Wow that is amazing.  Praying that it gives her long-term relief!


----------



## Catherine

So happy for the Princess.


----------



## Farmwife

Thanks, it's just so AMAZING it works so fast for her.

Grace's teacher told me today that she see's such a different in her already.

I asked Grace if she felt different and she said yes that her body didn't hurt.

Than with her big blue eyes looking at me she asked if her boo-boos will go away?
I just smiled and gave her a doughnut. 
:tear:


----------



## Maya142

Aw I'm so glad it's working Farmwife :dance:. I hope Remicade takes care of everything :ghug:


----------



## my little penguin

Glad it's helping


----------



## DustyKat

What a brilliant update! :dusty: 

So happy for you all Fw and long may it continue for your princess, bless her heart. :heart: 

:mademyday: 

Dusty. xxx


----------



## Farmwife

The biopsies are in........................

anda:All's NORMAL!:applause:

The GI wants to do an MRE to make sure everything's ok and than and only than will she declare Grace in remission!:hug:

The visual damage is tares not ulcers. Still not good but might be from the vomiting and she is just slow to heal.

Still pray for her, we go to the eye doc today to see if the eye pressure is coming down. 
If it is I think we deserve a trip to Disney World!!!!!ika:

Man, this is the best I felt in awhile.:yoshijumpjoy:


----------



## Pilgrim

WOW!!! What great news!!!!! Hooray!!!!!


----------



## my little penguin

Great news !!!!


----------



## Suzysu

Hey! The best news ever!! I hope her remission lasts a very very long time! Hugs to you all!! Xxxx:dance:


----------



## Maya142

:dance:Great news!!! Hope it lasts forever!


----------



## araceli

So happy for you. Let's all celebrate and get drunk. :wine::beerchug:


----------



## Farmwife

Eye pressure still high end of normal at 29 (have no idea what the normal ranges are) but the eye doc gave her some allergy eye drops. He believes it related to her allergies. She is having horrible light sensitivity. Hopeful the drops will help.
Still no sign of inflammation. YA!!!


----------



## CarolinAlaska

Great news.  If anyone ever deserved to hear that report and get relief, it's her!


----------



## Tesscorm

Great news FW!!  :dusty:  I absolutely think Disney World is warranted!  

Really happy update!


----------



## Sascot

Wonderful! So glad things are looking up


----------



## Farmwife

I got the Path report of the biopsies' and OF COURSE I have been pouring over them.

Their is one question, the stomach biopsies say.............
*b. stomach, biopsy: moderate chronic epithelial changes. *

Is this a fancy way of saying Gastritis or that the inflammation is causing the change? 

Other than the stomach everything looked improved.:ghug:


----------



## lchele1203

They usually will numb the area now with lidocaine before sticking the IV .  I never feel the IV anymore.  Good luck.


----------



## CarolinAlaska

Farmwife said:


> I got the Path report of the biopsies' and OF COURSE I have been pouring over them.
> 
> Their is one question, the stomach biopsies say.............
> *b. stomach, biopsy: moderate chronic epithelial changes. *
> 
> Is this a fancy way of saying Gastritis or that the inflammation is causing the change?
> 
> Other than the stomach everything looked improved.:ghug:


Look at detailed report on the stomach, does it say more?


----------



## Catherine

Farmwife said:


> Their is one question, the stomach biopsies say.............
> *b. stomach, biopsy: moderate chronic epithelial changes. *
> :ghug:


I believe it means: moderate chronic damage to lining of the stomach.


----------



## Catherine

It also showing Chronic Gastritis.


----------



## DustyKat

The epithelium is the lining of the stomach but other than noting moderate chronic changes the statement does not stipulate the cause of those changes, that is inflammatory etc.

As CarolinAlaska has asked, does it say anything more? Does it go on to use terms such as... consistent with? 

Dusty. xxx


----------



## Farmwife

Sorry it took awhile to get back to this.

Here's the only other mention of the stomach.
_b. sections of the stomach show 3 fragments of gastric mucosa, one superficial epithelium, one body-type and the other antral-type. the superficial epithelium of the antral fragment is pseudo-villiform. the glandular epithelium is unremarkable. the lamina propria contains an upper limit normal complement of inflammatory cells no organisms are identified._

So it doesn't seem to have problems, so why does is it labled

_*b. stomach, biopsy: moderate chronic epithelial changes.*_

:ybatty:


----------



## CarolinAlaska

Good question


----------



## DustyKat

Farmwife said:


> Sorry it took awhile to get back to this.
> 
> Here's the only other mention of the stomach.
> _b. sections of the stomach show 3 fragments of gastric mucosa, one superficial epithelium, one body-type and the other antral-type. *the superficial epithelium of the antral fragment is pseudo-villiform.* the glandular epithelium is unremarkable. the lamina propria contains an upper limit normal complement of inflammatory cells no organisms are identified._
> 
> So it doesn't seem to have problems, so why does is it labled
> 
> _*b. stomach, biopsy: moderate chronic epithelial changes.*_
> 
> :ybatty:


I will take a stab at your question and having no qualification whatsoever to do so please take it with a grain of salt! :eek2: :lol:

I think the comment regarding the stomach biopsy is referring the section highlighted. 

Generally speaking anatomical pseudo landmarks mean changes have taken place in normal tissue. One of these causes can be inflammation e.g. pseudo polyps in the large bowel of those with IBD. So…is the pseudo-villiform of the superficial epithelium a result of moderate chronic changes (?cause), is that the link between the comments? 

Dusty. xxx


----------



## Farmwife

Dx back in question...again.
Since the scopes were clear and so was her MRI, which is great, the GI still can't say if its Crohn's or UC or maybe not either of those.:yfrown:

Ok Ms Dusty, good guess and not far off. :thumleft:
The sample "superficial epithelium" was taken from the section that had the visible tares  and tiny red spots located primarily at the top towards the side of her stomach. 
So the Gi said you can see these type of tares with forceful vomiting
 but Grace doesn't have that issue and why would it be chronic? 
The GI has no idea why!!!! 
She's at a loss but :shifty-t:said since everything else is clear she'll call it remission.:dusty:

Today we had Grace's Rheumy appointment. 
We were all disappointed :frown:the Remicade this time around didn't last one weeks. 
Grace fatigue is so bad now she will have to take Wednesdays off for a few weeks. 
The teacher told me it's even affecting her school work.
The doc said her SI joints and one ankle were inflamed.
We're all hoping with a couple more Remicade at 4 wk intervals that she'll feel a lot better.

So a good update:thumleft:
A confusing update:shifty-t:
And a bad update :thumbdown:


----------



## Maya142

Poor Grace  sorry her joints are causing so much trouble. She's quite young to have her SI joints inflamed, and she may just have aggressive arthritis and take longer to respond. The good thing is that you're treating aggressively and caught it early.

It took 6 months of high dose Remicade every 4 weeks for M before we saw a significant response, and even now her rheumatologist does not like the look of her knee and SI joints so unless something changes relatively soon, we'll be trying something new like Cimzia or Simponi. When M's arthritis is not under control fatigue is a BIG problem.

For some kids, it just takes time to find the right combination unfortunately :voodoo:

Glad the MRE and her biopsies were all clear!!


----------



## Jmrogers4

Sorry farmwife, hope the remicade soon provides some more lasting relief.  Poor Grace.


----------



## kimmidwife

So Yay for the good and Boo for the bad. Glad her intestines are showing improvement. Hopefully her joints just need more time on the remade and they will to start to improve. 
I still say time for a trip to disney world!


----------



## DustyKat

What a roller coaster Fw!  :ghug:

Is there any chance that the g tube is causing any of these changes? 

In my thoughts. :heart:

Dusty. xxx


----------



## Pilgrim

I was wondering that too, about the G-tube.


----------



## Farmwife

Anything is possible. 
I guess if her bolus feeds were to large it would expand her stomach to much and cause damage.
Perhaps the few times she did vomit the g-tube held down the stomach so it couldn't drawl up. She has a phobia about vomiting, maybe that's why?
But the gtube  and the damage section it not next to each other. 
There was no damage next to the gtube itself.:ybatty:

I haven't found any research about this type of problem and a gtubes.


----------



## Farmwife

Here's a question for anyone who knows?

If Remicade is wearing off to early will *upping* her mtx or sulfasallizine help to stabilize it or increase it's effectiveness?


----------



## Maya142

Yes, that worked for M (upping MTX not Sulfasalazine. I don't think Sulfasalazine did anything at all). She always did need Remicade at 4-5 weeks though.

Another option would be upping the dose of Remicade. We did that too and it worked for a while. Most GI's will go to 10mg/kg - that is the maximum FDA approved dose. M's rheumatologist is using up to 20mg/kg - there have been a few pediatric trials for JIA with this high dose. I was terrified at first but M really has had no side effects with high-dose Remicade.


----------



## crohnsinct

This issue with Remicade is that it gets metabolized by the body.  Some people (especially younger kids) metabolize it faster than others.  So the only way to get Remicade to last the whole time between infusions is to either increase the dose or shorten the intervals.  O was shortened to every 4 weeks and 10mg/kg at one point. 

Over time O has decreased to every 7 weeks and 6mg/kg.  Not so much because her metabolism changed but more because as her doc put it, "active inflammation for some reason sops up the Remicade really quickly".  So now that her inflammation has been handled she isn't "sopping" up the drug as much and we can decrease. 

I would imagine an increase in another drug that you are also using may help bridge from the time Remicade is at a zero level to when you can get the next infusion but that wouldn't really be desirable.  Remicade works best when kept at a certain level and when it drops too low you risk building antibodies.  This is why O's doc takes levels tests.  He wants to decrease her dose but not fall below that magical level.  He told me what it is and it is in a thread here somewhere.  

The thing I would be concerned about with Gracie is whether she is just losing response (there is enough Remicade but it just doesn't work for her) or if it is a levels issue (no more drug in  her system.  There is no point in playing with dosage and intervals if all along she is just losing response.  I would think you really need a levels test to determine which is going on here.  

If she has sufficient levels and it is a matter of Remicade doing the heavy lifting but not getting her all the way there, then you may also want to add a drug or increase a drug you are already using.   Remember we did this for O when we added EEN.  It was just the nudge to help get her all the way to remission.  We later added the mtx to help with joint issues that the Remicade wasn't handling. 

I hope this makes sense...I am on chlorine overload from the 7 hour swim meet!


----------



## Farmwife

Thanks Maya and crohnsinct

CIC, I'm going to read exactly what you wrote to my hubby. That's one of the best descriptions I've heard.

Her Rheumy doesn't see a need for that test .:mad2:
But....her GI brought it up but given the clear scopes and MRE the GI has left it alone.

I can't believe she's in remission in one area but others.

Than my dearest hubby asked point blank..... what if the docs are wrong and she has something else????
How in the world do you answer a daddy that's worried about his girl.:frown:


----------



## Maya142

I believe MTX has been shown to raise the trough levels of Humira by preventing antibodies. The higher the dose, the less likely antibodies were to form. It may be the same for Remicade -- I haven't looked. Here's a study for Humira:
http://www.internalmedicinenews.com...duction/1a0aecf9942a538c0d9225ee8d135725.html

I agree a test is a good idea. You need to see if Grace is metabolizing it fast or if it simply isn't working. She may need a different kind of drug for her JIA, particularly if it hasn't been called JSpA yet. Drugs like Actemra (IL 6 inhibitor) and Orencia (T cell) are options for polyarticular JIA. If it is JSpA, your best bet is an Anti-TNF.

For whatever reason, rheumatologists seem very hesitant to test levels while GI's do it often. Drives us insane! Could you ask for the test again? Use crohnsinct's explanation to justify it!


----------



## Maya142

M's IBD has (so far) been MUCH easier to control than her arthritis. It doesn't mean that she doesn't have IBD or AS, it's just that the IBD happens to be fairly mild while the AS has been very hard to control. It sounds like it's the same for Grace (except with JIA).


----------



## Crohnick

Before deciding to put our son on it I did a little digging to try to understand Remicade. This is what I learned.

Infliximab has a half-life of about 8 days +/- 1 day. This means that in 8 days, half of the drug decays in the body, whether or not it's actually done anything therapeutic by binding to its target TNF-α. In just over 2 weeks, 75% of the drug circulating in the bloodstream goes poof. 

The higher disease activity (and hence inflammation), the higher the amount of TNF-α that Infliximab binds with. So the more TNF-α in the bloodstream and expressed in cells, the more Remicade is "sopped" up by the body. Remicade has high stickiness to TNF-α which it neutralizes.

Some studies have show that maintaining a 3-7 ug/mL therapeutic trough level (lowest level before re-upping with infusion) is ideal and can help increase sustained responsiveness by 60%. So let's say if Remicade would normally work on you for 5 years, maintaining these therapeutic levels can increase that to 8 years. Responsiveness is a function of the antibodies you develop to the drug. 

So the trick is by periodic monitory of serum levels, not necessarily adjusting doses based on symptoms. My take is you really only know if you look at serum levels drawn before an infusion.


----------



## crohnsinct

Love that explanation Crohnick!  I looked up the trough level the doc was saying was his minimum and it was 4 so that fits in with the above.


----------



## crohnsinct

and btw - it makes me mad as heck that many insurance companies will not cover the levels testing.  They would rather we treat based on symptoms.  So in some cases we are just throwing more and more drug at a child when it isn't a levels issue at all but rather loss of response.  So we have not only left a child undertreated and are possibly going to incur a lot of expense and suffering due to complications but also spent a lot of money on a drug.  ERGH!  My doc and I are working hard to educate my insurance company on the usefulness of the drug.  At this point they are calling it "experimental"  

Thankfully Prometheus will decrease the charge of the test from $2,500 to $250 for those who are denied and exhaust all appeals.  Also, that charge is just for the first test.  All subsequent tests are billed at a much lower rate...list price $350...I will let you know if they bring that down once we ar through appeals.


----------



## Maya142

Farmwife, here is a study I came across - exactly what Crohnick was saying. In case you want to use it to convince the dr to order the Remicade levels test:
http://www.ncbi.nlm.nih.gov/pubmed/25724455


----------



## Farmwife

Thanks Maya for the paper. 
Here is the plan now. 
Next Remicade is tomorrow. If it stops working early once again, 
the doc will up the dosage of the Remicade for a couple infusions and than drop it back down.
Or if upping doesn't work to manage her disease.................
 we might have to move onto something else.

I will bring up the testing her levels as a must in my book!

Update
Stomach aches are coming back, 15 spots of EN on her legs, neck, lower back and wrist are in constant low level pain. 

*Come on Remicade.....work your magic again.*:hug:


----------



## Sascot

Hope it works great!


----------



## CarolinAlaska

I hope it works tomorrow too!


----------



## DustyKat

:ghug::ghug::ghug: and sending MEGA loads of luck for today! :goodluck: 

Dusty. xxx


----------



## kimmidwife

Hope it is going well!!


----------



## Jmrogers4

Thinking of you and Princess Grace today.  Hope all goes well


----------



## Farmwife

All went great during the infusion yesterday but
her lower back at the bottom still hurts (SI joins?) but all other pain is gone and even her legs look better from the EN spots.

So here's praying that all will go well for the next four weeks.


----------



## DanceMom

Do you pre-medicate with Solumedrol?  A does, and I find that it really seems to give her that boost she needs to feel better (and it does a wonderful job of easing side effects, of course).

I hope she has a happy and healthy 4 weeks!!


----------



## Farmwife

DanceMom said:


> Do you pre-medicate with *Solumedrol*?  A does, and I find that it really seems to give her that boost she needs to feel better (and it does a wonderful job of easing side effects, of course).
> 
> I hope she has a happy and healthy 4 weeks!!


What is that? Never heard of it.


----------



## Maya142

That does sound like her SI joints Farmwife. Hopefully the Remicade will take care of it.

Solumedrol is a steroid. Some doctors give it to prevent a reaction to Remicade, while sometimes rheumatologists give it to ease symptoms. 

M gets a relatively low dose of solumedrol with her Remicade every 4 weeks. It used to really help, and the day after the infusion was like magic but now it doesn't seem to do much. In her case, her rheumatologist added it to prevent a reaction, it just was an added bonus that it helped her joints since it is a steroid.


----------



## Farmwife

Grace went to bed after having a few hours of horrible knee pains.:voodoo:
 She also got in trouble at school for her attitude. :blush:
I'll give it to Monday and then see what will happen.


----------



## Tesscorm

I hope you see improvement!  And, re the attitude...  who wouldn't have a bit of an attitude when they're dealing with pain and discomfort so often.   I hope her teachers can be understanding. :ghug:


----------



## araceli

Praying that she feels better soon.


----------



## Farmwife

She was GREAT today! :dance:
It's late evening here and she's still playing and laughing.
It's great to see and hear.

I'm thinking she might have a down day after infusion. 
With every 4 weeks that might be a little hard on her system.

More great news........................
Her Rheumy will start the withdrawal of her Sulfasalazine (this was added as a bridge therapy), hopefully  over a couple months and back down her mtx to her fist dosage.


----------



## CarolinAlaska

Great news!  I'm so glad for the good day!


----------



## Maya142

M used to be like that too - tired and a little achey the day after Remicade. Seems like it's more common with JIA than with IBD, because I've met many parents of JIA kids who say the day after Remicade is no fun. At our infusion center, they even warned us about it!

I'm SO glad she's feeling better.


----------



## Sascot

So good to hear she is doing well today. Just nice to see our kids happy


----------



## kimmidwife

Glad to hear she had a good day yesterday hope it continues!


----------



## Farmwife

Update:

:dance::dance:Remicade is going well. She's made it the whole four weeks.:dance::dance:
We still have little blips but have managed to get over them.

I'm going to ask/request/demand for her Remicade levels to be checked.
I would feel better knowing we might head off any possible flare ups.

Do they have to test the levels at any certain date or time?


----------



## crohnsinct

Yes.  They have to test them just prior to infusion.  This will tell them what the absolute lowest level is in the body prior to the infusion.  

Remember, most insurance companies do not cover Remicade level testing yet.  If the doc doesn't have a good reason ie: to determine why she is still exhibiting symptoms prior to infusion, you will be hard pressed to get them to reconsider covering the test.


----------



## Farmwife

Thanks CIC,
I'm hoping to get it covered because her arthritis is still active  (both knees and SI joints) but not horrible.
The next step is upping Remicade to it's max but would prefer the test be done first.

It just frustrates me when a good test has to be fought for. 
I'm sure getting steroid injections aren't cheap either, but Insurance will pay for that.:ymad:


----------



## Maya142

Steroid injections (if not done under sedation) are actually surprisingly inexpensive. But of course, with sedation it certainly adds up.

I hope her rheumatologist agrees to the test - if not, we have gotten our GI to order tests for M's joints, which is silly but GI's seem more comfortable with this test.


----------



## crohnsinct

That's just the thing.  The insurance companies do not consider it a "perfectly good test".  They consider it still experimental.  Prometheus, our GI and I are still fighting.


----------



## Farmwife

Maya, I would demand sedation.
For some reason I'm getting nervous about Grace getting post traumatic syndrome some day.
I want to spare her what I can. 

I'll pay if we have too but I'll be mad doing it.:ymad:


----------



## Maya142

Insurance should cover sedation at her age! You should definitely get sedation if you can. For SI joints we still get sedation and M is 18! My older daughter, S, may get SI joint injections in the summer and is going to ask for sedation and she's 21! They are not fun shots.

 A knee isn't quite as bad, but Grace is so young and already is going through so much.


----------



## Sascot

Yay, so glad she doing well!


----------



## Mehita

Farmwife said:


> Maya, I would demand sedation.
> For some reason I'm getting nervous about Grace getting post traumatic syndrome some day.
> I want to spare her what I can.
> 
> I'll pay if we have too but I'll be mad doing it.:ymad:


Not to add to your fears, but that's exactly what DS was seeing a therapist for last summer - PTSD related to all the medical crap he's gone through. I wholeheartedly agree with you, especially with kids so young.


----------



## kimmidwife

Mehita,
I just saw this being discussed elsewhere. PTSD from medical procedures.
I agree FW we should try to help them avoid whatever extra trauma we can.


----------



## Maya142

We have PTSD due to medical stuff too  - the SI joint shots (even though she was sedated) were a horrible experience. But now we know what to expect (pain got worse before it got better). Knee was a piece of cake.

Hope Grace starts feeling better soon.


----------



## Farmwife

Back with another happy update.

Had a meeting with Grace's teacher and she's thrilled with Grace's attitude, work and health.

I know things (by God's grace) is getting better but it's sooooo nice to hear from someone else.

So tonight I'm very happy for Remicade and spring.


----------



## Farmwife

Well the little blips have turned into road bumps.:ack:

Fatigue, abdominal pains, joint issues and Erythema Nodosum (EN) have reared up in the last two weeks.

Here's the plan........

-Her Rheumatologist agreed to test the Remicade levels :wink:
and I asked for her Iron/ferritin/Vit. D to be checked.

-Up Remicade if the test come back low or 
if vitamins are low, supplements.

If all test come back normal .........I'll cry and wonder what's next.


Also, does anyone's child have Erythema Nodosum? 
It's so painful and quite ugly, looks like I kick my baby. 
I've done research but there's just not much out there. 
It's just strange that is keeps afflicting her but disappears a few days after Remicade, only to turn up again a couple weeks later.
 It's been 6 months already.

Remicade this week!:rosette1:


----------



## kimmidwife

FW,
Did she ever get a full immune work up with an immune specialist? I don't remember if you ever got one for her. Maybe. It would explain some things. We are going again to see the immune specialist because our GI is convinced something else is going on.


----------



## Sascot

Glad Remicade is this week! Hope it helps as well as usual.


----------



## DanceMom

A has had EN since she was about 2. Before we knew what it was I took her to the Pedi several times, very concerned. I was worried that when she started school I'd be reported for abuse. She looked awful. She still gets them from time to time and I cringe when I see them popping up.


----------



## Farmwife

Thankd guys.

Kim, Grace had a full work up at Mayo. Nothing showed. I might ask again to have her tested.

DanceMom, do you think the EN is connected to what she has now?

*HELP!*
The Rheumatologist nurse is going to see if my insurance will cover the Remicade level test (forget the name). 
However if Grace gets the test done before I hear back and it's been denied does that mean I owe the hole cost or just the $250 that some of you have paid?:shifty:
Remicade is tomorrow!:ywow:


----------



## crohnsinct

You technically owe the $2,500 BUT Prometheus appeals on your behalf.  Their policy thus far has been to exhaust all appeals and then if ultimately denied to write down the cost to $250.  Caveat is "policy".  Companies can change their policies any time they want.  I would call ahead and get them to quote you the policy in writing.  This way if they change it you can say that you went forward with testing based on that information.  It still doesn't mean they can't change the policy but it makes it less likely they will make you pay the $2,500.  

Another caveat...as I said in the thread specifically about this topic. Your insurance may approve it but at a reduced cost.  Prometheus is likely an out of network lab for most.  So, let's say the reduced cost is $1,000 and you have a $1,000 out of network deductible...you are now on the hook for the whole $1,000, or whatever your out of network deductible is and then the percentage of the rest...which is usually a bit more than in network.


----------



## Farmwife

Thanks CIC
We might hold off if the insurance lady at the infusion  center can't get us answers.  It would be ashamed if we couldn't get it done but it happens.

At the center now, regular nurse at conference, new nurse seems overwhelmed with Grace's file. Grace seems more worked up and she hasn't even done the IV.:ack: Oh boy, it might be one of those days.


----------



## Mehita

Good luck today!

We just did a Remi levels test. I'll let you know what comes of the financial side. I guess I didn't even really think to ask what's covered by insurance. We just went ahead and did it. I might be regretting that...


----------



## pdx

Hope it goes well today.

Just a thought--can you have them draw the blood for the levels test and then wait to send it in until you find out about the insurance?


----------



## Farmwife

Lol pdx, that's what they've done.
 Still waiting to hear.
 I don't no how long they can keep the vital of blood before it's unusable.


----------



## crohnsinct

You should also be calling Prometheus and asking them for the particulars of their current policy.  This way if it is still the same as when we did the test for O, you can go ahead and have them send it in. BTW O's test was a year ago and we still are not at the billing stage.  Still going through appeals with the insurance company. In the meanwhile she has had a second test.


----------



## my little penguin

Also there are other clinics that may be in network for you that also run the levels 
I believe mayo is one of them


----------



## Farmwife

Still waiting to hear what the insurance says about the Remicade test.

Ok, some labs have me wondering what it means.

Her Vitamin D was flagged but never gave a normal range. It was 23ng /ml.
What should a 6 year old be at?

Ferritin is still trending down at 15 ng /ml.............range is  12-234
IBC saturation: 23%  ................................................range is 15-50
Iron 71ugh/dl  ..........................................................range is 39-167
Iron binding cap: 302ug/dl ......................................range is 225-405

HBG :11.7g/dl ............................................................ range is 10.0-15.5

Could anemia cause only her ferritin to dip and not the rest of the iron study?

I'll be contacting the doc tomorrow. :hug: Hopefully they'll know if the test went thru.


----------



## Catherine

Have you got b12 & folate?

Are any of the other iron going up?

Ferritin is a marker of inflammation.  If it had previously been acting as such you could now be getting a true reading.  Ferritin will never give a false low but when acting as a marker of imflammation it can give a false high.

These results don't look like Anemia to me, as the hemoglobin level is in range.  This doesn't mean I would be happy with the ferritin level as it is low normal and heading in the wrong direction.


----------



## kimmidwife

FW,
I hope they approved the test. Those numbers don't look to bad to me at all. Looks like her anemia is much better. The only one I would be slightly concerned is the vitamin D. That is a little on the low side. I am not sure exist numbers for kids but for adults we want it about 50.


----------



## Farmwife

Catherine her ferritin level hasn't been taken in over a year plus.
It was in 30's. I'm not to worried about it right now.
Thanks

Sulfur smelling burps, abdominal cramps and feeling grumpy is what Grace has going on today.:yfaint:
Her cramps were real bad in town and still took awhile after getting home to go away.

:sign0085:What in the world causes sulfur burps and cramps????

I'm trying to stay positive about Remicade but I'm starting to get and awful feeling again. I pray I'm wrong!


----------



## kimmidwife

Sorry to hear. I don't k ow what would cause sulfur burps.


----------



## Farmwife

We got the test results back on the Remicade levels and the nurse said she shows no signs of antibodies. YA!!!!
But I'm confused, :ybatty:I thought it would tell us what her levels of Remicade were ?
Meaning did she still have some in her system before the next infusion.

Did I get this mixed up? Are there 2 test?:yrolleyes:


----------



## my little penguin

When they do the test the report comes back with levels and whether there are antibodies or not .
DS had the test before starting remicade due to allergic concerns so I know it's a combo test not a test where you can order one or the other


----------



## pdx

Yes, the test is for both Remicade and antibody levels.  Glad to hear that there were no antibodies!


----------



## Mehita

Yup, they're done in the same test. I wonder if she didn't mention anything because everything was fine?


----------



## momoftwinboys

Good news on no antibodies!


----------



## SupportiveMom

It was just 1 test for D too. 

So glad there was no antibodies!


----------



## Pilgrim

I am happy her levels were good but also just wanted to send you some hugs. It seems like you are thinking that things aren't quite right, and I understand how frustrating it is when the answer doesn't come quickly. Our VEO-IBD kids when still so young - well we watch them so closely because they aren't too independent yet. The "little" things like sulfur burps can be the first signs of things snowballing. It's hard to not worry.


----------



## Farmwife

Anal fissure from hell!!!!
Today she cried for me to get to the bathroom and she showed me her toilet paper with blood. She was so worked up but said I could look.
I saw a very deep fissure at the 12o'clock position that keeps bleeding slightly.

*Will deep fissure heal on there own or will it take more intervention????*
Waiting for a call back from her GI.

Also if that wasn't enough Grace has had 3 issues with her toes turning red and painful. it comes and goes within hours. Her eczema is still on her toe.

I've looked at similar pics on Google (I know mistake) and vasculitis(sp?) keeps popping up.
I sure hope not but does it sound familiar to anyone?


----------



## kimmidwife

Sorry FW. That really stinks about the fissure. 
Don't know about the toes.


----------



## Jmrogers4

Poor girl, when is next infusion?


----------



## DanceMom

Has she had an MRA or CT angiogram?  That may be the next step if you're thinking vasculitis.  A had an MRA which can only rule out large vessel vasculitis.  We may have to look into the CT angiogram at some point if the new Immunologist suspects vasculitis.


----------



## Farmwife

Update:

Has anyone heard of *Reactive Inflammation*????

I guess the doctors (Rheumatologist & Dermatologist) believe Grace is having.
The fact is that Remicade is working but the body is still "fighting it".

I know nothing about this so I couldn't ask any intelligent questions at the apoinment.
I will be talking to the GI about what she feels about this.


----------



## Maya142

Never heard of it, but I would be very interested to hear about what you learn. Maybe that's why Anti-TNF's don't work well for some kids.


----------



## Mr chicken

Never heard of it...
Are you sure it wasn't reactive arthritis ???
 Ds 's system fought remicade
He ended up with drug induced rashes .....


----------



## Mr chicken

> reactive inflammation
> Etymology: L, re + activus + inflammare, to set afire
> an inflammation that develops as a reaction to an antigen.
> Mosby's Medical Dictionary, 8th edition. © 2009, Elsevier.


From
http://medical-dictionary.thefreedictionary.com/reactive+inflammation


----------



## Sascot

Sorry to hear that. I have heard of it, but don't know much about it. Hope she can still carry on with the Remicade


----------



## Farmwife

Sorry for the late reply. The farms been busy! :yfaint:

He said reactive inflammation multiple times but I agree it fits with reactive arthritis definition.

http://www.mayoclinic.org/diseases-conditions/reactive-arthritis/basics/definition/con-20020872

_The signs and symptoms of reactive arthritis generally start one to three weeks after exposure to a triggering infection. They may include:_

_Pain and stiffness. The joint pain associated with reactive arthritis most commonly occurs in your knees, ankles and feet. You also might experience pain in your heels, low back or buttocks.
Eye inflammation. Many people who have reactive arthritis also develop eye inflammation (conjunctivitis).
Urinary problems. Increased frequency and discomfort during urination may occur, as can inflammation of the prostate gland or cervix.
Swollen toes or fingers. In some cases, your toes or fingers might become so swollen that they resemble sausages._

Also it's states where it can come from.....

_Reactive arthritis develops in reaction to an infection in another part of your body, often in your intestines, genitals or urinary tract. You may not be aware of the triggering infection because it may cause only mild symptoms or none at all._

*Is Remicade considered an "antigen"?

* I need to call the GI and get her take on this.
Grace's blood work, urine samples and/or stool samples never show infections of any kind.

No further plans were made by her rheumatologist.
He wants to carry on with Remicade for a few more months to see if she gets a better response.

Unfortunately my dream of backing her off from every 4 weeks to every 8 just went out the window. :cool2:


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## Pilgrim

We plan, Crohn's laughs.

:ghug:


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## Farmwife

Pilgrim said:


> We plan, Crohn's laughs.
> 
> :ghug:


Truer words have never been spoken on this forum. :hug:


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## Maya142

Reactive arthritis is considered a type of spondyloarthritis Farmwife. It's arthritis that is triggered by an infection. Did Grace have some sort of infection before she developed JIA?


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## Farmwife

Thanks Maya
Grace had the flu at 3 months of age and c. diff around 2 yrs of age.
Thankfully she's never had huge illness.....not even an ear infection...that I can recall.

The Rheumy made it sound like the reactive inflammation is secondary to the JIA.
Can you have both? 

Can gut inflammation alone  (no virus present) cause a reactive inflammation?

I'm so confused by this and I can't find any good articles about my questions.

The Rheumy is already talking about the next change to replace mtx and/or sulfasalazine.
But he said he's hesitant to change out of fear of "angering" her JIA and/or IBD.
What a great spot to be in, eh?


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## Maya142

Reactive arthritis is a type of arthritis - just like JSpA or AS. I don't know what reactive inflammation would be, but I assume it is different from reactive arthritis. In kids, reactive arthritis, if it sticks around (after the infection is treated), it becomes like JSpA. The classification of which type of spondyloarthritis it is doesn't make a huge difference - the treatment is the same.

He might just be saying that he thinks she has JSpA or some type of spondyloarthritis? Since her SI joints are involved that makes sense.

What is he thinking of replacing MTX/sulfasalazine with?

I really don't know anything about reactive inflammation/gut inflammation and how that figures into all of this. I do know that something like 70% of kids with JSpA have subclinical gut inflammation.


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## Mr chicken

So this is how it goes
All kids under 16 at dx are dx with JIA
Then you get into subtype
The sub type under JIA would be 
Juvenile spondyloarthritis ( JSpA)
Under JSpA there are multiple subtypes
Including reactive arthritis , spondylarthritis associated with inflammatory bowel disease etc....

So if she has reactive arthritis
It would be JIA -JSpA-polyarticular reactive arthritis of the ( fill in the joints)

DS has JIA -JSpA -polyarticular spondyloarthritis associated with inflammatory bowel disease in his hands , knees and wrists that runs independant of crohns flares

So to make it easier most docs say JSpA or JIA 

As Maya said its just classification it doesn't change the arthritis at all 

Once she has a offical dx of Ibd tgat classification of arthritis could change again
But it does t change the arthritis  or the meds only the disease activity does that


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## Maya142

And of course MLP just explained that better than I ever could 
Thanks MLP (or Mr chicken)!

M has JIA - JAS in her knees, hips, SI joints, elbows, hands, wrists, heels, jaw, lumbar spine and ribs.
S has JIA - JSpA (now technically adult AS) in her knees, hips, SI joints and ankles.

We have tried both Arava and Imuran to replace MTX/Sulfasalazine. M's joints did well on Arava but it caused some side effects (and doesn't treat IBD). Imuran is working ok in terms of side effects but not sure it is doing anything for her joints (I do think it is helping her IBD). We've also tried Plaquenil and it did nothing.


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## Farmwife

Thanks Mr chicken (mlp) are changing it back or do I have to get use to the new name?:shifty-t:


That's it Maya it was Arava! I forgot the name of the med he might switch her too. 
What were the side effects your dd had????

The rheumatologist concerned because that drug can cause low wbc count among others and Grace is already low. But he said it's still a possibility.


I'm putting a letter together to get better clarification on are meeting. 
He did move up appointment up from every 3 months to every 2 months.
If theirs cause for concern then if flew over my head during the appointment.:yfrown:

Also her IC ( inflammation) of the bladder is back. :thumbdown: so back onto her bladder medicine.:thumbdown:

If it was truly "reactive inflammation" caused by a virus why are they not suggesting an antibiotic?

Maybe I'm over thinking this and need to get back in my happy bubble! I love my bubble!:rosette2:


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## Maya142

M had stomach pain and weight loss BUT she was on it right before being diagnosed with Crohn's. At the time, we blamed the Arava and switched her back to MTX, but she was diagnosed with Crohn's right after that, so we don't really know what was the Crohn's and what was the Arava. It was working really, really well for her joints - in fact, we may try it again.

My older daughter had diarrhea, nausea, weight loss, hair loss and fatigue with Arava.  She had kind of an extreme reaction to it. She was on Arava for 3 months or so before we decided MTX was more effective for her and had fewer side effects.

Neither had issues with their WBC but they never do. 

Good luck!


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## kimmidwife

Sorry to hear FW! I was away for a few days so just catching up!


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## Farmwife

Just curious, does your kids complain about being cold all the time.... in summer?
Grace keeps saying it even through its warm.:eek2: it new for her.


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## Chester31

My son feels the cold when he's anaemic.


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## Mr chicken

JIA has autonamic dysfunction cold is part of that 
Just let her rheumo know 
Nothing to do about it


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## Farmwife

Interesting to both!

Her rheumatologist told me that Grace is a" touch" anemic but didn't tell me to give her anything.


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## Mr chicken

Exercise /fluids( warm -non cafenated herbal teas for ds) and massage were what he used to improve things and get rid of the rashes


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## crohnsinct

Yeah O is ALWAYS cold.  Says she isn't going to college north of the mason Dixon line.  With her fainting issues I suspect she may have a touch of autonomic dysfunction but there really isn't much you can do about it.


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## kimmidwife

Caitlyn also has that! Our new pain doctor who is a neurologist said it is part of the neuropathy that people with Crohn's can get.


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## Pilgrim

H was like that when she was flaring. I thought at the time that it was due to her iron levels being low. She had to wear a sweater in the heat. 

Is Grace anemic?


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## SupportiveMom

My D has the opposite problem. Always hot. Even in winter. Never was like this before crohns. So it's either puberty or IBD. Cold...could be circulation. Do her hands and feet feel cool?


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## DanceMom

A tends to get hot flashes. No idea why. Could just be her normal.


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## crohnsinct

O got hot flashes...every doc I have mentioned it to says, "oh that's interesting" and moved on.  

Now T gets them.  Just a big old hmmm.


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## upsetmom

Interesting about the hot flashes. M gets them too!....I've always put it down to her ovarian failure but maybe its her crohns.


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## Farmwife

Pilgrim said:


> H was like that when she was flaring. I thought at the time that it was due to her iron levels being low. She had to wear a sweater in the heat.
> 
> Is Grace anemic?


Yes the rheumatologist said she was a touch anemic but didn't say to do anything about it.:shifty-t:

Can bring slightly anemic go away on its own?


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## kimmidwife

FW,
It depends how slight, do you know her numbers?


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## Pilgrim

Farmwife said:


> Yes the rheumatologist said she was a touch anemic but didn't say to do anything about it.:shifty-t:
> 
> Can bring slightly anemic go away on its own?


I would want to address it just to keep it from getting worse. Maybe you could call and ask if you should supplement just to put her up well into the range?


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## happy

Farmwife,
Not to worry you--but I developed ischemia in my eyes which caused small blind spots called 'cotton wool spots' from being just slightly anemic when I was really ill and on the EEN. Once I was on weekly iron shots they went away. Some people are not very symptomatic until they are really anemic; others have symptoms at the low levels of normal. I also was very fatigued, chilled, light-headed, irritable and had problems with my memory and difficulty with math skills.


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## kimmidwife

Happy that is a really good point. I know people severely affected by slight anemia and others walking around fine with severe anemia. FW sounds like you need to address it with the doctor.


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## Farmwife

Farmwife said:


> Still waiting to hear what the insurance says about the Remicade test.
> 
> Ok, some labs have me wondering what it means.
> 
> Her Vitamin D was flagged but never gave a normal range. It was 23ng /ml.
> What should a 6 year old be at?
> 
> Ferritin is still trending down at 15 ng /ml.............range is  12-234
> IBC saturation: 23%  ................................................range is 15-50
> Iron 71ugh/dl  ..........................................................range is 39-167
> Iron binding cap: 302ug/dl ......................................range is 225-405
> 
> HBG :11.7g/dl ............................................................ range is 10.0-15.5
> 
> Could anemia cause only her ferritin to dip and not the rest of the iron study?
> 
> I'll be contacting the doc tomorrow. :hug: Hopefully they'll know if the test went thru.


This was the labs. Doesn't look to bad but her numbers are trending down. :yfaint:

Thanks Happy, Grace gets eye check ups every 4 months.

I think this all had to do her poor little body being attacked. 
Now she has a yeast infection.:yfaint:


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## kimmidwife

I guess that is why he really wasn't worried yet because they are still normal range. I guess he wants to wait and see. What are you doing for the yeast?


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## Catherine

Farmwife

The labs are not showing iron deficiency anemia.  For it to be classed as anemia the haemoglobin would need to be out of range.

It is heading forward iron deficiency without anemia.  

What is the IBC saturation number doing?

Are all the iron number trending down?


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## Maya142

We have done the wait and see a lot for anemia. Hang in there!

M also is always freezing. She has Raynaud's but it's not just her hands and feet that are cold. She has been like this for years. We use heating pads a lot for her joints and they help to warm her up!


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## Farmwife

I don't have the numbers with me Catherine.
I have to ask for the iron to be checked each time and there was 6 months in between. In a month and a half I might ask for it to be checked again. Right now I'm not sure if the is causing her cold feeling..... more than likely it's her JIA.


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