The Little Farm Girl and onto Remicade

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

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! ;)
 
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
 
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.
 
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?
 
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.
 
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!
 
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:
 
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!
 
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).
 
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.
 
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.
 
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.
 
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:
 
:ghug::ghug::ghug: and sending MEGA loads of luck for today! :goodluck:

Dusty. xxx
 
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.
 
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!!
 
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!!
Click to expand...

What is that? Never heard of it.
 
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.
 
:( 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.
 
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:
 
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.
 
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.
 
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?
 
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.
 
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:
 
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.
 
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.
 
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:
 
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.
 
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:
Click to expand...

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.
 
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.
 
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.
 
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.
 
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:
 
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.
 
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.
 
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:
 
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.
 
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.;)
 
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...
 
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?
 
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.
 
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.
 
Also there are other clinics that may be in network for you that also run the levels
I believe mayo is one of them
 
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.
 
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.
 
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.
 
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!
 
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:
 
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
 
Yes, the test is for both Remicade and antibody levels. Glad to hear that there were no antibodies!
 
Yup, they're done in the same test. I wonder if she didn't mention anything because everything was fine?
 
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.
 
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?
 
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.
 
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.
 
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.
 
Never heard of it...
Are you sure it wasn't reactive arthritis ???
Ds 's system fought remicade
He ended up with drug induced rashes .....
 
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
 
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:
 
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?
 
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?
 
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.
 
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
 
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.
 
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.:cool:
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:
 
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!
 
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.
 
Interesting to both!

Her rheumatologist told me that Grace is a" touch" anemic but didn't tell me to give her anything.
 
Exercise /fluids( warm -non cafenated herbal teas for ds) and massage were what he used to improve things and get rid of the rashes
 
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.
 
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.
 
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?
 
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?
 
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.
 

Similar threads

B
Really strange experience with first remicade infusion
Replies
7
Views
4K
rrhood1
rrhood1
N
Remicade side effect?
Replies
2
Views
2K
araceli
A
N
Frustrating. reaction!!!
Replies
3
Views
2K
Novice
N
N
Curious for input
Replies
6
Views
1K
Novice
N
blobbyknobby
Invisible Disabilities...
Replies
1
Views
1K
ronroush7
ronroush7

Latest posts

Back
Top