Another year older and a new Dx.

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

I had tmj.
I ended up having the surgery to realign the jaw.
It's obvious I probably have eds but haven't gone to the doc yet.
That's a good point and will text her rheumatologist to ask what they think?

Mri is to rule out chiari or tethered cord.
 
So TMJ is just a short form for temporomandibular joint. Everyone has a TMJ ;) (two actually).

You can have TMJ arthritis - which could be degenerative (like osteoarthritis) or inflammatory (like in JIA).

It's VERY common in JIA - some studies show that something like 80% of kids with JIA have inflammation in their temporomandibular joints. M's MRI showed active inflammation and erosions, so we did steroid injections. She had jaw pain, difficulty opening her mouth wide and ear pain (referred from her jaw). Headaches are also common.

Then there is TMJ dysfunction - essentially pain without arthritis in the joint. That is usually treated with a night guard and physical therapy, sometimes myofascial trigger point injections.

With EDS, it is likely there is osteoarthritis (wear and tear) but with JIA, it will be inflammatory. An MRI would tell you if Grace has TMJ arthritis and what kind (considering she has both EDS and JIA).

The kind of jaw arthritis associated with JIA can progress very quickly and can be hard to treat. We know several kids who have had to have jaw replacements, which is a major surgery.

M now needs surgery to clean out her temporomandibular joints. You would need to see an oral and maxillofacial surgeon for Grace if she does end up having TMJ arthritis. Your rheumatologist can refer you if necessary.
 
Thanks Maya
They tried everything on my jaw before the big surgery but nothing helped until they realigned it. I had 8 minor surgeries before hand.
Now it's much better.
I hope it goes well for your girl.

I contacted her rheumatologist about this issue.
Waiting to hear back.
Since there are already going to do the mri on her neck and base of her skull, they can add the jaw I would think.
 
I would guess they can add it. Might be a very long MRI though, Grace will have to be in there and lie still for quite a while. I hope they have movie goggles for her!
 
:dance:Rheumatologist approved the mri for the jaw also.
Maybe they've learned to just give me what I want and I'll go away. :rof:

Just kidding, her rheumatologist is amazing. :)


We're waiting for her pain doc to call back.
I want to stop her Topamax because it's not helping much with her headaches and her personality has changed. ...not for the better. :ymad:
 
Farmwife
Is herJIA under control ?
I ask because Ds will get daily headaches and migraines when any of his autoimmune diseases are flaring

We threw migraine meds at it but it doesn't stop them except for rescue meds (imitrex)

Once we got the flares under control the headaches stop

Has she seen a neurologist who specializes in pediatric migraines /headaches ?

They can help
 
Her jia has never controlled.
No neurologist yet. No did said shying yet about going to one
Her pain doc is the one dealing with the med side of things.
This is just do new for her and sudden.

Edit: Never type a message in the wee hours of the morning when your half awake. Lol
 
Last edited:
Pediatric Neuro is best to handle chronic headaches/migraines
They know the why
And which meds work best for chronic headache
 
Does the rheumatologist have a plan B if Remicade every 2 weeks fails? I'm asking because if she's never been in remission so far, you may need to try a different kind of biologic.
 
Their is a plan b but we've seen great progress with Remicade.
I believe she was almost in remission before the insurance withheld it for 3 months.:ymad:

I'd assume a neuro is in her future.
Her Pain Doc is the head of a large pediatric rehabilitation center and is quite controlling and protective of Grace's care (he's the eds expert) but I don't believe he would hold back on sending Grace to a neuro.
But I'll ask when his nurse calls on Tuesday.:smile:
I have this feeling that it all hinges on the mri results.

I haven't been this nervous about a test in awhile.:(
 
Yes, I think treatment will completely change if she needs surgery for a chiari malformation or tethered cord :(.

If it's jaw inflammation, then upping Remicade might do it or you can do steroid shots into the joints.

Fingers and toes crossed for Grace - keep us updated.
 
I am glad they approved for the MRI. Finger crossed for answers Caitlyn also has an issue with headaches from inflammation. It was recommended we try an allergy medicine as they say that can help. We stared he on Claritin and she has been having much less headaches.
 
Kim, she's been on allergy meds for years. Zertec woresults best for Grace but over the years we've tried different ones. Thanks
 
Grace stated her biweekly Remicade today.

Does anybody here do rapid infusion?

I haven't asked her rheumatologist yet, just wondering.
It'd be nice not to be here half a day ever other week.
 
Farmwife said:
Grace stated her biweekly Remicade today.

Does anybody here do rapid infusion?

I haven't asked her rheumatologist yet, just wondering.
It'd be nice not to be here half a day ever other week.
Click to expand...

Don't worry about Grace because Remicade can be effectively for the disease!
 
Jack has done them for the last 3 years except for the last one (but I've already vented about that). We love them. It was 15 minutes for the solumederol and exactly one hour from when they start the remicade. We were usually there for about an hour and a half, just depends on how long the pharmacy took since dosage is weight based they would weigh right when we got there and order meds.
We always had his appointments at 3:00 and were out before 5:00 as opposed to appointments at 12:30 and out by 5:00. He has never had any reactions so it has worked out really well for him.
 
So my children and I got our flu shots yesterday.
Today...... all of us have flu like symptoms, to the point Grace is laid out on the couch.

If this is caused by the flu shot does that mean we can spread the flu?
 
You Can't get the Flu from the flu shot
It's a dead virus
The flu shot can however take up to two weeks to become effective so you can still get the flu during those two weeks

You can also have a reaction to the flu shot (egg allergy )
And other reactions so it would be good to call her pcp
 
Everyone in my family always feels a little yucky the day after the flu shot--headachy, sore muscles. It goes away within a day for us.
 
Grace will be switching from Imuran back to mtx.
Her rheumatologist is wondering if Imuran is causing some of her issues like head aches, low immune system and fatigue.


My question is.......
Can meds start having side effects after years of being on them?

She'll be seeing a neurologist in the new year.
But if this could help, that would be amazing!
 
Is her inflammation in remission for all her issues ?
If not we see headache fatigue etc..,until those are under control
Have they looked at ivig ?
 
Lol, I'm starting to think the world of remission is just a mythical land she'll never reach.
No not in remission yet.
But is doing better jia wise.
Her ibd is still well controlled.

No mention of ivig.
 
MTX should be better for her joints than Imuran. Imuran is rarely used to for JIA now, though it is used for Lupus sometimes.

MTX is considered to be safer.

My daughter had issues with infections on Imuran + allopurinol. Many throat infections - I think it was 6 or 7 in one year that required abx. One was a staph infection - staph infections are uncommon in the throat.

The abx for staph led to CDiff which led to a Crohn's flare.

So it's safe to say, we are not big fans of Imuran, though my daughter is back on it since she can't take MTX.

We haven't had any headaches with Imuran though.

Fatigue could easily be from active JIA.

Really hope the switch to MTX works for her. Will she be on pills or injections? Make sure she is on folic acid too.
 
Pills this time around.
Her doc just warned us to keep track of her stomach issues If that flares, she'll switch to injections.
Yes, to the folic!😁
 
We were talking to the Humira people (in relation to headaches) who said yes that side effects can happen years later. But not sure about with Mtx or Imuran.
I hope the switch does the trick for Farmgirl.
 
Farmwife said:
Grace will be switching from Imuran back to mtx.
Her rheumatologist is wondering if Imuran is causing some of her issues like head aches, low immune system and fatigue.


My question is.......
Can meds start having side effects after years of being on them?

She'll be seeing a neurologist in the new year.
But if this could help, that would be amazing!
Click to expand...

J just had to go off 6MP after years of being on them due to immunosuppression, so I would say a resounding yes.
 
Thanks Carol,

So here's a question I don't want to ask but......

For two weeks or so (before the change to mtx)
Grace had been burping and passing gas a lot.
A couple mentions of stomach pain but not constant.

Would this make any of you concerned?
 
Given that it happened before the change in meds, I would watch and wait... could just be a fluke and not directly crohns-related (although, it is what jumps into mind right away :().

But, even if crohns-related, it could be that the change of meds will help!
 
See, this is why I ask. Apparently I can't think straight or use common sense when it's my own kid. LOL
 
Those are normal things in our house, so I wouldn't be concerned, but if they are new for Grace, I could see where it would be concerning to you. It may be that she was eating something she didn't agree with (in our house it is typically a meat or gluten). I've also heard of that happening with gastroparesis. If the symptoms have resolved now, I wouldn't worry about it...
 
They are new for Grace. Those are two issues that never seemed to bother her till now.
She's on no new food but that doesn't mean she can't be getting a new sensitive to one.
 
Also those things can happen if her system is taxed
So say on a normal day no issue with chips /salsa
But when she is flaring at all pick a disease
She can’t handle those

We try not to worry about those things
They tend to resolve or we see more worrying in symptoms
 
I agree it could be related to a food - a food diary might help. For example, my daughter is lactose intolerant and lactose causes bloating and nausea.

I'd just wait and watch...if you see more symptoms, then I'd let her GI know.

Simethicone is OTC and can help with gas. My daughter's GI allows her to take it as needed.
 
Great So now she had side pains in her abdomen :yfrown:

Just a reminder of her past....
Her rheumy stopped her Imran and added oral mtx about 3 weeks ago.
She had been on mtx injections years ago but dropped for Imran.

I called the nurse and asked her to switch her from oral mtx and to mtx injections. She's had 3 Friday night oral mtx and each time she's sick with nausea, fatigue and even worse appetite. It last most of the week end.
Plus she's still dealing with stomach issues.

Is it too much to hope for side effects? :cool: I'd rather real with side effects.
 
My daughters both did MUCH better with the injection vs. the pills. In my older daughter's case, the switch from pills to injections helped enough that she has been on MTX for years with only minor side effects - fatigue the day after the shot and sometimes mild nausea. She does take 2 mg of folic acid a day and has Zofran for the day after the shot, but rarely uses it.

My younger daughter did improve when with switching to the shots, but not enough. She still had severe nausea and dizziness and sometimes vomited several times. She was so nauseous and dizzy that she could not get out of bed at all for 2 days a week. We tried lots of tricks to make it work but she was still just miserable all weekend.

Eventually, she begged to stop it and her rheumatologist switched her to Arava. Which works well for her peripheral joints but doesn't work for her IBD.

Switching to injections should also improve MTX absorption, which may help with the IBD issues.

Have you done a FC recently to see if it's IBD related stomach pain or something else? When was she last scoped?
 
No fc test as that doesn't show much {never had even when a scope showed differently.

Scopes was a year and a half..... I think.
MRI a year ago.
 
Maybe she is due for scopes to see what is going on? Something to ask about if her belly pain does not subside after some time on the MTX injections.
 
When H started mtx injections, it was 15mg, she was just over 60lbs. She had the same side effects, nausea, vomiting, feeling awful. We did it on Fridays and lasted all weekend. Zofran wasn't much help but on advice from this wonderful forum we went to 2 mg folic acid and then she was ok. This was after 6 weeks so possibly her body just adjusted.
We're oral now, and she is fine with that also.
 
Thanks guys.
She's on 20 MG now at 70lbs.

When she had it before she was at 10mg
but that was about a year and a half of maybe 2 years ago
The injections never bothered her before. I hope it doesn't now.
 
Ask about leucovorin
It’s a rescue drug given 12 hours after mtx
It can lessen the symptoms
Ds got very ill on 25 mg injections even with leucovorin and higher dose folic acid -2 mg per day
Doc switched him to 20 mg orally
No issues
So it’s defin very individual
Good luck
 
We also did Leucovorin - rheumatologists seem to use it more than GIs (probably since they use MTX more).

It really helped both my girls. It's generally used with higher doses of MTX since it is folinic acid - a rescue drug for MTX and makes MTX slightly less effective (since it helps side effects by reversing the effects of MTX to some degree).

When very high doses of MTX are given as chemotherapy, folinic acid is used (also in much higher doses) to prevent some of the nasty side effects.

We only used it when my girls got to 20-25 mg MTX.

For Zofran, we found that using the oral disintegrating tablet worked much better than just the regular pills.

We also upped to 2 mg of Folic acid daily and gave the injections before bed.
 
Sorry your girl is dealing with so much right now. To me, the nausea, fatigue, and lack of appetite sound like mtx side effects, but the abdominal pain might be IBD. I know that mtx can take a while--sometimes months--to build up to therapeutic levels, so it may take longer for it to start working well.

Like others have already commented, going up to 2mg of folic acid daily really helped my daughter's mtx-induced nausea.
 
:dusty::dusty:Happy Update:dusty::dusty:

I gave Grace her injection of mtx last night and other than some dizziness she felt great (well for her, great).
So much better than the pills.:thumleft:

So for Christmas this year Grace only asked for a baby doll. That's it!
I go to Toys-R-Us and get bombarded by a hundred different dolls with ACCCCESSORIES:shifty-t:
some of the accessories cost more than the actual item.
So after I walk in and look and say NO WAY!
I walk out with an 16 inch baby doll ,
white wooden bassinet with storage underneath,
stroller (it was on sale, so why not),
baby carrier,
two changes of clothes plus a winter coat for the doll because it's winter up here, :yfaint:
high chair and fake foods and bottles (because you know the baby has to live:cool:)

Ya, a couple hundred dollars later.....I walked out of the store trying to figure out how I can word it to my hubby not to have me committed! :ylol:
 
Hi Farmwife,

Glad to hear that Grace is adjusting well to the new meds!

Even though you might feel as though you should be committed, I think it shows just love and commitMENT.

You know that it is going to make little Grace so happy - and so you just do it. You can worry about the credit card bill later right! The winter coat for winter syas it all!!

I hope that she has a wonderful time playing for hours with her new doll - no doubt there will be plenty of cold Michigan days to stay indoors and just play. It's kind of weird as it is going to be 38 degrees C (100 F) here on Wednesday so we are doing new bathers and beachy things for Xmas!!

Poor little Grace has had a bugger of a year. I hope that 2018 is a much better one for her and all of the family.

Merry Christmas!

K
 
Glad the shot worked so much better for her! And she is going to be one happy kid on Christmas day!
 
Quick question
Her doc has said for her labs to be taken every 4th infusion (every two months).
I'm not happy with that and want to request every 2nd infusion (once a month).

Is that reasonable? Or perhaps I'm being over sensitive?
 
Why would she need labs every month ?

Every 2-3 months is the standard something med every 4 months
Currently they are doing Ds labs every month prior to ivig infusion but currently he has some rogue numbers -uncharacteristic for him
And started getting not one but two new therapies after a very long flare

Even then GI was ok with waiting 3 months .
Rheumo just wanted every month till the flare improved or numbers stabilize
 
She's always had every month draws. Always.
Plus she restarted mtx. I forget how often they draw labs for that.

Interested to hear how often your children get lab draws
 
Mtx every two months is standard at first
Ds until ivig was every 2-3 months
Basically just prior to his GI Appt
of his GI appt was 4 months out (rare ) then 4 months

Are her labs stable ?
 
First time my girls started mtx, labs were after one week, then two, then 4, then just at Remicade infusions. O stopped mtx and went back to it and the second time we just pulled labs with regular schedule.

Both girls infusion schedule was every two months so that was when they got labs. But then O went to college and did home infusions and they don't pull labs so GI said O.K. to move to every other infusion so every 4 months.
 
We get labs every infusion, so every 6 weeks. Nutrition labs are done every 6 months, and Remicade levels as needed, usually once or twice a year.
 
My younger daughter gets them every month to 6 weeks, but that is because she hasn't been stable in forever. And also because she has a LOT of other medical conditions that require close monitoring, so we end up doing them about every month.

The only time they are more frequent is when we are adding a new med - like Imuran. We just added it and have just moved from weekly blood work to every other week.

When she is stable, I hope we will move labs out to every 3 months. She is on about 19 meds though, so I'm not sure if that will ever be allowed!! It is a pain because her veins are really scarring.

Her sister is on a biologic + MTX but is relatively stable so gets blood work done every 3 months. She is only on a few meds - MTX + biologic + NSAID + Prevacid regularly. She takes a couple more meds as needed.
 
Wow, I had no idea that 4 weeks wasn't the norm for blood draws.
Glad I asked!

Maya I'm assuming like your girl, Grace is/was monitored more closely because of all her health needs and meds.
I've never asked the docs why because I never knew it wasn't normal.
Now ibd and jia wise she seems to be heading in the right direction. Not there yet. Perhaps this is why he wanted to back off.
 
It is actually not so much the IBD/AS as it is the sheer number of specialists and conditions she has. Because she has so many specialists someone or the other orders blood work about every month.

Her rheumatologist does not believe it's needed that often - even though we are tracking her CRP closely because it has been high for a year. She would do it every 2-3 months if it were only her.

Due to the adrenal insufficiency (which can be life-threatening) now endocrinology seems to be doing blood work pretty often and that her endo has become one of her main specialists (and now actually, she has two endocrinologists for different issues).

Add in orthopedists - she has 4 for different joints - hip, jaw, foot and ankle :ybatty: and has had two surgeries this year - and pain management and cardiology and interventional radiology and so on...it adds up quickly.

My hope is eventually we will get her stable and be able to get rid of some specialists!! And hopefully back off on blood work.
 
So does M have Addison disease?

Grace's pain doc wanted regular labs because of her meds he's rescribed. I guess I should and all his opinion. Didn't even think of that. There's was concern of vascular eds but I never thought we've had that.
All things to think about.
 
Secondary adrenal insufficiency is a bit from Addison's - it's usually due to long-term use of steroids. Addison's disease is primary adrenal insufficiency, when the adrenal glands are actually damaged for some reason.

Secondary adrenal insufficiency may go away - but it takes a long time for the adrenal glands to recover (months to years). The longer your kiddo has been on steroids and the more steroids, the longer it takes for their adrenal glands to recover.

Adrenal insufficiency can be primary or secondary. Addison’s disease, the common term for primary adrenal insufficiency, occurs when the adrenal glands are damaged and cannot produce enough of the adrenal hormone cortisol. The adrenal hormone aldosterone may also be lacking. Addison’s disease affects 110 to 144 of every 1 million people in developed countries.1

Secondary adrenal insufficiency occurs when the pituitary gland—a pea-sized gland at the base of the brain—fails to produce enough adrenocorticotropin (ACTH), a hormone that stimulates the adrenal glands to produce the hormone cortisol. If ACTH output is too low, cortisol production drops. Eventually, the adrenal glands can shrink due to lack of ACTH stimulation. Secondary adrenal insufficiency is much more common than Addison’s disease.
Click to expand...

Stoppage of Corticosteroid Medication

A temporary form of secondary adrenal insufficiency may occur when a person who has been taking a synthetic glucocorticoid hormone, called a corticosteroid, for a long time stops taking the medication. Corticosteroids are often prescribed to treat inflammatory illnesses such as rheumatoid arthritis, asthma, and ulcerative colitis. In this case, the prescription doses often cause higher levels than those normally achieved by the glucocorticoid hormones created by the body. When a person takes corticosteroids for prolonged periods, the adrenal glands produce less of their natural hormones. Once the prescription doses of corticosteroid are stopped, the adrenal glands may be slow to restart their production of the body’s glucocorticoids. To give the adrenal glands time to regain function and prevent adrenal insufficiency, prescription corticosteroid doses should be reduced gradually over a period of weeks or even months. Even with gradual reduction, the adrenal glands might not begin to function normally for some time, so a person who has recently stopped taking prescription corticosteroids should be watched carefully for symptoms of secondary adrenal insufficiency.
Click to expand...

Here are the symptoms - I mention them here because they're kind of vague and it was really only luck that we caught M's adrenal insufficiency. Often it is not caught till the person goes into adrenal crisis, which can be fatal.

Of course, several of the symptoms could easily be IBD symptoms which confuses things further. Adrenal insufficiency can also cause vomiting and diarrhea and nausea.

The most common symptoms of adrenal insufficiency are

chronic, or long lasting, fatigue
muscle weakness
loss of appetite
weight loss
abdominal pain
Click to expand...

I would just check with Grace's doctor about vascular EDS and if he wants blood work more frequently. 2 months is probably ok especially if she is stabilizing but of course, you would need to check with her main specialists.
 
Oh wanted to add - if Grace is still on pain meds (like hydrocodone) regularly (daily, or even a few times a week) that could be why he wants more frequent blood work.

I'm not sure about Tramadol but stronger pain meds like Norco/Vicodin (hydrocodone) can be tough on the liver. Both have Tylenol in them too, which is also hard on the liver. I can't remember what she's on now but I remember her being on Norco at some point.

Tramadol is generally considered much safer than them and we are allowed to do 3 monthly blood work with that for my older daughter, even if she is taking it daily.
 
Well before you came on board (pre-Maya days) on the forum.
Grace has the same issue from steroid use.
If I remember correctly hers was mild and she had to have stress doses of pred as needed.

That's good to have the list.

As for the vEDS, the doc agree with me...for now. I don't believe we have it.
It's just the hEDS, which is bad enough and all we can handle
 
Narco but I'm happy to say it's only once a week if that. So that's great!
Tramadol did nothing for her. She's also on migraine meds.
In actuality this is the least amount of meds she's been on in years.
 
Yes, M's condition requires daily hydrocortisone - the physiologic dose is generally what is used (what the body makes normally - like 4 mg Pred). We've been able to go a little lower than that but her ACTH is still VERY low, so she's stuck on hydrocortisone for the near future.

In addition, she gets stress doses when she is in severe pain or sick or with surgeries/procedures.

In her case, her symptoms are diarrhea and nausea and fatigue when she needs a stress dose. Which makes it very hard to determine if it's Crohn's or adrenal insufficiency or something else.

We have learned from endocrinology that both GIs and rheumatologists use steroids much too liberally and taper too fast. Endocrinology really considers anything over 10 mg of Pred (!!!) a high dose and a low dose is really like 3-5 mg Pred.

I didn't think M had been on steroids THAT much till I saw her records :(. But they were always what I considered "low doses" usually under 10-15 mg of Pred. But unfortunately, if you do that many years in a row for many months in a row (3-6), you end up in BIG trouble.

Fingers and toes crossed than she doesn't have vEDS - she has enough to deal with!!
 
Narco but I'm happy to say it's only once a week if that. So that's great!
Tramadol did nothing for her. She's also on migraine meds.
In actuality this is the least amount of meds she's been on in years.
Click to expand...

That is REALLY great :dance:!! Really seems like the more frequent Remicade is working for her joints!
 
When A was on IVIG we did labs every month. Mostly because she was getting poked anyway, so why not. Now that she's on subQ we'll do labs every 3 months. Even with a high CRP they weren't interested in testing sooner.
 
Maya,
That is crazy about the Adrenal Insufficiency. We have never tested Caitlyn for it but I think we might need to.
 
Kim our GI doc recommended Endo consult so they can figure out just what damage /side effects
Years of steriods have on Ds
Much more than just adrenal insufficiency
Definitely get a Endo consult
They do scans bloodwork and other tests
 
Yes, absolutely get an endocrinology consult. My daughter was on steroids a LOT but we never seriously considered she could have it - her GI and rheumatologist didn't seem to be worried. We insisted on the endo consult and within 6 weeks she had been diagnosed with adrenal insufficiency.

It has very non-specific symptoms so it is hard to catch.
 
Thanks for the suggestion MLP and Maya. My son is seeing an endo because of slow growth so we can make an appt with her for Caity.
 
Yeah for Grace. I went into a toys r us for the first time in many years this Christmas to get something for my little nephews, thought I would get him some Thomas train stuff since he loved my youngers son stuff that we still had up in the closet last year. It seemed like there was 8 different kinds of trains and assorted track, it made my head spin. When J was his age there were 2 choices wooden or metal.
Just think how excited she will be on Christmas morning!
 
Thanks Jacquie
That's what made me laugh because when I was a kid there were cabbage patch kids. All the rage back then.
Now they have dolls that tell you they need to be changed or fed. Ummmmmm, no!
Like I need to hear more voices asking for food.:ylol:
However, I go back to Toys-R-Us to get my son's presents and saw a receiving blanket for the doll:shifty-t: I got it. I need help. :ybatty:

On a serious note:(

Remicade was yesterday. They took her temp at the begging and it was normal. At the end of infusion it was a 100.0. Fever stopped about an hour after
Nurse said it could be reaction.

Is it possible to have just a fever for a reaction?
 
Way late to answer this top of page question but H gets labs every month due to Mtx. Maybe because our girls are younger?
Ok, back to today's question.:)
 
To a drug yes
When Ds would get ivig
They monitor
Temperature
Heart
Pulseox and blood pressure
To look for signs of a reaction

Don’t they pre treat her with Tylenol/Zyrtec
I know for ds that’s a given
 
She take Benadryl and Tylenol every single infusion.
They also do the same monitoring for her.
Usually it's twice, once at the beginning and once about a half an hour before the infusion is done.
 
I wouldn't worry too much about a temp. of a 100.0 F, even with Benadryl or Tylenol.

M runs temperatures because of her AS and we were told by Infectious Diseases that they really don't begin to worry at all till 100.5 F and it's really 101 F and above where it is concerning.

Also, your body temp. does naturally go up later in the day...
 
Same here
Non ibd kiddo who is “normal “ 101 is a fever

Ibd kiddo due to biologics and immunosuppressants (therefore shouldn’t run a fever ) anything over 100.4 F requires a call

That said raising temp during an infusion is different than a”fever” due to illness .
Same with raising bp etc...
These are signs of distress of the body during the infusion on how well it’s tolerating it
 
I should have clarified, the fever was just for the infusion.
No other symptoms of illness before or after. Just during the infusion.
 
A's infusions were obviously different than Grace's, but some fluctuation in temp and BP was expected. A temp of 100 would not have been a cause for concern.
 
I would definitely keep an extra eye out the next infusion. Caitlyn’s reaction to imuran started with just a fever.
 
Merry Christmas and Happy New Year, 2017!

The little farmgirl loved her gifts and demanded to take her baby to show her grandma!
She named the baby after same grandma while getting another mountain of gifts.:ylol:
:sign0085: It looks like Christmas grave yard in my house. 3 garbage bags full of wrapping and boxes and still there's more. :yfaint:

May you all make some wonderful memories this holiday season:thumleft:
 
Just wait until you hear all of your lessons repeated to the baby doll! Sometimes I listen to the girls play, and think, "Do I really sound like that?!" :)
 

Latest posts

Back
Top