Our Vasculitis Journey

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DanceMom

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Feb 17, 2013
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We saw the Rheumo today and the appointment went fairly well (meaning I was satisfied with most of the answers I got). As for the cutaneous vasculitis, most of the spots on her legs were clearing but he took a picture to monitor progression and to show the GI. He also believes the spot on her back is vasculitis, not a bruise. Apparently both are non-blanching but since she has known vasculitis and no known trauma to the back he figured it was vasculitis. I was not impressed that it now affects more than just her arms and legs.

I was interested in knowing the exact type of vasculitis she has but he said without physical evidence via biopsy that wasn't possible. So for now it is simply labeled "systemic vasculitis" and we're hoping the mtx prevents further problems. If after 6 months she's still experiencing symptoms then we'll discuss biopsies.

We did discuss her labs and the downward trend of wbc and rbc. He really didn't think it was a problem at all so time will tell on that one. We also discussed her growth (or lack of really) and realized that she's gained 2kg and grown 2cm in the past year. So she now is considered to have a "growth disorder" as well. She'll be 9 in a few days and still hasn't reached 48 inches! Because she had good range of motion he figures she does not have arthritis, just joint pain likely caused by the vasculitis.

And most importantly she had her first mtx shot. According to A I did "a good job but there is room for improvement!" Silly girl! No side effects so far but I'm not sure how long that would take.

She'll have labs in 2 months (which I thought was a long time but I know what to look for regarding liver toxicity) and a stool test now. The stool test is a new one for us - alpha-1 antitrypsin. He wants to see if she is losing protein through her stool. We'll try to get that done this week.

We see both the GI and Rheumo in February so hopefully things will be uneventful until then! I know that the mtx takes 6-8 weeks to work but her GI symptoms are minimal for the time being so we opted against steroids. Should things change we can change plans.
 
So far no real side effects aside from a sore leg at injection site. Maybe I do need to improve on my skills? Lol Anyone else's kiddo get sore after the shot?

And she can't seem to shake this blasted fever. It started Sunday night but was gone by Monday morning only to come back Tuesday night. Still has it though she feels okay. I sometimes wonder if she remembers what it means to feel good!
 
No soreness here. You could try icing her arm or leg before the shot? We did that the first few times but after that my daughter decided it wasn't necessary.
Poor A, hope she feels better soon!
 
Hugs
The first shot for Grace hurt her leg for a few hours, second shot didn't hurts as much and the third didn't hurt as all.
By the third shot it was easier to give. That help her pain.
She is do for her fourth today. We'll see if there's pain afterwards this time.
 
Tomorrow is A's birthday and she's also due for her shot. I really feel like we made the right decision in going with the mtx and I'm praying it doesn't affect her liver. In the past week she's had only 2 days without fever and the diarrhea and stooling accidents have come back. Yesterday I noticed a huge lump (presumably vasculitis) on the top of her arm with swelling. This is the largest lump yet, about 2 inches in diameter, and made her entire arm sore. This disease is ridiculous.

Hoping we get the results of her stool test very soon....
 
HAPPY BIRTHDAY A! Hope she has a fantabulous day!

What dose is her Mtx? I ask because liver issues are my primary concern here as well. Mostly because we have a history of liver issues on both sides of the family but O's doc said on the doses they use for IBD not usually high enough to cause a problem...it sometimes does but not as a general rule. Here's hoping.
 
:bdayparty: A


How ofter is A having her blood tested? Grace every two months but I'm not sure I want to wait that long.
 
She takes .5 ml (12.5 mg) injections weekly. She already failed 6-mp due to liver toxicity and was only on it for a few months. She didn't have any liver issues prior to 6-mp and I'm hoping that mtx won't affect her in that way. She isn't scheduled for labs until mid-February. Our GI tested after 2 weeks and then we continued every 2-3 weeks because her numbers continued to rise. The Rhuematologist does things differently I guess and he wants to wait 2 months. I liked testing after 2 weeks but I do know what signs to look for regarding the liver (severe headaches, burning/itching skin, etc.).
 
My 9 yo son takes 0.6ml (15mg) MTX weekly. He was having biweekly bloodwork for the first 3 mos or so, but now goes bimonthly. His liver enzymes remain slightly higher than normal, but the GI says he is not at all concerned. Easy for him to say! Thanks for mentioning the signs of liver toxicity, DanceMom. I'll watch for this in my son. Hope the MTX works for your daughter, and Happy Birthday to her! Farmwife, hope the MTX works well for Grace too. Take care!
 
Our GI said he was not even slightly concerned about the liver enzymes until they got to 3x the normal limits. At that point we retested in 10 days and they were over 10x the normal limit. For a week or so prior to testing I noticed that A was very fatigued, had severe headaches, became nauseated very easily, and had itchy/burning skin with no visible abnormalities. I'm sure each child may react differently but those were her symptoms and they started to resolve a few days after stopping the medication.

CrohnsKidMom - How much does your son weigh? A will be 9 tomorrow and weighs 50 lbs. I think her 6-mp dose was on the low side (and still affected her liver) so I'm wondering how this mtx dose compares.
 
It is already tomorrow here! :)...

Happy Birthday A!

happybirthdayemoticon.gif


I hope your day is a brilliant one. :heart:

Good luck with the Metho, I hope all goes wonderfully well and the liver thinks it is just the best thing ever! :goodluck:

Dusty. xxx
 
DanceMom, My son is 76 lbs. He put on 20 lbs while on prednisone from last Apr to Aug. Fortunately, he is starting to grown in height.

I'm not sure how they work the dosing, but it seems like plenty for her weight.
 
Happy Birthday A! :birthday2:
Our rheumatologist did blood work every two weeks when M was on methotrexate. She was on a higher dose (1 ml) but she was much bigger than A (about 90 pounds)! It took quite a while for methotrexate to work (about 8 weeks) for us, I hope it kicks in quickly for A!
 
:bdayparty:

Wishing A has a Wonderful Birthday!!!

(And hoping the MTX does the trick for her!)
 
Alarming new symptom - extreme arm and leg pain! She knows joint and muscle pains very well from being a dancer. But she says this is different, like a burning and tingling. Does this sound like a mtx thing? It started before she even had her shot tonight. Maybe a vasculitis thing? I'll call the rheumo in the morning if it's still going on but I was hoping maybe someone here had this before.
 
It's hard to say for Grace. She's to young to say burning or tingling. However she does have horrible pains in he legs that are separate for the normal joint pains. It doesn't happen everyday. Just the legs not the arms. I've always felt it might be swelling in her spine.
Has meds helped at all? How about heat or cold packs?

I hope she feels better soon.
 
My son gets pains in his arms and legs several times a week, but they don't last. It usually happens in the evening, and are gone by the next morning. He has complained of a tingling sensation before, but it's been rare, and it began before he started MTX and seemed to be more related to his initial flare. Hope this resolves for your daughter soon!
 
Belated happy birthday a - am of no help with new symptoms as Lucy has not experienced them. Hopefully the will resolve soon. Re bloodwork Lucy started mtx (orally 2.5mg) weekly and initially had weekly bloods (6weeks) then went to bi weekly, then monthly and now we are doing them bout every six weeks- she is on mtx 7 months now.
 
She is only slightly better this morning. Said her arms only hurt a little now but her legs weren't much better. She was having trouble walking but insisted on going to school. We tried a hot shower and ibuprofen but they did not ease the pain. She wouldn't allow me to try an ice pack because she said she couldn't stand the thought of cold on it. I emailed the doc and am waiting on a response.
 
The darn Rheumo never called. His office is ridiculously difficult to communicate with. Fortunately A's arms/legs have gradually gotten better as the day has gone on. And we're counting our blessings that the mtx has not given her any side effects thus far!!
 
The nurse emailed today. She said if I don't hear from the doc by Monday to call and let her know. Monday?!? Meanwhile my child is freaked out that her legs are burning and it is making it difficult for her to walk, let alone dance and tumble!

And still no results for the stool test. I'm struggling to keep calm.
 
Um....no. can you call her GP and maybe light a fire. Maybe another doc calling well help.
I mean all your asking for its a simply answer. Even if it's wait and see some more, it will still be an answer. Has she seen a Nero yet? Maybe one of those can help too.
 
DanceMom said:
The nurse emailed today. She said if I don't hear from the doc by Monday to call and let her know. Monday?!? Meanwhile my child is freaked out that her legs are burning and it is making it difficult for her to walk, let alone dance and tumble!

And still no results for the stool test. I'm struggling to keep calm.
Click to expand...

O.K. if she said I told the doc and the doc said to wait until Monday, maybe just maybe I would wait....cut me some slack people I said maybe!

But what does if the doc doesn't call by Monday mean? Did he get the message...was it the whole message or just that you called? Does he know what kind of pain she is in? Is he incredibly busy and just not able to make time for you....then refer me out! Sorry time to call nurse and get more details on what the doc was told and what he actually said.
 
Maybe rephrasing the question to "Do I need to take her to the ER?" might get a quicker response?
 
Yeah that ^^^^
The one time DS had "numb" tingling arms and legs
Gi had us call Neuro who had us see the ped that day and was on the phone with them to make sure things were ok.

Bug hugs
 
Last time I spoke with the Rheumo I asked him how he preferred me contact him with concerns - email or phone call. He said he prefers I email and he will usually return with a phone call (like a week later!). So I emailed yesterday morning and the nurse's exact response today was:

"I sent your concerns to Dr. B. Let me know if you do not hear from him by Monday."

They always make me feel like I'm overreacting and these kinds of things just happen. I'm not sure how serious this tingling/burning sensation is but it is new and it freaks both of us out. I guess my plan will be to wait and hope I hear from the doctor tonight (he tends to call in late afternoon or early evening). If he doesn't call and she's still feeling this way in the morning I'll call the Pedi and get her thoughts on it. I'm not even sure if she's been filled in on the whole "vasculitis" issue or what her experiences with that are. The Pedi's nurses are dingbats so I'll have to be pushy to get the actual doctor on the phone. I can easily take her in for an office visit or make a trip to the ER after work tomorrow.

I just want things to be simple for once!
 
Well sorry that is just a plain old silly way to work things. If you don't hear from us...geez! It takes 20 seconds for them to shoot you an email saying...not worried let's wait and see. Gosh...I have bothered our GI with waaaaay less things and I always get a response same day. No nice late night phone call chats but at least I hear his words.

Yeah, I would take her to the ped in the a.m. if this keeps up. Bet he would answer if a ped called with concerns!
 
Still having the burning/tingling in her legs and a huge new outbreak of nodules on her skin. Her legs are covered, as are her arms. At least 25. She has a new one on her lower back and one on her chest as well. Trying to avoid prednisone but this is getting ridiculous!
 
Happy Belated birthday!Sorry we missed it. I am sorry to hear that she is having this pain. It definitely sounds like something the doctor needs to respond to urgently. Like the others said saying to the nurse do I need to take her to the ER now might help light a fire under him to give you an answer. Otherwise can you just call his office and say look this is going on we need an urgent appt with the doc tomorrow and get them to squeeze her in to be seen? We have done that with our docs in the past and they have always squeezed us in.
 
We have done that as well
I only ask when it's absolutely necessary so they know if I am asking he needs seen.
 
The Rheumo called me this morning and did apologize and admitted that he forgot. He's human so I'll forgive him, lol.

He said that her symptoms sound very much like a vasculitis of the medium blood vessels but of course he can't be sure without additional testing. He wants to schedule an incisional biopsy to verify that we actually are dealing with vasculitis. He tried to get me to do this before but I'm sick of her being cut on. At this point we need definite answers so I feel it is something we have to do. I want it done without sedation so if anyone has experience with that please share! She's going to be determined to dance regardless of stitches, lol.

He's also considering an EKG and a nerve conduction study but that may change depending on the incisional biopsy results. He's supposed to consult with neurology and cardiology today, see her first thing Monday morning (and hopefully schedule the biopsy with a surgeon for Monday) and we'll go from there.

Should she develop a fever, have swelling, or be unable to walk I am to call his cell phone and he will admit her to begin testing immediately. I'm just a complete wreck. What started out as chronic diarrhea, bloody stools, failure to thrive, and erythema nodosum has now turned into some rare vasculitide that could attack every single part of her body! And we aren't even 100% sure that this is the correct diagnosis either!!

Thank you all for being there for me, offering support, information, and advice. It is difficult to say if IBD is an underlying factor in all of this but this forum is my lifesaver in these stressful times. You guys are awesome!
 
Forgot?! Exactly! Crap happens and this is why you have to hear from their mouth what they are saying...otherwise how do you know you didn't go into the black hole.

I am glad he is on it but so sorry for this ride you are on. But try to not go too far down the highway just yet. Make a U turn and come back. Maybe get off at the nearest rest stop for a bit. Are there rest stops with wine?

I really hope all those awful things don't happen over the weekend and Monday comes fast and brings some solid answers and a really good plan.
 
So sorry to hear that. He may have forgotten but sounds quite efficient now. Hope you don't have to go in sooner than Monday. They should be able to do the biopsy with a local anaesthetic. Hope they can help soon.
 
So good to hear the doc finally got back to you. :ghug:

Most biopsies can be performed using local anaesthetic only. Do you mind if I ask why you wouldn’t want to use sedation?

Dusty. xxx
 
DanceMom, you are the proud owner of the GI mobile number. You need find out when you are allow to use this number.

I also have the GI number, which can I have ER ring the GI on. I am also allowed to SMS the GI that blood tests have been done.
 
She had a punch biopsy in the dermatology office and she did fine. The nurse practitioner did a great job of distracting her and blocking her view of what was happening. I wasn't sure how different an incisional biopsy would be. Our hospital doesn't have a dermatologist so this biopsy will be done by a surgeon.

I try to avoid anesthesia whenever possible. A had a reaction after her first scopes when she was 5. She suffered from extreme memory loss and displayed very bizarre behaviors. She thought I'd just bought my car and I'd had it for months. She kept trying to urinate in her toybox and when we tried to redirect her to the toilet she'd stand on it. She would repeat the same questions and phrases constantly. She forgot her dances, forgot how to read. You get the picture. This lasted for months. She's had anesthesia several times since without issue but I hold my breath every time. The anesthesiologist believes her reaction was not to the anesthesia but to some other med given at that time. Regardless, I just want to avoid the risk. I talked to A about it and she's fine with the procedure just mad about the scar it will leave. Sounds vain but the dermatologist told her it wouldn't leave a scar and it left a dark purple one. She feels like she was lied to..
 
Poor A, that does sound very scary. I hope the biopsy goes well. Can they do it somewhere that's easily covered up so that she doesn't have to worry about the scar?
Will be thinking of you both:ghug:
 
They have to biopsy one of her lumps and I guess the Rheumo will decide which one would provide the best results. The larger ones that look the deepest are on her shins. I think she's tired of looking like she's been to battle. She's 9 now and her appearance is becoming more important to her.
 
My sister has a scar on her leg which always really bothered her. She started using Mederma (which is over the counter) and it has become a lot lighter.
I don't know if A could use something like that, but it might be worth asking her dermatologist/rheumatologist?
 
My hubby lost a chunk out of his nose. So he has a scar. The plastic surgeon said to use sunscreen for at least a year on the spot to keep it from turning purple.
 
DS had an incision biopsy under anesthesia . IT is in area that does not get sun but still turned purple.
but boys love scars.
 
Good grief DanceMom! Little wonder you are loathe to have anaesthetised. :ghug:

We have found that Bio Oil works really well on scar tissue. :)

Sending loads of luck and well wishes for the procedure. :heart:

Dusty. xxx
 
Rheumo called this afternoon to check on A. She's mostly the same - burning/tingling legs. She said it feels very much like getting into stinging nettles. If you've ever gotten into them before they are awful! Her legs definitely get worse with any physical activity.

The Rheumo set up a Neurologist appointment first thing Monday with the division chief. Hopefully he'll have an idea what is going on. Then we see Rheumo. He couldn't schedule the biopsy for Monday so not sure when that'll get done. I guess I'll just go with the flow come Monday.

Shortly after getting off the phone with the doctor A had a BM that she said was full of blood. Typically she calls me but we were at the mall and she'd gone into the bathroom alone. We haven't seen blood in well over a month. I'm getting very nervous because things seem to be escalating quickly.
 
Would she go to the hospital? I now she probably would not want that but then again we don't want any of this.

Hugs
 
We want to keep her home if at all possible but if she develops a fever she'll be directly admitted. If the blood happens again and I see it I'll take a picture and call the doctor immediately. We had some errands we needed to run today but we're going to take it easy tomorrow. The blood was just very unexpected.
 
Hold in there mom. Where all praying/hoping/wishing that things will get turned around quick for A.
 
Another piece to the puzzle - just got her stool results back. Her alpha1-antitrypsin is high. Normal is less than 55. Hers is 80. So if I understand correctly this means she's losing proteins through her stool. Anyone know what's done for this? Interesting to me that the Rheumo ordered this test and not the GI.
 
Don't know what is done for this but it is good your rheumo seems on top of things. Nice you have a good doctor.
 
Pleas forgive me if you have answered this DanceMom. I did my best to read through the thread to understand more before asking this question.

How did your doc come upon the diagnosis of Vasculitis? I ask this as I am still searching for some type of remission or relief for my daughter. She has good days, but knowing her good days are well beyond the scope of acceptable it has entered my mind maybe we are treating the wrong thing, or she has multiple issues on top of the Crohn's we aren't treating.
 
SupportiveMom - A has been getting these lumps on her body, mostly arms and legs, for the last 7 years or so. They start out as small red bumps that resemble bug bites but turn into dark lumps that look similar to bruises. They look identical to erythema nodosum and that seemed to fit with her Crohn's diagnosis. Our GI wanted a biopsy so the dermatologist did a punch biopsy of one of the nodules. That pathologist read it as erythema nodosum. However, our Rheumatologist was not convinced and ordered the slides to be reviewed by a second pathologist. This pathologist concluded that it was actually vasculitis and the Rheumatologist agreed. Unfortunately the punch biopsy could only detect small vessel vasculitis and now an incisional biopsy is needed to see if it could actually be medium vessel vasculitis. I wish that had been done in the first place!

A's Crohn's diagnosis was never 100% clear but it seemed like the best fit at the time (and still could be a very real possibility). Vasculitis can be secondary to Crohn's or other autoimmune conditions like Lupus, or can be a primary disease like ANCA-associated Vasculitis. We haven't narrowed down the exact type of Vasculitis A has but we're working on it. It seems to be a slow and complicated process and vasculitis tends to manifest differently over time.

Do you believe your daughter has Vasculitis?
 
Man these journeys we are all going through do a tug on your heart strings!

I don't know if my daughter has anything else but Crohn's and a bizzare sense of humor. I just know I haven't seen much of change in her in the last year & a half and am now wondering if we are treating everything, the right thing or the thing she has the best way possible for my kid. Considering she seems resistant to medication, has lots of allergies, and is still not much better I am looking at alternatives in hopes to get her on the right track. I will look into this more and bring it up with her GI this month when we see her. Please keep updating how A does.
 
Has she seen a Rheumatologist? We have found ours to be most helpful and had our GI not insisted we see him I don't know where we'd be right now. He has run numerous tests that the GI did not and it has helped us to get a more clear picture of all of A's issues. She's definitely not a textbook kind of kid and we are blessed to have a team of doctors (GI, Rheumatologist, Ophthalmologist, Neurologist) that are all working together to help her.
 
Infectious Disease Doctor we see is also a Rheumatologist. Didn't even think of her. We were seeing her because of the rash she developed from Methotrexate & the catch up on vaccines she missed being in the hospital that she didn't/couldn't take when they administered them in school. This is why we need support groups, I would have never thought of asking these questions!
 
Our Rheumatologist is also an Immunologist so I think that insight has been helpful too. He ran some labs and discovered that A has low IgG and then ran an Alpha-1 Antitrypsin stool test which showed that she's losing protein through her stool. I'll have to ask him tomorrow if this is related to the vasculitis or something else entirely and what he plans to do about it. Our GI actually suspected she had an immune deficiency and the Rheumo only ran the tests to appease him (ha!). A team approach is 100% necessary with these complex kiddos. A's doctors are in constant communication about her care and that has made such a difference.
 
DanceMom said:
Another piece to the puzzle - just got her stool results back. Her alpha1-antitrypsin is high. Normal is less than 55. Hers is 80. So if I understand correctly this means she's losing proteins through her stool. Anyone know what's done for this? Interesting to me that the Rheumo ordered this test and not the GI.
Click to expand...

This is an older article I have saved DanceMom:

Abstract
Intestinal protein loss was measured by means of faecal alpha 1-antitrypsin clearance (alpha 1 ATC) in patients with various gastrointestinal diseases. In healthy controls and in patients with various gastrointestinal diseases there is a remarkable intraindividual fluctuation of the faecal protein loss from day to day. Alpha 1 AT clearance calculated from a three-day stool collection is usually sufficient to indicate enteric protein loss in Crohn's disease, ulcerative colitis, celiac sprue, and Whipple's disease. However, in two patients with intermittent diarrhea coinciding with edema and hypalbuminemia excessive enteric protein loss was observed on one day during a two week stool sampling period only. In one of these patients suction biopsies showed histologically intestinal lymphangiectasia of a 10 cm segment of the upper jejunum. The alpha 1 ATC is a suitable and cheap method to determine enteric protein loss without the use of radioactive tracers and therefore can be used in clinics without departments of nuclear medicine. In contrast to the conventional Gordon test the use of the endogenous marker alpha 1 AT facilitates the determination of faecal protein loss over long time periods, which might be of value in the diagnosis of intermittent occurring enteric protein loss. Furthermore, the endogenous marker alpha 1 AT is of use in following the course of illness and in monitoring the efficacy of therapy in patients with enteric protein loss.

http://www.ncbi.nlm.nih.gov/pubmed/2475983
Click to expand...

I am not sure what the remedy is other GI disorders but protein loss in Crohn’s, which is quite common when flaring, is to bring the inflammation under control and thus treat the cause of the loss. Then try to rectify any existing deficiency through diet and if severe TPN.

Dusty. xxx
 
Finally home from today's appointments! First we saw the Neurologist and he's lucky he's still alive. He did a very "thorough exam" and then proceeded to tell me that I needed to consider that this was psychological, that there was nothing that could be done for her. I had to chuckle at him and told him not to blame a 9 year old because he wasn't able to diagnose her in 15 minutes. Complete waste of time. I could have tickled the child with cotton at home and let him know if she could feel it!

Then we saw the Rheumo who was much more compassionate. He said he believes that what she's feeling is claudication caused by vasculitis - specifically Polyarteritis Nodosa or Takayasu's Arteritis. She had an EKG today, which was normal, but the Cardiologist explained that it usually is in children with these types of vasculitis. The next step is an MRA which I'll schedule tomorrow, hopefully for next week. Hopefully this test will make a diagnosis more clear and the incisional biopsy won't be necessary.

He also diagnosed her with protein losing enteropathy. He's left a message with the GI about this latest finding and they will discuss how they want to treat it and get back with me.

I'm rather numb at the moment but I'm sure the tears will come later. Off to dance class now so that we can pretend life is normal.
 
Your poor girl DanceMom. What a ridiculous doctor! I'm sure he thinks the bloody diarrhea is psychological too.
I hope the MRA (is that like an MRI?) goes well and you get some real answers.:ghug:
 
I'll jump in and just say that, even though things remained unsure back in the days, I probably had PAN vasculitis (Polyarteritis Nodosa). I mean, I've been stamped with that diagnosis as a teenage, following an episode I had while my crohn was flaring with extreme intensity.

Juggling with medications in attempt to stabilize my case and excessive inflammation through my digestive system, I had that series of strange reactions (bruise like spot on my leg, headache, seizure, etc). I had series of test like angiographies amongst many others to try and diagnose my case. Biopsies were never conclusive but angio was showing anomalies of vessel in my kidney, mesentery and brain.

I believe that if it was indeed a vasculitis, it was possibly induced by the medication cocktail they had recently introduced and the global irregularities of my immune system and blood parameters at that time.

I was then treated with a "chemo" course. Chemo is a bit heavy has cyclophosphamide concentrations are way small compare to the usage in oncology but anyway. In my case, it never came back. Hopefully for your daughter it can possibly resolve like my case did. It's already quite different since you say it's been there for a long time but it's worth hoping medication will help a lot. I believe the cyclophosphamide has probably helped my crohn greatly too as I was in remission for 10 years after that.
 
It has been a rough morning. The numbness is wearing off. My husband had an anxiety attack when I told him everything last night. He realized he'd been in serious denial and now must face our new reality.

GI called first thing this morning and he's very concerned about her stool results (alpha-1 antitrypsin). He wants her to have a Fecal Calprotection test but is trying to get insurance approval first (ours always fights it and I always end up paying out of pocket). Her results have always come back normal in the past but he wants to try this before scoping again. I have no idea what he's looking for, other than the obvious, and I don't even want to know right now. If she has any more blood I'm to call him immediately and he said he would set up a scope ASAP.

Really hard to focus at work with all this going on!
 
I'm so sorry that you are dealing with so much. :ghug: It's no wonder you can't focus on work right now... when S was diagnosed, I remember going to work and being in a complete daze and thinking it was all so inconsequential in comparison to what else I had going on (mind you, I still feel the same way! ;))

It certainly is a lot to take in all at once, however, all these tests, appointments, diagnoses or misdiagnoses are all moving you ahead towards treatment for A! I do hope some definitive answers come soon for you though, it's so hard to just be waiting and waiting for solid and conclusive answers and diagnoses.

Thinking of you!! :ghug: :ghug:
 
If the vasculitis is an EIM of IBD then like many of the EIM's they often appear well before the physical and clinical signs of the primary disease, which only serves to muddy the waters. :( A clear or indeterminate scope 2 years, 1 year or 6 months ago may produce far different results today.

Good luck mum, you are all in my thoughts. :ghug:

Dusty. xxx
 
Yeah that ^^^
DS had vasculitus in 2012 after dx but when his system was a mess in all fronts. Every time we decreased his pred it came back .
Hope things calm down today .
 
Good luck! I hope you finally get some definitive answers. Tell your husband we all totally understand about the denial. It is not easy!
 
MLP - How did the vasculitis present in your son? Was it only cutaneous or more systemic?

A woke up feeling really crummy this morning. She said her legs felt worse and she had a stomach ache. She tried to get ready for school anyway but ended up vomiting. I emailed the GI and still waiting on a response.
 
GI nurse called. They want to see her this afternoon. I'm a little surprised they want to see her when I was expecting them to say just try the Zofran. This is never-ending.....
 
Met with the GI, Rheumo, and General Surgeon all at once today which was nice because they collaborated and we have a tentative plan. They all thought her tummy felt "full" so she had an x-ray (no results yet). She has labs and fecal calp scheduled for tomorrow, CT Angiography for Monday, and a biopsy whenever another large nodule pops up. For now we're giving Zofran and waiting.
 
Good to know all the docs are collaborating. Hope the tests go okay. Sorry she is still not doing well
 
Sorry I wrote a reply yesterday but it didn't post.
Glad a plan for now is in place. How is she doing today?
 
Just got labs done and hoping to complete the fecal calp today as well. She just took some Zofran and went back to bed. No vomiting but she says her tummy hurts and she feels nauseous. She did eat a lemon bar before the labs (because I made her!) so at least she has something in her tummy. Hoping we get word about the x-ray soon.....
 
A is feeling much better than she was earlier this week. She said her stomach still feels crampy at times and I'm thinking she may be a tad constipated (which is unusual for her). No test results yet. .....
 
Confused. Just checked her online account and saw that the doctor changed the orders from a CTA back to MRI and MRA. No idea why. Can't get it done tomorrow though because no insurance approval yet. Several new nodules today though so calling the surgeon in the morning to see if he can fit her in.
 
Our GI does not like to do CT scans on girls, he does not like to radiate the ovaries unless it is an emergency situation.
 
Where on the body is the scan being done?

As Catherine has said, an MRI scanning is preferred over CT scanning particularly for children because CT’s use radiation to produce images whereas MRI’s use radio waves via magnets.

Also having IBD is a consideration as the abdomen is the area of the body that absorbs the most radiation. Given that IBD is for life many doctors these days look to reduce the amount of imaging done via technology that uses radiation.

Good luck! I hope they are able to fit her in. :ghug:

Dusty. xxx
 
He first ordered the MRI/MRA of abdomen, pelvis, feet and legs then changed it to CTA. He said the CTA would provide better images and she wouldn't have to be in the machine for as long. He expects the MRI to take 3-4 hours. Another doctor must have convinced him that the CTA was not the best way to go.

Calling the surgeon now. ....
 
Unfortunately the trade off for no radiation is the time factor. A CT of the abdomen takes about 3 minutes. an MRI takes 30-45 minutes. Add the other areas required and it doesn’t take long to reach 3-4 hours. :(

It is also true that CT’s and MRI’s each have advantages over the other when it comes to imaging and detecting anomalies. One is good at picking up one thing and the other something else. MRI’s being newer technology have had problems with imaging quality at times but I imagine as time passes this will continue to be refined and improved.

So the problem you may run into with requiring extensive scanning is, will A be able to lay still for that long. Any degree of movement will likely degrade the image quality and the more movement the worse it will be.

Has A had CT scans before? If not do you weigh up your options?

MRI - no radiation (the biggie here), extensive scanning time, are the images of the quality that is needed to detect the issue they are looking for.

CT - radiation, significantly faster image time, less chance of movement occurring, ?superior images.

The abdomen will be the area of greatest radiation pick up but is a one off worth potentially receiving the answers you are looking for?

Are the risks potentially any greater than those we face everyday with IBD in regard to medication? I think not and in my opinion they are much less so when CT is used sparingly.

Good luck mum, you are in my thoughts. :heart:

Dusty. xxx
 
3-4 hours is such a long time. Is A going to be sedated? My daughter had MRIs of her hips and knees and that took about 2 hours and it was really hard for her to stay still that long.
They had to redo some parts because she moved slightly.
Good luck, thinking of you both!
 
The biopsy is over and A did great! The surgeon was amazed that she never even flinched and even watched most of it. He told her he was reluctant to do it without sedation but that he was very impressed with her. So proud of her!

She had a bloody stool this morning but seems to be feeling okay. I'll email the GI if it happens again. For now I'm going to pretend that all is well and go watch a movie with my brave little sweetheart!
 
Oh well done A! What an absolute champion! :dusty::dusty::dusty:

I hope you get solid answers for your lass very soon mum and she long and lasting relief. Good luck!

Dusty. xxx
 
So much for pretending that "all is well". We spent a good portion of the movie in the bathroom. I don't even know what disease to curse because we don't even have an exact diagnosis yet!! Guess I'll email the GI. Maybe he can pull her lab results and figure something out.....
 
More blood....more vomiting.....

I've been emailing back and forth with the nurse this morning so hopefully we'll figure something out soon. Calprotectin still isn't back.

Is it okay to be giving Zofran 1-3x a day, everyday? Can it be a long-term med?
 
Sorry things are not going good yet. I really hope you get answers soon. Do you know how long it takes for Calprotectin to be back?
 
Mega hugs to you and lass DanceMom. :ghug:

Have you had any answers re the Zofran?

I know it often given as a twice daily and I think with paediatrics the reduced tablet dose means it can be taken up to three times but hopefully this has already been clarified for you.

I don’t know about the long term use and what studies would have been done. In view of the fact that is was initially a drug used with chemotherapy treatment and post op the use would have had a limited time frame with a very specific use and expected outcome. Now that it has moved away from that it is no doubt being used long term for various conditions.

I hope you have had answers by now and things are settling for A. :ghug:

Dusty. xxx
 
Calprotectin usually takes a week or so (I think). Hoping we'll have the results tomorrow. Picked up our sh*t kits (haha....yes hubby and I actually call them that) for the c-diff and parasite testing. Sometimes I wonder why we even bother. They're always negative. Poor girl has had explosive diarrhea 5 times today already, vomited twice. I'm just getting tired of twiddling our thumbs while she declines.

*Update* - Right after I posted GI emailed and has ordered fasting labs for tomorrow morning. Not sure which ones; she's never had to fast before. Also ordered Flagyl, Neurontin, Prevacid, and Ultram. Hoping it helps!
 
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