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How tall is she, DanceMom? My 9 year old (boy) is 65 pounds and about 4'6" and he's skin and bone (but also very healthy). It gives me perspective how little A really is. Wow.
 
Yeah that ^^^^
Wow my 9 year old is 4'8" and 80 lbs .

People used to tell DS all the time "boy look how much you've grown"
At the beginning of the school year.
This was when he hadn't grown at all
Just something you sometimes say to kids
 
She's 3'11" and has been that for a year. Maybe grew a few centimeters. She was up to 56 lbs at her heaviest. She's ridiculously small and now my 6 year old daughter's friends are starting to become taller than her. Her doctor has always been more concerned about her height than her weight.

Overall she's doing okay right now. The diarrhea has really slowed and many times the stool is normal. Almost always green or yellow though. No new EN in a few days and the perianal rash has cleared. Still getting stomachaches and joint pains but nothing too severe. We see the GI tomorrow so I'm anxious to hear what he has to say.
 
I noticed at dance tonight that A's cheeks looked a little rosy but I figured maybe she was hot (even though she usually doesn't get flushed when hot). When we got home and I looked at her closer it looked like her cheeks and bridge of her nose had been sunburned and the skin feels scaly. Pretty sure it wasn't like that yesterday. She's not on any medication right now and hasn't had any new foods or soaps. Anyone had this type of rash before?

(It isn't cold or windy here so I don't think it is from the weather.)
 
I would update the doc about it first thing, there is the malar rash or butterfly rash that occurs on the face and across the bridge of the nose.
 
Butterfly rash like in Lupus? My daughter had one while on Humira (that was drug-induced Lupus though).
Or could it be eczema? My (older) daughter has it on her cheeks.
 
DanceMom said:
Just a vent today....

Last night at dance two different moms commented to me how great A looks now that she has lost weight again. I didn't really know what to say to that. Yes, she's lost the moon face and round tummy the high doses of Prednisone gave her but her weight doesn't look as healthy as it did on the low doses of Prednisone. Her face has that sunken in look now (I'm sure you know what I mean!) and her legs look like sticks. It has been such a struggle for her to gain and maintain weight (and she isn't growing any taller either!) and I was taken aback to hear someone say she looked "so much better now." Even her dance teacher commented that she didn't look well and looked too skinny again so I know I'm not going crazy. Are parents just looking for something to say that they feel is positive or are people's views on body types and healthy weights that distorted?

A is 9 next month and fluctuates between 48 and 49 lbs.....
Click to expand...



I sooo wish people wouldn't always "report what they see". I always think it's rude (or just bad manners) to comment on someone's body unless it's a simple; "You look great!"
 
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It looks most like the butterfly rash but can that just pop up suddenly? There really aren't bumps, just scaly skin.

Actually, I just remembered that last night when I put her to bed I noticed that one cheek had a bright red spot. I asked her if she got hit in the face and she said no. Today the rash isn't bright, more like a dull red but it has spread to the nose and other cheek. I took a picture but it doesn't show well in the pic.
 
Call your doc if it gets worse.
Can you look on the inside of her mouth?
Grace had something similar and when I look inside she had open ulcers but it almost blended in until I looked closer.:eek:
 
My daughter's butterfly rash came on very suddenly - she was playing soccer and when she came home she had that rash. I'd never seen it before and had no idea what it was, so I called her rheumatologist.
 
She's in bed now but she didn't complain about her mouth bothering her. We see the GI tomorrow but his response is usually "see the dermatologist". This rash doesn't itch or bother her in any way and I'd say she's usually pretty sensitive about things like that.
 
My daughter's rash didn't itch either. Since A is undiagnosed, it might be worth getting a picture of the rash (if you can get a good one) to show her rheumatologist, especially since (if I remember correctly), the doctors think she has some sort of autoimmune disorder.
 
Interestingly enough....the rash looks better today. I think this girl just likes keeping me on my toes.

We met with the GI today and have a tentative plan in place. As far as a diagnosis goes he's leaving that in the Rheumy's hands for now. They both agree she has an immune condition of some sort, but whether or not that is IBD is still up in the air. Apparently these conditions can mimic each other and for whatever reason an accurate diagnosis has been next to impossible. Luckily these conditions can be treated with the same medications so we're going with Methotrexate.

Our GI wants us to start with the injectable form because that is the most likely to be absorbed and the least likely to have side effects. A isn't excited because she doesn't think I'm "qualified" to give shots, lol. We are going to finish our immune work-up before starting though which could be weeks or months. We're not in a huge rush because she's maintaining okay for now. Both Rheumy and GI agree that it isn't wise to leave her unmedicated. Her symptoms definitely affect her quality of life and we don't want any further problems.

We discussed her growth and my concerns with that. He wasn't too concerned about her weight (10th %ile I believe) but said her height is something to be watched closely (3rd %ile). If the mtx proves to be helpful but she still isn't growing he'd like to try EN via NG or g-tube. He talked with A about it for awhile, even showed her a doll with a g-tube (which she called "creepy"). She's definitely not sold on the idea but hopefully it won't come to that.

So A may or may not have IBD but this place feels like home so I'll be hanging around!
 
When Brian was little his symptoms weren't much... He had diarrhea for 9 months after an illness and antibiotic. Then he was on mild sulfasalazine and flagyl...but it seemed to increase the diarrhea so I weaned him off the medication and did a gluten free diet and he got formed stools. Back then I thought ..formed, well then he's good and . I think now that he went into a bit of remission but probably had a constant underlying inflammation because his height and weight were definitely different than the other kids at school. I chose to ignore it... "I'm small so that's why he is small" and he was only 6yrs old at the time. He went unmedicated too. In fourth grade the bottom fell out... it seemed like he went from mild to severe in a matter of months. I'm only saying this because its good you are agreeing that height and weight are an important symptom. Glad you have a plan. And we've found out the NG tube is actually a relief and comfort to us and my son. I don't have to nag him about eating anymore. I know he's getting the calories he needs all while sleeping. (And the EN formula has all kinds of vitamins and minerals so its like they're eating all the healthy things they probably wouldn't be at the 'dinner table'!)
 
Stupid diarrhea is back. It hadn't been an issue for the last week or two but of course it strikes at the most inconvenient of times - when A is representing her dance team in the Christmas parade after party gathering. I had to run (literally) her to the bathroom 3 times in a 3 hour period. She was so aggravated at the situation and told me she was ready to start the mtx as soon as possible. The joint pains aren't letting up either and she just wants to dance without all the problems.
 
Oh no, poor love. :( :ghug:

I so hope the Methotrexate turns things around for her. :goodluck:

Thinking of you both. :heart:

Dusty. xxx
 
Dance mom,
Has she ever seen an endocrinologist? With her lack of growth I think it would be worthwhile getting a consult. I know your doctor is not overly concerned about it at this point but like another thread mentioned it is important to check into growth issues as early as possible for more time to treat them prior to puberty.
 
No, we haven't seen an endocrinologist though it was suggested by our first GI. I'm not sure I want to add another doctor into the mix right now. Maybe after her diagnosis is secure.

The Rheumy called today but unfortunately I missed his call. His message said that he reviewed the pathology slides from her leg biopsy himself and wanted to discuss some things. I'm wondering if they did determine it was vasculitis. Hopefully I'll be able to speak with him tomorrow.

And her fever is back - 100.7. Says she feels okay though so hopefully this passes quickly.
 
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When I put her to bed I checked her legs....3 more EN spots. Perianal rash is back too. I'm starting to notice that these three things typically go hand in hand.
 
That screams all sorta of autoimmune flags .
DS has vasculitis as an extra part of his disease - crohn's PLUS a whole lot more ( to be later defined ;) )
 
She still has a fever...more EN spots (now on one arms as well as both legs)...perianal rash...and severe knee pain. Her joint pains are typically mild but now she is all but refusing to walk because her knee is hurting her so badly. We've iced, elevated, and given ibuprofen but it doesn't seem to be helping.

And her newest symptom - black stool. I'm assuming it is blood we're seeing but maybe not. We've only seen bright or dark red blood before but now that her transit time seems to be more normal I suppose black blood is possible.

I emailed the rheumy to update him. Hopefully I'll hear back from him tomorrow.
 
Have you called the GI?
Black blood means higher up bleeding.

Has she started any new meds? How about iron pills?
 
No call to the GI. At the last appointment he let me know that the Rheumy was in charge now so I'm going through him first. Hoping he'll want to do her labs this week instead of next.

She's not taking any medications now. Just her kiddie multi-vitamin (that she's been on for months) and ibuprofen occasionally. The Rheumy advised that ibuprofen was fine to give and the GI agreed.
 
Oh Dancemom I'm so sorry she if feeling so bad. I hope the Rhuemy gets labs done sooner rather than later for her.
 
Time to call rheumatologist on call??? It's not obnoxiously late and she is really having concerning symptoms....
 
Fever broke with second dose of ibuprofen and she fell asleep soon afterward. I think the fever made her more uncomfortable than she realized. She had one more BM before bed and it was green with a small amount of red blood. So we're back to our usual green and red stool....in the spirit of Christmas and all.

I'm hoping that she wakes in the morning and feels better. If not she can stay home and rest while I wait to hear back from the Rheumy. These EN are getting out of control and I'm wondering if the large one on the side of her knee is what's causing her knee pain. She has 3 on one leg, 7 on the other, and 1 on her arm. So frustrating!
 
DanceMom said:
So we're back to our usual green and red stool....in the spirit of Christmas and all.
Click to expand...

Leave it to us IBD moms to make a joke about green and red poop. I was eating peanuts and spit them all over my computer. Jack is busting up as well :rof:
 
I've emailed and called but still no response from the Rheumo. I'm trying not to be frustrated but I'd really like to know what he wanted to review regarding the pathology slides.

A is hanging in there. Her knee is still bothering her but ibuprofen and exercise have helped some. The fever is gone (for now) but the EN are taking over. Her arms and legs look horrid. Her GI symptoms are minimal which is an interesting change.
 
Definitely not changing doctors. This Rheumy works very closely with A's GI and I think he may have us on track for good answers. I'm just used to getting prompt responses so I'm a bit annoyed at the moment. I think the GI has me spoiled. lol
 
Well, the nurse called to see what I wanted (I guess my email and phone message weren't clear enough? ) and said she'd leave a message for the doc. Still no call from him. Maybe tomorrow.

A's ankles and knees hurt and I'm hesitant to keep giving ibuprofen. She's started having yellow diarrhea now, I guess so we can experience all colors of the rainbow. Fun times......
 
I've pretty much given up on the Rheumy calling. I guess I'll just wait until she has her labs done next week and start putting the pieces together myself. Frustrating, but I guess knowing about the leg biopsy wouldn't really change our plan for the next few days anyway.

No new EN in a few days and no fever either. Mostly just battling the joint pains - knees, ankles, wrists. She's also complaining of a new spot on her foot. I'm not sure if it would be considered her heel as it is up a little higher. This is a stupid question, but is your heel only the bottom part or does it extend up the back of the foot? Or is that considered the ankle? lol Lord help us both!! lol
 
Johnny had mysterious pains that seemed to move around from ankles, to wrists to feet, knees. The Dr suggested it might be Chronic recurrent multifocal osteomyelitis. It ended up going away when he went off the prednisone and got better so we never ended up getting the MRI. If you look it up, it sounds like something most kids out grow. It also could have been the joint pains associated with crohn's. Our GI didn't think it was RA because Johnny's SED and CRP were normal and there was no redness or swelling. And sometimes the pain was not in a joint. It is best to talk to an Rheumatologist, but I agree they are very hard to get into!

I don't know if this helps or not but a lot of what you describe is very much like the endless weird, unexplainable stuff we experienced with Johnny. It went away once his crohn's was under control. I hope you get some more answers soon. It is a process, and very frustrating. Sorry :(
 
The more I read the heel can go back up the ankle.
I hate waiting we are in a watch and see mode here as well with joints.
The arthritis / joint stuff related to crohn's is better since it does less damage .
It tends to move from joint to joint and include muscles etc..,
DS has that for sure.
When it is in the same joints consistently without a break in between that is where we are so hence the watch and wait to see .

IMO rheumos are few so they tend to get large case loads .so as long as you have a plan keep calling but .... Realize it may take longer for a non urgent as in not going to change the treatment plan response kwim .

Good luck and keep us updated
 
Grace has a spot on her heal also. :confused2:poor girls.
Yes, MLP is right. I was told when the pains stay in the same joint it's more likely JRA.
To complicate things more, you can have BOTH.......IBD related arthritis and JRA.:yfaint:

I hope she improves. Is she able to keep up with her dance and school?
 
If it's the back of her heel it could be enthesitis. Both my girls have heel pain, it's very common with the type of arthritis they have (spondyloarthropathy).
Hope she feels better soon!
 
Sorry to hear she is struggling and you still haven't heard back from the Rheumy. Hope you can get some answers and help soon.
 
The heel extends up the back of the foot to around the area you normally develop blisters with new shoes. Ouch!

I so hope you soon have solid answers mum and your girl long overdue relief, bless her. :heart:

Dusty. xxx
 
Our next appointment isn't until the end of January. I'm hoping we don't have to wait that long to hear something! And it'd be nice to start the mtx before then too. I guess things will depend on her next set of labs. Praying for antibodies !
 
Today my youngest is taking her turn at being sick. M has respiratory issues since birth but they've gotten better as she's gotten older and her airway grows. She's off all medications now but we do sinus rinses when she needs them. She woke up Friday morning and vomited lots of mucous so we started the rinses again. Yesterday she was fine. Today she has a horrible cough and is very short of breath. Possibly a fever (I'll check when she wakes from her nap). Hoping she doesn't spread this to A who has asthma as well!
To make things even worse my hubby thinks he has MRSA again. We should probably be quarantined! Lol
 
Sorry to hear about the illness. I hope your other DD gets better soon
Is A on meds for her asthma year around?
Grace is on 3 different kinds and it seems to help during illness.
 
A used to be on Advair but she's maintaining without it okay for the time being. Her flare-ups seem to coincide with her GI symptoms and they don't respond well to medications. That's how she ended up on an adult dose of Advair. We give her Albuterol as needed but I'd do a daily inhaler again in a heartbeat if necessary.

M has a more classic asthma and responded well to the very first inhaler we tried - QVar40. She was on it for years and just recently weaned. Since weaning she's had a few colds and even croup but did okay. This is the first time I've been concerned about her in awhile. She definitely has some sort of virus (she does indeed have a fever) so I'm hoping we don't end up in the ER. She uses Xoponex as a rescue med and it isn't doing much right now.
 
Grace does pulmacort (nebulizer) year around and during cold seasons she does it twice a day.
She and my son are also on Singular. That's the med that's made the biggest change allergy wise. Also their both on Certinez (Sp). Of course Grace gets Albuterol when in a flare. And that's all just for Asthma!!! My goodness. lol
 
Singulair is a great maintenance drug for asthma. My son took it for allergies which he outgrew thank goodness. I hope your other daughter improves quickly and doesn't spread it.
 
Singulair is used primarily for very mild intermittent asthma as monotherapy .
Typically Flovent or pulmocort is used for mild persistant asthma .
Singulair + ICS( Flovent or pulmocort ) or Advair is used for moderate to severe persistant asthma .
Similar to Ibd there is a step up program.

http://www.nhlbi.nih.gov/guidelines/asthma/asthsumm.pdf


Figure 12 page 41 ( PDF page 53 )list meds per condition .
DS takes meds year round to avoid flares during colds .
He was on high dose Advair . He is now on Flovent
 
Both of my girls have been on Singulair at some point. We discontinued it for A because it didn't seem to help. We discontinued it for M when she outgrew her dairy allergy and QVar alone was enough. A tried Flovent, QVar40, and QVar80 with Singulair without success. The Advair was the only thing that helped. Even Xoponex doesn't work for her and she needs Albuterol. She's a tricky kid.

Fortunately M responds well to medications because she had an asthma attack this evening. She's doing better now but I expect things to get worse again. Looks like we may go back on the QVar to prevent this from happening again. Ugh!
 
Took M to the Pedi this morning. Her right lung is hyperinflated due to asthma. Bring on the Prednisone! Lol Luckily just a 3 day course so I think we'll survive.

A has some large unexplained bruises (not EN) on her biceps and thighs. Anxious to get her labs done tomorrow!

Just want healthy kids for the holidays!
 
Sending loads of luck and well wishes your way Dancemom that the holidays are indeed healthy ones. :ghug:

Good luck with the labs!

Dusty. :heart:
 
You know when you check your phone and see the the hospital has called twice, the latest being at 7:15 PM that something isn't right. A had her team dance party last night and when I pulled my phone out and got the Rheumy's voicemail that he needed to talk to me and would be waiting at the hospital for me to return his call my heart sank.

Some of A's labs have come back. She had extremely low levels of IgG and the Rheumy believes that her body may not be making antibodies. We are still waiting on the antibody titers for pneumovax and tetanus to come back. At this point she's been labeled as having "immune dysfunction" but after further testing that may change to "immune deficient".

She also has small cell vasculitis. At this time we're unsure if that is caused by immune deficiency or a rheumatic disease. IBD has not been completely ruled out either. I'm super confused by this diagnosis and was told it is very rare in children (other than HSP and Kawasaki Disease which she does not have). We can't treat the vasculitis until the immune testing is complete which the Rheumy admitted was risky. He wants me to notify him immediately if she so much as catches a cold.

My head is spinning (and aching) right now and this is not at all what we were expecting. My husband isn't dealing well and doesn't even want to talk about it. Even the Rheumy didn't expect her IgG to be so low and had it not been for our GI he wouldn't have even tested it. So we will definitely be starting mtx when testing is complete and possible therapy for immune deficiency as well. You guys are like family now so I don't really want to leave this forum but it looks like we're probably not dealing with IBD.

To anyone with an undiagnosed child - please see a Rheumatologist/Immunologist ASAP! I feel like we wasted 8 years seeing GI doctors. Fortunately we found a great one who referred us or we would still be without answers. So many things look like IBD and A had textbook symptoms.

I'll update again when I know more. Thank you all for your continued support! We are taking A out for her 9th birthday tonight. Having a nice dinner and then watching Cirque du Soleil La Nouba at Downtown Disney. It's a surprise so she's going to be stoked! It will be nice to take my mind off of things for awhile.
 
Have fun tonight! and Happy Birthday A!
I don't know anything about immune dysfunction/deficient but I'm going to do some research as all these kids are like family.
I hope for a solid treatment that allows her to dance the night away and feel great while doing it.
I don't think you need to leave us completely as you say we are like family and if you do I hope it is because you are all too busy enjoying life to take the time to come here.
 
Really sorry to hear this but glad they're figuring things out. Keep us updated if you can, we'll be thinking of A!
Hope she enjoys her birthday!
 
My friend's son has this, or something very similar. He essentially doesn't have an immune system and is on antibiotics all the time, BUT he is living a normal life, growing, and happy. They just have to take precautions at home and school. It's a tough dx but manageable.

After you learn more, I can check to see if my friend is open to chatting with you. I know they are part of a support network and their son was dx'd very young so their experts now. Very sweet family.

HaPpY BiRTHdAy, A!!
 
Been trying to research the small cell vasculitis today since we are confident that A does have that. Seems like it can be caused by infections, IBD, and other autoimmune conditions. Still waiting on her ANCA test to see if she has ANCA-Associated vasculitis. The unknown is scary. The idea of multiple diagnoses is scary.

I came across this article that I found very interesting. http://www.dailymail.co.uk/health/a...lood-vessel-disease-vasculitis-easy-miss.html
I think these diseases tend to be misdiagnosed, especially in kids, because they are rare and often present as other things (like Crohn's Disease). I am just so thankful for a dedicated team of doctors that are doing their very best at figuring out the beautiful little puzzle that is A.

As for dance, A is doing a solo this year to "You are Good" by Nicole Nordeman. It brings tears to my eyes every time she performs. Such a perfect song for her. When competition season starts (in February) I will post a link so those interested can watch her perform online.
 
I looked up that story. Here's a clip............

The condition often arises as a result of a secondary infection. Chronic inflammatory conditions such as rheumatoid arthritis, lupus and Crohn’s disease are often the underlying cause, but viral infections can also trigger vasculitis.

Read more: http://www.dailymail.co.uk/health/a...sease-vasculitis-easy-miss.html#ixzz2o2tPagyD
Follow us: @MailOnline on Twitter | DailyMail on Facebook

So do they think it's secondary? Have they considered JRA? If you want info on that I can get you some. Matter of fact theirs a JRA that has to do with the whole system.
 
We aren't sure what is causing the vasculitis just yet. The Rheumy mentioned a few things he is considering and hopefully the pending labs will shed more light on that. She's had the cutaneous vasculitis (the reddish/purple lumps on her arms/legs) since she was about 2. Nice to finally know exactly what it is.

In reading these online articles it seems that so many of these conditions overlap and things get really confusing quickly. Okay, giving my reading a break for awhile so we can go and celebrate! A doesn't officially turn 9 until January 7th but I think we all need some fun right now so we are partying it up a little early.
 
Fwiw DS had vasculitis multiple times last summer ( believed to be secondary to Ibd).
It did not clear up with Mtx -kept getting worse once we tried to wean pred.
Remicade stopped it .

Good luck
Glad your Rheumo is on top if it.

Vasculitis was why DS went to see his Rheumo .
 
So many things on your plate right know. I really don't know what to tell you. So many years we are looking for a DX that when we are close to one is scary. I hope everything turns to the best for you and your baby.
 
Sorry to hear of the new dx.

Paging Malgrave, I think they have some knowledge on the immune issues.

Thinking of you and yours:ghug::ghug:
 
I will definitely take the time to read through those links. I want to educate myself about the possibilities so that I feel prepared. My way of coping I guess. It is just a strange feeling to be convinced that your child has a disease (IBD) only to find out that they may have something entirely different and possibly even multiple different things. I feel like we're entering a whole new world that I know nothing about.

We had a fabulous time celebrating last night! I know A wasn't feeling 100% though and walking around was difficult for her. But to hear her squeal and giggle at the show was just priceless.
 
My heart goes out to you.
Handling multiple diseases is hard both emotionally and mentally.
Believe it or not, I think leaning to deal with one dx helps you deal with the others.
It doesn't mean we like it.
The love of our kids keep us going.
 
My brother is deficient in IgG. He is now 53 and living fine. He gets an infusion every month that puts IgG back into his blood. He's followed by an immunologist. It can run in families so this past summer I took DS to an immunologist to get him tested. (I had also read some of Malgrave's threads that immune deficiency can mimick ibd). The tests just confirmed that my son has crohns. I was actually hoping it was this instead of crohns because I see that my brother has lived pretty normal once he started treatment some 20 years ago.

I'm praying for you.
 
A few more labs have come back now. On a positive note A's liver numbers are finally back in the normal range and so is her Alk Phos! Unfortunately, her globulin is still low and now her wbc are low too. She also has a low reticulocyte count. Not exactly sure what that means but I'm sure the doctor will clue me in soon. It seems like things are starting to unravel.......

And A's fever is back. She may have caught M's virus. Hoping she wakes up feeling better.
 
We made it through Christmas without any major symptoms! A does have some new lumps (apparently vasculitis) on her leg. There are probably about 6-7, most of them being small. This morning she's been complaining that she feels extremely hot and just doesn't feel well. No fever and no specific symptoms (she just says "I feel sick"). I put an email in to the doctor so I'm hoping I get a response soon. Anyone else ever experienced this overwhelming feeling of being hot? She's taken all of her clothes off and is resting under a fan but says she feels like she is burning.
 
We aren't sure what is causing the vasculitis or what parts of her body it is affecting (other than the skin). We are still waiting on the vaccine antibody labs to know if we're dealing with a true immune deficiency. Researching "vasculitis" and "immune deficiency" gives some basic general information but since we don't have a specific diagnosis yet I don't have a lot to go on.

A frequently complains of being hot but not to the extent she's feeling today. Usually she develops a fever soon after. She's napping now (another sign that she doesn't feel well) so I'll see how she feels when she wakes. If she's no better I'll call the Rheumy. It is just so difficult to get a response from his office.....
 
Sorry to hear she isn't feeling great. Hope you get a call back soon. My son used to feel really hot on and off before diagnosis, strangely enough he didn't feel hot to touch.
 
Lab results are still trickling in. Pneumococcal Serotypes look normal so that's great. She has low IgG but apparently can still make antibodies. Her ANA was negative so I'm assuming that rules out some autoimmune conditions. Still waiting on 2 more vaccine tests and ANCA.
 
Doctor finally called! He feels that she made antibodies well and that the low IgG isn't an immediate problem. We will retest in 6 months. He wants to see her next week to reevaluate for arthritis and to reexamine her. At that time the nurse will teach me how to give mtx injections and we will also determine if steroids are necessary to induce remission. For now she is considered to have primary vasculitis but that diagnosis could change (so I won't get too comfortable with it, lol).
 
Good luck! The mtx shots aren't bad at all. Hope she starts feeling better soon.
 
Good luck at your appt and a path forward
Mtx shots are unnerving to give at first but easy for the kiddo
If you don't make them decide the when
Just more shot done sorta thing
 
Hospital pharmacy just called. Mtx is only $8/month without insurance! Unbelievable! A's dose is .5 ml/week. Does that sound about right?

We just watched a youtube video about mtx injections. This lady self-injected in her stomach (which A let me know real quick was not an acceptable spot for her, lol). A isn't afraid of the shot, just nervous about me being the one to give it, lol. I promised her to put my big girl panties on (of course I'm nervous!) and do a good job. I also promised ice cream afterwards!! Haha!!

We also have a prescription for Mobic but we're holding off on that until it is decided if steroids are necessary.

Vasculitis....who would have thought.....
 
My daughter loves Mobic! I hate that she has to take it but it really helps her with pain. It does make her nauseous though so we had to add Prevacid to protect her stomach.
Also, when she was on methotrexate I used to inject her in her thigh or arm. When she started to inject herself the nurse taught her to do it in her stomach, and she quickly realized that hurt less than her thigh or arm. I was surprised since she's so thin, but it worked so…
Ice cream is always a good idea, both for A and mom :)
 
When I have given the shot, Grace laughs and says, is that it.
We give the shot in her thigh. We alternate between legs.

Hugs
 
We did thighs and back of arms for DS for Mtx.
Don't be surprised if some leaks out.
This can happen as well
Just have a paper towel ready since Mtx stains yellow .
DS didn't care about the shot either .
 
A is ANA and ANCA negative, so as I'm reading about the different types of vasculitis none really seem to fit. She's just never a perfect fit for anything. I guess what I'm looking for is a specific name and not just a generic "systemic vasculitis". I want it to explain all of her symptoms, including her lack of growth. The only proof of vasculitis we have is of her skin and that doesn't explain much of anything. She's had multiple GI biopsies. Wouldn't that have picked up on vasculitis of the GI tract?

I have a lot of questions for both doctors! In the meantime I'm satisfied with trying mtx since it is useful in IBD, JIA, and vasculitis which are all still very real possibilities. But a solid answer would be nice.
 
I keep forgetting to tell you DanceMom but we met a girl at our rheumatologist's office that was my daughter's age and was diagnosed first with vasculitis (at age 10) and then JIA (at age 12). She's taking methotrexate and Enbrel and doing fabulously.
 
Hugs
Sorry to hear that you don't have easy answers but glad a tha anca was negative.
Sometimes its nice to have a name for the disease .
The docs have a name for some but not all of what is going on with DS so I understand your frustration.
 

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