Well she started sobbing uncontrollably from the abdominal pain and then vomited. Ugh. They gave her morphine and zofran so we're back to square one. They put her on bowel rest as well. GI is not coming to see her today. I'm taking deep breaths on that one.....
Our Vasculitis Journey
- Thread starter DanceMom
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So sorry to hear. Sending prayers and hugs your way!
On-call GI came by. They still think this is just a virus that hit her hard due to being immune suppressed and battling a UTI. He met with her GI yesterday and they are in agreement that they are 95% sure she has Crohn's but because of the possibility this could be PAN they want to go ahead with a CTA. Apparently the MRA she had only detects large vessel vasculitis, not small or medium. I've agreed to one last test. If this proves to be Crohn's then we are likely on to Remicade. They feel her mtx dose is sufficient and we should have seen improvements by now.
A has agreed to drink fluids in small amounts so as not to get dehydrated again. The diarrhea has let up slightly but once they turn these fluids off she will have to take small sips every few minutes to keep up. So plan is to go home soon and schedule CTA for next week. Oh, and she is determined that she's competing on Saturday. I'll post a link and times for those that would like to watch online. This girl is amazing (In my biased opinion! Lol).
A has agreed to drink fluids in small amounts so as not to get dehydrated again. The diarrhea has let up slightly but once they turn these fluids off she will have to take small sips every few minutes to keep up. So plan is to go home soon and schedule CTA for next week. Oh, and she is determined that she's competing on Saturday. I'll post a link and times for those that would like to watch online. This girl is amazing (In my biased opinion! Lol).
We are home now! A is tired but was feeling much better and wanted to try a few bites of applesauce. About 20 minutes later she was doubled over in pain again. So back to clears I suppose. She refuses Gatorade, mostly wants Sprite. She took a few sips of the Dole juice I had but then said she'd had enough of that. Doesn't want chicken broth or jello. Any ideas?
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Pedialyte singles or pedialyte Popsicle
Slushies - use a blender ice chip siand poor gatorade over it
Koolaid pops
Italian ice
Ensure clear ??
Slushies - use a blender ice chip siand poor gatorade over it
Koolaid pops
Italian ice
Ensure clear ??
She hates the taste of Pedialyte. We have 2 different flavors of Italian ice so maybe she'll try that later. She's typically not a picky eater but is being very selective right now. This is a child that has me bring her snacks on the toilet when she has bad diarrhea. She will vomit and then immediately ask what can she have to eat. But this time is different for some reason and I'm not sure why. How long is it okay to be on clears? My only instructions were to go from clears to a bland diet and let her decide when she's ready for that.
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Just an fyi there is "clear" pedialyte which can be mixed in things
it helps
http://www.healthychildren.org/Engl...ng-Dehydration-with-Electrolyte-Solution.aspx
Try to boil a chicken at salt and a fresh veggies ( onions carrots celery - whole pieces) then she can have bland chicken stock in a cup and you have chicken for later when she is up to it.
Also you can make homemade pedialyte
the point is if she is vomiting and having diarrhea things can get off balance quickly.
http://www.100daysofrealfood.com/2013/01/31/homemade-pedialyte/
http://babyparenting.about.com/od/recipesandcooking/r/electrolytedrnk.htm
http://dailymom.com/nurture/3-natural-substitutes-for-pedialyte/
you get the idea
it helps
http://www.healthychildren.org/Engl...ng-Dehydration-with-Electrolyte-Solution.aspx
Try to boil a chicken at salt and a fresh veggies ( onions carrots celery - whole pieces) then she can have bland chicken stock in a cup and you have chicken for later when she is up to it.
Also you can make homemade pedialyte
the point is if she is vomiting and having diarrhea things can get off balance quickly.
http://www.100daysofrealfood.com/2013/01/31/homemade-pedialyte/
http://babyparenting.about.com/od/recipesandcooking/r/electrolytedrnk.htm
http://dailymom.com/nurture/3-natural-substitutes-for-pedialyte/
you get the idea
Thank you! I will definitely make the homemade Pedialyte tomorrow. She associates chicken broth with clean outs so I know she won't go for that. But maybe choosing a flavor of KoolAid will encourage her to drink. This diarrhea is atrocious so she has to drink a lot to keep from getting dehydrated again. Frustrating!
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Try veggie or beef broth... a bit different from chicken. Also, and this sounds a bit silly but, when S was on exclusive EN, he could only have clear liquids - broth being one of them. To vary it up, he would sometimes ask to have his broth in a mug rather than a bowl. :yfaint: Sounds like nothing at all but, I guess when your options are so limited for variety, the 'mug' was a change. If she never drinks broth in a mug, it might be a novelty for her???
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Very glad to hear she is home. Ice pops of all different kind were what Caitlyn liked. We went out and bought a bunch of different ones to give her variety.
Well, we made it through the weekend and A danced beautifully. Her fatigue was noticable but expected.
She has not had a BM since leaving the hospital on Thursday. She's still eating a pretty bland diet and not as much as she typically would....but no BMs. She's beginning to feel bloated and I'm afraid her appetite isn't returning to normal because of this. She's drinking plenty. I don't want to give Miralax because she's prone to diarrhea. Any suggestions?
Oh, and her stool test came back showing "moderate WBCs". What is this an indication of? We were told her episode was viral in nature so would that cause WBCs in the stool? Her cultures were all negative.
She has not had a BM since leaving the hospital on Thursday. She's still eating a pretty bland diet and not as much as she typically would....but no BMs. She's beginning to feel bloated and I'm afraid her appetite isn't returning to normal because of this. She's drinking plenty. I don't want to give Miralax because she's prone to diarrhea. Any suggestions?
Oh, and her stool test came back showing "moderate WBCs". What is this an indication of? We were told her episode was viral in nature so would that cause WBCs in the stool? Her cultures were all negative.
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Here is a link to what WBCs in your stool might mean:
http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=stool_wbc
Basically it says they may be seen in infection or in IBD.
http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=stool_wbc
Basically it says they may be seen in infection or in IBD.
I think 1+ reducing substances can occur due to viral gastroenteritis. It means some sugar was not absorbed. The scale is usually 0 trace 1,2,3,4+ so 1 is on the low side. It could also be seen in lactose intolerance or other malabsorption of sugars (these occur transiently in gastroenteritis).
In terms of stool leucocytes, viral gastro doesn't usually have wbc in the stool. Moderate WBC suggests a bacterial gastroenteritis or inflammation in the intestine, especial colon (I think,but am not sure). Did your daughter have inflammation in her colon on endoscopy?
"Stool Analysis and Cultures
The presence of a large number of leukocytes in the stool indicates an inflammatory process characteristic of certain invasive organisms such as Shigella, Campylobacter, and certain strains of E. coli (EIEC, EHEC). The absence of fecal leukocytes is typical of colitides caused by enterotoxins secreted by viruses (V. cholerae, rotavirus, Giardia lamblia), parasites (Entamoeba histolytica), certain strains of E. coli (ETEC, APEC, EAEC), and food poisoning bacteria (Staph aureus, Clostridium perfringens, Bacillus cereus). Several organisms produce variable findings on microscopic stool examination including Salmonella, Yersinia, and Clostridium difficile. Although fecal microscopic examination is neither infallible nor even helpful in all cases, it is inexpensive and yields immediate information that can often guide therapy. http://www.fascrs.org/physicians/education/core_subjects/2000/colitides/"
and this
"the presence of fecal leukocytes (or more recently abnormal fecal concentrations of calprotectin or lactoferrin) is an excellent way to confirm intestinal inflammation or inflammation in general" http://gi.org/guideline/management-of-crohn’s-disease-in-adults/
In terms of stool leucocytes, viral gastro doesn't usually have wbc in the stool. Moderate WBC suggests a bacterial gastroenteritis or inflammation in the intestine, especial colon (I think,but am not sure). Did your daughter have inflammation in her colon on endoscopy?
"Stool Analysis and Cultures
The presence of a large number of leukocytes in the stool indicates an inflammatory process characteristic of certain invasive organisms such as Shigella, Campylobacter, and certain strains of E. coli (EIEC, EHEC). The absence of fecal leukocytes is typical of colitides caused by enterotoxins secreted by viruses (V. cholerae, rotavirus, Giardia lamblia), parasites (Entamoeba histolytica), certain strains of E. coli (ETEC, APEC, EAEC), and food poisoning bacteria (Staph aureus, Clostridium perfringens, Bacillus cereus). Several organisms produce variable findings on microscopic stool examination including Salmonella, Yersinia, and Clostridium difficile. Although fecal microscopic examination is neither infallible nor even helpful in all cases, it is inexpensive and yields immediate information that can often guide therapy. http://www.fascrs.org/physicians/education/core_subjects/2000/colitides/"
and this
"the presence of fecal leukocytes (or more recently abnormal fecal concentrations of calprotectin or lactoferrin) is an excellent way to confirm intestinal inflammation or inflammation in general" http://gi.org/guideline/management-of-crohn’s-disease-in-adults/
Had our follow-up today. A diagnosis is still unclear....of course. Scope biopsy findings were non-specific which was not very helpful. The team wants her to have an angiogram but I've declined for now. She's been through enough.
The plan for now is to have leg biopsy slides reviewed at CHOP (to see if we're really dealing with vasculitis or not), start Elavil to try to control symptoms, and have full labs done. If IgG is still low and the viruses/infections continue we may consider IVIG therapy. We're also watching the growth closely to make sure nutritional therapy isn't necessary.
This whole process is so frustrating. Mostly I'm frustrated that my girl still isn't well and no one can tell me exactly why.
The plan for now is to have leg biopsy slides reviewed at CHOP (to see if we're really dealing with vasculitis or not), start Elavil to try to control symptoms, and have full labs done. If IgG is still low and the viruses/infections continue we may consider IVIG therapy. We're also watching the growth closely to make sure nutritional therapy isn't necessary.
This whole process is so frustrating. Mostly I'm frustrated that my girl still isn't well and no one can tell me exactly why.
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Its hard when everyone is still confused.
Are you continuing on Mtx or adding remicade ?
Or just elavil by itself ???
I wish things were easier
Are you continuing on Mtx or adding remicade ?
Or just elavil by itself ???
I wish things were easier
Continuing with the mtx for at least 2 more months. I'm doubtful, but agreed to give it a little longer. From their perspective her disease is mild (very small fissure, small white ulcers in stomach and small bowel only, no anemia) and escalation of therapy isn't warranted at this time. From my perspective the ulcers appeared after starting mtx so I'm not sure what use it is. I'm tempted to drop it entirely but I won't. The GI feels that it is halting disease progression and therefore we should continue. Time will tell I suppose.
A had 3 good days with no symptoms (other than fatigue)! The diarrhea started again yesterday but I'm still hopeful. Perhaps more good days are in our future!
Besides the fatigue, A is also experiencing hair loss. Her hair has always been thin and fine (so is mine) but she is noticeably losing it rapidly. We first noticed this when she was hospitalized 2 weeks ago. Her hair was covering everything - her clothes, the bed, the floor, etc. When I brush it it comes out by the handful. I have a few theories as to what could be causing it. I know that anesthesia can cause hair loss and she did have scopes on the 6th. Would it still be causing her to lose so much weeks later? And I know mtx can cause hair loss so it could be from that. Or....I'm wondering if this could be a vitamin deficiency issue. She will have labs next week so her levels will be checked then. Anyone else's kiddos lose so much hair?
Besides the fatigue, A is also experiencing hair loss. Her hair has always been thin and fine (so is mine) but she is noticeably losing it rapidly. We first noticed this when she was hospitalized 2 weeks ago. Her hair was covering everything - her clothes, the bed, the floor, etc. When I brush it it comes out by the handful. I have a few theories as to what could be causing it. I know that anesthesia can cause hair loss and she did have scopes on the 6th. Would it still be causing her to lose so much weeks later? And I know mtx can cause hair loss so it could be from that. Or....I'm wondering if this could be a vitamin deficiency issue. She will have labs next week so her levels will be checked then. Anyone else's kiddos lose so much hair?
She's only been checked for Vitamin D-25, last May. At that time her level was 21 (30-100). We were told to start a children's multi-vitamin and we did.
I don't think her GI is big on checking vitamin levels. I think he only ordered them this time because I mentioned that her fatigue is getting worse and she is struggling to get through the school day without falling asleep. I'm having to pull her out of her dance classes early because I can tell she's tiring and I don't want her to get injured.
We're doing full labs next week. He wants to be sure she is completely over her stomach virus before testing.
I don't think her GI is big on checking vitamin levels. I think he only ordered them this time because I mentioned that her fatigue is getting worse and she is struggling to get through the school day without falling asleep. I'm having to pull her out of her dance classes early because I can tell she's tiring and I don't want her to get injured.
We're doing full labs next week. He wants to be sure she is completely over her stomach virus before testing.
I should also add that her remaining hair seems very dry and brittle, not healthy like it used to. I don't use heat on her hair and rarely even use hairspray. She uses conditioner daily and leave-in conditioner several times a week. I'm going to try to get her in for a cut this week because it looks so shabby.
EKG scheduled for Friday! Hopefully we get the all clear to start Elavil on Saturday. We're now back to stomach cramps, diarrhea, EN (or vasculitis, or whatever....), and the awful fatigue. I'm counting on Elavil to make a difference! Anyone had success with this medication?
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DS tried elavil
Sadly it did not do a whole lot but he wasn't on remicade at that point just
6-mp or maybe Mtx ... It's been a while
Sadly it did not do a whole lot but he wasn't on remicade at that point just
6-mp or maybe Mtx ... It's been a while
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Oh and elavil is just used for pain or abdominal migraines not crohn's 
GI thinks her symptoms may be functional. He thinks the Elavil will calm the diarrhea and stomach cramps. Personally, I think even tiny ulcers can cause big symptoms but I'm not the one with the medical degree. Regardless, we're going to give this a try and hope for the best. We've already tried Neurontin, Levsin, and Bentyl with no luck but maybe this is her "magic pill".
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Good luck
We also tried all of the above without much success -
We were also given the its functional speech .
But once that thought was pushed aside - many drugs later we found
Mainly whatever "thing" DS has responded best to biologics but not so much to immunosuppressants .
No one can tell us why ... Totally confused the Gi but
We have enough proof to at least check the crohn's box for now.
I really hope its the magic pill
I know for some non crohn's kids it really does work
We also tried all of the above without much success -
We were also given the its functional speech .
But once that thought was pushed aside - many drugs later we found
Mainly whatever "thing" DS has responded best to biologics but not so much to immunosuppressants .
No one can tell us why ... Totally confused the Gi but
We have enough proof to at least check the crohn's box for now.
I really hope its the magic pill
I know for some non crohn's kids it really does work
Dance mom-- yes, I don't know if the size of ulcer correlates well with the symptoms and I believe that symptoms can occur due to submucosal inflammation, with ok looking mucosa-- does anyone know if this is right? In addition, scopes and pill cam miss some ulcers I'm sure.
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Dance mom,
Did you let the doctor know about the hair loss? I definitly would let them know to be on the safe side. Caitlyn took amitriptalline for a long time which is similar to Ellavil. It helped with pain until it stopped working.
Did you let the doctor know about the hair loss? I definitly would let them know to be on the safe side. Caitlyn took amitriptalline for a long time which is similar to Ellavil. It helped with pain until it stopped working.
My son is taking elavil (amytriptyline) 25mg. Neurologist prescribed for pain. It is used for anxiety and to sleep. GI told me that he uses elavil in patients with crohn's for pain but at larges doses. My son is having some weird side effects but I am pretty sure they are related to gabapentin.
I got A's pathology report from her recent scopes. Maybe you all can help to shed some light on what some of this means.
Possible Antral Ulcer Biopsy: focal mucosal disruption with crush artifact
Terminal Ileum Biopsy: focal mild active ileitis; granulomas or chronic changes not identified
Diagnosis Comment: Rare neutrophils are noted within crypts in the colon but are not diagnostic for any clinical entity.
Everything else was "normal". The ulcers seen on the pill cam could not be reached by scope.
I did email the GI nurse about the hair loss. She said she'd forward it to the GI.
Possible Antral Ulcer Biopsy: focal mucosal disruption with crush artifact
Terminal Ileum Biopsy: focal mild active ileitis; granulomas or chronic changes not identified
Diagnosis Comment: Rare neutrophils are noted within crypts in the colon but are not diagnostic for any clinical entity.
Everything else was "normal". The ulcers seen on the pill cam could not be reached by scope.
I did email the GI nurse about the hair loss. She said she'd forward it to the GI.
A is complicated. Her symptoms are more severe than her tests show and her tests don't even match each other. For example, her MRI/MRA was essentially normal yet her pill cam (5 days prior) showed ulcers in her stomach and small intestine. Her CRP and ESR are within normal limits but fecal calp is elevated. I think everyone is left scratching their heads. Basically, on paper she doesn't look as sick as she really seems.
Personally, I think A is very sensitive. She has danced for 7 of her 9 years. She is very in tune with her body and when something isn't "right" she is immediately aware of it. If that is considered "functional", then so be it. I don't think her sensitivity causes her symptoms, just makes her more aware of them. I don't know if that's something Elavil can fix but we are willing to try. I'm also hoping that her next set of labs will provide some more answers. Looking at her she seems very undernourished to me and it breaks my heart.
Is there anyone else in this same boat that wants to help me paddle? Anyone else's kid have relentless symptoms but only "mild inflammation"? Anyone else have a child that doesn't respond as expected to medications? I'm paddling in circles and getting dizzy!!
Personally, I think A is very sensitive. She has danced for 7 of her 9 years. She is very in tune with her body and when something isn't "right" she is immediately aware of it. If that is considered "functional", then so be it. I don't think her sensitivity causes her symptoms, just makes her more aware of them. I don't know if that's something Elavil can fix but we are willing to try. I'm also hoping that her next set of labs will provide some more answers. Looking at her she seems very undernourished to me and it breaks my heart.
Is there anyone else in this same boat that wants to help me paddle? Anyone else's kid have relentless symptoms but only "mild inflammation"? Anyone else have a child that doesn't respond as expected to medications? I'm paddling in circles and getting dizzy!!
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:bigwave: I've been dizzy for months, on the verge of
uke_r:Grace first biopsies' also said.................
focal mild active ileitis; granulomas not identified
But hers was chronic.
By the second hers was now active focal ileitis. It was no more mild. :yfaint:
But yet it was still microscopic. I've always felt her damage/disease is in the small intestine.
However she's never had a pill camera done.
The second opinion (Mayo) said she would absolutely demand a PC for Grace.
I won't bore you with her EGID's, JIA, Asthma.
Oh now we're thinking of asking for them to take a bone marrow sample.:yfaint:
I'm just so frustrated and don't see an end in sight. Her hair is coming out in handfuls and she's starting to get upset by it. She's so tired all the time which makes her emotional. She has no energy and can barely make it through one of her dances, let alone tumble (which has always been her favorite part of dance). She's covered in awful looking black and blue knots. She's in pain. Everyone is asking me if she's sick and commenting that she looks like she's lost weight. And now there's blood in her stools again!
Maybe today is just an exceptionally bad day. Maybe tomorrow I'll wake up with a more positive outlook. This whole thing just exhausts me....
Maybe today is just an exceptionally bad day. Maybe tomorrow I'll wake up with a more positive outlook. This whole thing just exhausts me....
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If they don't want to change her meds yet, could they at least up the methotrexate? I know if she's losing hair she won't want to.
You asked earlier if any of our kids had mild inflammation and relentless symptoms -- M had microscopic inflammation in her TI and colon and no ulcers or anything like that. She was pretty miserable until we got her on the right dose of mtx + Remicade (now Humira + sulfasalzine). We wouldn't have even gone on a biologic if she only had Crohn's - her GI was happy to keep her just on mtx (but she was on a different biologic for arthritis and then we switched to Remicade because it treated both, because it made sense since she had to be a biologic for her joints anyway).
Very glad we did because all her tests are clear now (scopes and pillcam) and she's beginning to feel really good.
Hope A starts feeling better soon.
I've heard Biotin (OTC) can make hair grow. Could you ask her GI if she could take that?
You asked earlier if any of our kids had mild inflammation and relentless symptoms -- M had microscopic inflammation in her TI and colon and no ulcers or anything like that. She was pretty miserable until we got her on the right dose of mtx + Remicade (now Humira + sulfasalzine). We wouldn't have even gone on a biologic if she only had Crohn's - her GI was happy to keep her just on mtx (but she was on a different biologic for arthritis and then we switched to Remicade because it treated both, because it made sense since she had to be a biologic for her joints anyway).
Very glad we did because all her tests are clear now (scopes and pillcam) and she's beginning to feel really good.
Hope A starts feeling better soon.
I've heard Biotin (OTC) can make hair grow. Could you ask her GI if she could take that?
Thanks for your reply Maya! It is so nice to be able to come here and talk with people that can actually relate!
I asked about upping the mtx dose but the GI feels that her dose is enough for her size. She weighs 49 lbs and is on 12.5 mg injections. He's mentioned Remicade in the past but apparently the "team" doesn't feel like that's necessary. The only option we were given at this point is Elavil in addition to the mtx. If that doesn't help maybe we'll be given some alternatives.
I will look into the biotin. Thank you!
I asked about upping the mtx dose but the GI feels that her dose is enough for her size. She weighs 49 lbs and is on 12.5 mg injections. He's mentioned Remicade in the past but apparently the "team" doesn't feel like that's necessary. The only option we were given at this point is Elavil in addition to the mtx. If that doesn't help maybe we'll be given some alternatives.
I will look into the biotin. Thank you!
Nope, we still don't have a diagnosis. Because her biopsies didn't show granulomas or chronic changes they won't officially consider her to have Crohn's. The inflammation is considered non-specific and I wasn't given a reason for the ulcers. Honestly, I was so in shock that the biopsies weren't more helpful that I couldn't even ask intelligent questions.
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I'm also confused, I can't believe they don't think her symptoms warrant Remicade. I've heard many parents on the forum say that growth failure is a sign of moderate disease. You often mention that she has blood in her stool and she has so many other symptoms, your poor little girl deserves a break, she has been such a trooper!
Wouldn't it make sense to get the disease under control before she has more issues. I've heard more and more that the "top-down" approach is very successful.
M was 75 pounds at 10 (if I'm remembering correctly), 49 pounds does seem very small. Could they at least add Entocort or something until Methotrexate works?
Wouldn't it make sense to get the disease under control before she has more issues. I've heard more and more that the "top-down" approach is very successful.
M was 75 pounds at 10 (if I'm remembering correctly), 49 pounds does seem very small. Could they at least add Entocort or something until Methotrexate works?
Our GI trained at CHOP and we've discussed getting a third opinion there. It was his idea actually. He's supposed to be communicating with our insurance company and getting the process started. We won't be travelling there, just a records review.
A is tiny. She did finally grow an inch recently so she's now 49 inches and 49 lbs. My husband and I are not small people! lol He's 6'3 and I'm 5'9.
A is tiny. She did finally grow an inch recently so she's now 49 inches and 49 lbs. My husband and I are not small people! lol He's 6'3 and I'm 5'9.
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So many many hugs
We also got the he needs remicade changed to a team answer blah blah try Mtx...
Thankfully our Rheumo steped in.
DS only had microscopic changes but they were chronic and he aslo had multiple granulomas which is the only thing that send him to the crohn's box every time when any second opinOn sees the granulomas .
But what I don't get is only 30% ever have granulomas for crohn's .
I am wishing you a speedy dx.
Did they ever rule out vasculitis ?
We also got the he needs remicade changed to a team answer blah blah try Mtx...
Thankfully our Rheumo steped in.
DS only had microscopic changes but they were chronic and he aslo had multiple granulomas which is the only thing that send him to the crohn's box every time when any second opinOn sees the granulomas .
But what I don't get is only 30% ever have granulomas for crohn's .
I am wishing you a speedy dx.
Did they ever rule out vasculitis ?
Large vessel vasculitis has been ruled out by the MRA (it isn't sensitive for small or medium vessel vasculitis). I've declined the CTA for now. I'll reconsider at our next follow-up if we're still in the same situation. I just couldn't commit to another procedure right now. In the last month she's had an MRI/MRA, pill cam, scopes, 2 ER visits, and been inpatient for 3 days. Not to mention the EKG she's having tomorrow. In my heart I just don't think it is PAN. I hope I'm not wrong.
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I think rheumatologists now tend to use biologics as a second-line treatment for Juvenile idiopathic arthritis (after NSAIDs) so they don't see going to them as such a big step. There was never any talk of "saving" them for when my girls were worse. It's interesting to see the differences - I was an arthritis Mom for so long!
Anyway, on a totally different note - would A consider a pixie cut for her hair? My friend's daughter has cancer and now her hair is growing back and she has the cutest pixie cut.
Really really hope they can diagnose A soon!
Anyway, on a totally different note - would A consider a pixie cut for her hair? My friend's daughter has cancer and now her hair is growing back and she has the cutest pixie cut.
Really really hope they can diagnose A soon!
PsychoJane
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I can understand why you are recluctant for the angiogram considering all the journey she is going through.Though, it was the only exam that was conclusive (and maybe the brain MRI) to show the vasculitis in my case. No other exam would show clear results at the exception of the angiogram which allowed to see I had vascular impairement at brain, mesentery and kidney levels. They did biopsies of skin, kidney and digestive tissues which all weren't conclusive.
I'm not a fan of radiation and the procedure does involve a few risks but if the answers are not surfacing it might be interesting to get it done. I don't remember the procedure as being hard to go through, maybe just annoying. I my case... the room was cold and the table was not comfortable...
I'm not a fan of radiation and the procedure does involve a few risks but if the answers are not surfacing it might be interesting to get it done. I don't remember the procedure as being hard to go through, maybe just annoying. I my case... the room was cold and the table was not comfortable...
DustyKat
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{HUGS} to you and your lass DanceMom. :ghug:
With confirmed inflammation in the terminal ileum ensure you have levels done for:
Iron Stores
Folate
B12
Vit D
Magnesium
Zinc
Hair loss may well be a combination of things. Matt did suffer with hair loss and it did change colour too but I don’t know if that is attributable to the thinning of his hair and the resulting illusion of change. The obvious thing to blame was Imuran but I personally think that was only one piece of the puzzle. I personally felt his overall health, poor at the time, and his resultant malnutrition and subsequent deficiencies was just as much to blame if not more so. Once he gained remission his hair grew back with a vengeance!
Granulomas - Unfortunately these are the clincher for a diagnosis, you won’t get a yes from pathology without them, UNLESS you have a GI that is confident in what they are seeing. The irony is only about 50% of those with Crohn’s will having corresponding granuloma’s. Matt did not have them. This is an old thread I started about ‘labelling’ patients:
http://www.crohnsforum.com/showthread.php?t=18683
Good luck mum and hoping so very, very much that you have solid answers. :heart:
Dusty. xxx
With confirmed inflammation in the terminal ileum ensure you have levels done for:
Iron Stores
Folate
B12
Vit D
Magnesium
Zinc
Hair loss may well be a combination of things. Matt did suffer with hair loss and it did change colour too but I don’t know if that is attributable to the thinning of his hair and the resulting illusion of change. The obvious thing to blame was Imuran but I personally think that was only one piece of the puzzle. I personally felt his overall health, poor at the time, and his resultant malnutrition and subsequent deficiencies was just as much to blame if not more so. Once he gained remission his hair grew back with a vengeance!
Granulomas - Unfortunately these are the clincher for a diagnosis, you won’t get a yes from pathology without them, UNLESS you have a GI that is confident in what they are seeing. The irony is only about 50% of those with Crohn’s will having corresponding granuloma’s. Matt did not have them. This is an old thread I started about ‘labelling’ patients:
http://www.crohnsforum.com/showthread.php?t=18683
Good luck mum and hoping so very, very much that you have solid answers. :heart:
Dusty. xxx
Vitamin D went from 21 (last year) to 35. That's the only one that she's had done before. Folic acid (>24), B12 (middle range of normal), and iron (upper end of normal) were all fine.
So now I'm assuming the hair loss is caused by the mtx which just really sucks. But I'm not even sure what to blame the fatigue on. I just really like it when things are black and white!
So now I'm assuming the hair loss is caused by the mtx which just really sucks. But I'm not even sure what to blame the fatigue on. I just really like it when things are black and white!
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Hair loss is pretty common with mtx. Is she taking folic acid? We were told that would counteract the side effects of mtx (not that it did much for the nausea/dizziness). When M had a lot of mouth sores from the mtx her folic acid dose was increased. It might be worth asking about that?
The fatigue could just be from the disease. The doctors never took much notice when we complained of fatigue but now that M is on the right combination of meds, the fatigue is gone, so it was obviously related.
The fatigue could just be from the disease. The doctors never took much notice when we complained of fatigue but now that M is on the right combination of meds, the fatigue is gone, so it was obviously related.
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Also did they do iron studies vs just an iron level?
DS has next to no iron stores ( ferritin) but his iron value is normal .
There is another mineral - I need to go ask that can cause hair loss in kids .
DS has next to no iron stores ( ferritin) but his iron value is normal .
There is another mineral - I need to go ask that can cause hair loss in kids .
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Did they check biotin levels ?
Maya - She does take folic acid daily. Normal is >7 and she was >24.
MLP - They only checked iron levels. Her next appointment is in about 6 weeks. If we are still dealing with these issues I'll ask about checking for other vitamin deficiencies. The hair loss seems to be slowing down for now so perhaps it was related to the anesthesia.
A has had a few great days and I'm hoping that is thanks to the Elavil. I'm hoping our world doesn't come crashing down soon! Still waiting on the rest of her lab results....hopefully all will be well and we can move on with our lives!
MLP - They only checked iron levels. Her next appointment is in about 6 weeks. If we are still dealing with these issues I'll ask about checking for other vitamin deficiencies. The hair loss seems to be slowing down for now so perhaps it was related to the anesthesia.
A has had a few great days and I'm hoping that is thanks to the Elavil. I'm hoping our world doesn't come crashing down soon! Still waiting on the rest of her lab results....hopefully all will be well and we can move on with our lives!
Right after I typed my last post her Immunoglobulins lab results came back. IgG is still low, lowest ever actually. Tetanus antibodies were still good. Waiting on Pneumovax antibody results.
I wish I better understood how the immune system works. Her IgG is consistently low but she does not have chronic infections or frequent colds/viruses. When she does get sick it hits her hard, but she isn't sick more than other kids her age. I'm just wondering how much the low IgG is playing into her symptoms. Could it be causing her fatigue? Could it cause ulcers in her gut and inflammatory skin lesions? Could it cause bloody diarrhea or fissures?
I wish I better understood how the immune system works. Her IgG is consistently low but she does not have chronic infections or frequent colds/viruses. When she does get sick it hits her hard, but she isn't sick more than other kids her age. I'm just wondering how much the low IgG is playing into her symptoms. Could it be causing her fatigue? Could it cause ulcers in her gut and inflammatory skin lesions? Could it cause bloody diarrhea or fissures?
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Does she see an immunologist /allergist ?
To address the possible imunodefeciency
To address the possible imunodefeciency
Her Rheumo is also an Immunologist. Her IgG has been low all 3 times it was tested. Initially she did not show sufficient antibodies for tetanus or pneumovax. She had boosters and was tested 6 weeks later. At that time (in December) her tetanus level was 6.79 (considered protective at >.15). Three months later her level is now 4.35. Only a matter of time before the antibodies are insufficient again, I'm assuming. The Rheumo said we'd test at the 6 month mark but the GI wanted to test sooner given the UTI and stomach virus that hit her so hard.
Still waiting on the pneumovax....
Still waiting on the pneumovax....
DustyKat
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:ghug:
So depending on the antibody results, and say they are insufficient, are they looking at Ig therapy in view of the fact that A is atypical in some respects, that being not having more infections than normal?
As to A’s symptoms, I don’t know the answer to that. I can pick out symptoms that may relate to one IgG subclass deficiency and one from another but nothing that fits neatly. And I suppose you can’t rule out that having a possible immunodeficiency may not predispose you another autoimmune disorder.
Ugh, how frustrating for you DanceMom. :hug: My thoughts are with you.
Dusty. xxx
So depending on the antibody results, and say they are insufficient, are they looking at Ig therapy in view of the fact that A is atypical in some respects, that being not having more infections than normal?
As to A’s symptoms, I don’t know the answer to that. I can pick out symptoms that may relate to one IgG subclass deficiency and one from another but nothing that fits neatly.
And I suppose you can’t rule out that having a possible immunodeficiency may not predispose you another autoimmune disorder. Ugh, how frustrating for you DanceMom. :hug: My thoughts are with you.
Dusty. xxx
I just have to brag for a moment! A competed her solo last night in the 9-12 year old division. Typically she competes 8 and under (most competitions use your age as of January 1st but this one used actual age). She looked so tiny up there but danced beautifully. She won 3rd overall, the highest she's placed all season! She felt great and looked healthy. Her color looked better and her face even looked more full. Two days without diarrhea can make a big difference! Hoping this continues!
CarolinAlaska
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Congrats to A! So glad for her, and for you. Sorry this has been such a confusing journey. I wish they could find out what it is that is wrong and find an effective treatment!
Dusty - At our last GI appointment he said he wanted to re-test IgG levels and if they were still low (which they are) and she continued to not be well (diarrhea, headaches, infections, etc.) that IVIG therapy would be an option. However, if her pneumovax levels come back as protective I'm assuming that could change. I've learned that nothing is set in stone!
A has had a sore throat and chest pains since yesterday. I'm hoping it's nothing....
A has had a sore throat and chest pains since yesterday. I'm hoping it's nothing....
Just wanted to give an update...
The Elavil seems to be helping with the diarrhea! Prior to starting A was having diarrhea 3-4 times daily. Now she has 1-2 BMs a day, most appear normal. She's been on it for less than 2 weeks so that's a good start. Even the fatigue seems better.
Wish I could say that she felt great but that's not the case. However, I'm hoping it is just a virus throwing things off a bit. She's had a sore throat since Saturday so if it continues I'll take her to the Pedi. Waiting for a response from the GI to see if there are any medications she should not have while on mtx.
And her Pneumococcal lab came back though I'm not sure what to make of it. Some things I've read say anything over 1.3 is protective. In that case she is not protected in 6 of 23 serotypes. Other things I've read give specific norm values for each serotype. In that case she's not protected in 11 of 23 serotypes. Anyone had this test done before that can explain the expected results?
The Elavil seems to be helping with the diarrhea! Prior to starting A was having diarrhea 3-4 times daily. Now she has 1-2 BMs a day, most appear normal. She's been on it for less than 2 weeks so that's a good start. Even the fatigue seems better.
Wish I could say that she felt great but that's not the case. However, I'm hoping it is just a virus throwing things off a bit. She's had a sore throat since Saturday so if it continues I'll take her to the Pedi. Waiting for a response from the GI to see if there are any medications she should not have while on mtx.
And her Pneumococcal lab came back though I'm not sure what to make of it. Some things I've read say anything over 1.3 is protective. In that case she is not protected in 6 of 23 serotypes. Other things I've read give specific norm values for each serotype. In that case she's not protected in 11 of 23 serotypes. Anyone had this test done before that can explain the expected results?
I have another question....
While putting away laundry this afternoon A came out of her room crying, saying her knee suddenly started hurting. She was limping, barely putting weight on that knee, and continues to do so. She says she didn't injure it in any way and so I'm confused regarding how suddenly the pain came about. Typically when she complains about her joints it is more of an achy, mild pain and seems to come after exercise or activity. Do your kids ever have joint pains that come on abruptly and are more than just an ache?
While putting away laundry this afternoon A came out of her room crying, saying her knee suddenly started hurting. She was limping, barely putting weight on that knee, and continues to do so. She says she didn't injure it in any way and so I'm confused regarding how suddenly the pain came about. Typically when she complains about her joints it is more of an achy, mild pain and seems to come after exercise or activity. Do your kids ever have joint pains that come on abruptly and are more than just an ache?
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YES, as we speak Grace is on the couch with a swollen knee and one finger. No reason to it.
Maya142 hopefully will be along with her daughter's experiences with JRA.
Has the rheumatologist brought JRA up as a possibility?
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Yes, this is exactly what happened when M was first diagnosed. She had been complaining about her knee on and off but I assumed she just hurt it while playing. One day she couldn't walk on it, the next day it was red and swollen and it remained that way for months (until she was put on nsaids and then finally given a cortisone shot). Her older sister had just been diagnosed with juvenile arthritis so we knew it was a possibility with M.
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Keep an eye out for redness, stiffness and swelling! Looking back, M had been stiff in the mornings for quite a while but thought that was "normal".
I really hope A starts feeling better soon, and her knee is ok, she really deserves a break!
I really hope A starts feeling better soon, and her knee is ok, she really deserves a break!
We've discussed it, but A has never had swelling, redness, or limited range of motion. We were told she had arthralgia and that made sense. This seems different though. Her pain is more intense and came on so suddenly. She's in her church class now (she insisted on hobbling in) but when we get home I'll check for any outward signs like redness and swelling.
She has Tramadol so I can give that if need be. I really hope this is just one of those weird things that happens and goes away as quickly as it came.
Thank you ladies for your quick replies! Now can you help me with the Pneumococcal lab results I posted about earlier? lol
Thank you ladies for your quick replies! Now can you help me with the Pneumococcal lab results I posted about earlier? lol
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Nope on the lad results. Sorry
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DS does not have jra but but does have pain out of the blue.
He just started with morning stiffness the past few months so we are watching it closely and adding other measures per the Rheumo
He just started with morning stiffness the past few months so we are watching it closely and adding other measures per the Rheumo
We came home and iced it but it didn't seem to help. It might be a tad swollen but nothing major. I'm not sure if her range of motion is truly limited or if she just won't bend it due to the pain. She competes again on Saturday so she is quite distraught over this whole situation.
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I know I already said this, but if there is inflammation, an NSAID could really help! It might be worth checking with her GI if she could try one.
My daughter played soccer with a knee brace for a month before she was diagnosed. In hindsight, it probably wasn't our best idea but I really did think it was just a minor injury! She said it really helped and when she got back to soccer after being diagnosed (and treated) she still wore the brace for a while until her knee felt 100% better.
Anyway, if it's just the one competition, a brace might help.
My daughter played soccer with a knee brace for a month before she was diagnosed. In hindsight, it probably wasn't our best idea but I really did think it was just a minor injury! She said it really helped and when she got back to soccer after being diagnosed (and treated) she still wore the brace for a while until her knee felt 100% better.
Anyway, if it's just the one competition, a brace might help.
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DS also has been prescribed braces (splints) these help with the stiffness
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We did get one that was prescribed but it was too big and bulky - M hated it! The one we got was over the counter at CVS or Rite Aid. I'm not sure they have kids sizes though? We also got one that she liked from a medical supply store - perhaps they might have kids sizes?
We have a wrist and ankle brace (from CVS) that she sometimes uses when tumbling. Just gives her more support when she is achy. I may have to look into a knee brace. She won't be allowed to compete in it but it might be good for practice and school. Still hoping things will be better in the morning.
I'd second the anti- inflammatory gel suggestion.. And also some topical steroid cream on the painful joint for a few days if there's no contraindications from your medicos. They'll probably say "that won't help", but in the interests of avoiding the systemic side effects it could be worth a try.
(I've been managing my troublesome IBD joints for a few years now with topical creams/gels, and simple analgesia.. Paracetamol, not NSAIDS or narcotic family usually)
HD
(I've been managing my troublesome IBD joints for a few years now with topical creams/gels, and simple analgesia.. Paracetamol, not NSAIDS or narcotic family usually)
HD
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Tesscorm son uses tiger balm I believe. Grace uses icy hot. CarolineAlaska daughter uses natural products for rubs. I think that's how you spell her name. She'll be paged to this thread I think. Or you could start a thread about joint pain relief and remedies.:smile:
CarolinAlaska
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Yes, that is how Jae's joint aches usually are; although more frequent when she exercises.
We use essential oils which have been enough so far.
By the way, think of my name as Carol in Alaska... that is how I came up with it...
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Where do you get your oils from? I've always thought they were nonsense but I think I'm becoming more of a hippy as I age, lol. My newest venture is oil-pulling and I'm already seeing benefits from that. I think we grow up believing that medicine is the only thing that will make us feel better but I'm slowly learning that isn't always the case.
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Yes, before S was diagnosed he had lots of back pain - he used Tiger Balm before and after hockey games/practices and whenever his back was hurting. He swore it helped quite a bit... must have helped because he went through the trouble of making sure he had an extra container of Tiger Balm and always kept it in his hockey bag (quite the feat for a 16 year old boy who often got to the arena to play but had no skates or shirt or stick or etc. in the bag! :lol Not sure if it would be considered 'natural'???
His GI also gave him the okay to use Voltaren anti-inflammatory gel on a shoulder injury - but told to use 'sparingly' as it is still absorbed.
Not sure if it would be considered 'natural'???His GI also gave him the okay to use Voltaren anti-inflammatory gel on a shoulder injury - but told to use 'sparingly' as it is still absorbed.
CarolinAlaska
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We use DoTerra also. I have signed up as a "consultant" but only so that I can make my own personal orders each month. I have used other brands of other oils also for this or that. We still are just doing a lot of research, trial and error personally. I think she has found Lemongrass to be the most helpful for her finger and knee pain, but I can't remember what all else we've tried.
Terrible morning. A spent 15 minutes crying on the bathroom floor because of her knee and now shoulder pain. On top of that she still has a sore throat (since Saturday). The only thing that got her off the floor was the need to run to the toilet to pass some incredibly bloody stool - both black and red. Am I being unrealistic to think that she can be symptom free? We're going to the Pedi this afternoon to check on the sore throat so I'll update tonight. I'm just frustrated.
