Hives, swelling, juvenile rheumatoid arthritis, and food allergies Tell me your thoughts. X posted in special needs and allergies - Mothering Forums
 
Thread Tools
#1 of 25 Old 04-02-2010, 12:41 AM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
DS is almost 28 months old.

The other day my son woke up for the day covered in hives. I got him into the bath and noticed his joints (knee, elbow) were swelling. He also has some difficulty moving. We went to the ped, and after some examination he sent us for blood work, concerned that DS possibly has JRA. He had us start dosing on ibuprophen, but as the day went on, the swelling got worse.

By last night, he could not move to drink or feed himself. If he wanted to move, we had to place his body somewhere else. The swelling was occuring at ankles, knees, hands, elbows. The dr. called in a steroid. This morning, the swelling was WAY down, and the hives have become bruised looking spots on his body.

DS has NOT been dianosed with JRA, but the ped is very concerned and is referring us to the specialist. His blood work showed platlets being high and iron being low (for the first time ever). DS was born a month early, and has always been very small.

DS has had some food issues food issues. He is allergic to eggs. As an infant he had horrible eczema from dairy in breastmilk, and was dairy free until February 24 of this year. Could the consumption of dairy over the past little over a month have led us to this selling/hives?

Does this sound like JRA? Does anyone have any really good links for JRA that could help me?
matey is offline  
Sponsored Links
Advertisement
 
#2 of 25 Old 04-02-2010, 02:27 AM
 
dannic's Avatar
 
Join Date: Jun 2005
Posts: 2,700
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Wow, that's no fun at all. My grandma used to say that for those with dairy issues, it collects in their joints. Not an expert opinion I know. My nutritionist recs that those with r. arthritis go dairy free, tho, so there must be something there. I def don't think it would hurt to go dairy free and see if that helps! I know symptoms can change or accumulate over time. It did with my dd and gluten.

When do you meet with the specialist? How is your ds doing?

(I think we're ddc mates)

caution: one-handed nak

typos likely

dannic is offline  
#3 of 25 Old 04-02-2010, 11:02 AM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
We are ddc mates! I havent even been thinking about the baby. The only time I think about it is when I am thinking about if they will get us into the the dr.s in time before the baby comes. I feel really bad about it.

Our ped wants to send us to a juvenile rheumatologist. There are two in the state, both about 3 hours away. That's where our allergist is to so, we are used to it.

My sister has had some issues in the past, and although it was never diagnosed, they were talking a RA diagnosis and for a long time, lupus. And both her and my mom remember dairy elimination being in the discussion.

I know we can go dairy free easily, we did it for two years. But DS has gained a pound in the month since going on dairy. He's only 22 pounds and hangs out in the negatives on the growth chart. I dont know if I should pull these important calories without a diagnosis, or a more clear link to the dairy for this problem. But then I think maybe I am just fooling myself and I should drop the dairy now. But THEN what if it was some weird allergic response not related to dairy and isnt jra at all and I drop the dairy with all it's fat and protein and calories when really it has nothing to do with dairy. I just dont know what to do. DH wants him off, but I wont commit to it, so he said only necessary dairy. So, basically raw milk and I think the organic yogurt is ok, but no hidden or unknown sourse dairy.

DS is doing really well. He salept all night for the first timein 4 nights last night. He is moving really well right now. But steroids are just so frustrating, because it could all start back up again as soon as he is off the steroids.
matey is offline  
 
#4 of 25 Old 04-02-2010, 11:47 AM
 
kjbrown92's Avatar
 
Join Date: Dec 2007
Location: CT
Posts: 10,747
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
I guess I have an odd question. I've never seen hives leave a bruised look afterwards. Are you sure it was hives? I'm wondering about a possible Lyme diagosis. You can get the rash everywhere and you can definitely have joint swelling. So just wondering if it's on anyone's radar.

I thought RA had a definite blood test so it was a definitive diagnosis.

If it were me, I'd pull the dairy, just in case. Calories can be made up in other places. I'd pull it all or not bother. It seems pretty coincidental for timing (when he went back on milk).

Kathy, mother of 3, wife of 1. My new recipe blog:
To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
longer searchable by allergen, but at least it doesn't have a virus!)
kjbrown92 is offline  
#5 of 25 Old 04-02-2010, 12:51 PM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My parents have been mentioning lymes disease also. I know you can get the rash everywhere, but I thought it would start somewhere. Like there would be a spot where the tick bite had been and it would spread from there. But these just popped up over night.

As far as the blood test, we have done some different blood work but I guess in children it is a harder diagnosis and it is really difficult because there are so few juvenile RA doctors.

Thanks for the milk thoughts. You are definatly someone who I would take advice from. I know you have a lot of experience in all this.
matey is offline  
#6 of 25 Old 04-02-2010, 12:55 PM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I just read this about lymes disease.

In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early.

DS was on antibiotics for 10 days, which ended wednesday, for a throat infection. So, if it were lymes, it could have caught it then. But then it also says this

Occasionally, symptoms such as arthritis persist after the infection has been eliminated by antibiotics

but if it were just an after thing, the hives wouldnt be explained.
matey is offline  
#7 of 25 Old 04-02-2010, 01:18 PM
 
changingseasons's Avatar
 
Join Date: Mar 2008
Location: Seattle
Posts: 8,750
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Oh, I just saw this was your thread. I'm so sorry you guys are going through more stuff.

I just read your last post and immediately thought- ABX REACTION!!! Did the doc consider that? Does the timing work? (My abx reactions have always been after I've been taking them for a week, or sometimes just after I stop taking them.)

Mom to DD1 (10/07) and DD2 (3/11)
geek.gif I blog about our life with food allergies and eosinophilic disorders.
changingseasons is offline  
#8 of 25 Old 04-02-2010, 01:34 PM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I've thought of that too, except he has been on abx SO many times it's embarrassing and we've never had an issue. He has had all kinds of trouble with double ear infections. I just wasnt sure if that would happen one time, but not all the others. ??
matey is offline  
#9 of 25 Old 04-02-2010, 02:41 PM
 
mamafish9's Avatar
 
Join Date: Jul 2006
Posts: 4,451
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I'm going to guess it's a food beyond dairy (or in addition to dairy), if he's been having lots of ear infections the entire time he's been on dairy. You might consider some allergy testing (both IgE and IgG allergies - most allergists just do the first) - not always totally accurate, but at least it might give you some clues. And perhaps tell you if dairy is not OK. Normally I'd just say eliminate and trial, but that's a pretty scary reaction, so I'm thinking allergy testing might get you to the answers faster (probably some trial and error still after the testing, but even if it got you 50% of the way, that would help).

JRA is very difficult to diagnose properly. My family has lots of it, and it doesn't sound right for the joint swelling to go down that quickly, even with steroids - but that's just based on my family experience. And hives, those I've never seen as part of a RA flare.

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
mamafish9 is offline  
#10 of 25 Old 04-02-2010, 03:05 PM
 
dannic's Avatar
 
Join Date: Jun 2005
Posts: 2,700
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
As far as ABX goes, can't you develop an allergy at any time? So even if he was fine with it in the past, he may not be anymore? It isn't fun, I know, trying to figure all this out!

I was pregnant with my youngest when my dd1 began having all her issues--it was a very scary time for us--so I understand that component of it. Hugs!

caution: one-handed nak

typos likely

dannic is offline  
#11 of 25 Old 04-02-2010, 03:21 PM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
We have done food allergy testing, as much as the allergist will do. We did a full scale elimination diet with breastfeeding, and then slowly introduced food when we introduced solids at one year, watching for reactions.

He is allergic to eggs and has never eaten them. He gets rash/hive bumps if he is touched with egg. He number has been dropping on that and he is up for food trial in 6-12 months.

He tested negative on a skin test for dairy, but we knew it was an obvious problem and kept it out for two+ years. He is skin test negative for soy and blood/skin test neagative for various shellfish. He has been tested for celiac and cystic fibrosis, both negative.

He has never eaten fish, shellfish, nuts, or tree nuts. He has had nothing new except for the dairy.

The joint swelling started days before the hives. I think I forgot to mention that. We didnt realize it was happening. During the week before he had been sleeping poorly and very whiny. We had several instances where he would fall and request help to stand up. We thought he was being silly. When we wouldnt help, he would throw huge fits. There was a moment at church where he was walking very stiffly. Someone commented on it, we thought he was being silly again. The night before he woke up with hives, whilre cleaning up toys with dh, he couldnt bend down and pick the toys off the floor. He stooped a little, then said "help dada". Again, we thought he was being silly. But now I think he was experiencing joint pain, since things were happening at stronger degree when the joints were obviously swollen.

So, if the joint pain/swelling started first it makes me think I can rule out an allergic reaction. The reason I will not rule out dairy is because in looking at JRA, dairy is linked to being something that can bring on flare ups in people.
matey is offline  
#12 of 25 Old 04-02-2010, 03:23 PM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by dannic View Post
As far as ABX goes, can't you develop an allergy at any time? So even if he was fine with it in the past, he may not be anymore? It isn't fun, I know, trying to figure all this out!

I was pregnant with my youngest when my dd1 began having all her issues--it was a very scary time for us--so I understand that component of it. Hugs!
Well, if it could be developed over time, then I guess that could be a possibilty. But is there anyway to know for sure with it?

Thanks for the hugs! I need it right now!
matey is offline  
#13 of 25 Old 04-02-2010, 03:33 PM
 
mamafish9's Avatar
 
Join Date: Jul 2006
Posts: 4,451
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Sounds like you did IgE testing, but not IgG. You can order it yourself, either the ELISA or ALCAT tests. If it were me, I'd want to rule out an IgG reaction to dairy, just to help simplify things a little. Really delayed reactions are hard to tie back to specific foods (my DS took over a week to react to dairy and gluten).

Hugs, I know swollen joints can be really scary to see, hang in there.

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
mamafish9 is offline  
#14 of 25 Old 04-02-2010, 03:50 PM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
So your saying rule out the possibility of jra and look at food only? Right? Now, arent there a lot of issues with the elisa and alcat tests showing false positives?
matey is offline  
#15 of 25 Old 04-02-2010, 04:14 PM
 
mamafish9's Avatar
 
Join Date: Jul 2006
Posts: 4,451
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
No - you may be dealing with JRA and dairy issues, or only one, or neither. But JRA is really hard to conclusively rule out, so I was thinking it might be good to go at this from more than one angle.

The ELISA and ALCAT can have false positives/negatives, as can any allergy testing. But if you got a positive IgG for dairy, then you'd have a good reason to eliminate it. And you may find some other food issues as well (not growing/gaining weight, and ear infections, are common food intolerance symptoms, and it sounds like you had both going on while you were off dairy). If your son has JRA, then eliminating any food intolerances would still be very smart, since they can trigger RA flares. And it may be that his joints swelling is just an overactive immune response to food (reactions can change over time, or build up over time).

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
mamafish9 is offline  
#16 of 25 Old 04-02-2010, 06:12 PM
 
kjbrown92's Avatar
 
Join Date: Dec 2007
Location: CT
Posts: 10,747
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Quote:
Originally Posted by matey View Post
I just read this about lymes disease.

In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early.

DS was on antibiotics for 10 days, which ended wednesday, for a throat infection. So, if it were lymes, it could have caught it then. But then it also says this

Occasionally, symptoms such as arthritis persist after the infection has been eliminated by antibiotics

but if it were just an after thing, the hives wouldnt be explained.
And apparently Lyme only reacts to certain classes of abx. Because I was saying I couldn't possibly have Lyme because I'd been on abx for the better part of 8 years. But when I read which abx are used for Lyme, I realized that I hadn't been on ANY of those. And also regarding the abx, I've been on abx, as I said, for the better part of 8 years. Last March I was on Cipro for about the zillionth time, and 4 hours after my first dose, I had extremely itchy eczema all over my torso from it. So yes, you can react after having been on it many times.

Quote:
Originally Posted by mamafish9 View Post
Sounds like you did IgE testing, but not IgG. You can order it yourself, either the ELISA or ALCAT tests. If it were me, I'd want to rule out an IgG reaction to dairy, just to help simplify things a little. Really delayed reactions are hard to tie back to specific foods (my DS took over a week to react to dairy and gluten).

Hugs, I know swollen joints can be really scary to see, hang in there.
If they came at different times, they could be two non-related reactions. Hives from one thing (or whatever it was - I didn't see anyone else weighing in about hives actually leaving bruising) and swollen joints from something else.

We didn't have any false positives that I know of from ALCAT. Though we had a false negative for each kid. Not that I'm intuitive at all (even if the psychic told me I was last year), but gluten seems to be screaming out at me. If the ear infections persisted off dairy, gluten is a factor in that as well. And I've heard of adult RA people that went off gluten and nightshades because it helped with the inflammation.

Kathy, mother of 3, wife of 1. My new recipe blog:
To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
longer searchable by allergen, but at least it doesn't have a virus!)
kjbrown92 is offline  
#17 of 25 Old 04-02-2010, 06:49 PM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
He has been tested for celiac though. Could that be unreliable or are you meaning more of a gluten intolerance?

With the ear infections, I do want to point out that we have a history of family ear problems. My 60+ year old father still gets infections and has always had significant ear problems, and I have been plagued with them my entire life, the last one from a fungal infection that took many months to recover from. I also have eustacian tube disfunction. I guess I just always figured that it was a genetic thing, and that my children could deal with the same problems. Do you think this is a possibility or is it more likely food related?
matey is offline  
#18 of 25 Old 04-02-2010, 06:56 PM
 
kjbrown92's Avatar
 
Join Date: Dec 2007
Location: CT
Posts: 10,747
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Quote:
Originally Posted by matey View Post
He has been tested for celiac though. Could that be unreliable or are you meaning more of a gluten intolerance?

With the ear infections, I do want to point out that we have a history of family ear problems. My 60+ year old father still gets infections and has always had significant ear problems, and I have been plagued with them my entire life, the last one from a fungal infection that took many months to recover from. I also have eustacian tube disfunction. I guess I just always figured that it was a genetic thing, and that my children could deal with the same problems. Do you think this is a possibility or is it more likely food related?
There's wheat allergy, there's celiac disease, and there's gluten intolerance. My DD2 and I were both tested for celiac and we're negative. She reacted to gluten on ALCAT; DS reacted to gliadin on ALCAT, I went off it, and felt better too. So I'm assuming we're gluten intolerance, not celiac. Either way, you have to be gluten free though.

I would find out for sure if there is an anatomical ear problem in your family. Food intolerances are also genetic, so how do you know if you don't all just have food intolerances that are being passed down instead? My grandmother had colon cancer, bloating, constipation, etc. Of course this was all mostly before my foray into food intolerances. My older brother had tons of intestinal problems growing up, still has constipation, was hospitalized when he was about 11 for stomach issues. So one could say that we all just have "sensitive stomachs" however, I know better (I'm still trying to convince my brother though). So I'm just saying it's a possibility, that's all.

Kathy, mother of 3, wife of 1. My new recipe blog:
To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
longer searchable by allergen, but at least it doesn't have a virus!)
kjbrown92 is offline  
#19 of 25 Old 04-02-2010, 06:57 PM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Here is a link to some pictures I took today. So, two days after the hives, this is what his skin looks like.

1

2

3

I am leaving for my in laws for the whole weekend, and they have NO internet (GASP!) so I cant check this while I am gone, but will come running back when we return.
matey is offline  
#20 of 25 Old 04-02-2010, 07:08 PM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by kjbrown92 View Post

I would find out for sure if there is an anatomical ear problem in your family. Food intolerances are also genetic, so how do you know if you don't all just have food intolerances that are being passed down instead? My grandmother had colon cancer, bloating, constipation, etc. Of course this was all mostly before my foray into food intolerances. My older brother had tons of intestinal problems growing up, still has constipation, was hospitalized when he was about 11 for stomach issues. So one could say that we all just have "sensitive stomachs" however, I know better (I'm still trying to convince my brother though). So I'm just saying it's a possibility, that's all.
Yes, it wouldnt surprise me at all if my father had food intolerances. My sister has recently started having problems with seeds. She was eating a lot of pumpkin seeds and then working out and she started having ana reactions during the workout. So, they took her off seeds and I think nuts now too, and she is doing much better. We react to things constantly, and both my dad and I have to watch eating unknown italian sausage because a certain spice gives us hives.

I do know with my ear the eustachan tube closes when it isnt supposed to in a way that is not supposed to happen. DS does have tubes at this point, and has only had 1 ear infection in the past 7 months as opposed to like 4 in a month and a half. But, that said, I dont know if DS has an actual thing with his eustachan tube.
matey is offline  
#21 of 25 Old 04-02-2010, 07:13 PM
 
gigismom's Avatar
 
Join Date: Nov 2001
Location: nj
Posts: 886
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
i have to confess i did not read all of every post but lyme keeps screaming at me... throat infection (general flu like symptoms) followed by joint pain and swelling and a rash. sounds exactly like i felt when i had lyme. my rash was all over too, not just the target-style rash that is typically associated with lyme. looked a lot like the pics. i never saw a tick. there are only certain abx that are effective for lyme in my experience and you have to be on them much longer than 10 days. hope that is not what it is though... i would look further into it if you haven't already. hope he is better soon.

jen

jen mommy to dd1 (11y), dd2 (6y) and ds (3y)
gigismom is offline  
#22 of 25 Old 04-02-2010, 07:38 PM
 
sbgrace's Avatar
 
Join Date: Sep 2004
Posts: 9,138
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
The last picture--those spots on his leg look bulls eye like to me. My son was on an antibiotic when he got lyme. But it was not a lyme specific one (they are limited) and he needed to be on the lyme one for something like 28 days. It takes a long time to kill lyme.

Are you in an area which has lyme? Could he have had tick exposure?

Rachelle, mommy to 8 year old boys! 

My Blog-free homeschooling finds and my lesson plans and link to the new User Agreement

sbgrace is offline  
#23 of 25 Old 04-05-2010, 02:09 AM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by sbgrace View Post
The last picture--those spots on his leg look bulls eye like to me. My son was on an antibiotic when he got lyme. But it was not a lyme specific one (they are limited) and he needed to be on the lyme one for something like 28 days. It takes a long time to kill lyme.

Are you in an area which has lyme? Could he have had tick exposure?
I dont know if we have lyme. I know we have ticks, so i would guess we have lyme. I am in Missouri. We have a dr. appointment on Monday (tomorrow) and I am going to mention all of the lymes disease concerns. My parents mentioned it too, so I feel like I need to bring it up.
matey is offline  
#24 of 25 Old 04-05-2010, 02:09 AM - Thread Starter
 
matey's Avatar
 
Join Date: Sep 2006
Location: The Greene House gone English Brown
Posts: 2,909
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Is it easy to find out if someone has lymes disease? Somethings I read made it seem like it is very difficult to verify it.
matey is offline  
#25 of 25 Old 04-05-2010, 11:17 AM
 
gigismom's Avatar
 
Join Date: Nov 2001
Location: nj
Posts: 886
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
it is a blood test... when i had it my symptoms were the same as your son's so i started abx right away. i felt so horrible that i was convinced i needed them. the blood test came back in about a week and was positive to lyme. by then i was already feeling better. i would insist on a blood test if he were my kid. gl

jen

jen mommy to dd1 (11y), dd2 (6y) and ds (3y)
gigismom is offline  
Reply


User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page



Posting Rules  
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Online Users: 1,070

8 members and 1,062 guests
bellydancingmommy , cmftblynumb , Daria91 , Deborah , FunSunSon , KerriB , lauritagoddess
Most users ever online was 21,860, 06-22-2018 at 09:45 PM.