Thoughts about DD's lab results...anyone?

[Sugarfoot]

Some of you may remember my DD 13's health concerns last year. She has been seeing a pediatric rheumatologist, and on Monday, they repeated some lab work. Everything was okay, except the IGA, which was 9. :001_huh: The very lowest acceptable number is 69. They're referring her to immunology now. Her ANA test isn't back yet. It was negative last time, but my understanding is that it won't necessarily stay that way, given that she's just beginning to show signs of illness and she's barely into puberty. Still, I'm hoping for a negative. I have no idea what to think about the 9, though. That just seems extremely low. She has no signs of arthritis, although she aches so much that she limps at times. She definitely has some vascular changes, I can't remember what he called them. Her hands are a little bit swollen and red, and she's had a melee rash on her face that comes and goes.

 

Any thoughts?

[Myeightkiddies]

Has she had any Rheumatoid Arthritis tests specifically (RF, anti-CCP, CRP)? ANA will help with determining Lupus or Sjogren's.

 

With the IGA level being what it is, going to immunology is a good idea. The stiffness may not be RA as other things can cause that too. It would be interesting to see what immunology says. If they can determine what is causing that low IGA, they may be able to treat all the other symptoms.

 

I'm not a medical person, so I am sure others will have much better information. I do have RA and Sjogrens. The arthritis-like symptoms could be coming from a variety of things so hopefully they can be treated easily.:grouphug:

[Sugarfoot]

Thank you, yes, she has had those specific labs run, and they came back okay. I don't know what to think. It's hard to watch her limp. I thought maybe her knee needed to be x-rayed, but her Dr. didn't think so based on his exam. She feels better with Aleve, but it's hard to imagine that she needs that just to be able to walk at her age.

 

:grouphug: to you, too.

[Twigs]

You might want to check out Lab Tests Online

 

Best wishes

[kitten18]

I can't remember if I posted to your threads last year about your DD. I do remember reading them.

 

I just wanted to share my niece's story. When DN was in about 3rd grade she got sick with a virus. That was the start of her being 'sickly' for many years. She was tested many times for RA and Lupus. When she was in highschool she was diagnosed with asthma (she had sever seasonal allergies for many years before that). When she was in college, a rheumatologist diagnosed her with fibromyalgia. At that point, she started taking a low dose of anti-depressant to help her sleep. She has slowly gotten better over the last 8 years. It seems that she finally sleeps well enough for her body to heal. She is 29 now and just had her first baby. She had a very normal pregnancy and she seems so much healthier than she ever was in the past.:001_smile:

[prairiewindmomma]

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Edited November 10, 2021 by prairiewindmomma

[Michelle in AL]

IgA deficiency is an immune deficiency that causes frequent respiratory infections, since IgA is used to fight those types of infection off.

 

Not sure if that is what's going on here, but an immunologist would definitely help. I just read about this in my nursing patho book recently (I'm studying to be a nurse practitioner) and suspect my dd who has had pneumonia 3 times this yr and has at least 3 sinus infections/yr has this.

[Michelle in AL]

If your immunologist thinks she has this, please post here if there's anything they can do. My dh says no (he's a pediatrician). He agrees dd probably has it, but there's nothing that can really be done. I'd love to hear if there is from a specialist. I can't take her to one and go against dh's opinion :glare:

[Amy in KS]

I can help with understanding the low IgA numbers. It's not as scary as it sounds. My son has no IgA (0). I suspect my daughter has it as well, but she hasn't been testing. Evan has an immunodeficiency disorder called IGA deficiency. I'm not sure if 9 would be the same diagnosis? I know they like to verify the IgA number a couple of times because a few things can affect the numbers, though.

 

IgA antibodies protects your body from mucus based infections. It is one of five immunodeficiency disorders and the best one to have (the others require much more treatment). In real terms, it means that people with Iga Deficiency are more likely to get sick easily (and sometimes dramatically so). Ironically, some people have IgA deficiency and don't even know it. They don't know why it affects some more than others.

 

People with IgA Def. are more likely to get sick, have autoimmune problems (from allergies and asthma to arthritis) and have celiac disease (traditional testing doesn't work if you don't have any IgA).

 

If your child has IgA, she will need to make sure her immunizations "took" as well.

 

There isn't really any treatment for IgA right now except to monitor the infections and try to be extra careful about avoiding viruses (no drinking faucets for us and lots of hand sanitizer). Oh, and a child with IgA cannot receive a blood transfusion because their body can reject it.

 

This site was the one I was originally referred to be our immunologist:

http://immunedisease.com/about-pi/types-of-pi/selective-iga-deficiency.html

[Amy in KS]

I just saw someone reference that you are from KS. I'm in KC if you need doc recommendations.

[prairiewindmomma]

Amy, I thought about selective deficiency of IgA, but that wouldn't explain the joint pain, would it? Or the rash on the face? It might just be another piece of the big picture.... Being IgA deficient (usually they look for a number under 7 for diagnosis) is just correlated with so much other stuff (outside of the RA, Srojens, lupus world).

 

My other weird question, how's her thyroid?

 

You might find this helpful reading:

http://www.info4pi.org/aboutPI/index.cfm?section=aboutPI&content=syndromes&area=2&CFID=36419223&CFTOKEN=3244

[Sugarfoot]

Thanks, everyone, I really appreciate all of the input. She's always been the one who takes forever to get over whatever she catches. The winter is particularly hard on her.

 

I grew up in KC, my DH went to med school there (yes, St. Luke's is FABULOUS;)), and even though we're a couple of hours away now, the Dr. she's seeing is at Children's Mercy. That's where the immunologist will be, too.

 

Amy, my DH said pretty much the same thing your DH said. Basically, 9 is really low, but he didn't think there's anything that can be done about it. He's a gastroenterologist, though, so he leaves all the kids' stuff to me. With his patients, he's incredible, but he has such a hard time admitting there's anything wrong with anyone in his own family that he just has no perspective.

 

I guess it seems like she has several things going on at once, and I just wonder if this is one more thing that's part of the bigger picture rather than a totally separate unrelated issue.

[Amy in KS]

Gina,

My son goes to the immunology dept at Children's Mercy South. The immunology is only a small part of the medical picture with my son, but I've often wondered how much of everything is really related to his immune system being messed up.

 

 

Wishing you luck on finding some answers!

Edited December 14, 2011 by amy in ks

[prairiewindmomma]

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Edited November 10, 2021 by prairiewindmomma

[Amy in KS]

I'll be sure to look for her square, prairiewindmomma. I'm sorry for your loss...:grouphug:

[Elizabeth in MN]

Humm, many CFS people report that they started off with a basic illness like a the flu, got a rash, and then things went downhill for them. I, personally, never remember having a rash but it was a long time ago. Oi, twenty-six years ago! I was tested for everything under the sun but everything came back normal.

 

Mainly I am here to support you. I saw what my own mother went through by having a chronically and mysteriously ill child. It's a hell of a path to walk. :grouphug:

[jewellsmommy]

:grouphug:

 

Just wanted to commiserate because I know how frustrating it is. Dd was having problems with her fingers and feet randomly blistering. After we ruled out allergic reaction, we were sent to rheumatology and tested for everything under the sun. Her condition looked like pernio but that was ruled out too. She did end up diagnosed with ehlers danlos syndrome which explained some joint problems she was experiencing but was totally separate from the other issue. We still don't have any answers but she hasn't experienced it in awhile either. I hope you get good answers. :grouphug:

[Sugarfoot]

Thanks again, all. It is frustrating. So many things are possible.

 

Prairie Wind Mama, I'll look for your daughter's quilt square the next time we're there. :grouphug:

 

I appreciate all of the stories and commiseration!

[Lizzie in Ma]

My gut reaction would be to say it's time to go on to see Immunology. Low IgA levels are not uncommon, but given the other symptoms, I'd keep digging.

 

Also, did they run a really good Lyme disease test and celiac test?

 

I'm not sure what neck of the woods you're in in Kansas, but if you're in the KC area and looking for a new doc, I've got a good rheumy/immunologist at St. Luke's. She's a rock star at diagnosis. :)

 

That was my thought, Lyme sounds about right.

[Capt_Uhura]

I hope you get some answers soon. My 13yr old son is limping. His IgA just came back at 37. The range on the report is 70-432. He has been treated for Lyme disease for 1.5yrs. I am not sure if he has Lyme-induced arthritis at this point or if he's still infected w/ the bacteria. We just have no idea.

[Sugarfoot]

I hope you get some answers soon. My 13yr old son is limping. His IgA just came back at 37. The range on the report is 70-432. He has been treated for Lyme disease for 1.5yrs. I am not sure if he has Lyme-induced arthritis at this point or if he's still infected w/ the bacteria. We just have no idea.

 

I'm so sorry your son isn't feeling well. It's terrible to not know what's going on. 

 

Here's an update since I first posted about my DD: 

 

Her symptoms have continued--rashes, limping, color changes in fingers and toes, tiredness, catching every cold that comes along.

 

Her Ig-A is 0, so she's Ig-A deficient, she has Reynaud's, and a few weeks ago, her ped. rheum. started her on 2 daily meds. One is to help stave off vascular damage, and the other is to hopefully delay or prevent the onset of rheumatic diseases like Lupus. We've had a few minor bumps getting everything going. One med had to be changed, and she complains of dizziness with another. I'm hoping that will go away with time. The side effects are so minor compared to the benefits that she could gain from them.

 

In addition to that, my youngest had his Ig-A tested last year because of frequent illness, and it came back at 27. So he's not officially Ig-A deficient but classified as "low Ig-A." I'm really not sure what this means, other than he seems to get sick more than everyone else, well, except DD.

 

She was never tested for Lyme, so I don't know anything about that. I hope your son feels better soon. :grouphug:

[momto2Cs]

My gut reaction would be to say it's time to go on to see Immunology. Low IgA levels are not uncommon, but given the other symptoms, I'd keep digging.

 

Also, did they run a really good Lyme disease test and celiac test?

 

I'm not sure what neck of the woods you're in in Kansas, but if you're in the KC area and looking for a new doc, I've got a good rheumy/immunologist at St. Luke's. She's a rock star at diagnosis. :)

 

I would definitely ask for a celiac test. It can show up in people as joint pain, rashes, inflammation, a general sense of feeling run-down, etc. At least get it ruled out.

 

:grouphug:

 

[Χά�ων]

Some of you may remember my DD 13's health concerns last year. She has been seeing a pediatric rheumatologist, and on Monday, they repeated some lab work. Everything was okay, except the IGA, which was 9. :001_huh: The very lowest acceptable number is 69. They're referring her to immunology now. Her ANA test isn't back yet. It was negative last time, but my understanding is that it won't necessarily stay that way, given that she's just beginning to show signs of illness and she's barely into puberty. Still, I'm hoping for a negative. I have no idea what to think about the 9, though. That just seems extremely low. She has no signs of arthritis, although she aches so much that she limps at times. She definitely has some vascular changes, I can't remember what he called them. Her hands are a little bit swollen and red, and she's had a melee rash on her face that comes and goes.

 

Any thoughts?

Did they test for Scl-70? Sometimes it is referred to as Anti-Scl-70.

[Tiramisu]

I would definitely ask for a celiac test. It can show up in people as joint pain, rashes, inflammation, a general sense of feeling run-down, etc. At least get it ruled out.

 

:grouphug:

 

 

For someone with in IGA deficiency or even lowish IGA a celiac blood test will not work at all. You'd have to get an endoscopy.

 

We went through this with dd, I had her tested for celiac and none of the docs paid attention to the fact that her IGA came up flagged and knew what that meant for a celiact test. It's so important for a reliable celiac test that it's included in the panel. I don't think dd is low enough to be technically IGA deficient--you have to be VERY low for that--but she's still too low for a celiac blood test to work.

[Tiramisu]

:grouphug:

 

Just wanted to commiserate because I know how frustrating it is. Dd was having problems with her fingers and feet randomly blistering. After we ruled out allergic reaction, we were sent to rheumatology and tested for everything under the sun. Her condition looked like pernio but that was ruled out too. She did end up diagnosed with ehlers danlos syndrome which explained some joint problems she was experiencing but was totally separate from the other issue. We still don't have any answers but she hasn't experienced it in awhile either. I hope you get good answers. :grouphug:

 

Jewellsmommy, please keep sharing about how your dd is doing. We are in a similar place, so I thought I'd reach out to you.

 

My dd was very sick for years in high school, mostly GI stuff, and major fatigue. She has had blood test results that haven't been bad enough for the rheumy to start meds--though she almost did once--but we have to go back for regular visits. Anyway, the rheumy has brought up the possibility of an inherited connective tissue disorder, like EDS, but the geneticist in our area that is familiar with those is booked up until the end of the year.  We did have an echo to rule out the heart issues that can come with inherited connective tissue disorders, and now we're just watching and waiting. My dd is doing extremely well now and I hope it continues. 

 

FWIW, I seem to remember that people with inherited connective tissue disorders are more prone to having low IGA and developing autoimmune diseases. 

[Splash]

My dd with IGA of 7 plus food and environmental allergies, life long GI issues, joint pain, etc. ended up having Atypical Hemolytic Uremic Syndrome. She was diagnosed last year while in the PICU.

[Sugarfoot]

Thanks for the input, all. There are some things here that I've never heard of that I plan to look into. 

 

She and DS 6, the son with low Ig-A, have both been sick all weekend, and today DD is limping, although she says it's a cramp in her foot, so who knows. She downplays everything. She's just like me in that way.  I'm really hoping we don't spend most of the winter like this. The cold weather is hard on her. We're still getting used to the meds. She is really resisting the one that makes her dizzy, although I think that is likely temporary if she sticks with it. 

 

:grouphug: to all. Autoimmune issues are so hard.