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  • Positive ANA in 17 yr old daughter please help

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    Old 01-31-2016, 07:54 PM   #1
    1mommyof8
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    Positive ANA in 17 yr old daughter please help

    My daughter has been having many health issues for the past few years. It started with anaphylaxis to shellfish and then a year of atypical anaphylaxis too many different foods. She presented with hives, flushing, high heart rate, high bp, tight chest, cough, and just feeling awful. The allergy dogs were perplexed but I pushed for them to put her on the protocol for a MAST cell disorder. This helped some, but she was still tired all the time. Fast forward to this past year where she's had
    Tachycardia with standing +40 and exercise >200
    Dizziness
    Light headedness
    Extreme fatigue
    Insomnia
    2x unexplained fever, once lasted for a week (doc said viral syndrome)
    Malaise
    Hyper mobile joints
    Headaches
    Constant stomach aches
    Food sensitivities to: milk, spaghetti sauce, garlic, pineapple
    Trouble with concentration
    Brain fog
    Some irritability but she's a teenaged girl
    Asthma with exercise
    Finally we got a new allergy immunology doc who took things seriously and ordered a bunch of labs, her results are as follows:
    ANA + 1:640 speckled pattern
    C3 133 (60-184)
    c4 20 (8-38)
    ch50 489 (>100 normal)
    Sed rate 20 (0-20)
    TSH 0.5 (0.36-5.8)
    Free T4 1.08 (.84-1.8)
    Ferritin 124 (36-92) high
    All chemistry labs were normal including liver and kidney functions
    CBC normal
    Wbc 8.6 (4-11)
    Rbc. 4.68. (4.1-5.1)
    They also drew a lupus panel but that hasn't come back yet. I'm worried sick for her, I don't want her to have to live with a chronic possibly life shortening illness.
    We also had suspicions that she might have ehlers danlos syndrome
    Currently she takes
    Zyrtech 2x day
    Singulair
    Hydroxyzine
    Albuterol as needed and before exercise
    Any input would be greatly appreciated, as I'm feeling very alone and sad for her.
    Thank you

     
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    Old 02-15-2016, 04:56 AM   #2
    VeeJ
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    Re: Positive ANA in 17 yr old daughter plz help

    Hi, so sorry to read that she's still having problems that remain undiagnosed. As you said, you really need those lupus panel results, but in the meantime, here's what caught my (untrained) eye:
    • Sed rate is on the cusp of being elevated.
    • TSH looks in-range but close to low end. Low values are seen in hyperthyroidism (Grave's disease).
    • Ferritin. Elevation is seen in hematomachrosis, certain infections (like viral hepatitis, for one), and other inflammatory conditions (article didn't name any, unfortunately). If I read about any specific conditions, I'll post again.
    I don't know what the above plus her symptoms could mean, but it sounds as though her new immunologist has started from scratch & will turn over every stone, which is good. We'll watch for updates & will keep fingers crossed that her new doctor will figure this out fast. Sending my best to you both.

     
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    Old 02-15-2016, 05:26 AM   #3
    VeeJ
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    Re: Positive ANA in 17 yr old daughter plz help

    P.S. I found the iron info I was trying to remember, conditions in which ferritin elevates. However, these seem to be associated with EXTREME elevation (say, greater than 2500) as opposed to modest elevation.

    Maybe you could ask doctor for his initial take on her ferritin level, and what could cause it to be modestly elevated? Even if he can't diagnose her immediately, if with what he knows so far, he could rule out some of your very worst fears, that would be good. I think worrying about your child is even worse than worrying about yourself. My heart goes out. Hang in there!

    Systemic onset juvenile idiopathic arthritis (SJIA)
    Adult-onset Still's (at 17, she may be too young for this dx?)
    Various iron overload syndromes
    Hemaphagocytic lymphohistiocytosis/macrophage activation syndrome

     
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    Old 02-15-2016, 10:51 AM   #4
    1mommyof8
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    Re: Positive ANA in 17 yr old daughter plz help

    Thank you for the reply, I thought maybe this site wasn't visited very often! I do appreciate any brain storming or ideas you have, it really helps me to continue my search for answers for my girl!
    I'm Just posting her symptoms again, but also to add a few that I forgot about that could be significant.
    Tachycardia with standing +40 and exercise >200
    Dizziness
    Light headedness
    Extreme fatigue
    Insomnia
    2x unexplained fever, once lasted for a week (doc said viral syndrome)
    Malaise
    Hyper mobile joints
    Headaches
    Constant stomach aches
    Food sensitivities to: milk, spaghetti sauce, garlic, pineapple
    Trouble with concentration
    Brain fog
    Some irritability but she's a teenaged girl
    Asthma with exercise

    Adding:
    Chest pain
    Rash on legs that leaves scars
    Varicose veins x4 years
    spider veins
    Leg pain
    Swelling over right index finger x2years


    I need to start keeping a detailed list so I don't forget!

    Update:
    We saw the rheumatologist, but he honestly wasn't very helpful. He said YES her ANA was HIGH positive, yes she had a lot of symptoms, but that HE doesn't know if it will turn into a full blown autoimmune disorder or not. He didn't think it was necessary to do any other labs, nor did he think we had to make a follow up appointment unless we wanted to, or if "symptoms didn't get better".
    My question is: WHy the heck not do more bloodwork to rule out the bad things as you mentioned. How long does she have to have symptoms persist before they are not going away? 3 years, (that's how long she has had these symptoms) 10 years? until there is organ damage?
    Basically he wanted to wait until there were more severe symptoms pointing us in a direction or that her labs would show abnormalities. You mean he wants to wait until she has organ damage?
    I told him I wasn't willing to wait and that I was on a quest to find answers that would make my child feel better. I wouldn't stop until I get answers for her.
    The rheum focused on her weight: talking about her bmi going down
    He talked about the high heart rate and maybe the heart doctor could look into it further.
    I even asked if he would please do more labs, and he said it wasn't necessary.

    So here we sit, with no further answers, and a child with many many symptoms, just waiting.
    The websites I have read say that an ANA of 1:640 is a level indicative of organ damage. But the rheum said that wasn't true. He did come recommended, but I don't appreciate his wait and see attitude.
    Thank you again for replying to my post.

     
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    Old 02-15-2016, 11:01 AM   #5
    srss
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    Re: Positive ANA in 17 yr old daughter plz help

    Hello I am sorry you both are going through this struggle. My daughter 10 is going through something very similar to this, I feel your pain and frustration. Keep your head up.

     
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    Old 02-15-2016, 11:06 AM   #6
    1mommyof8
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    Re: Positive ANA in 17 yr old daughter plz help

    Thank you, I'd like to know about your daughter if you want to share!

     
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    Old 02-16-2016, 04:19 AM   #7
    VeeJ
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    Re: Positive ANA in 17 yr old daughter plz help

    Good morning. Has your daughter's leg rash been evaluated by someone really specialized? I had 3 wildly different recurring rashes over time. Although I saw many dermatologists during those years, I always struck out, until my second rheumatologist referred me to a dermatopathologist. That's a doctor who is both a pathologist and a dermatologist. Wow, a super pick on his part.

    The fact that these rashes scar is interesting. Do they itch and does she scratch them? Is UV light possibly a trigger? I ask because although discoid lupus rashes san scar and/or depigment and can be triggered by UV exposure, I actually associate them with upper body, face & arms, where sun tends to hit. Further, discoid lupus rashes tend not to itch very much.

    Where on legs? I've seen vascular rashes on legs, and also Raynaud's purplish rashes on feet that are stingingly (burning sensation) itchy.

    Do her rashes erupt when she's experiencing a wave of her other symptoms?

    I wish I knew---I don't---but these are some of the things I'd ponder & try to discuss with some super-specialist skin doctor, if she hasn't seen one already. Well, even if she has, I'd try again if her rash seems tied to her overall symptoms. You two must feel stymied, awful feeling. I so hope you can find a path through all this soon. Thinking of you both.

     
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    Old 02-18-2016, 05:46 PM   #8
    1mommyof8
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    Re: Positive ANA in 17 yr old daughter plz help

    The rash is mostly on her legs, and mostly the upper portion. Although recently she got one spot on her forearm. If she goes off the zyrtec she is on, she will have a huge outbreak of the rash. YES the spots itch, and yes she probably itches them. They look like small pimples with a slight head on them. We have been to an allergist/immunologist, an endocrine doc and the rheum, but not to a skin doctor. It's hard when I work and go to school full time and I'm a single mom to find time to go to every specialist. I have been trying to concentrate on the symptoms that seem the most serious, the +ANA. I will look into a dermatologist for sure.

     
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    Old 02-19-2016, 04:44 AM   #9
    VeeJ
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    Re: Positive ANA in 17 yr old daughter please help

    I think if you see another specialist, you REALLY need it to be a productive consult, no more dead-ends. I don't mean to sound snooty in any way, but I think you should research available derms before you book---also, ask her immunologist for his thoughts & reco's. (I flew blind, using an annual article in a magazine to locate the teaching hospital rheum who finally helped me, then he hand-picked a skin specialist for me. I couldn't have asked for any better.)

    Plus I think there's an advantage when we use doctors from the same hospital system: they're more likely to consult with one another & to kick around their thoughts. I've got my fingers crossed for the breakthrough thinking she & you need. Hugs, Vee

     
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    Old 02-19-2016, 11:38 PM   #10
    1mommyof8
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    Re: Positive ANA in 17 yr old daughter please help

    Tonight was one of those nights where I knew she needed to be seen, but hate hate hate to do the ER. But she had severe chest pain during her skating practice, and it lasted for a very long time.
    They drew some labs, and most were normal. Her BP is really high and her heartrate during these episodes, but of course the docs say its not due to her heart. Tonight they suggested maybe it was coming from the chest cavity.. come on people!
    But something did show up that I found kind of odd, she had another low grade temp 100.0 and also her white count is elevated at 13.4, normal 6-10. Of course they said it's nothing to worry about. But with all the other crap going on, shouldn't someone be putting all the puzzle pieces together?
    I will take your advice, and really need to look into the best of the best, these half wit docs are really annoying me, and we are making so many appts it seems ridiculous.

     
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