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Connor has to see pediatric cardiologist and rheumotologist

Discussion in 'Parents of Children with Type 1' started by momandwifeoftype1s, May 16, 2008.

  1. momandwifeoftype1s

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    Please keep Connor in your prayers. He was seen his GP doctor for the third time this month today because of recurring skin rashes, chest pain, joint pain, stomach aches (feels like throwing up), and bright red cheeks. He has had fifth disease, bronchitis and an ear infection in the past month and been on antibiotics. His doctor has referred him to a pediatric cardiologist and rheumatologist for more tests. He suspects it to be one of three things - Lupus, Henoch-Schonlein Purpura or Pityriasis Rosacea. Anyone have a child with diabetes plus one of these other diseases/conditions? I am somewhat familiar with Lupus (my grandma had Lupus & rheumatoid arthritis), but not with the other ones. I'll be doing some research this weekend, but I'd appreciate your input too. None of them sound like good options. I'm really, really upset and also concerned about steroid treatments and his blood sugars. Also, can Connor participate in Field Day next week if he is waiting to go to a cardiologist for an EKG? I'm thinking I need to keep him home with me. Any thoughts? My poor baby :(.

    Amy
     
  2. Beach bum

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    I'm not familiar with any, but I'll keep you in my thoughts.
     
  3. deafmack

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    I will keep Connor and you in my thoughts and prayers that it will not be anything serious. As for field day, I would let him go and tell him to sit out if he gets too tired. I am sure he is looking forward to field day. There should be things he can do that will not be too strenuous. Sending (((HUGS))) your way.
     
  4. Lee

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    Can the also test him for Lymes Disease - those are some common symptoms - but tests are only positive when there are symptoms...
     
  5. Lee

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    Oh - and I will also same some prayers for him!
     
  6. pr39

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    the only one of these i"ve ever heard of is lupus, have they checked him for anything
    related to tick bites? ( I don't know how long he's had these problems and by no means
    am I second guessing the Dr.s) I was only asking because of after reading up on lymes
    rocky mountain spotted fever and something called ercholsis sp? There are some similar
    symptoms, of course you'll find many conditions with similar symptoms, I just tested
    positive for rmsf with out having any rash.
    My prayers are with you and your child, I hope he is feeling better soon.
    Patty
     
  7. RosemaryCinNJ

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    My thoughts and prayers are with you and Connor...I know how much the kids enjoy Field Day (my own son included) so I would say let him go...I know here on Field Day, parents can attend and watch the activities..maybe you can go and just kind of keep an eye on him so he dont "over do it". {{{{Hugs}}}}}
     
  8. Jencaz23

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    I will be praying for you and Connor...
     
  9. momandwifeoftype1s

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    Connor has not had any tick bites. The doctor did ask me that though. One of his first questions. You can't get Lyme Disease without a tick bite, right? I had a tick bite this week and kept it in a jar just in case. Rocky Mountain Spotted Fever is common here (my friend just had it). Yuck!

    I am supposed to be a parent chaperone for my other son who is in Early Childhood on the same day and the same time as Connor's Field Day. They need parent volunteers with his class to help with the special needs kids (including my own). The fields/activities are on the opposite side of the building so I can't keep my eye on both kids at the same time. I think I'll talk to my parents when they get back from their vacation to see if they can help me. Brian is not available that day. I wish that I had thought to ask Connor's doctor about strenuous exercise when I was there today. Of course, I come home and think of what I should have asked - Murphy's Law. And - it's now the weekend.

    Thank you for your thoughts and prayers. I really appreciate your thoughfulness.
     
  10. MySweethearts

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    I am so sorry I dont have any words of advice, but I will pray for your son Connor. Poor little guy, I hope he gets to participate in field day.
     
  11. Lee

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    I would still have them check for Lymes and the Rocky Mountain Spotted Fever - ticks can bite in places you never want to know about - much less search for! I hope he feels better!
     
  12. StillMamamia

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    Just wanted to let you know I'm thinking of your son...poor little man...I hope you get some answers really soon.

    ((((HUGS))))
     
  13. Kara

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    Amy, I'm so sorry for your poor little darling. I just read a couple of articles on the two skin conditions, like most other people I'm familiar with Lupus, seems like they don't know what cause either, but the good news is that the cases have a tendency to go away by themselves! That's certainly a lot better than Lupus.

    Here are the links I read if you'd like to see them:

    http://www.nlm.nih.gov/medlineplus/ency/article/000425.htm - Henoch-Schonlein purpura

    http://www.webmd.com/skin-problems-and-treatments/tc/pityriasis-rosea-topic-overview - Pityriasis Rosea
     
  14. Treysmom

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    Conner will be in our prayers.

    My MIL has Lupus and has been in remission for years. The others I'm not familar with. Please keep us posted on what the dr's say.


    Big Hugs
     
  15. EmmasMom

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    Hi Amy,

    I'm sorry to hear about all the problems your little guy is facing! Hopefully it's just a bad combination of illnesses causing all the symptoms! We'll keep our fingers crossed.
    As far as the EKG, it should look "normal" even with activity and excitement. If it doesn't look normal after that they need to know it. KWIM? I wouldn't limit his activity unless they tell you to. Luckily EKG's are easy and painless, so maybe he'll think it's fun... like being a robot man.:)

    Emma started having skin rashes, joint pain, fevers, lethargy and bright red cheeks within a few months of her D diagnosis, she was also having a lot of GI problems, (chronic diarrhea and bloating, recurring vomiting illnesses) at the same time. It felt like a nightmare!

    We started our journey to figure out what was wrong with a pedi GI since those problems were the biggest immediate concern. Her labs showed strong auto-antibodies for Crohn's disease, but after upper and lower endoscopies confirmed that her bowel looked healthy we moved on to the other symptoms.

    She started to have more random skin rashes and then started limping in the morning or anytime she was sitting for a long time. Her feet & ankles were obviously stiff, but would get better as she moved around. She had horrible dark circles and just looked sickly. It took 6 trips to the pedi for these symptoms to get a referral to a pedi rheumatologist. (mostly because there isn't one near our city).

    At our rheumatology visit she was immediately dx'd with Juvenile Rheumatoid Arthritis. Her labs were ANA negative, so he was certain that she didn't have lupus even though she met most of the diagnostic criteria. (I'm sure they'll do an ANA test on your son soon, along with a sed rate to determine inflammation in his body.)

    Rheumatic illnesses are very hard to pinpoint because there are so many similar symptoms and so many variations of the same disease. Even "JRA" is a blanket term to cover hundreds of kinds of childhood arthritis. Some are very mild and some are very severe. Inflammatory bowel diseases like Crohn's can cause many of the same symptoms as well.
    If you have a family history of RA and Lupus you know he is at a higher risk, so I'm sure they will be thorough. My father had JRA and type 1 D... what are the odds right?


    I hope you get good news quickly and that the treatment is easy for anything you may encounter.:cwds: I'm always available via PM if you have any questions at all.

    Best of luck!
     
    Last edited: May 17, 2008
  16. momandwifeoftype1s

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    Connor's most obvious symptom is his continuous bright red cheeks and two types of rash all over his body (flares with sun or warm water). My mom just gave me a picture of him today from 2 months ago, and he had the red cheeks then. We just thought he had been in the sun or was walking around a lot. The other two conditions that the doctor mentioned do not have red cheeks as a symptom. Connor had a chest x-ray at the office, which was read immediately by a radiologist. He does not have any fluid in his heart or lungs, which is good. We'll have to wait and see what the specialists say.

    I was actually tested for Lupus right before we moved from WI last February. My ANA level was elevated and I have had & continue to have many symptoms. I was supposed to have followed up with a 3-month appointment, but I put it off due to our move and so much going on with the kids. So, with my grandmother having it and my own ANA levels elevated - not great genes.

    Yes, I feel very blessed that we moved to a city with an excellent hospital system and pediatric specialists all in one location (about 45 minute drive). This is a much better place for us to be for medical treatment. We did not have a pediatric endo in WI - 3 hours away.

    Amy - I will PM you. Thank you for taking the time to write me. I feel emotionally like I did when Connor was first diagnosed - scared and alone. Thanks for letting me know that we're not the only family who's gone through this. Feeling alone is hard. Emma's symptoms sound so similar to Connor's. Thank you again.
     
    Last edited: May 20, 2008
  17. momandwifeoftype1s

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    Connor is seeing the cardiologist tomorrow morning at 10:30 a.m. His activity is restricted by the doctor until his appointment - no PE, recess, Field Day, etc. They wanted to see him this afternoon, but I didn't get enough notice to get him there in time. I'm officially freaking out!!! Please think of Connor tomorrow morning and pray that everything will turn out okay. Thank you.

    Amy
     
  18. bz'smom

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    I just came across this thread. I'll keep your family in my prayers. Please keep us updated when you can.
    HUGS,
     
  19. Kara

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    Hope everything goes well with the appointment today and you get the best outcome possible. We'll be thinking of your family, and especially your little boy.
     
  20. momtojess

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    Amy, I will be thinking of you and Connor this morning.. Please call me if I can do anything for you, or if you just want to talk
     

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