- Posts: 9
- Thank you received: 0
!!! DISCUSSION GROUP RULES !!!
1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!
ITP as a Symptom Of Something Else?
- bpritikin
- Topic Author
- Offline
Ever since my daughter was diagnosed with ITP 2 years ago, her doctors think she could have "secondary ITP". In her case, her ITP is possibly a symptom of another rheumatological illness, such as SLE (lupus). She is 9 years old with other vague symptoms (occasional headaches, leg cramps that come and go, etc.). Her rheumatologist hasn't given her an official diagnosis yet because she hasn't met all of the criteria for one of these illnesses. She has positive ANA (last time we checked it was 1:320, and we've seen higher titers in the past). In the past her bloodwork has shown some positive antiphospholipid antibodies....but some have been positive and have moved to negative over time. Her recent testing shows borderline anti lupus coagulent, and we need to test for this again in a few weeks to double check the result.
Anyways, is anyone else in this stage of "limbo" like we are? It is so frustrating to not know where my daughter's ITP is heading, and whether or not it is a precursor for another illness.
Also, my daughter's skin is very itchy. Does anyone else notice this as a symptom? Her recent platelet counts (last week) were 18,000, and I wonder if this is a symptom of ITP at lower counts, or perhaps another systemic type symptom we can't explain.
So far we are watching and waiting. No treatments yet, but we may be headed in that direction if her counts continue to fall.
Thanks for listening!
Please Log in or Create an account to join the conversation.
- Angelalogin
- Offline
- Posts: 58
- Thank you received: 0
I have no clue about lupus or the testing done for such...my son had a BMB and Im assuming they checked him for lupus or other things!?
The symptoms you mention I guess is what struck a chord with me because my son has the same things, it could be a coincedence or medicine related, I don't know. He has occasional headaches, leg aches (always in the legs) and itchy skin. However he is on prednisone, and was on a very high dose of it.
The thing thats been bothering me as of late is I have this sinking gut feeling, that this ITP is being caused by something else...call it mother's intuition, something is nagging at me, an underlying infection perhaps!?? I dunno.
The lupus questions, I know there are some very knowledgeable people on here so Ill turn it over cuz Im clueless in Canada....but we're here for you regardless of the problem!!!!
Angela
Please Log in or Create an account to join the conversation.
- bpritikin
- Topic Author
- Offline
- Posts: 9
- Thank you received: 0
My daughter's other symptoms (not ITP) and positive ANA were present years before the ITP showed up. She had a bone marrow aspiration/biopsy this past May just to be sure we didn't miss anything.
Interesting that your son has similar symptoms, but it could be side effects to the pred. When my daughter has leg cramps we have to give her over the counter pain relief to make her feel better. There is no swelling where her cramps are, so the doctors can't figure it out.
If you haven't already, you may want to see a rheumatologist for further screening.
Thanks for responding!
Barb
Please Log in or Create an account to join the conversation.
- mghd
- Offline
- Posts: 4
- Thank you received: 0
Please Log in or Create an account to join the conversation.
- Sandi
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
I went through the Lupus waiting game after being diagnosed with ITP. I'm not a child, but it's a similar experience. My ANA was the same as your daughter's - 1:320 and I also had APS antibodies on and off over the years. I have the Anticardiolipin Antibodies. From the time my elevated ANA was discovered until the time I was diagnosed was almost two years. It can take much longer than that for some people as Lupus can develop very slowly. I had ITP 8 years before I had any symptoms or blood work that pointed to Lupus.
I am not telling you that your daughter will be diagnosed with Lupus....sometimes it takes certain triggers. In the meantime, there isn't anything you can do about the limbo - it's definitely just a time to monitor and wait. You can try to keep her out of the sun and use sunscreen religiously, that will help. No tanning at all! Sulfa antibiotics are also known to trigger Lupus, so try to keep her off of those as well and ask for substitutes if possible.
Leg cramps can be a result of low potassium - has she had that checked lately?
Please Log in or Create an account to join the conversation.
- bpritikin
- Topic Author
- Offline
- Posts: 9
- Thank you received: 0
I am glad you responded---your case is really interesting. My daughter's positive ANA was identified when she was about 2 years old, and the leg cramps started back then as well. I remember our doctor told us it was probably growing pains. The ITP didn't show up until she was 7, and she is now 9 years old. She had positive anticardiolipin Antibodies at one point, and now it is negative.
We use sunscreen religiously, but her rheumatologist cleared her to go to summer daycamp the last 2 years, which I was always concerned about, but we let her do it. I am not sure this is the best move, but we also want her to live as normal a life as possible until we know what her diagnosis is. Very good advice about the antibiotics and I will have to remember that.
If you don't mind my asking, what were your symptoms/lab results that helped your doctors confirm a Lupus diagnosis?
Thank you, Sandi.
Barb
Please Log in or Create an account to join the conversation.
- tacmom
- Offline
- Posts: 418
- Thank you received: 1
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)
Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg
Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...
Please Log in or Create an account to join the conversation.
- Sandi
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
Apparently, ITP was the first symptom, but of course I didn't know that then. I'd have to say that the first physical symptom was feeling flu-like for a few days a couple times a month. Then I began to have symmetrical joint pain that would move around - elbows for a few weeks, then shoulders, then hips, etc. I developed an intolerance to cold weather and feel feverish/sick any time the temp is below 74. I also had very stiff and painful muscles, and fatigue. I also developed neuropathy in arms and legs that comes and goes.
The labs went bad slowly. First the ANA, then C3 and C4 were low. SED rate was elevated, APS Antibodies and finally, the dsDNA was elevated and that was the clincher. Oddly, I've never had any rashes.
I made the mistake of tanning before my daughter's wedding, and the dsDNA was elevated for the first time right after that. No coincidence; UVA and UVB can really trigger Lupus. I was headed in that direction anyway, but I sure sped things up by doing that. I can't stress enough how important sunscreen is.
Good luck with your daughter and if you have more questions, ask away!
Please Log in or Create an account to join the conversation.
- ktonooka
- Offline
- Posts: 33
- Thank you received: 0
My daughter Jordan fits into this catagory also. She is 15 and has had ITP for the last year and a half. This past summer, she had a battery of blood tests and has been further diagnosed with Sjogrens syndrome. She has positive SSA and SSA antibodies, and a positive ANA, can't quite remember what the last count was. She also has a low white cell count. We are currently trying Cellcept, have tried Imuran (slightly worked but was toxic to her), and have been off and on Prednisone (which actually raises her counts the best). We have some autoimmune issues in our family, so I guess this is all not a total surprise.
Jordan's count seems to hang out in the teens or twenties without treatment. She plays tennis and dances so we treat for now. She doesn't have the dry eyes but has had a plugged salivary gland sore in her mouth that the doctor says was typical for Sjogrens. It has since gone away without doing anything. She occasionally has some joint pain but not enough to even take anything for it.
Karen
mom to Jordan
Please Log in or Create an account to join the conversation.
- lornahalbert
- Offline
- Posts: 95
- Thank you received: 1
Please Log in or Create an account to join the conversation.
- Momma Jo
- Offline
- Posts: 1
- Thank you received: 0
Please Log in or Create an account to join the conversation.
- brittany
- Offline
- Posts: 32
- Thank you received: 2
so we went on our 1st family vaca to the beach. and i come home with a bumpy rash on my hands/wrists and inner knees- nose bleeds on the ride home (and i always get leg pains- especially at night- i run up&down steps to relieve the nagging pains then as soon as i lay back down its unbarable)
me platelets were 80 2weeks ago i get them checked again and have hemo appt tuesday.
Your post made me think of the symptoms i have (dr never says much about my leg pains and fatique) But im bringing all these points back up to him again (also have been having problems with my vision past few months- had to get my contacts changed twice and still cant see right--- makes me wonder if all this is related)
Please Log in or Create an account to join the conversation.
Stay Informed
IMPORTANT!
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org
© Copyright 1997 - 2024, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.