Newly diagnosed and searching for answers.

[amberlbrown2]

My daughter was diagnosed on 2-16-18 with ITP, she was medevaced to a children’s hospital. She tested positive for direct Coombs prior to her first IVIG. Her platelets at the time of transport was 15k. After treatment her platelets rose to 42k. Since then she was doing wonderful until this past Sunday when she woke up with a migraine and she slept most of the day and night. Yesterday I notice many Petechiae rashes and bruising. We go to her first follow up appointment and I’m nervous that she will be admitted again. Who else has had a positive direct Coombs and what was the diagnosis. Her hematologist said that treatment normally isn’t helpful when the patient is Coombs positive.

[Kyriak51]

Hi Ambel, my name is Georgia and I was diagnosed a long time before you born (1990) and I'm still here living a mostly active life. You have the advantage of youth, A VERY BIG DEAL because children respond better to treatment and have longer rescissions. Please tell your Mom, who I'm sure is terrified, not to wait for your next appointment and contact your Hematologist and report symptoms of bleeding as soon as possible! Bruising and petechiae are signs of BLEEDING, please don't fear the numbers we can treat this!

[Kyriak51]

Hi Georgia again, I was so taken by the photo of the beautiful, courageous young girl on the stretcher that I forgot to answer your question regarding positive Coombs. As you know ITP, is the immune-mediated destruction of platelets; a positive direct Coombs indicates an antibody-mediated destruction of RBC's. Children generally develop ITP after a bacterial or viral infection which triggers the the destruction of platelets. In 1989 my six month niece developed hemolytic anemia after contracting Roseola, (very common mild viral infection of young children). Her Hemaglobin dropped to 0.4 (normal=11.5-15.5g/dl) , rushed to ICU given two units of blood and started on steroids. It took two years of treatment before she was cured, today she is a beautiful 29 year old happy, healthy young woman. Your daughter is young and research is on going. Please read the post of jamesheath1 from Austraia, you will enjoy it! Be well

[amberlbrown2 in reply to Kyriak51]

Thankyou I sure will. I appreciate your response and I’m praying that tomorrow goes well and we can rest easier.

[Kyriak51 in reply to amberlbrown2]

Hi Amberlbrown, I believe your daughter is 11year old, have you considered that she may be entering puberty? All the hormonal changes and growth spurts may responsible for some of her symptoms. You have an appointment with her Hematologist tomorrow you should ask, he seems to be a knowledgeable, compassionate, approachable doctor and would be happy to address your concerns.

As for me, joint pain is one of the side effects of Nplate. Please let me know how your appointment went, be well

[Kyriak51]

Your welcome, please let me know how your Hematology appointment went, were you given a plan of care? Be well

[amberlbrown2]

Went to the follow up appointment today, her platelets are at 23,000 so he isn’t going to treat until they fall bellow 20,000. We will return Tuesday for another CBC and schedule a bone morrow test unless he sees us over the weekend for significant bleeding. He doesn’t want us going to our local hospital unless it’s an absolute emergency ( we’re 2 hours away from his office) I am to call him anytime day or night for any bleeding and he will call the ER where he practices and have her admitted and IVIG started. After bone morrow testing he is hoping to start her on steroids to try and raise her levels and fingers crossed they’ll stay!

[Kyriak51]

Hi, I don’t understand these doctors refusing to treat patients until platelets drop to 20 K, not much difference between 23 and 20K. I also question his assertion that patients who are positive Coomb “do not respond” to treatment given the fact that Coombs positive refere to RBC’s and not platelets. As for her scheduled bone marrow, please, please demand pain management, in Chicago we use IV sedation with Fentanyl and Versed. This combination is commonly used for oral surgery, colonoscopys and other minor painful procedures. The doctors like these drugs because they are short acting, ( effects are easily reversible), and provide exelent results. You are your daughter’s advocate, she doesn’t deserve to experience preventable pain! Let me know how it goes

[Kyriak51]

Hi amberlbrown2, it’s Georgia again with additional information regarding bone marrow biopsy: “American Society of Hematology guidelines advise that bone marrow examination IS NOT necessary in children and adolescents with the typical features of ITP, or in children who fail IVIg therapy. The guidelines suggest that bone marrow examination is also NOT necessary in similar patients before initiation of treatment with corticosteroids or before splenectomy.”

“Bone marrow examination is indicated in children with atypical hematologist findings, such as immature cells on peripheral smear or persistent neutropenia. Many children with acute ITP have an increase number of normal or atypical lymphocytes on the peripheral smear, reflecting a recent viral illiness. Unresponsiveness to standard treatment after 6 months is an indication for bone marrow aspiration.”

I don’t know that country you’re in but these guidelines are universal. Ask your Hematologist if he is aware of these guidelines and if he agrees. There is no need to subject your daughter to a painful procedure to diagnose ITP. In addition, I would not have a bone marrow biopsy with a large bore needle with a platelet count of 20K as there will be bleeding. Learn as much as you can about ITP, it’s diagnoses and treatment, the more you know the better the treatment you will receive for your daughter. This site will provid you with great education materials. Be well

[amberlbrown2]

That’s what I asked the hematologist, he told me that’s is because on her pereferal smear it showed RBC agglutination. I’m not sure if that has any meaning to reasoning for the bone morrow testing. He did say he would completed sedate her and she wouldn't feel anything and he would make sure she wouldn’t be afraid. I’m really hoping her platelets are rising, she feels good today and has been cleaning out her closet.

[Kyriak51]

Great the only thing she will feel is discomfort of the IV placement. You might want to giveTylenol after the sedation wears off other then that she will be fine

[amberlbrown2 in reply to Kyriak51]

Would the RBC aggulatation warrant a BMB?

[Kyriak51 in reply to amberlbrown2]

Hi, it’s Georgia again: RBC agglutination is found on a blood smear when the lab performed a manual examination of your daughter’s blood to determine platelet count. Some doctors believe a manual count is more accurate than an auto count due to platelet agglutination, I do not. Labs have different methods of calculating counts. Some labs calculate counts as 3-4 times that of auto count. The literature suggests that it should be no more than auto. Two years ago I fell 12 inches on a carpeted floor which resulated in a 2 cm bruise on my right hip, 24 hours later that bruise had increased to 20cm by19cm because I generally bleed for 3 days without intervention, I went to the ER and requested platelet translations, my platelets were 22K auto count. I received two units which increased to 28K, transferred oncology floor for further assessment, I requested a third transfusion asI was still bleeding unfortunately UIC hospital did manual counts, when the day shift came in they retrieved my blood that had been sitting in the ER for over 10 hours and performed manual CBCs; my 22K became 115K, 28K become 124K. The nurse ran into my room and stated “ you don’t need platelets the lab called and said your platelets are 128K!” Needles to say I demanded the transfusion as I was still bleeding, I received the third unit which increased my platelets to 30k and stopped the bleeding; my hemoglobin dropped to 0.9 which is the equivalent of 400 mls of blood loss. As I’ve said before the more you know about your disease the the better the care you will receive!

[amberlbrown2]

Also, she has been complaining of being extremely cold when sitting or resting, and the opposite with sweating and burning hot when up and moving around! Is this something that others have had? She also says different bones hurt at random times mostly in the evening.

[Kyriak51 in reply to amberlbrown2]

Hi amberlbrown2, it’s Georgia your computer challenged friend in Chicago. I responded to your post one of your earlier post, I hope you fount it

[sharroN42]

I have the same or similar symptoms. Fluctuate between hot and cold and have weirdly sore arm bones with the pain located inside the bone.

[sharroN42]

My thoughts and best wishes are with you. Will keep you in my meditations.

[amberlbrown2]

Went to the follow up, no BMB as of now, platelets are up to 30,000 and she’s isn’t testing positive for Coombs anymore. Doctor still isn’t happy with the platelet levels but he was glad they were up from Thursday. She still has significant bruising but hopefully she’s on the upside of ITP. We go back on the 20th to check again.

[amberlbrown2]

Also more then likely won’t do a BMB, he rather treat with IVIG when needed.