Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: My 15-month-old diagnosed with ITP on March

My 15-month-old diagnosed with ITP on March 1 year 3 months ago #66572

  • Angelito0130
  • Offline
  • Posts: 6
  • Thank you received: 0
On March 4th we went to GP because my daughter had a rash, that was the first time I heard the word petechiae, her count at the GP was 55 and she send us to the emergency room to check out the reason of the low platelets, when the doctor at the ER check her count was 7, the give her IVIG and the next day her count went up to 45, they sent us home, the same day we went to the ER because she was screaming, they said that was a side effect of the infusion(aseptic meningitis) since then her counts are between 80 and 45, her hematologist told that if her count stays low by June 4th they want to do a bone marrow biopsy.
She has been super sleepy, and also sometimes have blood in her stool.
Anyone else with something similar!!! Please help

Please Log in or Create an account to join the conversation.

My 15-month-old diagnosed with ITP on March 1 year 3 months ago #66582

  • maria3132
  • Offline
  • Posts: 226
  • Karma: 4
  • Thank you received: 40
Hi Angelito,
Welcome, though I'm sorry you are joining many of us who have been on the rollercoaster... you may want to check out the Parents/Children's forum. It sounds like your daughter responded to IVIG quickly, which is a good sign. The aseptic meningitis is of course not a good side effect, but does sometimes happen. Some measures can be taken to minimize this possible side effect, including 1) slowing down the infusion rate considerably, 2) prehydrating and premedicating with antihistamines, corticosteroids, or NSAIDs, 3) switching to different IVIG products (not all are the same, and the different preparations have different effects in different patients; if I recall correctly, the less sucralose, the less chance of adverse effects, 4) switching to SCIG from IVIG (this is rarely done but see www.bloodjournal.org/content/124/21/5012?sso-checked=true ).

I am not sure you need a bone marrow biopsy if her bloodwork only shows low platelets and no other abnormal results (or a few only slightly off, which most of us will have on any given day). What was the reason for the hematologist's suggestion for a bone marrow biopsy, and for the (seemingly random) deadline of June 4th?

Does she have any wet purpura, i.e. purple spots in her mouth?
The following user(s) said Thank You: Angelito0130

Please Log in or Create an account to join the conversation.

My 15-month-old diagnosed with ITP on March 1 year 3 months ago #66584

  • Angelito0130
  • Offline
  • Posts: 6
  • Thank you received: 0
Hi Maria,
She doesn't have wet purpura, but she has a few spots of petechiae on her face, belly, and legs even though her count is on 45 to 70 PLT. Like you said her count is slightly off, and she has atypical lymphocytes 8%. The doctor said that 80 percent of children with ITP go away around 3 months and 99% of atypical lymphocytes is nothing, I am terrified, if her counts still low by the next appointment on June 4th he suggested to do a bone marrow to rule out anything else.

Please Log in or Create an account to join the conversation.

My 15-month-old diagnosed with ITP on March 1 year 3 months ago #66586

  • maria3132
  • Offline
  • Posts: 226
  • Karma: 4
  • Thank you received: 40
The three month mark seems really random. If there are no other concerning signs, I can't imagine why they would want a bone marrow biopsy, but of course I'm not a hematologist and perhaps yours knows something we don't. My son had neutrophils and various Ig numbers out of range at different times, and he also had slightly prolonged aPTT; none of these warranted a bone marrow biopsy. It took six months for his counts to climb to over 100, and a few more months for them to go over 150. Our hematologists told us he was "batting above average," i.e. recovering more quickly than the average ITP kid they see.

Perhaps some of the other posters could chime in on the bone marrow biopsy issue.

The only thing you mention that might warrant further investigation are the bloody stools. Have you mentioned those? How frequent are they? Could it be from abrasion, v. stomach or intestinal bleeding?
The following user(s) said Thank You: Angelito0130

Please Log in or Create an account to join the conversation.

My 15-month-old diagnosed with ITP on March 1 year 3 months ago #66605

  • Angelito0130
  • Offline
  • Posts: 6
  • Thank you received: 0
The GI doctor doesn’t know yet why she is having blood in her stool ( frequency is random 7 episodes in a month)
Yesterday we received one of the test results and IgA is low but negative celiac.
By any chance do you know what is that??

Please Log in or Create an account to join the conversation.

My 15-month-old diagnosed with ITP on March 1 year 3 months ago #66612

  • JJ
  • Offline
  • Posts: 143
  • Thank you received: 52
IgA is one of the immunoglobulins. Immunoglobulins are antibodies. The main one to worry about is IgG which is what you get in IVIG. With low IgG you tend to get infections. With low IgA it doesn't tend to mean anything or do any harm. It is the antibodies that protect the mucous membranes, so the intestines, the mouth etc. It can't be treated directly and if a person did get many infections, which would be unusual, they would take antibiotics long term prophylactically.
The following user(s) said Thank You: Angelito0130

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
Moderators: jaycharness

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo