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5yr old newly diagnosed and one freaked out mom!

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12 years 11 months ago #28559 by AidansMommie
My 5 yr old son was just diagnosed with ITP on Sept 24th. He had strep throught about a week prior and was on antibiotics. All of a sudden he started having bruising appear and nose bleeds. At first we thought the nose bleeds where from the change of weather as he has had them season for about 3 yrs. Then he had one so bad that it wouldnt stop for ten minutes. The bruises had only appreared on his legs and seemed to be in normal places for a kindergardner who played on a playground a lot. We took him to his primary care and she rushed him into a room to start blood work. The next morning we were sent to All Childrens Hospital and told he had ITP with a count of 5. They gave him an IVIG treatment over two days. he bumped up to 15, then to 42 and was released from the hospital with a 58. I thought we were in the clear. Most of the nurses told me they hardly ever see a child come back after the first time. The next week we had a count of 188, again I was cheering, then in the middle of the week he had another nose bleed. His count dropped to 118 and I was told he needed to be closely monitored. As of yesterday, before I found this group I was informed he was back to a 13 and will be tested again tomorrow. If his count drops he will go back into the hospital. I am totally freaked out. No one warned me of this roller coaster. No one told me how much his count can fluctuate. No one told me the IVIG was only a temporary fix to get the count up. I'm treating my baby like a fragile egg at this time and hover over him. I'm a single, full time working mom and am so thankful my dad is around to help me out. I was told he should not be going to the after school program when his count is so low, so grandpa picks him up after school. His teacher sits with him at a table on the playground during rescess coloring since he doesn't feel like playing and is to tired. Im sad that my son is missing out on the play time that most children revel in at this age. He has always been such a healthy, outgoing and athletic child. Now he is tired, complaining about headaches daily, and falls to sleep at 5/6:00 on a daily basis. I'm scared, I feel alone as no one around me has ever heard of this. I'm having to constantly explain my situation to my employer, I have used up all my sick time already and only have a few hours of vacation left. My son begs me to take him to the DR appointments, or meet him and grandpa there and I have to tell him "No, baby, Mommy has to go to work". To see this little boy going through this breaks my heart. I feel like crying so much but can't because I have to keep it together while working and can not bear to have Aidan see me crying when I'm with him. I could go on and on with all my fears right now...
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12 years 11 months ago #28563 by Val715
I wish you and your son all the best. My son who is 9 was diagnosed with itp on Sept 23rd. He woke up with bleeding gums and petechiae all over his body. From a mom going through what your going through I know it is scary. Stay strong I know it is easier said then done. Good Luck
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12 years 11 months ago #28708 by sal89
after reading this i started realising what my mom has been going through ever since ive been diagnosed.

you should stay positive, your son is responding to IVIG and theres more medication.
ive had a count of 0-3 for over 2 weeks because ivig and prednisone did not work, now after a month i finally got to 14 and im very happy about that.
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12 years 10 months ago #29051 by jrosenfe
Hang in there! My daughter was diagnosed 2.5 years ago and she was 3.5. She is now 6 and we have done about every treatment. It is easy to be freaked because you know so little and every bruise is a concern. I will tell you with time you will get used to your normal. I worry less about falls and bruises and just know my child and can tell when her numbers are low. I don't need a blood sample to tell me anymore. Charlotte is now on Eltrombopag ( she participated in the trial) when she was 5. She is doing great. Still some ups and downs but overall very normal.

Treatments like, IVIG, WinRho and Prednisone are not meant to last long. They are there to treat in the low times and often don't last a month. The problem with ITP is no one has an answer and not all kids react to the same drug. So all treatment plans are different.

My doctor once told the hardest part of ITP is the frustration. He said we don't have a plan for you instead week by week we choose a route. THat was hard. I swore I wouldn't get frustrated but after time I did. Its okay, there are plenty of times I felt alone. All of my friends and family had never heard of it.

Reach out if you need to. we are here, this board gave me a lot of hope and made me feel not alone.
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