My dd has been dealing with ITP for 3 years now. For the most of it, it has been insignificant. Till, I decided to go to nursing school.
My first semester her numbers dipped down to 27k, 6 months prior she was at 60k (I think). I am in my second semester and on Feb 10th, she had an hour long nose bleed at 4:30am in the morning. She had gotten so use to them that she didn't wake us that morning. I woke up to get ready for class and the sink was covered. End result she was admitted with platelets at 10k and received IVIG treatment. Counts came up to 84k. Weekly checks (which I haven't been able to go to cause I have been in class) have shown a decline each week. For 2 weeks she stayed at 18k so they extended her checks to 10 days. Finally, I am able to take her in. Bam! 13k. UGH!!!!!! So I have to take her in next Monday for a check at the hospital. If lower then 10k she will get IVIG as an outpatient. Possibly setting up home visits for future treatments. In the mean time the doctor started her on an immune suppressant, Imuran. Hopefully it will work.
I am overwhelmed. Stressed. Depressed. Frustrated.
I can't focus on my studies. In one class next week we will be discussing ITP. (I could teach it) I am so over it!
I can totally relate to what you are saying. It will be almost 2 years ( my daughter was diagnosed with ITP when she was 5 and turns 7 in a week) for us dealing with ITP. Whenever I think of going back to work something or the other holds me back. We have done 6 ivig's till now. At present on nplate which keeps her count in a safe range but there are times when it just drops down really low at 10k and it takes time for the nplate to kick in..there are days when counts are low and she has nosebleeds.
There are days when I feel the same stressed, depressed , sad seeing her going through all this. Not able to laugh good while playing with my second kid on her silly jokes as am so tensed thinking about my elder one...
But then I guess we should not give up hope and stay strong for our kids. Things will get better.....
She is 9. She had IVIG 2 years ago when she was hospitalized for an ileus and her platelets dropped from 93k to 24k over night. Her pedi talked with the hemo and got the go ahead to treat since she was in the hospital already.
Then February of this year she had the nose bleed and her platelets were 10k. We went to the children's hospital only because the hematologist said he would call them since we have had problems with that ER in the past. She was admitted and got IVIG.
Monday she got the rx for Imuran. Goes back to the hospital Monday to check and if low another round of IVIG.
She is small stature. 9 years old and weighs 57lbs. Size 6x/7 girls clothes. Not sure if that has any significance in doing the Imuran over a steriod.
I can really empathize, it is hard enough as a parent when your kids get the normal childhood things and you have work, school or obligations. My daughter was older when she was diagnosed with ITP so she could be left by herself for some of the issues.
I would second you asking to explore other treatment options.
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