Son diagnosed at 2 with ITP with a count of <1 (they found a single piece of a platelet). If left untreated he goes to zero, 14 is a high number for us. Responds to IVIG - up to 400k but only lasts for max of 2-3 wks, non-responsive to steroids, non-responsive to Promacta. No surface markers identified during testing, no antibodies identified during testing, normal results of bone marrow aspiration and biopsy. Generally asymptomatic - very few nosebleeds, some petichiae. Our biggest concern is internal bleeding as he is an active and energetic 4 year old now.
Technically he should be in pre-school this year and kindergarten next year but I have delayed as we continue to try other treatments including Promacta with little success and low counts. I'm wondering what other parents in similar situations have done for school, childcare etc.? How does your school deal with your child's ITP? What accommodations does the school make and/or what requirements do they have? What are some of the best ways to make sure a severe chronic ITP child is safe at school without completely nixing all human interaction? Trying to figure out how to balance safety with attempting to give him a "normal" school experience. Anyone else out there homeschool?
May I ask what state you are in? I actually am in this line of work so I am very familiar with this type of thing. First things first, you should get your child an IEP or a 504 Plan. He will need specific modifications and accommodations put in place for his safety, and to cover the school district. Please let me know how I can help.
Currently we are in Colorado, but we are military and will be moving next summer so I don't know what state we will be in when he starts Kindergarten, but we definitely won't be here. My understanding is that a 504 plan is for medical issues while IEP's are intended to address developmental issues and learning disabilities. Is that correct? He is not delayed in any way, can read some at age 4, it's really just the platelets that are a safety concern as we haven't found a way to stabilize his counts at all. My biggest concern is finding the right ways to engage the school so that he is safe while maintaining that he learn in the least restrictive environment. Most school information I have been able to find simply recommends not allowing any physical activity to include keeping children in from recess - which I see as important socially - what's the best way to negotiate that with the school? How can a child with ITP not be shut out from his peers socially. I need help learning how to speak their language so that we can work together constructively.
Sad to hear your going through this! But happy to know we're not alone. My little Ava has had ITP since June 2015, and I was worried to about daycare which she is in now. The doctors said not to keep her from everyday things and that she needs to be around kids and in a learning environment. I am scared everyday at work when I see the call from them BUT they are well aware of her disorder and call often when she has a issue or a bruise or anything related to her blood disorder! She has had steroids NOTHING; recently WINRHO...which my husband and did not want to try but was convinced and it did NOTHING... the only thing that works is IVIG. But like you it only last about 3-4 weeks so that's why they want us to try other things. Its hard I know because our Ava is only 3 (till Nov 24) so I thought about staying at home and doctors said not a good idea I was mad and said they don't get it what if something happens.
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