Any advice for dealing with school?

I have purposely stayed off this website and basically the Internet because my older son commented that I was worrying myself sick. I agree, I now have an ulcer and I had hives all over my body. Geez, talk about needing to take a break.

Well in the last 3 weeks insurance finally approved Promacta for my 17 year old son. He was dx in early June but showed signs of low platelets in mid may. He has tried high dose steroids, numerous ivig, platelet infusions, and whin ro without what was considered success. He started with half dose of promacta last week and his platelets fell to 2- lots of petechiae, bruising and extreme fatigue. So he went in for whin ro and high dose iv steroids to get him over the hump. He already has a seizure disorder so goal is to get him to 30. We are trying promacta for a couple of weeks and then next think willbe N plate.

So here is my question- what types of things did you ask for at your children's school? My son will be a senior and returns next Wednesday. His school is awesome and one of his teachers checked on him weekly all summer long. They are giving him keys to a private bathroom as meds have reeked havoc on his stomach. Other than that we don't want them to make a big deal out of things. He doesn't have gym and the dr said no to football (luckily my son agreed) so I think we are covered. He already has iep due to seizure disorder so I figure just updating his medical plan is good. I want him to enjoy his senior year and I want him to keep getting his work done and move on to college. My sister is a special Ed director and feels school should give him rest breaks and stuff. Anyone else have ideas or comments? Keep in mind my son has been sleeping 15-16 hours when platelets low but doesn't want attention on his issues and quite honestly has taken all this pretty much in stride. Any suggestions will be greatly appreciated.

I second the rest break idea. When I was in high school the nurses office had three or four 70s style lounge chair looking beds. Kids would occasionally rest in them if they weren't feeling well. It seems like a low key way to take a time out.

When my condition was at its worst I would close my office door and take a 20 minute nap on the floor. You'd think that would be awkward or uncomfortable but the second I was in a horizontal position I'd be out like a light. A little nap like that was a big help.

I think just knowing the permission to rest option is available is a big help even if you don't use it.

I definitely take big breaks from looking at this website. The web community can be helpful but the info available can also be overwhelming. There are a lot of really inspiring blogs out there by women who have been diagnosed with an autoimmune disorder who have turned their lives around by learning to really take good care of themselves. Having that as an alternate online outlet was also really helpful.

The nurse at my sons school instructed all his teachers to allow him to come down to her office to rest if needed. He could take his work down there if he wanted to also. And they say fatigue is not part of this! Really? Good luck!

Fatigue is an issue for my daughter too. 15 1/2 yrs old. ITP x 2 1/2 years. We have been able to get the school to schedule most, if not all, of her core classes (comm arts, math, science, history) to the afternoon with her electives in the morning. If needed, we let her sleep in. She may miss an elective but rarely her most important subjects.

I am a special education teacher with itp. Pdsa has a great packet for schools that you may want to give them. It may also be helpful for your hema to write a letter explaining itp and the fatigue that may come along with it. I think most teachers would understand if something comes up and a paper or something needs to be turned in late or he needs to miss school for treatments. In the worst case scenario, you can have a 504 plan in place so that reasonable accommodations such as rest breaks and things need to be given, which your sister can help with. You may want to talk to your son and see how he feels about it. Also, maybe see how the first week or two go for him and his fatigue levels.

Good to know. Last Thursday he received platelets, whin ro and iv high dose steroids plus is taking 50 mg of promacta and his counts yesterday were 32. Now I know 32 is nothing to freak about but after all that treatment his hemo was hoping for a higher number. Today the petechiae were back. Grr. But he's starting school tomorrow and happy for it. His teacher has been remarkable and I am so grateful to his school district. Thanks for the suggestions. We are having his iep next week to set up attendance nets and rest, etc. I hope you are doing well.

How is he feeling? I am glad that he has an understanding teacher and school district! Let me know if you need any IEP suggestions or anything like that.

Thanks so much for the suggestions. He already has an iep since he has a seizure disorder and his special Ed teacher has been so phenomenal as well as his school. I am so grateful to them all. I am an OT in a different school district and I'm used to figuring out accommodations for my students, just not my son. His hemo wrote an excellent letter with what Cam is experiencing as well. I just didn't want this important educational year to be him just coasting through and then college being more difficult. He was diagnosed right at finals time and was in the hospital the week before finals and returned to school for exams and then back in hospital so at least they already knew what's was happening with him. He has spent more time in the single and low double digits than above 30 with massive treatments so he's getting frustrated.

He's still sleeping a lot 12-15 hours a day some days, falls asleep mid sentence sometimes. Worries me but some of it is related to teenage fatigue I'm sure. Any and all iep suggestions would be helpful. They are great but we are in a small school district and of course this is new for them as well. Adding to it he was diagnosed with seizures a few months before his 16th birthday. This kid has had some messed up stuff happen but his attitude his amazing. Currently for his iep I know he is getting a key to the private bathroom because the meds have caused serious bathroom issues and they have a place in counselors office for him to rest. His iep from seizures was just to cover his medical plan and gave him a study skill class for teacher to review homework assignments as his seizures for partial complex and having 30-40 short ones an hour so he was missing chunks and not realizing it. Now that meds are under control he hasn't had anymore seizures since last Thanksgiving. Thank the Lord since seizures and low platelets are probably not the best combination! Any and all suggestions welcome, school has been great but I know it also protects them if written.

Vdeutsch85 wrote: Pdsa has a great packet for schools that you may want to give them. .

Could you please give me the link for this info? I've had a quick look, but couldn't find it
Thank you
Jac

Another accommodation would be to give him a second set of books to keep at home, lugging a heavy backpack around cant be good.

Also, responding to your comment on limiting your own Internet time I fully agree. I make myself crazy sometimes looking up my blood disorders, medicine side effects, possible complications, it's awful!

I understand that you can only handle one year at a time, but what happens when he goes to college or gets a job and there are no accommodations? It gets much harder, but hopefully he will be in remission by then!

When I went to the conference, they were handing them out but I did not see them on here. You may want to call and ask them if they can send you one. They are free. Just take things year by year. However, it may be good for your son to be part of all of the meetings in case he has to do this next year as well. You can have an IEP until the age of 22, so if needed through out college. Hopefully something will work for him or he will go into remission ASAP! Sending positive thoughts to both of you!

Dru, I think that is a great accommodation as well as the on he already has in place where he has a place to rest if needed. Maybe extended time in tests/assignments if needed ( but that might not always be an issue)

I was reading and have a question? He has a seizure disorder? is it controlled and does he fall when they happen? Does he get warning?

I ask because if he is the kind that gets warning where he can lay down. No problem but if he is the kind that just collapses you may want a plan set up if that happens when his platelets are low.

Make sure he has medical alert that says both.

I figure for college he can have certain accommodations that he is in control of, for example he can schedule his classes for later in the day, things like that. With my students I always encourage parents to only use accommodations for their children that are available in real life. For example, when my son was dx with ADHD and the dr suggested he get extended time on assignments I said no because wouldn't be available in college or on a job but emailing assignments made sense to me. I try to follow my own advice.

Thanks so much, they are sending to me. He has always been part of his meetings which I think are important as well. I'm definitely going to ask them for either extra books or password for online books.

Thanks for your thoughtfulness. He does have medic dog tags that now have both disorders on them. He has only fallen twice and it has been when he was walking and seizure started. He hasn't figured out his aura yet but he hasn't had one for almost a year as far as we know. Sometimes they are so small it's hard to tell if he's having one or just inattentive. It does make the itp scarier. His hemo wants his # at 50 or higher if possible as does his neuro. I'm learning to be grateful for double digits! We are meeting Monday at school. School has really freaked out because of course the rumor was that he had leukemia throughout all the kids. We got that settled but they worry. I want to ease their minds and still help him while helping him maintain a sense of normalcy. And we are still praying for remission, he's only been sick since May, dx in early June. Thanks for your care, this site and it's members have been a Godsend.

It sounds like you are on a good path. Keep us updated! This site has been a godsend for many of us. I do not know what I would have done without it.