JuneFlower Posted March 27, 2014 Report Share Posted March 27, 2014 So my daughter is no longer functioning. She has severe insomnia (doesn't fall asleep until 6 or 7am). She is isolating from friends. She refuses to try to go to school even for 1 class on the days when she feels so so. The doctors have said she needs to go if isn't feeling horrible. But I can't get her to go at all. She has missed school all year so far except for 2 weeks. I know sometimes she is truly too sick but other days she could make it through one class. That is all I ask. She is unwilling to help herself. And I think it is because she is depressed. Btw-most of her symptoms go away on the weekend and come roaring back on Monday morning. I'm not saying she doesn't have POTS but I am saying it appears to flare with school and she won't acknowledge this and work on it.So I want her to go to a day program for therapy. They have school at this thing. I would prefer an inpatient situation but they won't take her there unless she is a danger to herself. She actually said she might consider it yesterday. But I am very worried I won't be able to get her to go each day just like school.Has anyone gotten to this point where they don't function but it is stress related?Thanks,June Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 27, 2014 Report Share Posted March 27, 2014 Hi June,I agree with you on the impatient deal. After my son was in the hopspital for 10 days, he was sent to a facility for inpatient physical therapy. they taught him how to be safe using his wheelchair and transfering in and out of shower. He had a teacher that worked with him daily and even did the IQ testing. He was 2 grade years ahead in all subjects. This place had counselors that would come in and visit. He was also around other kids his own age. Overall it was a good experience but it was scary at the same time. I was allowed to stay with him at all times. Our insurance would only allow him to stay a week but it was well worth it. He was taught coping skills. If you can go the physically therapy rehab inpatient route, you might have more options. Wishing you the best. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 27, 2014 Author Report Share Posted March 27, 2014 I don't think she needs physical rehab. She is currently not allowed to do any exercise due to her low weight issues. Also she never had a problem with physical therapy. She has school anxiety and school refusal and isn't sleeping or socializing anymore. It s more of a mental problem brought on by a physical problem. thanks,June Quote Link to comment Share on other sites More sharing options...
sparrowkate Posted March 27, 2014 Report Share Posted March 27, 2014 Hi June,Issy has had/ still has lots of similar problems, so I feel for you and your daughter.Issy had mega problems with getting to sleep. Like your daughter, she was going to sleep at 6 in the morning. Really isolating and depressing for her. A paediatric dose of melatonin worked wonders. We have had a better few weeks, but her sleep cycle shifts again given half a chance. Issy struggled to see her friends; she just felt so poorly. Facebook, texting and Skype have proved a lifeline, as she can chat even when too ill to get out of bed. However, I know your daughter is a bit younger, so this may not be so suitable. School is a tricky one. Issy hasn't been at all this past term; she had become too ill to attend . She has recently spoken more about the problems she faced at school. Basic problems like the fact that every time she did attend, she wouldn't have a clue what the lessons were about as the class had moved on to the next topic. Also: gossiping girls, teachers who don't understand. Physical discomfort - noise and light triggering migraine. Unable to eat in the dining hall, because of the food smells. Trying to function with constant nausea and frequent fainting. In conclusion - stressful and difficult.Maybe the day programme for your daughter will be somewhere without these stresses, that she can relax and enjoy attending. I do hope this works for you both.Katie Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 27, 2014 Author Report Share Posted March 27, 2014 Katie, Your daughter sounds very similar to mine. She has no trouble catching up when she does attend school but she is only in 8th grade. Also she does go online but she doesn't talk to her friends through email or online at all. She is isolating. There is no trouble with gossip that I am aware of. She just is afraid for some reason and also claims illness almost every day. Its hard to know when it is anxiety and when it is true sickness. She has almost agreed to go to the day treatment program. We'll see.June Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 27, 2014 Report Share Posted March 27, 2014 Sleep issues have always been a problem for my son. His hours flip/flop and he experiences insomnia. Doxepin has helped with the insomnia somewhat, but his hours still like to flip.My son was unable to attend school starting midway through 8th grade, of which he missed 1/2 the days before that. He was able to attend 1/2 days for 6 weeks of his sophomore year when medication had a really positive effect on him..then abruptly stopped working. He is one of those that really never looks sick and he has a great poker face when he is really ill. So I have to ask how he is feeling in order to know what he is dealing with.For a while, I would pester him to go to school, telling him he looked like he could attend an hour or two. He explained that while that might be true, that hour or two would take a tremendous toll on him afterwards. By having to sit up in a hard chair, florescent lights overhead, not being able to control the room temperature and trying to focus on a teacher, books, the hallway walk to another class,etc(all while dealing with some degree of nausea and hoping not to vomit)... would make him spiral down worse than had he been able to stay at home and 'maintain' a level of sickness ....if that makes sense. So I didn't make him expend that energy that he was saving to maintain his level and not feel worse/bedridden the rest of the day. So we ultimately chose the homebound/on line class route for his education. This also caused him to be very isolated and he still is since his friends all moved on. He does have contact with a friend with on line gaming. He is feeling much more functional now; we are going to have to light a fire under his xxxx to get him to start socializing again. Hope that helps,Christy Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 27, 2014 Author Report Share Posted March 27, 2014 Christy- thank you. I am sorry for your struggle. I am afraid of the same thing happening with my daughter. I don't want her to stay home or do online or home schooling. She cannot complete the work required for an unmodified online high school. As it is she has a 504 and we are trying to get an IEP. At least then, they give her less work. I cannot home school her. So I am really focusing on getting her back to health.We keep hearing from health professionals that kids with cancer on chemo still go to school. So my daughter should be able to manage it too. I don't know what to think b/c often she refuses and says she is sick. I just don't know.June Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 27, 2014 Report Share Posted March 27, 2014 June,Just for clarification, I didn't homeschool Cody. He was on homebound school. The school sent a teacher to our house in the evenings when I was home from work, someone 21 and over had to be present when the teacher was there. Plus, he felt best in the evenings so that worked out better anyway. He received 5 hours per week, and if we cancelled because he was too sick we were able to bank those hours for additional hours in a week he was feeling better. We set up for the teacher to come 3 nights a weeks for 1.5 hours to 2 hours per night. We were very fortunate in that the homebound teacher was extremely flexible and would come whenever he was up to it(including weekends). Going to school was just not an option at that point in the illness. Of course the medication that helped him most and got him functional again was started the month after he graduated.Christy Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 28, 2014 Author Report Share Posted March 28, 2014 Christy- yes I understand. The school won't give my daughter a tutor. Currently we have retained a lawyer to assert her rights.June Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted March 28, 2014 Report Share Posted March 28, 2014 My sister had POTS in high school and a similar thing went on with her feeling worse come Mondays and developing school anxiety. It sounds as though she is aware school will likely make her feel ill and maybe embarrassed which is very stressful to think about and, as I'm sure you know, stress makes POTS symptoms worse. I agree she would benefit from coming to terms with attending school giving her anxiety. Personally, I think it is important she is working with someone who has experience helping chronically ill children with primarily physical illness rather than primarily mental illness. It sounds like her anxiety is secondary to POTS, and if POTS hadn't happened, she wouldn't have school anxiety. Who wouldn't get anxious if they were going to have to do something that makes them very ill (maybe for days) and is emotionally uncomfortable? She's always going to have a sense of dread come Monday -- that is not abnormal given what he's being asked to do, but hopefully the therapist can help her cope with those feelings more productively, identify any skewed thought processes going on, and help her learn to not isolate herself.I used to not think a particular person in my life who caused problems made me more ill. Looking back, I think the reason I didn't understand it is because I worked in mental health field, high stress jobs so I did not believe one person could make me so much more sick after all I dealt with regularly. I especially felt this way because I was aware of the stress and handling the situation.... so what was left for me to be worrying about? Then one day, it was crystal clear; this person causes me a lot of stress which in turn causes lots of flare ups. Once I acknowledged the trouble this person causes does indeed make me sick (whether I am good at dealing with her or not, whether I have helped others through similar situations or not), I was able to move on to learn new ways to think about the situation when she stresses me. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted March 28, 2014 Report Share Posted March 28, 2014 I don't like their assertion to you that kids going through chemo attend school, so she should be able to as well. I am sorry you have to deal with these people.First of all, they are different illnesses... Second of all, I'm sure some kids on chemo can go to school, but I bet some can't. Similarly some kids with POTS can go, others can't. If it were not a disabling illness, people wouldn't get Social Security Disability for it! Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted March 28, 2014 Report Share Posted March 28, 2014 Sorry -- too many thoughts! Has an occupational therapist been tried with your daughter? They could help her learn to plan with her illness in mind. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 28, 2014 Author Report Share Posted March 28, 2014 Well good news- after a threat to cx vacation, she suddenly was better and did all her homework and went to school all day. She also remains healthy this afternoon and happy. So maybe it was good for her to go.I feel like she really has two issues that have equal importance. She has depression and anxiety caused by chronic illness. And she has the illness. But I don't feel the medical doctors or other ppl are really helping with the anxiety. So we need ppl trained in that.June Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.