Does Anyone Get Up Early?

[kclynn]

School so far has been mixed. Out of 15 days J has had 4 missed and 3 half days. He has decided to drop Spanish because if you aren't there, you can not learn it, you can't get notes for missed information and the teacher was very uncooperative with any kind of ideas for helping him to succeed. Our district requires 2 years of a language for graduation. I hope he is better next year. Time will tell. He is a Sophmore this year. Our state does not require languages to graduate.

But my question was about mornings! He is just wrecked, feels REALLY bad at 6:00 AM. But tomorrow he wants me to make him get up. Wish me luck with that! I guess I am wondering if once he gets moving, he can push through it and then be ok. Tips or Advise greatly appreciated.

I also have a call into his Dr. since he has taken such a down turn since school started. Don't know that they can help but thought I would run it by them.

[Christy_D]

Sorry he is not doing so well, I was so hoping he was going to be okay. Cody had 2 very good summers and then tanked when school started back up, this summer was not a good one though.

Is there the possibility of a reduced schedule and homebound? Or making Spanish his last class of the day? In our 504 plan, we had that we could arrange the schedule to whatever was best for Cody. Maybe have English/History and/or Math on Homebound? I know people have steered you away from MoVip, but without MoVip Cody would not graduate with his class.

Last year Cody started school at 10:30. He was still sick but was able to push through until lunch when he felt better. Of course, that only lasted for a little over a month before completely crashing.

I can't answer about the early mornings for you, Cody has never been able to function that early in the morning unless he was awake all night.

Praying for you guys,

Christy

[firewatcher]

Yes, some of us crawl out of bed early and deal with the "crazy body" that happens. For me, everything is much worse in the mornings and always will be. There are studies about the circadian variation of POTS symptoms and how they are significantly worse in the mornings. Some of us, and most teenagers have this too, have circadian shifts (changes to our natural body clock) that cause us to NEED to be asleep until later in the morning. This occurs naturally during teenage years, and unnaturally (though genetically) with those with circadian rhythm issues. I have Delayed Sleep Phase Disorder, so by body's natural rhythm is 3-4 hours behind most normal people's bodies. Unfortunately, the POTS and DSPD feed on each other till the weekend, when I can sleep in and starts over again on Monday.

DSPD is a recognized disorder, much more so than POTS, and there have been schools that make allowances for later arrival through the ADA. You might go through that route with your doctor.

As for coping, I haven't found anything other than fast meds and a single cup of coffee that helps, but morning still hurt. Just like today....

[shoegal]

what about homeschooling? you can also do public school at home via something like k-12

[kclynn]

Yes, Christy, very discouraging. I know some have said just go directly to homebound but he couldn't live with that, he had to try. He was up walking around with so few symptoms, now crash! No school this morning, I went to get him and he was having major adrenaline jerks and could barely roll over. Weak. I think he had been having them all night.

I think we will have to consider homebound again. Yes, I think he can do the core classes homebound. His Spanish was 2nd last period of the day but he was stressing it and we dropped it already. Marketing he loves, and the teacher says we can not homebound that class, either. Culinary Arts I don't know. Will have to get with the teach and see if she is willing to work the curiculm around his not being there a lot but it is in the afternoon. We DO have a kitchen at home It is her 2nd year teaching and she is very sweet so maybe we can work this out with her.

[potsgirl]

I get up around 5 - 5:30 am, but that's probably because I go to sleep about 7 - 7:30 pm. I may be up that early, but I can't get out the door earlier than 8:30 - 9, preferably 9:30 - 10. I have a cup of coffee (I only drink caffeine first thing in the morning), drink a lot of water while I'm taking my meds, and after about 15 minutes can get on the computer and start checking my e-mail, etc.

I'm so sorry things are not going as well as you had hoped with the schooling. My husband is a teacher who deals with 504 plans, and I think I would bring up the reluctance of the Spanish teacher to work with J in her scheduling, if he decides he wants to try it this year. It is difficult to learn a foreign language when you're not there to practice it frequently. You may want to find out which textbook they're using in Spanish class and get a copy so that your son can start studying on his own so he has a head start next year.

Hope things get better. Has J tried a cup of coffee or a soda yet to see if that helps him wake up? Another thing to try is to have something very salty on his night stand with a big cup of water, and have him consume that before he even tries to get out of bed. That's one of the hints my doctor gave me.

[kclynn]

They are not using a textbook that I know of. She uses immersion techniques so there are no vocab lists to study. Eventually yes, I think, but to start it is like a baby learning to talk from imitation. Great for most kids, just not mine right now. We will have to see how things go.

He hates missing his first class, marketing. I think they may be able to move that to later in the day but he hates the idea of that (it would mean a new teacher and a new class). I tried to tell them he would not do well in the mornings and they ignored me. Now they are getting it. He already has two learning labs in the afternoon now, so if we ditch those and rework his schedule so he starts late 9 or 10 maybe that would work. Actually he hates the idea of changing everything now. I know it just may be the only way, but it is still all very stressful. He made it to 7th hour today. He is determined to make it early tomorrow. I hope he can. He heaps so much guilt on himself when he finds that his body just won't allow it. This morning he was having adrenaline jerks when I woke him up (probalby much of the night as he said he woke often). His arm was banging the wall. But maybe if he is forced to get up (which is what he says he wants) then he might be able to get to school mid morning.... Sigh, everyday is different. It is early in the year. I hope it is possible for him to recover a bit from this crash.

Thanks for all the kind thoughts.

[jennyg97]

I'm sorry he's having such a tough time. I first got sick when I was in high school and missed 65 days of school each in my junior and senior years.

For me, getting up earlier actually helps me. It gives my body more time to adjust to being awake before I am taxing it by heading out the door. I try to get up around 4:30 so I can be at work by 8. Of course, in the worst times, this doesn't always happen. But I find that I do better with that early morning adjustment period. I hope it works for your son too.

[kclynn]

I get up around 5 - 5:30 am, but that's probably because I go to sleep about 7 - 7:30 pm. I may be up that early, but I can't get out the door earlier than 8:30 - 9, preferably 9:30 - 10. I have a cup of coffee (

Hope things get better. Has J tried a cup of coffee or a soda yet to see if that helps him wake up? Another thing to try is to have something very salty on his night stand with a big cup of water, and have him consume that before he even tries to get out of bed. That's one of the hints my doctor gave me.

Coffee really isn't his thing, nor is soda. He only drinks water but will drink crystal light pure and I also can add a bit of G2 elecrolyte packet to that. It may make him nauseous though. And he can barely eat anything with out getting nauseous first thing in the morning. He has been compromising and sipping a chocolate protien shake and that has some sodium also.

[sue1234]

If he doesn't like coffee, put his electrolytes in some iced tea, since he drinks cool drinks. Iced tea is the only thing that wakes my brain up!

I just want to add, and I may be repeating myself, as I can't remember who all I respond what to! About 10 years ago, before POTS hit, I was having a really hard time just waking up to get my kids off to school. They'd leave, and I kept finding myself creeping back in bed and sleeping for just one more hour. After that hour, I was awake and normal. My thyroid was fine, and I was not anemic. I mentioned it to my holistic MD, and he put me on a very low dose of cortisol first thing in the morning. It was wonderful when I took the cortisol! I could wake up and get moving with NO tiredness. I took them a few months, and then got scared that I might be doing something that in the long run might not be good for my body, so I weaned down and off of it. I continued to be okay for the next couple of years, and then POTS hit.

But, the cortisol is wonderful for people who actually might need it. Has he ever had his levels checked(I know, I probably already asked you this 5 times!)

[kayjay]

My husband gets me a v8 and water when he leaves for work. i can get up an hr later. I know many people don't like v8... pedalyte also works. Dr feely at mayo clinic suggested these drinks and they really do help me.

[iheartcats]

I get up and take my medicine with either G2 or Milk. Then I lay back down about 20 minutes for them to kick in. When I wake up at night I try to have some water so I am not way dehydrated in the morning.

Mornings are rough. It's hard for me to get up and get ready, but I have to and found this works best.

Like FireWatcher, I agree it's something you kinda just get used to having to deal with. It becomes your normal. I'm also aware that is going to be hard on a young person - I can't imagine getting POTS at 15.

I sip on a Latte at work to get through those first couple of hours.

But, Electrolytes are so helpful to me. I mix those in, too...makes a big difference for some of us. Can he have SmartWater or something w/out flavor?

[bkweavers]

I'm so sorry to hear he isn't doing well but frankly, it doesn't surprise me. For the first time in 5 years, my daughter is trying full time school but a few years ago, all the pushing and coffee in the world would not have worked to get her up early in the morning. The first year she was ill, she only went to school for 3 and a half hours. She would get up at 10am or later. The second year was a hour or two more and it slowly increased until now she is finally trying a full schedule. She is finally trying full-time because she has improved so much and so many of her symptoms are gone or not as severe.

I don't know if your doctor ever told you this, but most kids with POTS go downhill in the fall which is unfortunate because that's when school begins. Liz used to frequently end up at home at the beginning of the year. I really caution you to push him because his body is going to fight back and he could end up worse. He has to try and understand that his body needs the extra rest and time for him to heal! His body is growing and changing as well right now and that can add to his symptoms. The school definitely needs a wake-up call and I would strongly urge you to educate them on this illness. If you have educated them already, it's time to go higher up and insist on modifications for him. Schools have to modify for sick children. They don't have a choice.

I know it's hard for him to have his schedule all messed up but this is how it's going to have to be for now if he wants to get better. I know my daughter didn't want homebound cause the small amount of interaction she got was so important. I remember seeing Dr. Grubb and he told her more important than academics right now was staying connected with friends and being as social as possible. For us, school became the least important. It took us awhile to feel that way and we were worried about her not graduating on time but there were other ways to get the classes in. Liz took one of her classes after school with the teacher. There are also classes online that you can take.

I hope some of this helps and your son feels good enough to stay in school part-time.

[kclynn]

Brenda,

I am aware of the October slide (that often starts in Aug) and that is exactly what is happening to him. He did so fantastic this summer that there was no question he would try to do full time. It just hasn't worked and today we decided to back off the the morning classes and he will go from 4th to 7th. Saddest thing is that his favorite class was 1st hour and his favorite teacher 3rd. It will also mean changing up his other classes but having the same teachers in all but 1 where he will have a new teacher also. This is all so stressful on him and yes, the schedule should have been done with this anticipation in the first place. Now, if he improves, does better he could add in and elective the second semester, possibly, but one day at a time for now.

The most important goal is to keep in in the school setting. Life lesson, sometimes all choices suck.

His counselor told him: sometimes we have to do things we don't want to do so we can do the things we do want to do. He has repeated that to his dad and me so I think he is handling it ok so far.

I have given the school lots of info, brochures, lists and lists, DYNAkids info, Dyna kids video. They do seem very interested in helping him at the school level and lessons learned will help kids following him. Major changes are a different story and will need to be addressed at a higher level.

His worst symptom in the morning are the adrenaline jerks and you are right, that you just can't push through those no matter how many electrolytes or fluids you try to suck down, and nausea is also present. We just don't want to push him into a crash worse than he is now.

I really appreciate all the advise. It all really helps and even if it doesn't get him up at 6 AM, all these things suggested could have a place in his day to day coping.