I have posted a lot of questions lately. I hope you aren't getting sick of me...
My son who is 11 went back to school this fall. He is going half days. He has already missed quite a lot of school and we are trying to figure out what to do.
He is really tired, trouble concentrating, joint pain--you probably getting the picture. He is having meltdowns where he starts fuming and almost cries because of frustration.
It is to the point where he has been disruptive. The school wants to work with us and have been great. It's very hard to see him like this because he is overall a pleasant kid when he is well.
He now doesn't want to go most mornings and I think it is sickness and behavior. He's significantly anxious and its a cycle where he doesn't want to go back if he's behind. He has had a few panic attacks (new) since school started and they are increasing. He is on some med for anxiety.
Trying to think if we should:
-go back on the picc line and reapproach school later? Those of you that are kindly following our fall saga have heard that we are going to restart our daughter's picc. So they could convalesce together. I think some people think that I am making them into convalescents.
-try to keep working with all this as is (in hopes that he will adjust)?
Also, a counselor suggested that if he is sick enough to stay home from school, that he is too sick to watch tv or do computer--in bed whole time. This is a hard one for me. I think that not going to school can contribute to depression, but making him just lay there sounds really discouraging. Maybe I am spoiling them- how do you handle all this?
I am recovering from lyme and it takes about all I have to get up and drive him to school let alone the struggle. Of course I want to do what is best.
posted
Hey suz....I don't know the whole story....like how long your son has been ill....but go with your gut instinct.
I'm a former teacher.....but knowing what I know about this illness, I'm not sure it's worth the struggle to continue "as is." I think he will get well alot faster if he can stay home and relax.
And forget about keeping him away from TV and the computer! The internet is the only thing that kept me sane while trying to get well!!!
You could limit his time in those activities so that he will do his homework and get plenty of rest......but I think it's crazy to confine him to the bed 24/7!!
That's my 2 cents!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
It's one thing not being able to handle going to school (due to pain, memory problems, concentration problems, etc) and the anxiety it can cause in someone who is sick (and having anxiety/depression issues/symptoms makes it that much worse) but it's another to lie in bed feeling like total crap and watching tv/reading a book/using a laptop in bed or on the couch to keep yourself entertained
You don't need to get dressed or take a shower, you can go to sleep at any time, you aren't walking from class to class and sitting in uncomfortable chairs, you aren't around your peers who judge you on your 'look'/clothes/personality, etc, there aren't teachers around expecting more of you than you can handle or want you to read a chapter out of a book or come up to the chalkboard and figure out a math equation in front of the class, you won't need to go to pep rallies and such, you won't have to deal with trying to concentrate on the teacher or the pop quiz....
So, if it were my son, watching tv or being on the internet would not be a big deal to me as long as I knew he was really ill and not faking it so he didn't have to go to school
Posts: 1485 | From USA | Registered: Apr 2004
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lyme_suz
Unregistered
posted
Thanks alot for the quick replies. Helping me keep what is left of my sanity and emotional energy.
Lymetoo-
You are helping a lot of people. It is really encouraging to read your posts even when they are not to me.
Doug has had lyme 5yrs, treated 7mos. I do feel in my heart that we should keep him home until he is feeling better.
Comforting to get your input with your experience as a teacher. I am trying to consider the opions of others, especially professionals. In the end, advise here is most on target. We all can hardly conceptualize this nasty disease. Most outside the lyme community are in process of learning...so a grain of salt is needs.
Hard to take challenges on what we are doing with the kids when we are so emotionally and physically drained. Especially when we think so hard and worry so much about the course we are choosing. It is so day to day.
So I feel that we need to have some good boundaries with this particular counselor, who is young and zealous. Doug has started attending a boys social group group led by him and we will stay with that.
Been working with Dr. J. in Charlotte about daughter going on pic. They are having us get with a ped sleep specialist to make sure IV antibiotics don't make sleep problems worse. I'm grateful they are being careful but it is hard to wait. We have to have her be off oral antibiotics for a week before we start IVs. We took her off 2 days ago and I don't want her off too long. She has been on treatment for a yr. but has had some gaps in antibiotic because of sleep and gastro troubles.
Have you heard of this going off orals to prep for picc? We didn't do this last time.
I do understand what you are going through, somewhat. My three sons have lyme since birth. They are 18, 18, & 14. Because of the problem they had while they were very young (I didn't know then it was LD) I decided to homeschool them. It worked out very well as they could learn at their own pace.
Being that your son has active LD and is herxing, I don't see how he can do much of anything. Most adults with LD do NOT even work, because they can't!
Maybe, if the school were willing, I would try to do his school work at home. But I would not expect him to do it everyday, but maybe when he has good days.
Just a thought, and I hope both of your children get through this real soon.
There are a couple of other articles there that may help.
I am sorry for your son.The social club sounds great,good way to keep in touch w/ friends.
He sounds like he needs time to heal.I think the schools would be willing to help w/cut in hours and work.The dr. office would help w/informing the importance of recup.time.
Some schools now have internet courses to help and the kids really have taken to this,plus mine have learned alot at their own speed.W/ Lyme we need to go at our own speed.Mostly Slow Mo!
I do not see how some can go to school.Most of us can barely remember how to leave the house some days.
I think taking the pressure of school off and letting him know it is OK and things will be normal in good time will help him to heal.School pressure is at an all time high,I feel for these kids.Rocket science is not for everyone.
I had to let go of alot and when I did and came to an understanding with this,it did help.
My son is not in school now,but he has planned his own thing,internet courses,works and has managed to keep his social contacts.What a relief it was,he is very happy.The pressure of meeting EOG and everyting else what not w/in his time clock,the IEP plan worked for awhile.
Good luck,are you still planning your get away?I hope you can do it.
So with this Lyme,what others expect from us is put on hold,you need to do to make your life and his a time for healing.It ain't easy w/ this stuff and it is sad so many still do not understand.
He will get thru it and be a better person to.Hey check out Ponytails letter over in OT about her daughter,maybe your son could relate and know he is not alone in this.
Also do a search here,many have had the same questions about this school issue,IEP plans etc..
posted
Hey Suz...Thanks for the kudos! I'm glad I could help. I taught school for 21 yrs and the last 10 were really rough because the Lyme was taking over my body and I struggled everyday to get to work and "survive." [I was undiagnosed at the time.]
So I really understand how hard it is for Lyme patients to work or go to school while undergoing treatment. I know I couldn't have done it myself. By the time I was dxd, I was retired on disability.
And thanks for asking how I'm doing. I'm feeling much better since taking B-12 shots every day for the past 2 weeks. I even plan to go to every other day now!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I agree with Lymetoo. Both of my children have Lyme disease but are tagged with anxiety/depression, adhd, One Bi-polar, diabetes, social anxiety, performance anxiety, thyroid disorder... well you get the picture. I have home schooled them and dropped that since I too have LD and I can not handle that much effort and mental drain either, so I enrolled them in cyber school, best thing since sliced bread. and I will not hinder them going online they find more information on there than they ever will in school. My eldest used to dislike history now he is a history genius he passed his GED at 16 and entered college and is on the dean's list! Lyme can be beat I do believe,, just have to find the cure and stay on the treatment and start early!!! that is the key the latter into the damage. the harder to reverse,,,, I hope I don't toot my horn too much and someone up stairs gets upset with me..
While you can certainly blame the ADHD on the LD, you can most likely blame the medical conditions on it too.. somewhere along the line if we beat lyme we might find more people healthy and able to learn, to work and maybe even enjoy life for a change, instead of stuck dealing with a crippled health system that could care less about our joint pains and a pharmaceutical industry grabbing all that money...the politics are the worse part of it ....
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 3 | From Lake City Florida | Registered: Sep 2005
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