posted
Hi - Our oldest of three lyme infected children will be off to college in August. She has neuro symptoms, and has a 504plan now in HS.
Can anyone share their experience with me with how they helped their child. What problems arose and how you solved them.
Any students want to share how they coped with college while having lyme.
Our daughter is entering a competitive program. We all know what stress does to anyone with a chronic illness.
Any insites would be welcome. Thank you.
Cathy
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
I was very ill my entire time in college and was finally diagnosed with lyme my junior year.
Looking back, I don't know how I stayed in school before diagnosis....I guess I just sucked it up because all the doctor's said I was "fine".
I took a year off when I began treatment to give my body a chance to recover as I had been ill for 8 years at that point.
It was difficult returning to school while still undergoing treatment, but it is completely possible with a good support system, discipline and a positive attitude.
Also, I had to come to terms with that I was going to have to live my life and pace myself differently because my health was not the same as the majority of my friends and people my age. I definitely had to make some sacrifices in order to stay in school......sleep, diet, low stress environment, and my faith had to be high priorities.
Lyme makes you grow up pretty fast, but I still was able to have a really wonderful college experience!
It is really important to register with students services with disabilities (SSD) on campus.
If you do this, the teachers HAVE to be understanding if health problems arise.
Also, I had to take incompletes one semester as I had an unexpected hospital stay before finals. It gave me the option to rest and take my tests a few weeks later and I didn't have to drop the classes.
So, try to find out the resources you have at your child's school, such as the SSD and taking incompletes, just in case the lyme disease decides to cause some problems at an unexpected moment.
best of luck!
Posts: 46 | From Texas | Registered: Apr 2008
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posted
Wow ... this is great timing on this thread!
My lymie kiddo graduates in June and is college bound as well!
We've met with the "ADA" (Americans with Disabilities) counselor on the campus to determine what if any modifications may help her. On top of lyme tho, my girl child has Cerebral Palsy which really complicates it all! The lyme is mostly neuro and FATIGUE ... but overall ... she's had a rough life!
We've had to dial back her plans and "wants" to be better able to help her. Instead of going off to Texas Tech (8 hours away) like she wanted, she'll start here at SHSU.
We are getting her a scooter to help conserve energy going between classes etc and will have her live on campus for the same reason! But, I also wanted her to have that feeling of being away from home too!
They rehab counselor suggested and highly recommended she limit herself to no more than 12 college hours per semester which is 4 classes. We've had numerous "neuro psych" tests done which support that suggestion as well!
504 plans are available for college; however, the mods do not seem as numerous as we've had in high school!
Go slow ... work on each issue one at a time so you don't overwhelm yourself! Figure out who is the ADA counselor on the campus where she will attend and begin working with that person now!
Hopefully I won't lose my password again (or my lyme brain) and I will be able to come back and check this thread for any more ideas!
I'm FREAKING out that my baby is going to school ... even if it is in the same town!
Best of luck to you and yours!
-------------------- Posts: 704 | From Huntsville, Texas | Registered: Oct 2000
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kelmo
Frequent Contributor (1K+ posts)
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posted
My daughter couldn't go away to college. She has had to start out slowly at a community college. She had three classes this past semester and got A's. But, it was HARD.
She will cut back and only take a couple next semester, as she is having a hard time starting back up on minocycline. She is on lots of drugs and spine pain.
Hats off for your child attending high school. my daughter spent the last two years of high school homebound.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I have recently had to take a medical leave from college, but I did manage to complete three years with a 3.98 GPA, despite my lyme.
I was 1100 miles away from home to top it off!
It did eventually overwhelm me, but I gave it my best shot.
I was not diagnosed until after I moved back home, but I was still able to register with disability services because of the surgeries I had while in school.
They were quite instrumental in providing me allowances (beyond normal expectations) for attendance.
I would, though, make sure that your child REALLY understands that by choosing to go to college now, they might fulfill a milestone in a "normal" time frame, but they will miss out on a full college experience.
I had to focus ALL of the energy I had on my classes, and really never went out or spent time with my friends.
Socially, my experience was very limited.
Your child also needs to understand that they may have to make the tough decision to leave school once they are there.
It would have been much easier for me to have taken some time off before college, than to leave and forgo my senior year once I was already in love with the school.
I hope this is not discouraging, as many are able to have full and happy college lives with lyme.
I know a great deal of lymies who have finished on time (even early)!
If you have any questions about my experience, please feel free to PM me.
I would love to help! I wish your child the best of luck!
Danielle
-------------------- "Say little, do much." Posts: 16 | From Virginia, USA | Registered: Apr 2008
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valymemom
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posted
I have one son - now - 25 - who had to drop out of college and move back home. It has been 7 years, but he graduates from our local college after two summer courses which begin next week. We are celebrating!!!!
His brother got infected when he was home freshman year......during Xmas break. His llmd wrote a letter to the disability office and this action really helped. As a result, all these years he has been able to register for courses first.....thus choosing time slots that fit his sleep patterns.
Although he could have given each professor a letter asking for accommodations, he never did. His counselor said that this letter did not have to divulge his illness.... that was up to him....it just had to say he was registered with the disability office.
We found the best strategy was to register for 5 courses and then drop down to 3 or 4 classes. He then got to choose based on trying the schedule for two/three weeks: the school applies your money to the next semester.
The disability office shreds his paperwork upon graduation.
He received an "F" for a math course (during the spring semester when he was raging with fatigue and brain fog.) He was forced to take - many semesters later - a lower level math course to meet his requirement, but this "F" remained averaged in to his grade point average. We appealed to the academic office to have this "F' removed and had to include the disability letter and another letter from his current llmd. Haven't heard, yet, but I feel confident the grade will be removed.
This son also let his group of friends know about his illness and why all the abx and monthly doctor appointments. (His older brother tried to keep everything a secret. Even when he dropped out of his first college, he never told his roomies why.)
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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valymemom
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Like someone said above......don't be afraid to ask a professor for an "incomplete". My son had to do this for one summer course.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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On top of that my mom had a heart attack last weekend and we are still helping her and concerned with her serious health issue.
My daughter who is the senior has been ill, had a spect scan and we are awaiting results.
Alot has been going on and I to make matters worse I am having trouble processing and retaining info.
My graduating daughter is very private. Most of her friends in HS don't know she is ill. We have talked about this, and I am afraid that she will not share info with her roommate or new friends at college.
She will be 7 hours away.......I am nervous about the distance but I know I need to be encouraging too.
Lyme has robbed us of so much.
From your posts it looks like my first move is to contact the students with disabilities office on campus. My daughter hates this idea. She has had a 504 for years, and refuses to use many of the accomodations which would really help her.
Because she has been very ill for a few weeks now, she has conceded that she will use some. Her symptoms can be very subtle. To those who don't know or understand, she just looks like a quiet moody teen. When she is feeling well she has the brightest smile and a very keen sense of humor.
I emailed her teachers with info about how she has been feeling, and what they don't see. She gets home at 2:15 and sleeps until 6pm has dinner and tackles hw. She has very little time for socializing, or the energy. Someone mentioned that this is how their college experience was. I am truly sorry to hear that.
I am sorry for all that you have gone through, either yourself or your child. Thank you for sharing with me your experiences. I will check back here so if you think of anything else I would appreciate it.
Cathy
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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valymemom
Frequent Contributor (1K+ posts)
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At my sons' college, 9 credit hours is full time if registered with disability. This is important for insurance purposes.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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WildCondor
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posted
i was very sick during college, back then I thought I had CFIDS, and did not know I had Lyme. I had to take an extra semester and reduce my course load to 12-15 credits instead of 18-20.
I also has extra help from student services and was allowed extra time on my tests. All my professors knew I would have good days and bad so i got an attendance waiver that explained my need tor at times several missed classes in a row. Morning classes were especially hard. Towards the end, i was so exhausted, I had a private dorm room my last semester, because having a roomate keeps you awake...messes up your sleep, and doesn't give you adequate rest with the craziness of college life.
Make sure your child is on aggressive antibiotics and does NOT drink alcohol. Make sure the college nurse/health services is fully aware of the situation and have her chart on file with her already documented issues.
It helped me to take as many afternoon/night classes as possible. I also worked out the schedule so classes were Mon/Wed/Fri instead of daily.
I also highly recommend Methlycobalamin B12 injections every morning before 9 am, it will help with energy, stamina, endurance and overall wellbeing. get your daughter a college fridge, and keep the injectables cold, self inject every morning.
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