I just recently stumbled upon this site. I was reading a post below about lymes and a teenager and the various issues of brain fog etc.
my son is 19 and is preparing to go to Hillsdale college in Michigan in a few weeks. He spent his first year at community college - which we highly recommend by the way. Most of his courses were accepted and saved us about $24K for the first year. Anyhow...
We helped him alot at community college. He is brilliant, but the lymes has just knocked him down. We are trying to find a LLMD in the area o f his school. I am just wondering if anyone has sent a child off to school with lymes. How did they manage? what did you do to help them.
I am thinking to make very good use of the internet, web cam, email etc to check on his condtion, help him remember his schedule etc. I really don't know how he is going to make it there unassisted.
Any advice is appreciated.
Posts: 1 | From nj | Registered: Aug 2010
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posted
I wish I could help you. I have pulled my youngest off his meds because the only symptoms he has is the bart rash. We tried antibiotics and they kicked in so fast.
He will be leaving for school next week...states away from me. All I told him is to watch for any symptoms at all. He will know them because his brother and sister have it and so do I.
It breaks my heart to leave him untreated but I worry more about herxes he might have when he is alone and no one seems to believe this is real yet where he is going.
My heart feels for you.
Posts: 303 | From green bay, wi | Registered: Mar 2009
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Find out if the college has an office to help disabled students (not sure what it would be called). This is the office that can help students with disabilities to find assistive technology on campus (such as computers with screen readers, or a recorder for recording class lectures for those who have trouble taking notes), to request accommodations from professors (such as extra time to finish an exam), and to provide a person to assist them (such as someone who reads textbooks to blind students).
I am not sure what kind of accommodations would be helpful to a Lyme patient. I am sure it depends on what symptoms he is having at the time, and of course they may come and go. But that office may at least be a place to start to find a contact on campus who would help you keep an eye out for him.
There should also be some kind of student health service, and some kind of student counseling service. Usually these are free for students when they pay their fees. They are not Lyme literate, but he would have some kind of first line resources for if he needs immediate help with symptoms, or stress/depression/anxiety.
Find out about the cafeteria options, and consider whether he should live in a dorm and eat dorm food, or rent a room or apartment and cook his own. On the one hand, it's great to have food taken care of for you. On the other hand, if a special diet makes a big difference to his health, he might be better off with control of his own food. You should be able to tell the dorm cafeteria people about his special diet needs. I know they have to provide for diabetics, etc.
Also find out about tutoring. There will be some kind of tutoring service. He can go there for help with difficult subjects, term papers, etc. A lot of students need that just because they are new at college. He might need it even more if he misses class due to illness, or has cognitive problems.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A course in Sleep Hygiene should be offered for every college student. I could only study after everyone on my floor was asleep - after 2 a.m.
I had gotten mono my first semester so was way behind and very tired - a kind of dyslexia, too, that I wouldn't know about for years to come (and likely from constant infections).
I tried to do my best by staying up to study when it was quiet but that just trashed my health.
I never would have survived in today's dorms with loud music and very deep, intense vibrations. Any time of the day, those can be a problem. I hope he will have place where he is not bothered by that. It's very hard to avoid, though, but it's good to keep that in mind. Ear plugs do nothing against vibration. And ear plugs make it impossible for me to think or read.
Best of luck to him - you sound like a great family, working together to help. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Hi Waterman, the suggestions to connect with the disability office and the health dept of the college would be the first thing as someone else pointed out. If possible, meet with them in person. Also have his llmd write a letter explaining his situation and what mods/accoms would be beneficial. For instance, extra time on tests and assignments, first floor room, dorm close to classes, adequate breaks between classes, flexible scheduling of classes--maybe mornings are better or later in the day is better. The college might even have a form for the dr. to fill out. If your son had a 504 or IEP in HS you can use that as a reference for mods/accoms.
I would encourage your son to connect with other incoming freshmen (is there a facebook page?) I would tell him to try to find out how to connect to his roommate so they could see in advance if they are a good fit. Nowadays schools are squeezing 3 into a room for 2. I would bring that up to the disabilities office too, since having 2 roommates would not allow your son to get adequate rest.
Some dorms in some schools have "quiet" floors. Check for that too. He will probably have a mini frig, so it would be good for him to bring things like fruit, yogurt, water from the cafeteria to keep in the frig. I personally think it's easier to have the food already made. Even if he has a day where he's too tired to go get his dinner, one of the other kids can bring him something.
I also think it's better to have a roommate and even suitemates. Our kids have already missed out on so much, it would be great to see them get a life again. Of course, try to have him take supplements to help his immune system and make sure he is up to date on his booster vaccines.
It's great that he attended community college and saved you lots of $$! Maybe he could take other courses next summer to lighten the course load for the year. Some classes can be done online.
Good luck to all our kids.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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I am 20, and I go to BYU. I ended up with lyme this last year, and yes its hard to go to school with it. It is MANAGEABLE though. What I am doing, is that I am only doing 8 credits. That way I am able to get the rest my body needs, and not over doing it.
Going to school with lyme is possible. I promise.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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posted
We're keeping our 19 year old son home. He doesn't want to go anyway. He was diagnosed April '10 and probably bitten April '09. He doesn't want to go while he's still on IV's even though the health center is supportive.
I think starting in community college is a good decision for him. I also don't want to risk exposing him to feeling alone and being around too many people that might not understand.
I'm thinking what he really needs is to meet other older teens/young college students with Lyme. Is there a support group? a website? At a recent meeting of a DC support group a professor/researcher from James Madison University said there is a student Lyme group on campus.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
Lymetoo, yes, good reminder that alcohol is a no-no. Kids will definitely be exposed to it and other drugs. I explained to mine that some of her meds are heavy on the liver, and she can't afford to take a chance.
Mary, your son is relatively new to this awful thing. Makes sense that he should stay home. Being on IV in a dorm would be difficult and would make him stick out from the peers regardless of how supportive the health center is.
Community college is a great option and so are online classes. That said, don't underestimate how accepting and understanding healthy college kids can be. He might be able to transfer to a 4 year school in a year or two or three. College will always be there.
I agree that he needs to connect with other kids his age. I'd followup with that university that has a Lyme group. Maybe he can connect with a couple of the kids? Go out for coffee or something? I would encourage him to extend the offer. It's hard, but sometimes that's the only way to connect.
There are also groups on facebook. Online groups can be very informative and supportive, but I am sure you know that some people are in a really bad place and need a lot of support (understandably so) that your son might not be able to offer, especially if he is the one needing the support. There are those people who offer support and encouragement (bless them) but as they get better they tend to sign in less. If he sees that a site is bringing him down instead of lifting him up, tell him to take a break from it.
Best of luck to him.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree that having your LLMD write a letter is a good idea. As kids are reluctant to admit having special needs, I would deliver it yourself. My son does not have lyme disease but he has bad ringing in his ears and he got a private room because of his need to run a fan all the time to block out the noise in his ears. You just have to be adamant that he needs to be taken care of because they will let him fall through the cracks if no one is proactive for him.
You need to have the doctor emphasize to him how dangerous it is to use alcohol and how important rest and proper nutrition is. Take some time to teach him how to chose and prepare his food.
I agree that he should take fewer credits, even if he feels well, until he has acclimated to campus life. Stress always makes me sicker.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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