Need advice from those who are chronically ill (long)

Discussion in 'The Watercooler' started by Josie, Mar 30, 2009.

  1. Josie

    Josie Active Member

    My daughter is diagnosis'ed with chronic Lyme Disease and has felt too bad from a constant headache to go to school for over a year. She spends a lot of time at home laying in her bed. There are times when she seems to feel better and will be up and around more but according to her, she isn't any better than she was a year ago. She has tried various migraine prevention treatments without any success, so far. She doesn't feel well enough to play with friends but if her sister has a friend over, she will sometimes join in.

    She is also diagnosis'ed with Obsessive Compulsive Disorder (OCD). We are working on treating this now with CBT/ERP. She has tried the SSRI's and was unable to tolerate the side effects. We are going back to the psychiatrist tomorrow to see what else we can do.

    I took her to a neuropscychologist for an assessment of her cognitive function. He deals with a lot of Lyme patients. He believes she should go back to school as soon as possible since she was capable of doing his testing for 12 hour testing over 2 days. Her Lyme doctor believes her anxiety is keeping her from school.

    She says she will not be able to go to school even 3 hours each day without it being too much. She feels she will be overdoing it and needs to be able to lay down more than that. Her Obsessive Compulsive Disorder (OCD) therapist and her dad are viewing this as an Obsessive Compulsive Disorder (OCD) issue and that she is just too comfy in her bed. However, I keep thinking about the "spoon" story and have read that people with chronic illnesses (Lyme, lupus, MS, etc.) feel worse than they look and do feel worse after overdoing it. On the other hand, even if she has a headache, she might have to learn to cope with not feeling well and still having a life outside of her bed.

    It will be a huge ordeal to get her to go to school. I have been homeschooling her but we are struggling. She does have some learning problems that I don't feel equipped to deal with and I feel she would be less resistant to someone other than her mother.

    For those of you who suffer from a chronic illness, what are your thoughts on pushing her to go to school or to accept her word that it is too much?
  2. Nomad

    Nomad Guest

    I think back to the years that I was so limited due to health problems, including lupus. I think is a very long and complicated issue that involves a variety of situations. Before I continue, I should warn views might be a little different than what others think....but I do have years of experience and am moving forward in MAJOR ways.

    For me, and I believe for others...part of the problem is a medical one...there is no doubt. However, I think often what is the case with these things, is that other things come into play. And when that happens, it gets confusing. Additionally, each "expert" thinks they have the answer. Further complicating matters, is that we sometimes get "stuck" in our illness. We learn to think of ourselves as ill...and it perpetuates itself.

    So...along with medication, perhaps vitamins might be helpful. Along with vitamins, perhaps psychological therapy might be helpful. I DO take my medications, but I try not to "overtake" them due to side effects. However, I AM APPRECIATIVE of them and their BENEFITS. I let them help me do what I would like to do in life. That is what they are there for.

    In answer to your original question, yes...I do think it might be a good idea to gently push your daughter into going to school. Support would have to be in place. As a mom, particularly of a young person, it is totally appropriate for you to be supportive. And a GENTLE move towards school is key. Would you be open to some sort of HALF day program? Could she attend 1/2 and be homescooled for the remaining portion of the day? This should not be overwhelming. is possible that doing TOO much could make her feel worse. She might have to learn to set limits in life. HOWEVER, to what extent? She is a young woman with some health concerns. Her youth should carry her to some extent. It is likely that she can do more than she is doing now and it seems like this should be explored. She will be UNHAPPY if she does not feel productive. BETTER TO BE PRODUCTIVE PART TIME THAN TO HAVE LITTLE OR OR ALMOST NO PRODUCTIVITY. She will need to learn how to modulate herself and to gently push herself...we ALL need to have this skill, regardless of health concerns. Partial day at school...partial day at home...might be a nice solution here. Do NOT accept her word fully...listen to her... in my humble opinion, a gentle...soft push with some support (vitamins/therapy/encouraging words from family) is probably called for.

    My suggestions:
    1. Ask your school district about enrolling your child in school for part of the day. See what you can find out. What classes does she like?
    2. Read up on nutrtional supplements for her conditions. I wouldn't go overboard...but try to determine if there are key supplements that might be supportive.
    3. In terms of probably already know this...but some of the better ones are Fish Oil, B6, and Vitamin D. I really like Carlson's Fish oil. I get whatever inexpensive brand of B50 tablet and Vit. D I can find.
    4. Read about Obsessive Compulsive Disorder (OCD), Boundaries, Anxiety, Depression, Lupus, etc.
    5. Make sure you nuruture yourself. YOU are a role model for your child. Books by Harriet Lerner are very can amazon for more info. Let her see you being a productive, strong and happy individual.

    HANG IN THERE!!!! Life is GOOD! :D
    Lasted edited by : Mar 30, 2009
  3. gcvmom

    gcvmom Here we go again!

    I have a son with Crohn's disease (difficult child 1), so we know a little bit about what it's like to live life in pain. You're right about adapting to levels of pain that most of us would find unacceptable. But it's a sad fact of life for anyone with a chronic illness. Some days are better than others, some worse. You learn different ways to cope.

    Although he is doing really well right now, when difficult child 1 was sicker, unless he had a fever, was vomiting, or had diarrhea and was totally incapacitated, I did push him to go to school. The deal was that he just had to try to go for a few hours, and if he found he just couldn't do it any longer, I would come pick him up early. He still had to do his homework, and I would monitor how he was doing each day and decide (with teacher approval) if an assignment needed to be shortened to accommodate his pain/fatigue/whatever symptom was holding him back that day. These kinds of accommodations are written into his Individualized Health Plan (IHP) which is sort of like a 504 plan for kids with medical issues.

    It's very likely your daughter's anxiety/Obsessive Compulsive Disorder (OCD) is compounding her problem with school. I would try in earnest to get her to go, if only for a few hours. Maybe the first week you have her try to go just until morning recess. If that goes well for a week or two, see if she can stretch it to lunchtime. Maybe even factor in some kind of reward for her success in getting through to her goal time. I think that breaking it down into smaller increments will help reduce the feelings of being overwhelmed.

    I understand the temptation to let them stay home and rest, but at some point, they have to figure out their own way of coping with the illness while continuing to be productive at some level. It doesn't have to be the same level as a totally healthy person, but they need to find a level that's do-able for them. Keeping engaged in the outside world will help their self esteem and ward off depression or a possible worsening anxiety if they are allowed to retreat and hide from the world.

    Just my 2 cents.
  4. Josie

    Josie Active Member

    I am looking into supplements for her. She is taking fish oil, inositol, 5 HTP, magnesium, calcium with Vit D, and a multivitamin so far. I'm reading a book called "The UltraMind Solution" about nutrition, supplements, etc., to heal a "broken brain" so I will be adding other things as I read.

    She can go 1/2 day at her school. She did go to a private school that is very accommodating to almost every suggestion in order to help a child learn. I won't be able to "gently" nudge her to get her to go, though. It will be a huge battle every day for a long time. But I am wondering if that is what she needs.

    She is getting psychological help for her Obsessive Compulsive Disorder (OCD). But to deal with Obsessive Compulsive Disorder (OCD), it is necessary to take a harsh stand and not let the "bully" of Obsessive Compulsive Disorder (OCD) take over. It seems like that is a little different than dealing with a chronic illness and chronic pain. I'm not sure her Obsessive Compulsive Disorder (OCD) therapist is the right one to deal with the chronic illness part because in her mind, the headaches are Obsessive Compulsive Disorder (OCD), I think.

    Thanks for your advice.
  5. smallworld

    smallworld Moderator

    For the headaches, did she ever try Amitriptyline, Nortriptyline, Propranolol, Topamax or Neurontin?

    Have you thought about taking your daughter to a pain management doctor?
  6. gcvmom

    gcvmom Here we go again!

    My difficult child 1 has a lot of anxiety, and after awhile being home sick for weeks on end, I think he did get a little too comfortable at home. He didn't like the idea of going back and having to explain things to people, try to catch up on everything he'd missed, and shift gears, so there were days when it was a fight to get him to go to school. Major arguing and heel digging-in.

    Perhaps your local children's hospital can link you with a therapist familiar with the issues specific to kids with chronic illness. I would think the Obsessive Compulsive Disorder (OCD)/anxiety component would be in their bag of tricks, so to speak, as well.

    Good luck. It's tough to know how far to push them.
  7. Nomad

    Nomad Guest

    Perhaps you can explore with your spouse or with a family counselor the appropriate way to engage in the battle if you feel that a partial day school program is appropriate. They say one does NOT goe into battle wouldn't be wise. No one likes battles...but sometimes they (battles) are necessary. When we have a cut, and a scar forms...the area is stronger. Same for you. Same for your kid. As a parent, sometimes we have to do things that are "unpleasant." You might have a very strong willed child on top of a child who has health issues. It will not do her any good down the road, if she does not know how to push herself as would be appropriate. You are taking into consideration her health problems, but know in your gut that she probably should do more. It seems like you are looking out for her best interests here. It was interesting that you had the good fortune to work with a school that was accomodating. Was this by and large a good school in other ways? I would think long and hard about letting such an opportunity go by the wayside. If you feel strongly about this and feel that with support, she should be able to go to school for a partial day, I would get expert advice and figure out how to make it happen. Google the words "natural consequences" or "cause and effect."
    by the way...IF she were to go part time to school, then when might you start? When is appropriate...when might bring about the best results? After Spring Break? When the new grading period starts? In the Fall/new school year?
    Building her strength, while not overtaxing her, would be the best thing you could do. In addition, you need to free yourself of inappropriate burdens. Surely, you could use a few hours daily for yourself. This seems worth the effort. I do hope that you can figure out a way to resolve the dilemma. Do you have support? Who might help you? A spouse, close friend, etc.? You can do this. Wishing you good things.
    Lasted edited by : Mar 30, 2009
  8. Josie

    Josie Active Member

    She has tried amitriptyline, propranolol, and topomax. We have Neurontin to try but are waiting to see what the psychiatrist says about her Obsessive Compulsive Disorder (OCD) first. We've had to try medications for 2 weeks at a time, then wait 2 weeks when stopped before trying anything new, so it's been slow progress.

    I think we will go back to the amitriptyline after trying other options because it did work for a while. We have room to increase it but her psychiatrist doesn't like it so we've been looking for something else that might work better. I thought the amitriptyline wasn't working at all but the last time I stopped it (Dec.), she did start complaining about her head more. Her overall functioning didn't decrease though.

    A pain management doctor is a good idea. She does have Tramadol and Fiorcet now that help but don't eliminate the headache.

    Last year, I found a place that specializes in children with chronic illness. They didn't think they could meet her needs because of her Obsessive Compulsive Disorder (OCD).
  9. Nomad

    Nomad Guest

    Personally, I take a very small amount of Topamax and Elavil. I ikeep the dosages as small as possible. I also take my vitamins and keep my attitude as positive as possible.
    So many people have been helped significantly by this combination. My blood pressure is/was slightly high, and I take Atacand for that. There is a chance that this medication helps with headaches. I also take CoQ10, magnesium/calcium, Fish Oil and a B50 tablet. (They say B2 helps with- headaches and the B6 helps with depression and anxiety). SOMETIMES I take Butterbur. I will take this as opposed to increasing any of the medications. I take a tiny amount of Melatonin for sleep and/or Tryptophan for sleep.
    There are studies that show many of these supplements are helpful.
    IF I get a bad headache or migraine, I take 50 mgs. of Imitrex (which is not a lot) and additional Naproxen .
    Can she take Imitrex or Naproxen? The combination is wonderful. There's actually a new tablet called Treximet (sp?) that is both of them together...many people SWEAR by it. This is what you take after a bad headache or migraine.
    HONESTLY, the medications she is taking now to stop her headaches should NOT be taken regularly. They can lead to REBOUND headaches. I go to a nationwide headache/migraine specialist and have written on the subject (in the past). The combo I'm taking is considered the safest.
    A good website to look into might be
    Website owner Terri is one to help viewers understand that there is nothing wrong with having to make adjustments when we have health problems. But a lesson for us all is that we are ultimately in charge of our own health and wellbeing.
    Lasted edited by : Mar 30, 2009
  10. Josie

    Josie Active Member

    One of her doctors gave her Frova which is like Imitrex, I think. I have been afraid to give it to her. :anxious: I think we are desparate enough to give it a try, now.

    I'll check out the migraine website.

    One of the scariest things for me about all of this is that each doctor has their own area and doesn't necessarily agree with the others, so it is up to me to sort it all out. I feel like I need a medical degree myself.
  11. gcvmom

    gcvmom Here we go again!

    Have you asked the doctors you deal with most to consult with eachother? We had to do that with difficult child 2's psychiatrist and neuro when we were juggling a mood disorder and movement disorder to make sure the medications for one didn't worsen the other. They conferred over the phone a number of times during some particularly challenging periods in his illness(es)

    Same thing with difficult child 1's psychiatrist and GI doctor and medications for IBS to make sure they didn't conflict with medications for anxiety/depression.
  12. Nomad

    Nomad Guest

    A winning combination for me and for MANY of my friends is this:
    Topamax (and sometimes Elavil combined). Another potentially good combo is Zonegran (also p0ossibly with Elavil). Try to keep the dosage (s) low if possible. Over 50 mgs. of Topamax is sometimes an issue cognitively. Certainly over 100 mgs. is very likely to be a problem. However, sometimes it takes 100 mgs. to get the job done. You'll have to ask the doctor about these medications...
    Re: Topamax and the potentiall for cognitive dulling... I know of a natural product that helps with that cognitive dulling though. It's called PS for "short." If this doesn't help and the cognitive dulling is very bad, then some people take Ritalin or Aricept.
    Most docs are not willing to fully admit about the "dulling" that Topmax can varies. Try to find any understanding doctor. However, keeping the dosage as low as possible and taking the PS is a good potential solution for that.
    Also, those vitamins DO help a little with headaches/migraines and every little bit HELPS. One more thing...I would NOT not not not take those "abortive" headache medications your daughter is taking unless it is a desperate last reosrt type thing. You can probably take them now and again...but my guess is that taking it more than that will create MORE HEADACHES. IT IS LIKELY CAUSING A NASTY/never ending CIRCLE OF PROBLEMS. Instead, take the FROVA or Imitrex. Personally, I like Imitrex better. If you combine it with will also help with- any body aches. You might also take Axid with it. Be careful, sometimes stomach medications will cause headaches too. Axid does NOT do that.
    It sounds like TONS of work, but once you get it right, the headaches reduce and it becomes EASIER. In addition, keeping a good attitude and moving forward in life both for your daughter and yourself, is the way life was meant to be. These are just bumps in the road. Some doctors either don't truly know the answers or think they know the answers but don't. Some are trying their best, but are just experimenting. Some are USING you to make a dollar. Your job is to take the information you are given, research, experiment, keep a good attitude, be brave, put one foot in front of the other and move forward. Do you want to be happier and healthier? Do you want this for your daughter? It'll be a good thing. A book recommendation for you: Feel the Fear and Do It Anyway. It is AWESOME!
    Lasted edited by : Mar 30, 2009
  13. Josie

    Josie Active Member

    When she tried the Topomax, it made her cry uncontrollably over minor incidents so I don't think that will work for her. She was just on a very low, starting dose.

    I just looked at her Tramadol and Fiorcet and she has taken an average of 3 - 4 pills weekly combined. I try not to give them to her too often because even when she takes them, she still feels bad enough to lay in her bed.

    I want her to go back to school for her sake as well as my own selfish reasons! I am now her nurse, teacher, and therapist, as well as her mother. She does have an Obsessive Compulsive Disorder (OCD) therapist but a lot of Obsessive Compulsive Disorder (OCD) treatment has to be done at home. It is a constant struggle. Plus her Obsessive Compulsive Disorder (OCD) was so bad until recently that she couldn't sleep alone! Then I was subjected to her waking me up in the night even though I was sleeping in her room. I do have a husband so obviously this was a strain. Thankfully, that part is improving and she will go to sleep on her own now.
  14. Nomad

    Nomad Guest

    That's really interesting about the Topamax making her cry. Elavil is an antidepressant. Perhaps that would be more appropriate. Perhaps she can't take Topamax or at most, she can take 25 mgs. Topamax is a REALLY tricky medication. You have to start on a tiny dosage and work your way up. When I took too much of depressed me. Much of this was because it made me feel like a ding bat. The lower dosages don't bother me nearly as much and I appreciate the headache relief. I would try to find a neurologist who has either an interest in headaches or an interest in psychiatratry...ideally both.

    AND I think taking those tablets you mentioned to stop headaches as much as she is taking them is way too much. Perhaps once a month is more like it. Instead, Frova or Imitrex would be a much better choice. These are the medications that one might take for a difficult headache problem.

    If this gets REALLY might have to find a psychopharmocologist. (sp?). Just find a caring and qualified physician, educate yourself a little, use common sense, try things for a reasonable amount of time and don't hesitate to get a second opinion. It REALLY is worth it.

    Additionally, the next time she goes to the doctor, if it hasn't been done already, I would have her thyroid levels checked. If she has a low thyroid level...this could cause all sorts of problems.

    by the way, if you want to do more in life, in my humble opinion, this is not "selfish." I think it is noble for you to want to help your daughter, but wise for you to also want to be good to yourself. I do NOT see a conflict here. By helping her get healthier and moving to part time school, both things can be accomplished. Perhaps your daughter is worried that you will try to force her to full time school. You might want to double check your heart and ask your husband what he thinks. If that is the case, you can assure her that unless there is a change, you think going to school pt would be fine for the next several years at least and indefinately if necessary. It would be impossible to predict the future. However, I would really try to at least get her to the school part time. I sense she needs a little bit of a challenge and you need the "space."

    I do hope that you can find a physician who will help your daughter and family. Give him or her at least a few tries. If you are unhappy, get a second opinion. You and your daughter are entitled to health and happiness. Do not be afraid. Consider going to the library or checking and getting the books I mentioned below.

    As a side note: I partially homeschooled our daughter for two years. It was by far the BEST years she had academically. The times we have pushed both of our children, were the times that they have grown. And recently, I have pushed myself and it has paid off significantly.

    If you find this has helped you...I do hope you will let me know.
    Wishing you strength and happiness.
    Lasted edited by : Mar 30, 2009
  15. flutterby

    flutterby Fly away!

    FOP -

    How did she do each day after the testing? Was she more fatigued? In more pain?

    How does she do after school time with you? More fatigued? More pain?

    I would judge based on how she reacts physically to these kinds of situations and go from there.

    It's impossible to quantify how fatigued or in pain, etc, another person is. But, if she doesn't seem to become more incapacitated after those types of activities, I would start with a 1/2 day of school and build from there.
  16. Kjs

    Kjs Guest

    I feel for you regarding headaches. difficult child has headaches daily. I keep advil and Excedrine migraine at school. viewing the log at school he takes this daily. Occassionally will use BC powder. He has had a ton of blood work. Seen a pediatric neurologist, MRA, MRI, Ct-scan, 48 hour EEG. he has had it all. Didn't turn up a thing. When the headaches get out of hand we go to ER where he will get an IV of Tordel.
    On hand he has Tylenol #3 used as a rescue medication. It works for him.

    Me - it would make my headache worse. I have daily headaches and have just learned to live with them. I go to a pain clinic. When they are bad I take Fioricet with-codiene.

    I have never seen Fioricet mentioned here before. Does that work for her. I am really curious of this because I would much rather have difficult child take Fioricet than daily advil / Excedrin or Tylenol #3 (he can make 15 pills last him several months)

    topomax did nothing first time he tried. This past fall he wanted to try again. We believe it may have caused confusion. More of an unreal feeling. That was within a week of taking Topomax. However that feeling has not gone away so we do not know.

    I know when difficult child's head hurts real bad he cannot be at school. I hope you find some good answers. I am really curious to the fioricet working.

    My difficult child also has not had good results with most medication he has tried. Currently crossing fingers for Lexapro.
  17. Nomad

    Nomad Guest

    Taking Exedrine daily or nearly daily is probably a really bad idea. Same with fiorecet. We now know that these medications cause rebound headaches and/or migraines. So, patients end up in a headache cycle. Taking Exedrine or Fioret simply causes headaches to re-appear at a later date. They can be taken in a pinch...but not regularly. Imitrex is the MUCH better choice. This medication will NOT causes the later REBOUND. It takes awhile to alter/stop the cycle...but it can be done. Sometimes Imitrex takes a little longer to work or has to be mixed with Naproxen. But again, it doesn't cause a reound.
    Rebound Information can be found here:
    A good website to look into might be
    Lasted edited by : Mar 31, 2009
  18. Marguerite

    Marguerite Active Member

    Some years ago in another lifetime, I had a great deal to do with a medical team that were at the forefront in the world, of treating people, including teens and pre-teens, with Chronic Fatigue Syndrome. At the time some of the treatments were controversial and in some cases were, I feel, a bit too tough. However, they did pull back a little and in the end had great results with a combination of multidisciplinary approach and getting people active instead of allowing them to crawl into a hole.

    I have also experienced something similar, because my own health issues were sufficiently close, for my doctor to think I might benefit. I not only talked to other patients, I interviewed the doctors and then found out what it was likfe on the receiving end.

    Results - what you have to do, is keep her involved in life and NOT simply "marking time" while she waits to get better. Especially while still youing, she needs the social interaction with peers, so even when she's bedridden, arrange for friends to drop over on a regular basis. Encourage her to go out for an evening or for a few hours with friends. Even if she spends the next day in bed, if she has a short outing with peers (shopping for jewellery at the mall, for example) it is worth it.

    The other thing to watch for - STOP ENABLING HER. Let HER work out her own rest needs but also ewncourage her to set time limits on her rest, then get active for a bit, then rest again. Rest when you need to, and ONLY when you need to. As far as activity - she should do as much as she can, push herself somewhat if she can, but stop before she gets too tired. Plan to have rest available after exercise, but also PLAN to exercise.

    If she is finding headaches a problem, finding it difficult to get out of the house due to the beginnings of agoraphobia, then perhaps going for a walk at night could be an option (depending on where you live, of course). Walk with her to keep her safe if you need to. I also get headaches (not as bad as I used to) and found that wraparound sunglasses were good as preventive. I get the ones that you put over ordinary prescription specs because they block out a lot of light from the side. I learned to avoid strong contrast, I sit with my back to windows or to the view.Even indoors I will wear sunglasses if there is a brightly lit window or doorway in my line of sight.

    As for school - she needs to get herself there, but also needs to build in a rest opportunity. Partial enrolment can be one solution. Having the option of going to sick bay with schoolwork, so she can rest if she needs to, then go back to class - a good middle-of-the-road choice. Correspondence lessons can be another. Having HER have the call, making the choice - is what is needed. She needs to learn her own limits as well as her own capabilities. Depending on how much she is letting fear control her, you may need to push her hard. This is the painful bit.

    A multidisciplinary team is really valuable here. If there is a CFIDS multidiscplinary team you can access, they may be able to give you advice which should easily cross over to Lyme Disease.

    I would also never accept the diagnosis without question. Even if Lyme was confirmed, there is always the possibility that there is something else there too, masked by the original diagnosis. Always keep an open mind, always question, always challenge, always keep pushing her (or encourage her to keep pushing herself) and the more she makes her own decisions to get active at least to a small extent, the better.

    There is life after this sort of illness. Not just mere existence. But time in the meantime marches on, she mustn't get into the habit of thinking, "I will do X when I get better..." because she needs to be doing it NOW. Life is for living now, not for postponing until she feels stronger.

    Part of Lyme as well as part of CFIDS can be mental "fogginess" which can interfere with learning, making it phsyically exhausting just to read a book. Help her find ways to reduced the rate of fatigue but also help her recognise that there ARE other ways. Lateral thinking. Getting creative with lifestyle.

    But she MUST get out and live, now.

    At all costs. She also needs to take control back, herself. Make her take on some personal responsibilities for herself - maybe don't make her do all the usual chores at the one time, but she needs to be doing chores, even as part of a team. Do not wait on her hand and foot, or even come close.

    Example - sometimes I've needed husband to help me wash my hair. I also need help to hang out washing. But I fill the washing machine, I empty the washing machine, I organise the chores so the ones I can't do, I have help lined up.

    I've seen people who are living with someone who CAN care for them, and these people can get into the pattern of "resting until they get better" and not have to lift a finger to do anything, because they desperately fear it will make them worse and so do their family.

    The best way out of this - she needs to push herself, but steadily, slowly, building up in manageable increments. If she has a bad day or a relapse, she needs to ease back (not too much) and then get back onto the treadmill when she can. Relapses happen for all sorts of reasons, not necessarily because she overdid things. And it doesn't mean being worse off than before, or losing all that ground, or anything so dire. She needs to know that it WILL be OK.

    I hope this can help. She needs to be in touch with other kids, first and foremost. Invite kids round for a popcorn party or something. If it tires her out - so what? her body can rest. her mind needs to grow.

  19. Pam R

    Pam R New Member

    I've had Lyme since a child. I know what she's going through. I'd not push her, as it's apt to make her worse. It made me worse.

    Also, being stressed was the absolute worse thing, for me. I got a lot worse, rapidly, when stressed.

    I also have the neurological, cognitive, metabolic stuff, in addition to other symptoms.

    It was not mentioned but I'm assuming she has had appropriate, but often very hard to get, treatment for Lyme from a Lyme Literate doctor, also hard to find and get into see?

    I think she needs to be encouraged to do what she can, at home. I expect the school can set up tutors for her.

    As far as the Obsessive Compulsive Disorder (OCD), I can't comment on that, having no experience.

    But you are right about the spoon story. One thing both husband and I hate is when people say, "But you both look fine!" Invisible disability stinks! No one can see the pain in our bodies that's 24/7.

    And migraines are a typical Lyme symptom, one I've managed to avoid, so far.

    As far as 12 hrs of cognitive testing, she may have managed that, but it had an end. She could not manage it day after day, I bet, and have to deal with the pressure of a school setting.

    I've managed several bouts of the testing, but it wiped me out for days afterwards.

    I just know what my life has been like, and what's happened when well people who really have no clue what it like, insist you do more than you are able.

    Pam R.
  20. Nomad

    Nomad Guest

    Be careful about is rare that I have "met" someone who says that this medication has helped them. Amitriptyline (Elavil) is a popular and good medication for both migraine and depression.Teri frorm that migraine website I mentioned talks with- a lot of people and knows more. Neurtontin does help people, but it is weirder than Topamax. It seems to be more for very specific neurological issues and I haven't heard many people who improve with- it...particularly headache people. I hear a lot of people get improvement with Topamax, it's just that it is a PITA medication. Some say they like Zonegran...that it is similar to Topamax...not as strong. A "few" take a Butterbur PLUS or instead of a medication prescribed by the doctor. You can buy Butterbur from or from Life Extention. Some health food stores carry it. I think Teri has a way to email her. She has written a book and knows a lot of information. Teri says it like it is and is a good resource.

    Also, there is a 1-800 at the Life Extention website (LEF) and they know a decent amount about the natural "stuff." Personally, I have found that combining the natural products and keeping my medicaition dosages low, keeping a good attitude, etc. has brought me progress and joy. This is my hope for you and your daughter.

    As a side note...Does she see a physician for her Lyme disease? Does she need to take medication for this?

    With all that your daughter has on her plate, your daughter might not be able to go to school full time. However, I think it is really good that you have a cooperating school by your side. Perhaps after the Spring holiday break she could take one class in the morning and in the fall she could go half time and then leave it at that. She could have a bite to eat and an hour nap before doing any more homeschooling work in the afternoon. Set the timer. No enabling. When it comes to a sick thought is that it is appropriate to help, but it doesn't do any good to enable. Let them meet you half way. If she doesn't feel well, you can ease up a little on the afternoon work...but make sure something gets accomplished, even if it is only a little. She should have regular school work to do in the afternoons that is not too stressful.

    Other things...going to bed early...healthy food. She could use the afternoon to go to doctor appointments, including therapy. If she gets a cold or something, she could easily take a few days off.

    Perhaps use a documented curriculum, so that she doesn't fall behind and graduates with a diploma...should this end up being a permanent thing. By going to school pt, she will meet a few friends and be aware of what is going on in the community. IN time, let her be in charge of picking the courses too...although it is best that they be in the morning. Take a look at the PE Forum here. You will see that enabling leads to heartache later. Honestly, I think you will both benefit greatly from the experience.

    I have been there both medically (lupus and migraines) and academically as a homeschooling mother. With effort, inner strength, support...this is workable.

    Please take time to nurture yourself.

    Teach your child to do the same when she doesn't feel well, so that she will have strengh to last longer and do more at other times.

    I do hope you will be able to get more time to yourself. You do have a lot on your plate (as well).

    Well..I'll back off now. Wishing you guys well.
    Lasted edited by : Mar 31, 2009