happyWImom
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Posts posted by happyWImom
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What the dr.'s originally thought were syrinx's on dd's spine, they now say aren't. They do think that she has a demyelinating lesion on her spine. After looking into that, and going over symptom's she's had for years, we suspect Lyme's. I have heard about Shea Medical Center's aggressive, integrative treatment for Lyme, and was wondering if anyone is familiar with them. We don't live in AZ, but I have friends there. There is a facility here, and I am investigating them, but I think there approach isn't as quick, or aggressive.
Thanks, in advance.
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When dd was diagnosed with a tumor in her eye we had a terrible time getting in for her brain scan and then appointment at the Children's hospital. There was a lot of anxiety. I did a lot of cuddling. A lot of holding and singing to her just as I did when she was younger. We did some praying. We talked about how knowledge is power and that knowing more information would help the doctors to help her. The tiny bit of googling I did on your dd's diagnosis (which I'd never heard of) seems to indicate that discovering it now as a child is so much better than discovering it later as an adult when it is usually discovered. (Take the preceding sentence with a huge dose of salt since I know nothing other than what I found in less than a minute of googling).
One thing I do know is that G-I problems and anxiety can go hand in hand because a lot of the chemicals your body releases to deal with stress actually starts in the gut (seretonin esp.)
Things I found helpful - as to be put on a cancellation list so that the appointment can be moved up if possible. If this is rare and genetic like my dd's condition, ask to be referred to a genetic doc. as well. They can give you more knowledge.
I have been searching to see if there are any doctor's in the area who deal specifically with her condition, and plan on trying to contact them as well as Children's. The genetic doc. idea sounds like something to explore as well, thanks. In some of my reading, it sounds like it could be genetic, and that we might eventually want my ds to have an MRI, too.
I am trying to comfort dd as much as I can. She's slept with me the past 2 nights, because it seems to help. I've explained that we will search until we find the doctor who is the perfect fit for her, and we won't give up.
From what I've read, I think it was a blessing that we discovered it now, too. It helps to know that a lot of the "pains" she's been having aren't all in her head, or it's not been her blowing them out of proportion.
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Did they do the MRI all the way to the base of the spine to see if she had a tethered cord as well? It could be that the GI issues are related to the spine issues. I remember that from when my daughter was diagnosed with a Chiari I malformation.
I think they did (it's terrible I don't know) but I was going to ask about tethered cord. One thing I have discovered in my searching, is that we need to find a doctor that has specifically dealt with this. It's not super common, so just referring us to neurology at Children's Hospital isn't guaranteeing that we'll see a specialist who is extremely familiar with her condition.
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I missed your original thread, can you say what kind of chiro reaction she had? I had a horrible experience with severe nausea, shaking, sudden exhaustion and weakness after going to a chiro for a neck problem, stopped treatment, but have been dealing with GI problems and anxiety since around that time (may have started before the chiro thing, I can't remember). Battery of GI tests found nothing, and I have no idea where to go now.
I hope the doctors can piece this together and she feels better soon!
The week before, she had a massage & was very nauseous; we thought it was nerves. Then, immediately after her chiropractic adjustment, she did start to shake and have full body tremors. Almost like she had received an electric shock. She started to shiver & teeth chatter, too. Again, it was attributed as anxiety, but then when she had a few more episodes afterwards I had her see the pediatrician who did a strength test and then ordered the MRI. My dd had anxiety & GI stuff prior to all this. Now, we aren't sure what's connected, what's causing what, etc....
Thanks for your good thoughts, and I hope they figure out your issues, also.
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:grouphug: I am not familiar with this. I am so glad, though, that you took her in and her doctor tested rather than attributing her symptoms to anxiety. I feel bad that I said anxiety when reading your original thread. I read a bit. It seems it would be important to see a neuro who specializes in this issue if possible, even if you have to start somewhere else initially.
Is she on anxiety medication? Can the therapist have a physician relationship to get her medication adjusted if needed?
We all thought anxiety, it's hard to distinguish. Even now, she's having lots of different pains (which in my research, can be caused by the syrinx) and it's hard to know what is anxiety, her gastro pains, or this. :( I am going to see if we can at least up her anxiety medication, but it doesn't seem to have been working for a while. I'm hoping that somehow between the therapist & her pediatrician (who doesn't even know yet-we saw a different dr.) we can do something to help her anxiety, now.
Thanks so much for your concern. :001_smile:
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Can you get her in quickly with whomever is treating her anxiety? I hope you get some answers soon. :grouphug:
Another complication is that we leave for Florida next Friday. We need to see when we can get in to the Neurologist, then go from there. I do have a call in to her therapist, so maybe she could even do something over the phone.
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Very sorry to hear about this complication - I don't know anything about it, specifically. When I saw your post the other day, all I could think of was the connections between the digestive, immune and nervous systems, as they are indeed interrelated. Anxiety and gut problems go hand in hand. Unfortunately research on these connections is, IMO, in its infancy.
Thinking out loud, my primary question about the cysts would be what's in them and whether the fluid can be tested for infection. I might go so far as to ask about testing immune parameters (various IgGs and so forth via bloodwork) considering the gut and anxiety, but AFAIK that's not a neurologist's area.
(I apologize for coming out of left field, bringing up angles that might have *no relevance* whatsoever to your situation, but just thought I'd throw these thoughts out here in case something rings a bell. I have a kiddo dealing with very controversial immune issues that affect the nervous system and probably have a very significant gut connection, including anxiety but much more, where there is insufficient research and woefully insufficient available medical expertise. We are doing the best we can, way outside the mainstream medical box. The good news is that fixing the immune system is not necessarily impossible and successfully identifying the presence of a specific infection is a great start for treatment.)
Good luck and do let us know what happens!
Eta, as far as communicating with your child, what I do is tell it as honestly as I can but with as limited detail as I can get away with, without emotion, more nonchalant, "here's the situation and we're going to fix it but we will have to wait to see what some doctors suggest".
I feel like everything is connected, also. I think we've wasted so much time and ended up with no answers; I'm not going to just "go along" this time. We do have an appointment with a gastro dr. at Children's in 2 weeks, so I plan to make sure that everyone is working together.
I'm trying to do just what you do with yours, give her the info. but don't dwell or get sucked in to the emotion. I know it seems cold, sometimes, but if I got emotional I know it would unnerve her. I also know too much info. is too much info. for this child.
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Youngest DS has a spinal cyst. It was discovered when he had an MRI after he was diagnosed with scoliosis. The ortho doc wanted to make sure he didn't have a tethered cord or any other underlying problem. He had us go see a pediatric neurologist. The neurologist said as long as the cyst didn't bother DS there was no need to mess with it. He said if it ever did bother him he would definitely know it because the pain would be pretty bad and it would be in his hip. And that we'd deal with if/when necessary. Bu I don't know if that's anything like what your DD has or not.
I know the next step is to see the neurologist, and we won't know anything until then. The problem is Dd's anxiety. She wants to know what it is, what can we do, what will happen, etc... RIGHT NOW! Obviously, we can't give her that. I need to keep calm so that I can keep her calm. Her mind is all over the place.
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I don't know if anyone is familiar with this or not, but I'm hoping someone is. Dd had a severe reaction from a chiropractic treatment last week, so her pediatrician ordered an MRI. She had is last night, and they found she has 2, what they call syrinx's on/in her spine. They are like small, fluid filled cysts. They want her to see a Neuro. pediatrician next week. In reading up on syrinx's, I don't feel reassured, and am trying to hold it together. Dd has had so many problems with her intestines, and we've been dealing with lots of specialists that have not helped, she's struggled with anxiety and OCD, now this. She basically has no confidence in doctors (I don't blame her) and is always thinking of the worst case scenario. Her anxiety is now through the roof, and I am trying to keep her calm. I just don't know what to do.
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Her regular dr. was out today, but I was happy with the one she saw because she was very pro-active. She did a pretty thorough exam, and everything seemed normal except one slight thing with her knee/knee strength, so she wanted to consult with a ped. Neurologist. She gave him the run down & even though he also said it was probably okay, he wanted to rule out a neuro problem, so we're doing an MRI. But, the ped. did say she really thinks my dd should see a psychiatrist and have a full evaluation. We like our therapist a lot, but she's a psychologist, and obviously can't prescribe meds. Also, they had dd (and all of us) fill out lots of in depth questionnaires when we first started seeing her, but I don't think it was a full evaluation like they want done.
I made the mistake of getting online this morning to look up tremors & the like and the thought of it being simply anxiety (even though it's horrible for her) over all of the other horrible diseases is reassuring.
Thanks for all of the support. It helps to know she's not alone. I wish I could find some sort of group with kids her age that have similar issues. She feels very much alone and feels somethings "wrong" with her. :(
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Sounds more like a panic attack, anxiety to me.
Since you are taking her in to the doctor, I'd have them test her B12 levels. Low B12 can cause you to have more anxiety.
Thanks for the info., it's helpful.
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I've had panic attacks with symptoms like that, but I agree she should see her doctor to find out what's going on.
Thanks for your feedback. Not that I want it to be a panic attack, but I would prefer it to nerve damage. We are doing to the ped. today.
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Help! My dd suffers from lots of intestinal issues, as well as anxiety & OCD. We took her to a chiropractor last week and she had a pretty mild adjustment. She was nervous (she had had one other treatment 2 years prior from another dr. that scared her) prior to the treatment. Immediately after being adjusted, she started to have these full body tremors, teeth chattering, etc... It went on for about 20 min. Scared the life out of her. Chiropractor thought it was caused by anxiety. The next afternoon, we were riding in the car, singing-same thing happened. Last night, she was watching t.v. Again, same thing.
I can't believe this is just anxiety. I'm taking her in to see her pediatrician, am wondering if a nerve was damaged, or what. The chiropractor said she used very light pressure, didn't think she caused this. I'm wondering what the ped. will do, because if it's nerve damage, will that even show up on an xray?? We're leaving for our first trip to Disneyworld next week. Ugh. My poor dd is so upset because she wants to know why it keeps happening and if it's serious.
Has anyone experienced anything like this?
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Is she getting any counseling for the anxiety and OCD? Have you considered a full psych eval so you can see if there's anything else going on? As much as people don't like labels, she might be eligible for some accommodations now, with her college entrance testing, and in college. This would be a good time to consider evals, to make sure you have complete information. For instance, what you're calling "needs time for comprehension" is low processing speed in my dd. Like an almost 60% gap between her IQ and her processing speed. And that gets her disability accommodations. It informs how we handle our work now and having the paper enables her to request appropriate accommodations in her online classes.
Yes, if you spend your time hanging on the MS and HS boards and looking at schedules for kids with no disabilities who are going to Harvard, who win national prizes, who do DE in 9th just because they're able to and bored, well YEAH you're gonna get all swizzled in the head. I hang on LC and don't go over to the high school board much. I know my dd's IQ and I'm not confused about how bright she is. I just know I have to homeschool her through high school with integrity and appropriate to who SHE is, not somebody else. My goal is to do things that help HER blossom, not what was great for somebody else. And we don't do that perfectly, sigh. But we TRY. And it starts by totally ignoring the crowd and getting evals and looking straight at your own kid, with their reality, and thinking about what will help them blossom as a human being.
I think everyone has something they can do well, maybe several somethings. I think it's nice if kids have the time to find that. I think kids who find that develop a strong sense of themselves and what they have to give to the world. Hopefully in the process they learn a work ethic. And hopefully along the way those gifts and that willingness to work make a space for them in the world.
At least that's my theory. And rigor and shoving them through a list had nothing to do with it.
We are getting counseling, and have for the past 3 years. They've never brought up a full psych eval., though. How exactly does that work? She's never been tested, so I don't have any idea regarding IQ or anything. It is making sense to me now, because while math has always been an issue, she gets frustrated and says she has a hard time remembering facts, historical type facts, and connecting things. When I read aloud, she asks a lot of questions and doesn't always "get" certain contexts. Yet she can remember the names of every bird, insect, amphibian, etc... she's ever seen or read about! She knows their habits, behaviors, oddities down cold.
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Why would you need their distance learning school?? Why not just try *1* or 2 classes OM for 8th and just ease into it and see if it's a good fit? :)
Besides, when did rigorous become the religious word it is with some people? Mercy. Some people do better with engaged rather than rigorous, diligent rather than difficult, unusual rather than typical AP pile-up. It's not like rigorous, pile up your list of 4s and 5s is the ONLY way to become a whole, productive, healthy human being who has a place in the world and knows what they have to give, kwim? You've already shown she has an artistic, creative soul. Probably she's going to want time for that to flourish, with an appropriate, diligent, consistent load of work. OM, something normal can be that. It doesn't have to be the hardest thing there is to be good.
When you're trying outside stuff, sometimes it's nice to build up slowly. Like for 8th try *1* outside thing, for 9th try 2, just build up, kwim? That way you build up her skills, her ability to handle homework and deadlines, etc. too. Or maybe try a mix of one OM syllabus and one online interactive class, kwim? You don't have to go into it all at once. Build up to things so her skills build up. Less shock. She's not going to be the same person in 9th she is now. Comparing 7th and 10th for us is like comparing K5 and college, wow. Seriously, totally different human being. 8th is a great time to do some really interest-led wackiness (your last hurrah) before you buckle down. So let her have something really wild she likes and then pick something that is a bit of a stretch that prepares her for whatever you might be doing in 9th.
It's ok not to have all of high school totally figured out. You'll probably make some kind of framework about the classes she'll probably want to do (4 english, 4 history, art, PE, that kind of thing), and then shift what you actually use to accomplish those things as you get there. It can all flex. Lots of ways to skin a cat. :)
I spent some time looking at Bridgeway a couple years ago. OM has a lot easier structure to implement and would have the artistic side to fit her. I think OM would be *easier* to make happen, easier to transition into and use selectively, and it's probably less expensive. Does she have an ipad? OM tends to use traditional texts, and some of those are now available for ipad.
My original plan was to do just as you suggest, let next year be a "last hurrah", with some slow build up. I purchased Lightning Lit 7 for her to use when she's finished with History of the Horse, because we've not done much in the way of literature studies. I like the look of it a lot. It will be a challenge for her, but not too overwhelming. I guess I was thinking we should do OM as a distance school for the accountability. She's always worried about being "behind" and keeps telling me "If I was in public school, I would have to do such & such, and take tests" yet when it comes to getting school done, her motivation constantly fluctuates. I know I am to blame for a lot of it. She has anxiety & OCD, so behavior issues definitely come into play and I'm always trying to figure out the best way to handle it. Melt downs put us back, and now puberty is here. I guess that's where my panic is setting in.
I have come to the realization that I'm not putting any pressure on when it comes to math (our downfall) and will not let where "everyone else is" change our course. She isn't going to be a math major, and I want her to understand what she's doing, get the basics, and not feel badly about herself. As to rigor, you are correct, some people do better with engaged, and that was my hope & plan for both of my dc. I get on these boards and look at schedules/classes for 7th & 8th graders and think "What have I done??" or "They aren't prepared?" Thank you for snapping my sense back into me!
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Wait...she's doing Beautiful Feet Books Early Am. History *plus* Intermediate History *plus* History of the Horse? :svengo: Gosh, I wouldn't blame her for "hating school" if she's doing all of those in one year.
Maybe it would work for her if you quit trying to come up with interesting, engaging curriculum and let her follow her own interests. Of course, she's at an age where it will be important for her to think about her future, and so you and she could have that discussion, and then go from there.
FTR, I doubt that all ABeka or all BJUP, especially done through the distance-learning schools, would be a great thing.
No, she's doing Early Am History Intermediate guide and History of the Horse is more like her lit. study.
I have tried to sit down with her and ask which type of curriculum she would like, and her comment was "It doesn't matter what, I'll hate anything." At one point, she said "Lets just do BF Ancients" because BF is known to her. But, she didn't really look at it, as I wanted her to. It is a lot more work than the 2 others.
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You consider her 7th this year? The real question is going to be what is your game place for junior high and high school? Her 8th grade is to position her for 9th grade work. Have you ever wondered about ADHD with her? You mentioned a couple things that could be flags for it.
That's a big transition from the apologia elementary books to Gen. Gen wasn't a fav here either. Have you started thinking through how you're going to handle high school? You're mentioning workload, but there's also what type of work it is. (textbook reading, projects, whatever)
My dd is a doer, and you're correct that it can be a challenge in a situation like this. I totally agree with what you're sensing could happen. On the one hand, my dd is total phenomenal to work with. She's a hard worker, very bright, mildly competitive (in class situations), and very diligent (when she wants to be). On the other hand, when she decides something isn't whatever, she's totally checked out and just gives up. It is as frustrating to work with as you fear it can be. And you are correct that *structure* (buzzword=structure) CAN help with that.
What you might think about though, rather than pat across the board (though that's not necessarily a bad way), is a blend of ways to get that structure. Map out her high school work, and mark the subjects you know you can work out together just based on her own interests and volition. For instance english, art, there are going to be some things she's fine with. Then find the ones that need more structure to go better, things she might not drive so much herself, and figure out some reasonable structure for those. BF is pretty open-ended time-wise. MFW for high school tends to be pretty concrete. Textbooks are pretty concrete. If it comes with something you can type into a syllabus and has clearly defined tasks, that's concrete.
Actually, you know what she might really like (if you're open to it) is Oak Meadow. Check it out. Of all the structured, pre-done programs, it's going to be the one with the most artistic sensibility, the one that will have artistic options for projects, etc. It's pretty standard stuff, very structured, and might appeal to her. And that would give you that buffet where you'd say ok, here's our list of the credits we need to cover for high school (and show her the 4 year spread), how much of this do you want to use OM for and where do you want to diverge with a couple things we think up. And sorta has that out. Then your 8th grade is getting in place whatever skills she needs to be ready for that 9th grade plan. Work backwards like that.
It helps me to see it all laid out, like you've done. Honestly, everything you've written is what I have gone over in my head (and on paper). I'm terrified of making the wrong choice for her, now that high school and beyond is looming closer. I know that I just need to make a decision and be done with it, but it's difficult for me. I overthink everything!
I have looked at OM, because we did try a Waldorfish slant to our work for a while. It appealed to me. If I did it, I would do it with their distance learning school. I know there have been lots of questions about the rigor of their classes, and that is a concern, however, we haven't been rigorous up until now, so....
My one other thought (besides OM or Calvert) is Bridgeway, because I know they use multiple curricula, we could combine some online classes, etc... For some reason I'm a bit hesitant, not sure why.
Thanks for letting me think out loud, and for your thoughts. I think I will contact OM and see what they say.
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One of mine is like that. I've tried various things, but I often am left feeling that the "fun" stuff I come up with isn't all that educational. It's just some fluffy filler. And it's kinda tiring to put that kinda effort into something that doesn't seem like much in the end.
Although he doesn't complain about all subjects. Mostly math. I do play math games with him often. That helps. But some days it's like dragging an elephant through mud.
I don't really have advice though. My older kid rarely complains about school work.
It's nice to know we're not alone. :001_smile:
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Sounds like a living books approach to science might be called for (maybe with a more engaging text for a spine). There are many lists on here of living science books none of which I have easy access to at the moment. I would also look for hands on work with a professional at a nature center, arboretum, botanic garden, zoo, natural history museum, or land trust.
A few of my favorite living science books.
According to Season by Mrs. William Starr Dana (botany)
The Frog Book by Mary C. Dickerson (herpetology)
The Living Year by Richard Headstrom (natural history)
Winter World or Summer World or Ravens in Winter or Trees in My Forest or anything by Bernd Heinrich (ecology)
Swampwalker's Journal or Year of the Turtle or anything else by David M. Carroll (herpetology)
Discovering Moths or Discovering Amphibians by John Himmelman (entomology)
The Edge of the Sea or anything else by Rachel Carson (marine bio)
Adventures in Nature or anything else by Edwin Way Teale
Life in the Soil by James B. Nardi
Noah's Garden and Planting Noah's Garden by Sara Stein (botany)
Chasing Monarchs or Walking the High Ridge by Robert Michael Pyle (entomology)
Basin and Range by John McPhee (geology)
Also the CD by Elliot Lang entitled A Guide to Night Sounds (this one, unlike all his others, includes narration)
Yes, on my good days with her, those are my thoughts, too. She has such an affinity for it, I'd hate to squash it by having her just do text booky stuff.
Your list is fantastic, btw! Thanks!
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My dd (almost 13) says she "hates" school, and just wants to get it over with. She loves learning certain things on her own, outside of our "school". She knows more about birds, reptiles, and other animals than I ever will, and voraciously reads field guides of all kinds. She is a fantastic photographer, very artistic and creative, as well as a talented pianist. She enjoys reading-what she wants to read, not for "school".
So, I have busted my butt for years trying to come up with interesting, engaging curriculum that she will love, because I want her to love learning. Also, I'm now getting concerned about high school and college, and am thinking I should be challenging her more. But. She is/can be a difficult child, so part of me just wants to have her do Calvert, (or something similar) across the board for the ease and accountability, because if she hates everything anyway, what am I killing myself for??? :banghead:
I need lots of advice, because I've been scouring the boards for info. on distance learning, looking at MP, BJU, Abeka-all things that are totally different from our norm. We've done literature type stuff-MFW, BF, SL unit studies. They never seem to get done, though. She is an average reader, but needs to take her time for comprehension. So, something like SL (which my ds would kill for) is a nightmare for her. When I read aloud, she says she doesn't take it in as well. I'm at a loss, here.
Here is what she's doing now. BF Early Am. HIstory, Intermediate, BF History of the Horse, Apologia Swimming Creatures w/ her own notebooking, Essentials in Writing, MUS, Vocabulary from Classical Roots, piano, drawing lessons, speech class. She does pretty well with the BF (when she stays on task & we have time) as well as Apologia. But, we started Apologia Gen. Science at the beginning of the year with a Co-op and it moved too quickly (with the co-op schedule) and was taking her FOREVER. She totally hated it, and she's always liked Apologia. I have BF Ancients and was thinking of using it for next year, but it's a lot more work than she's done.
Okay, enough background. PLEASE HELP! :001_smile:
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I'm trying to actually use up curriculum that I have (gasp!) instead of buying something new. Anyway, for the rest of this year & into next year I want to use Elemental Science Biology for the Logic Stage and BF History of Science for my dd. The thing is, she's almost 13, so I'm not sure if it's too late. For History of Science, I'd say not, since we have done much like that (physics type stuff).
She's read tons of science books, field guides, etc... and knows a lot about Life Science, and she finished Apologia Flying Creatures. It was super easy for her, but I wanted her to get more into the notebooking & independent work. We borrowed Apol. Gen. Science and she started it, but didn't like it. That was just the first couple of lessons, so I could have made her finish, but I figured we had these others as a possibility.
So, do I have her do the ES Biology & BF combined from now until whenever she finishes next year, or should I try and accelerate the ES somehow? I don't want to kill her love of science for her, but I don't want her to get behind, either.
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Good news, Hewitt is still fully operational! I spoke with someone and she was just lovely & extremely helpful. The reason their online catalog isn't current is that they have eliminated some of the core curriculum-meaning the non-Hewitt stuff that they had previously listed for the grade pkgs. Also, they are adding more of their own curriculum and developing more, it just isn't there yet. I ordered the Lightning Lit. pkg. and am so excited!
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FundaFunda.com - my site - we teach computer programming and photography at present and will add Geography and Spanish next year. Only Spanish will have live classes but there are deadlines and homework is graded and their is support when students need help.
What will the Geography course include? Excited about this!
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I've been on their website and it only has a 2013-14 course catalog available, and many of the links don't work when you click on them. I did call them, but it's difficult to speak to anyone, either the receptionist is "busy" or when you finally get through, you have to leave a message for everyone/anyone. I know they do have a sale going on, so that's why they could be so busy/unavailable, but it makes me nervous, because it seems like a lot of homeschool companies are having problems or are going out of business. I was hoping to utilize their services, not just purchase curriculum alone.
Familiar with Shea Med. Center-or any other Lyme Disease Treatment Centers in AZ?
in The Chat Board
Posted
Thanks, Cat. I'm glad you were able to get the treatment you needed. Dd was tested a few years ago, just the basic test. Negative. We had also taken her to a ped. rhumatologist due to joint pain. They might have tested for Lyme then, too.
I've heard the same thing about Mayo, unfortunately. We also have a wonderful University Hospital near us, and I believe it's the same thing with them. That's why I'm looking elsewhere-anywhere, really. Distance isn't an issue.