greenbeanmama
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Posts posted by greenbeanmama
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Thanks for replying! He greatly prefers the look of button accordions vs. piano. And he doesn't want to limit himself to playing in just a couple of keys with a diatonic, so to him, chromatic seems like the best of both worlds. I've tried explaining that if we can't find enough instructions to help him play, it doesn't matter what key he *could* play in, if he can't learn to play at all. Size is another factor - the chromatic that he has his eye on weighs about 11 pounds. He's not real big for his age (55 inches tall, and not quite 80 pounds), and I just can't see him comfortably playing an 18 or 19 pound instrument. Arguably, some of the Irish buttons are only about seven pounds. I've been trying to convince him that he could start on an Irish button (or at least a diatonic), and if he really wanted to diversify in a few years, we would work something out. My fear, though, is that if he takes the "consolation prize" accordion, he won't be as enthusiastic about playing it.
I will definitely check out the online places you mentioned. We tried several music stores in the larger cities around here (we're in a dinky town), and they were no help whatsoever - one salesperson actually laughed when I asked if they had any accordion books in stock. Well! Alrighty then!
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I've got an eleven-year-old who has wanted to play accordion since he was four. He's been taking lessons on alto sax for about a year (so knows how to read music, at least treble clef), and has picked up harmonica and ukulele on his own. I have no problems getting him to practice (he plays for fun in his free time besides what I require). I am not musically inclined, but what I do know is:
-He does NOT want a piano accordion, definitely wants button style.
-He'd much prefer chromatic over diatonic.
-We have no local resources (within a 90 minute radius).
-What I can find online is almost all for diatonic accordions, usually Irish-style (books, online lessons, etc).Does anyone know of books (in English!), video lessons (other than the few on youtube), or other resources that would be helpful? Thanks!
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Tomie DePaola has a book called Nana Upstairs, Nana Downstairs that deals with the death of his great grandmother. It's definitely appropriate for a four-year-old, and I'd assume the two-year-old would listen but not really follow along much. I would just read it to them, not making any comparisons about future family events. It was actually my youngest's favorite book for months when she was about four.
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Growing up in a small town, yup! Garbage truck was in the parades, all cleaned out and shiny (or as shiny as they could get it). In most small towns, any and everything can be in the parade. If it's a long one, some kids are at the front for something like 4H, and as soon as they finish, they run to their next spot for a sport or local business.
For our heritage days, the parade starts with the street sweepers: children and adults in traditional costumes, with brooms and buckets!
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And here I've wasted so much time tracing and cutting!
But my mom always used waxed paper, not parchment. I use parchment paper all the time, but always use waxed paper for my cake liners.
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My oldest girl had horrible, horrible diaper rash. We too gave up the cloth diapering. She was so sore her bum would bleed just taking the diaper off. At one point she was on three different perscriptions simultaneously.
What helped the most was letting her go diaper free as much as possible. Like, hours at a time. I got pretty good at reading her cues as to when she would need to pee, so we didn't have a ton of accidents. And even then, a happy baby with a healthy bum was worth it.
She potty trained herself around 18 months, I think because she didn't have to wear a diaper. I put her on the potty once when she needed to go, and after that it took about four days for her to be fully trained, daytime and nighttime.
That being said, she *still* gets sore and needs goop for her bum. At age eight, it's a lot less frequent, but it was pretty regular up until she was six or so. She has had several UTI's as well.
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I missed this update but I came looking for the thread.
What does your family doc think is going on?
He said, "This is way above my pay grade", but thought something autoimmune or neuro-degenerative - he didn't want to run any tests, as the other hospital will most likely want to run them on their own machines. He remembered that my sister has MS, which reminded him that we tend to have auto-immune stuff in my family (he's been our family doctor since I was five). In talking to his nurse later in the week, she said they faxed 41 pages to the university hospital. Once I get their parent paperwork in the mail, I can start calling to see if they have an opening any sooner than several weeks out.
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We got in to see our family doctor today. He said he'd fill out the paperwork to refer us to the teaching hospital right away - gave us the option of going to Mayo or Cleveland right away, but said the university hospital is an excellent place to start. We should hear from them in a few days, but at least the ball is rolling.
Sadly, he also said that if I had called our current neurologist, they probably still wouldn't have seen us until June. Yikes, that's a bit scary!
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Agreeing with the others that she needs to be seen asap. Can your primary order a stat mri? I know ours can.
Brain tumor could fit. Tethered cord and/or mitochondrial myopathy might fit as well but you need to rule out others first.
Mito can cause regression and periods or better and then worse times.
Tethered cord was ruled out by MRI.
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What was happening with her immune system before the time when you first noticed symptoms? Any illness or infection? Any antibiotics, medication or vaccines? Any special insect bites? Any changes to her diet?
Has she developed any sensory sensitivities? any sensitivity to noise, touch, bright lights, increased pickiness with food, increased appetite? Increased fear?
Have there been any changes to bowel movements? Any rashes or skin problems? Any new allergies or sensitivities?
Have you checked her for seizures?
Any new night waking?
Has she noticed what is happening to her or expressed anything about it?
She had a 36-hour pukey virus in early December; two days of 103 fever and feeling cruddy in late January. No antibiotics. In the past seven months, she's had vaccines for MMR, TDaP, and polio; these were her first vaccines.
She's got allergies (showed positive to at least two in every category they tested for), and some we can't figure out, so she carries Epi-pens. Mostly she gets very itchy, including lips and tongue, or ends up with a pinprick rash over her body. She gets a daily slather of Cetaphil cream for mild eczema. Winter is usually easier on her, and she hasn't been taking any allergy meds. She does not handle Benadryl well. We've had a some warmer days lately and she has been itching her face more, as well as getting some spots around her mouth and hands that randomly show up. She hasn't had the spots in several months, but just had some show up within the last two weeks.
This child does not usually complain about physical stuff, in part because she does not like going to the doctor. She denies that she is leaking at all. And she is more focused on being stronger and walking better because of physical therapy. She hasn't seemed to notice any issues at school (the ones the teacher pointed out). She has mentioned lately that her stomach has been hurting - either it's so empty it hurts, or she eats and then it's so full it hurts -the amount hasn't really changed though. I'd been chalking that up to her not liking what was offered, but if she wants to munch on carrots or tomatoes later, I let her. She said yesterday that she's been burping all the time.
How do you check a child for seizures? I've been trying to pay attention, but honestly don't know what I'm looking for. She never seems confused or disoriented. She isn't losing consciousness. I've been snuggling her to sleep because she's been asking me to, and all seems normal when she's drifting off. She doesn't wake up needing me at night.
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Just making sure...she is on no new medications, right?
Bc my DD has had some of those symptoms when her seizure meds were too high or she was on meds that just weren't working for her.
No new meds. Zyrtec and Singulair most of the year, but we haven't put her on them yet, as she's not super itchy until spring is in full swing.
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Just skimming what the other ladies wrote...
Does PANDAS make any sense? Has she had strep?
Edited to add: wapiti has posted a lot about PANDAS in the past. Maybe PM her?
This is similar to PANDAS, but it isn’t caused by strep (it’s called PANS)...
http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/
Hugs to you and your daughter. I hope you’re able to find answers soon.
No strep at all. She's only ever been on antibiotics once, for an ear infection as a baby.
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I don't think HSP has a backwards moving cognitive dysfunction does it?
The increasing pigeon toe is odd and I have this problem, especially walking downhill.
Strangely enough - the super tired sounds auto immune neurological, and if so, then that means the sooner it's sorted out, the sooner something like IVIG or antibody therapy might work for her. The pigeon toed gait I do have as well as the cognitive issues with spelling, reversing, etc. that I've never had in my life and, currently, specialists think auto-immune related neurological, so I hope that's somewhat encouraging.
If you look at (and measure) her calves - are the same size? "Dent" in either? Are her reflexes normal - hyper or hypo? The gait - is it because one side is dragging/dropping? Like she lifts one of her hips?
My experience with neurology? Get referred to a university hospital unless you're close to the Cleveland Clinic or a Mayo.
Because, while you may like your neuro, I really think this is not something he can throw a dart at and shrug. Not with auto-immune neurological stuff because there CAN be help and time really is relevant.
The incontinence thing is usually fairly specific to different neuromuscular diseases. I know it can be part of MS and you'd want an MRI. Juvenile MS does exist and I suspect the symptoms are very close to what you are describing?
The physical therapist did a bunch of measurements in December - she didn't say anything about different sized calves (or anything else asymmetrical..I did specifically ask at that point). She has tightness in her dorsal flexion (struggles with lifting her toes and walking on her heels); weakness is greater on the left side of her body.
The physical therapist said the leaking could be due to the general core weakness, which would include the pelvic floor. But her feet are getting so, so much better; you'd think the other issues would improve along with them.
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I would get a second opinion with a different neurologist. Specifically a pediatric neurologist and preferably at a teaching hospital or children's hospital. Be prepared though, wait times can be long (don't cancel other appointments) and you may be on a path that requires many specialists to figure it all out.
When I go into a second opinion, I give the new doctor all the same preliminary info.....but never the other specialist's ideas. For the most part, the 2nd opinions have matched what he 1st specialist has said, but there have a been a few times, that new information and new questions have led us down a different path. I like to write down all the information I have in very brief, bullet format and hand it to the doctor. I write timelines and any testing down. I give it to the doctor at the beginning of the appointment, so I don't have to wait for them to ask specific questions and forget details that may be important.
Before I select a doctor....I also look at any published articles, and read as many bios about them as possible. My daughter has seen 4 different neurologists. They all had different subspecialties. My daughters migraine specialist doesn't treat her POTs issues, and her POTs neurologist doesn't treat the migraine issues without talking to the migraine specialist first *even though migraines are a part of the POTs. We had one more general neurologist who gave general answers and very basic information about migraines in the very beginning, before we switched to a migraine specialist and one other neurologist that handles only specific neuromuscular issues. We were sent to that doctor to rule out something they specialized in.
Do you have a Shriners for Children in your area? I wasn't a huge fan of the neurologist we saw there for my dd, but they are supposed to be great at neuromuscular issues. My daughter's issues weren't in that doctor's specialty and she basically told my daughter "There is something wrong but I don't know what it is, so I can't help you. There is nothing I can do for you, so you don't need to come back". Which may be very true, but it was odd to hear a doctor say so directly and dismissively. (It took another neurologist, a cardiologist and 2 geneticists to finally get a diagnosis LOL so it definitely wasn't a simple issue to diagnose)
Good luck and lots of hugs. It is so hard to have a child where you know something isn't right, but you don't know what is wrong either. (((hugs)))
We've been seeing a neurologist at a chiildren's hospital about 90 minutes away. The other option is a teaching hospital in the other direction, about two hours away. No Shriners near us (5 hours away...doable if necessary, though not my first choice). I am thinking we'll be trying the teaching hospital. I do go into appointments with a list, but I've never just handed it to them - that may save a lot of time!
I can't think of a diagnosis that fits off the top of my head*, but I will back up your feeling that something is actually wrong. And if it's been getting worse then it's quite wrong. Get another neurologist, and another, until you find somebody who will take this seriously. Also a geneticist.
* Actually, I can think of *one*, but it's pretty unlikely: Juvenile Tay-Sachs. It's rare enough that even people who diagnose Tay-Sachs often don't realize it's a possibility, because pretty much everybody is only familiar with the infantile kind. If you and your husband are from one of the three major ethnicities that carry the gene in the US - Ashkenazi, Cajuns, or Irish-Americans - then I'd get that ruled out. Otherwise I'd look at pretty much any other condition. I only think of that particular condition because it's so unlikely. I don't think all the symptoms even fit anyway.
We know very little about one side of my family, as all connection was cut off when they immigrated to the US a few generations ago. The only thing adamantly said was that we were *not* Jewish...with a very Jewish surname. I think we'll add that to the list of things to rule out. Thank you - that certainly wasn't on my radar.
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With super tired and leaking, I'd encourage you to have her blood glucose levels checked. I know that doesn't take into account some of the other concerns on your radar, but those two are red flags for me, and may be a piece of the puzzle or at least another clue.
Actually, we've had that checked several times. The urgency has come and gone in the past, and she has an uncle with type 1 diabetes. Her numbers have always been fine (actually, usually on the lower side of normal). We've also ruled out UTIs when it's been an issue. The leaking bit is new though.
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Has anyone mentioned this: https://en.wikipedia.org/wiki/Hereditary_spastic_paraplegia
That fits closer than what I've been finding. I'll jot that one down - thank you.
Any chance you could get an appointment with your ped to start documenting what going on now? They could order blood work now and even an mri. Plus, they could speed up your appointment time. Spend the weekend gathering evidence, researching symptoms and call the ped Monday or if you think the neurologist will get you in quickly call them.
I've set up an appointment with her regular doctor for March 5th (the earliest they could get us in) - it's our family physician, but he "hears" me better than the neurologist, and I think he'd refer us elsewhere if needed. He is up-to-date with the neurologist's records.
Has she had an EEG?
No. It's never even come up before.
Have you done genetic testing? There are a huge number of genetic disorders that can cause a bunch of random symptoms.
I would push for an MRI though if these are new symptoms. Sometimes kids progress and regress in some areas seemingly at random, but that's a lot of stuff to have start happening all at once.
We've not, but the genetic factor is definitely on my radar. Autoimmune disorders seem to run on one side of the family (MS, Grave's disease, ulcerative colitis, etc), so it wouldn't surprise me if it were something along those lines.
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I’ve been noticing some concerning symptoms in my five-year-old daughter, and am trying to find some answers – or directions to start looking for answers. Hopefully the Hive can help!
Background: She hit all developmental milestones just fine (rolled over at 3.5 months, sat up at 5 months, walked at 11 months). She has always been pretty physical (learned to flip herself over baby gates to climb the stairs at 10 months) and was never afraid to try anything (“Want to see me jump off the kitchen table?!?â€). Somewhere around age 4 or so, I noticed she was starting to walk a bit pigeon-toed. By 4.5, she was extremely pigeon-toed (one foot actually overlapping the other, toes on top of each other when standing still) and she was wearing holes in the tops of her shoes due to dragging her feet. Our doctor sent her to a neurologist. She’s had hip x-rays, MRI of the lower spine, and several other tests – all coming back normal. We started physical therapy. The physical therapist said besides the gait abnormalities, she has definite weakness in her legs and core. My daughter is doing very well with the PT, and her gait has noticeably improved, though it’s still obvious she walks wonky.
What’s concerning me is the number of weird symptoms she seems to be displaying all at once.
--She’s always been a bright, extremely logical child and has had no problems in kindergarten. Her teacher said that now she is struggling in math – with concepts that I know she understood last semester.
--Her speech is a little less clear – she’s replacing “b†with “v†sometimes, “th†and “f†are switched, as are “d†and “tâ€. I know that’s common and normal for this age, but it’s not common or normal for this child.
--She’s been writing more letter reversals; actually more noticeable with her numbers, which never was an issue before.
--For the past few months, she spills her water glass at every single meal.
--She complains of being “super tired†even though I am letting her sleep in as much as possible (getting 10.5 to 11.5 hours of sleep a night, not really sleeping in on weekends when she has a chance) – she is visibly dragging by late afternoon most days. She asks to skip school almost every morning because she’s “too tiredâ€, though she does enjoy kindergarten.
--For my social kid, she does not want to participate in things that she has loved so far, like her weekly dance class.
--She is having issues with “leaking†a little bit (no full-blown accidents, just dampness), and major urgency issues.After ruling out several other things, her neurologist felt that she may have had a perinatal stroke, but didn’t feel the need for an MRI of her brain at the time. I’m not happy with that answer, as it would seem that she should have been having issues all along if the problem happened close to birth, instead of the gait abnormalities showing up at age four. Add in all the other weird stuff, and it’s not fitting at all. We’re not scheduled to see the neurologist again until June, and all of this has cropped up since her last appointment. I’ve been researching possible causes, but I’m not coming up with much: a stroke later in childhood (or a series of TIA strokes), possibly seizures, or maybe some kind of neuromuscular disorder that I haven’t stumbled on yet. Obviously, we’re pushing for the MRI of her brain, but we’re looking into options for a second opinion as well. I feel like there’s a piece of the puzzle that I keep missing and can’t fit it all together.
Anyone have suggestions of where to look for answers?
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I tend to go in after 6-8 weeks. Usually, that's only once a year though, and can take another month or two to clear up. Colds really like me for some reason...
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Some fun "skill" toy - juggling balls, kendama, devil sticks,high-end yoyo, unicycle?
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Artsonia
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These are younger books, but A Year Down Yonder as well as A Long Way From Chicago (by Richard Peck) are both very good, light-hearted reads.
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I start the cold season with the heat at 64, then it creeps up as the cold weather continues - by February, I'm so tired of being cold all the time that it gets up to 67 or 68. We have a drafty old house with some single-pane windows (we cover what we can in plastic, but the antique woodwork gets in the way sometimes). The upstairs is always warmer than downstairs.
I break our "no shoes in the house" rule for winter, as slippers just aren't enough for me - my fake Uggs work fabulously for inside use. I often wear a hat inside, and if I just can't get warm, I put on mittens as well and run laps inside until I get a bit warmer. That's with the long johns and sweatshirt too.
When we go places in the winter and we'll be there for an hour or more, I have to remind my kiddos to take off some layers before we leave. I still remember my oldest (who freezes like his mama) when he was five. It was May and I gently reminded him that it was really time to stop wearing long johns. "But I'm just not quite ready, Mama. I could wear them until it's shorts season, right?"
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I must be in a really weird subculture. The vast majority of names shared here, I know at least one, often several girls/ladies with those names. And not all of them are my grandma's age!
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Anyone use Fast ForWord
in The Learning Challenges Board
Posted
Is anyone familiar with this program? We recently had our daughter tested for learning disabilities, and the results came back as "partially remediated atypical dyslexia". The program Fast ForWord was recommended to us by the testing agency, but the subscription fee is hefty ($150-$400 per month). I haven't had a chance to look online for reviews, but thought I'd ask here as well, Thanks!