Sugarfoot
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Posts posted by Sugarfoot
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Yes, and to be honest, I wouldn't want it any other way. ;)
My DH is a great dad and is very appreciative of what I do. After 15 years, he's finally starting to see the "big" picture. Last year, when oldest DS was finishing his first semester of college, DH asked him what he thought his grades would be. He said he had all As, and DH said, "You have your mother to thank for that." :coolgleamA:
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That's great!!! :hurray:
My older two went through the ATA leadership program and are 2nd degree black belts. They are the best of friends.
Congratulations to your kiddos!
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I'd totally be on board for one structured recess if there were also two unstructured. We didn't have a PE teacher in any of the elementary schools I attended so our regular teacher handled that herself, about twice a week if I recall. Not every day, for sure.
How fortunate you were to have THREE recess sessions a day!
In other reflections, I don't really understand why the kids who got in trouble for talking or not paying attention were kept in at recess. They are the ones who probably needed it the most. But they were kept in and had to put their heads on their desk the whole time.
We really were lucky. And we learned a ton at that school, too. We also had art, recess, and music every week. Music twice, art and recess rotated twice/once, so one week art was twice and PE once, the next week, art once and PE twice. All of those teachers were fantastic.
That was one thing that led to us pulling the little guys after half a year in public school. My then-kindergartener almost never got to do anything at recess. He had to sit on the curb and watch the other kids play. He was no allowed to move. They had a behavior chart that started on green in the morning and the other colors were yellow and red. You could move up if you behaved better later, but Adrian generally felt like once he had been bad, why bother being good. If he was red by lunchtime, and he was at least 4 days a week, he had to sit on the curb for recess. Without being able to run off his energy during recess, he was even worse for the afternoon (elementary - including kindergarten - is 7 hours here). The 1 day a week he was only on yellow, or by some miracle green, by lunchtime, his afternoons went much better. The teacher agreed not getting recess was a problem for him, but it was a school rule and her hands were tied.
I don't understand this either. It seems like common sense went out the window here. :(
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I actually had something similar to this during 3rd grade (in the 70s!) At my elementary school, we had 1 hour for recess, broken up through the day. First through 3rd had three 20 min. recesses, and 4th through 6th had two 30 min. recesses. K was a 1/2 day, so only one 20 min. recess.
In third grade, the rule was that everyone play kickball during the first recess. It was highly organized and refereed by the teachers. I'm really not sure what the motivation was. That year was interesting in many ways. It was a typical, progressive 1970's setup--a giant open space classroom with rolling divider things turning it into 3 "pods." Academically, those 3 teachers were some of the toughest I ever had, and every minute of our day was structured from arrival to the final bell, and even then they walked us to the doors and made sure everyone behaved perfectly while walking through the building and onto the buses or into the neighborhoods.
Most of us had been together for a few years by that point, but that year, we had very few problems among us. I don't know what it was, but there was just this expectation that everyone get along, be nice, include everyone, and behave. It definitely went beyond organized kickball, lol, but that was a HUGE deal to us on the first day. "What?! We HAVE to play the same game together for one whole recess?!" But we did, and it was fine.
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I'm sorry. My MIL was just diagnosed with uterine cancer in May. We were hoping for a surgery- only fix for her, but it had spread and is now stage 4. She's doing chemo and feels pretty good. Having said that, my advice is not to wait too long to do the surgery. If you want a 2nd opinion, do it as soon as you can and then move forward.
Praying for a good outcome for you.
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I am homozygous on C677T. (I think that's how it's written ) ;) My lab work always showed I was near anemic, my vitamin D levels were terrible, I have Hashimoto's and migraines. I feel much better on supplements. (I take A LOT)
My testing also showed I have an inability to process cholesterol meds, so I know to avoid those in the future.
Someone mentioned tongue tie, and I really don't know what that is, but I carry the gene mutation for it as well.
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I'm reading the book right now, too. I started it once before, but didn't finish it. I'm really not super cluttered and we have plenty of room, but I get pretty tired of constantly picking up "stuff." Plus I love to read about organization. :coolgleamA:
Those of you that fold shirts the way she suggests-- you fold clothes at a table?
I've been folding this way for years. I think I first learned in a book called The Beverly Hills Organizer. I loved that one! I have a big table near my main washer and dryer. My kids have big drawers in their closets full of t-shirts lined up on edge. It's easy to see which one they want, and they're only pulling out one at a time.
Anyone use this method of folding shirts? Of course doing it this way would cut down on the time you have for watching your favorite shows on Netflix...
I've tried this, but if you leave you're shirts flat, there's a sleeve hanging out in the back. You can fold it in half or thirds vertically after this though, and then fold it up further to stack it on edge. It's not the KonMari way exactly, but it will work.
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The specialized tests dd had were a macroprolactin test and a prolactin dilution test.
Prolactin levels can also be high if the tumor puts pressure on the pituitary stalk because the pituitary can't get the right feedback. So the first endo thought that would explain dd's high levels. Then the neuro-endo didn't agree with him, though. She didn't think there was any pressure on the stalk. The first endo was basing his opinion on the report but the neuro-endo looked at the images herself. I will be interesting to see what the report from the new MRI says because that will be written by a true brain specialist.
The first endo ordered an alpha subunit test which, I think, is supposed to be able to pick up some non-functioning pituitary adenomas.
The doctor who ordered the repeat cortisol test is a neuro-endocrinologist at a pituitary center that's part of a major university health system. She has a special interest in Cushings, too.
UPDATE: The MRI looks good. There's been no change in the six months since the last MRI! The way he used to describe it seemed very clear that he does not think dd has a tumor, and he's identifying it as a cyst. Her pituitary, however, is enlarged, and the neuro-endocrinologist's nurse contacted me this morning to make sure the hormone tests have been done. So the investigation isn't over, but I'd say the worst has been ruled out. I'm relieved about that, and I hope the results of the testing we've done will be helpful in figuring out what's going on.
Thanks for all of this information. I have been so confused about all of the test results that we get and the way they're interpreted. At one point, DS's prolactin level was so high they were sure it was a lab error and had it re-run. It came back even higher. Then 3 months later it was "normal." Sometimes it seems as though no one really understands everything that goes on in this part of the brain. The cyst conclusion is interesting. DS's doctors say they can't tell whether his is fluid-filled or solid. I wonder how something that is causing so many symptoms can be called "non-functioning." I understand it's based on specific hormone levels on labs only, but still.....
I'm so glad you're getting answers! As an aside, there's a woman in our church who was diagnosed with a prolactinoma at the same age your DD is. She said her headaches were unbearable.
:grouphug: :grouphug: :grouphug:
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Saliva tests done over the weekend.
MRI done this morning.
One 24 hour urine to go!
The follow up is not until the end of the month. That's a long wait with the CD of the MRI in my medical folder.
Is your DD sedated for the MRI? My DS has to be sedated and then has a really hard time coming out of it. He's become pretty fearful of doing it again based on his memories of the previous times. Good luck with the 24-hour test.
My DS threw up tonight after he went to sleep. :(
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(((Tiramisu))) and (((Sugarfoot))) Praying for you and your children. Lord have mercy.
Thank you!
I was basically told the same thing. Go to a neuro-endocrinologist to get the tests and then be in touch again if you get a diagnosis. I had a neurosurgeon look at the medical records and agreed that some symptoms would fit for Cushing's. He also looked at the MRI and told me exactly where the tumor was and its size. That alone was reassuring.
I can't remember what I mentioned up-thread, but we got the MRI locally. The endocrinologist that ordered it first suggested Cushings after he felt the results did not indicate a prolactinoma, and given my dd's symptoms. He is part of fairly well-regarded local hospital system, but he felt, considering my dd's age and that this could affect her long-term, that we should go to a better "institution" for her care. So I made an appointment with the university hospital system which is the most highly regarded in our region for brain surgery.
It is true that they don't do brain surgery unless they really have to. When my dd's tumor was discovered, a priest friend put us in touch with another family who had a child with a brain tumor. They watched her for several years and there were no issues. Eventually, the dd started having language problems and they had to get the surgery. By then she was physically grown and did extremely well with the surgery and recovery. In her case, they did not go through the nose. I'm sure there are even more who never experience a change and never need surgery. I've read again and again--and the neurosurgeon said the same thing--that a lot of people have pituitary tumors that don't cause problems and they never know it. Of course, when we have kids with health problems, it's quite a bit scarier.
So far the first endocrinologist ordered a few specialized prolactin tests that would rule out falsely high and falsely low prolactin levels. The second endocrinologist, who is part of a pituitary center, ordered many thyroid tests, many PCOS related tests, and all the pituitary hormones. We had to do the following cortisol testing: three consecutive late-night saliva tests, two 24 hour urine tests one week apart, and an 8 am cortisol test. We did all the tests except the 8 am blood draw in February-March and now we're doing them all again. The doctor said cortisol is released in pulses so you can get normal levels on tests, but continued testing will reveal very high levels if it's really Cushings.
I can't remember if I told you that I've read neurosurgeons are very particular where the MRI is done. And our neuro-endocrinologist told us where and when to get the next MRI. When I scheduled, they told me it's because a certain doctor is duty reading the MRIs as they are being done.
This is very interesting. My DS has done the saliva test twice, but never a 3-night series. He's done the 24-hour urinalysis twice. I need to ask about the further prolactin testing, especially since it was so high before. I have this feeling that he may be "cycling" with his cortisol. I know this is really hard to catch, and I'd like to do 30 days of saliva testing in a row to see what happens. It sounds like your Dr. is more open to the possibilities than ours. I'm going to insist on doing the labs more than once every few months.
I hope you get helpful answers soon.
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Praying for your son, Gina. :grouphug:
You must be so worried! :(
Thank you, yes, it's been one of those things that is so worrisome I wake up in the middle of the night thinking about it. They can't tell whether it's a solid mass or fluid-filled, so I have this crazy fear that it'll "burst" in the middle of the night. I sort of wish they wouldn't have even mentioned that unlikely possibility.
Will be keeping your family in my prayers too. When do you find out more info?
We will go back to see his doctors in September. He'll have another MRI and more labs. His labs have to be WAY off for a diagnosis of Cushing's to be given. It's frustrating, because I feel like that's all they look at. It's like the proverbial missing the forest for the trees. Thank you for your prayers!
Oh, Gina, I will pray for your family. We can support each other in this. :grouphug: :grouphug: :grouphug:
I've been on some support forums for Cushing's and the like, and I haven't heard of many cases where people who have had surgery need hormone replacement for the rest of their lives. It's always possible but it's unlikely, so try not to worry about that now. The pituitary can take a year or more to recover and start producing hormones, but it's function usually comes back.
I've heard that with Cushing's the tumors are tricky to remove because of their consistency and how they grow. That makes it especially important to choose a Cushing's experienced surgeon to get it all out and preserve the pituitary. There are only a handful of recommended surgeons in the country. The most famous ones I've hear of are a Dr. S at Massachusetts General Hospital, a Dr. J in Pittsburg, another one in Pittsburg at UPMC, Dr. McC at MC Anderson in Texas, Dr. O at UVA. There are others, too, on the West Coast, for example, but since I'm in the Northeast, I haven't paid as much attention. I haven't heard Mayo mentioned from what I remember. You can find lists at the Pituitary Network website and also at the Cushings-help website.
Please keep in touch!!!!
Thank you! I was so shocked to see your post yesterday. I haven't met anyone else who has gone through this. I did contact a surgeon on the west coast who specializes in this sort of thing, but he really only does surgery, so his doctors would have to agree that is what is needed. Right now they are saying it's to be avoided in any way possible. I'm really not so sure that's the way to go, but they tell us that no one does surgery without a specific set of labs, and right now his aren't far enough "off." It's so frustrating to see him suffer and change so much and have them say there's nothing to be done until he's worse?
I would love to hear about your experiences so far and how the doctors are proceeding with your daughter. I feel like we need a second opinion, but I don't really know where to take him. We're in the middle of the country, so traveling in either direction is fine for us. You can PM me if that's easier.
I knew something was wrong and insisted on an MRI. We were told that pituitary tumors are so rare in children that it couldn't possibly be that. He was also throwing up in the middle of the night, so they agreed to do it, and there it was. He looks so much like the little boys in the "before and after" Cushing's photos. It's shocking.
The surgeon there said that at his age his nasal passages are so small that damage to the surrounding brain tissue is almost guaranteed. That scares me, but yet it scares me to think of him going on forever like this.
I'm so sorry you're going through this, too.
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We are going through the exact same thing with my youngest. We took him to Mayo a year ago, and his treatment is ongoing. His first symptom was weight gain. In 9 months he went from the 10 percentile to over the 100th. It's shocking and frustrating. We've done all the testing and his hormones aren't far enough off to diagnose Cushing's yet he has so many symptoms at this point. At one point his prolactin level was super high, but then it went down again the next time we did labs.
His MRIs show a 5mm by 9mm adenoma. We had a consult with the neurosurgeon who said that he's too small right now for the surgery to be safe, but if it ends up to be Cushing's he'll have to have it. Apparently he would then need hormone replacement for the rest of his life. That scares me.
I will pray for your daughter, her doctors and your family. Please keep us in your prayers as well.
:grouphug: :grouphug: :grouphug:
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I'm sorry. You've been through so much. I'll keep praying for your family. May the Lord give you peace and comfort.
:grouphug: :grouphug: :grouphug:
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Praying for your son, your family, and all those caring for him.
:grouphug: :grouphug: :grouphug:
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I painted the door between the garage and the mudroom black. It's so pretty, but oh, my gosh, the dirt! I have to wipe it down constantly. Every speck of dust shows.
I painted the walk-out door into the garage a dark charcoal gray. It looks great and hides dirt so much better than the black one.
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Dd's friend with lupus is also on a BP med and I was curious about that. Is it prescribed to prevent heart issues?
I'm honestly not completely sure, but it seems to be the go-to combo for her type of rheumatoid/autoimmune issues.
She's on a very small dose.
We just got home from DisneyWorld and a cruise. DD only requested that we slow down 2-3 times on this trip. That's a major improvement over the last few years! She did take Aleve before bed. She also was able to enjoy the sunlight on the cruise and beach without getting a rash. This was the first time for that since she was 12!
The Plaquenil has caused a bit of heartburn. She had that a little bit before she started taking it, but I think it's a bit worse now. Overall, though, she's really benefitted from it.
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DD17 has been on this plus a low-dose BP med for about 2 years. It's definitely helped her. We do the full eye exams--I think the visual field test is done every 6 mos.? I can't remember.
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Since you mentioned it's the attitude he likes, I have to second Baby, I'm a Star by Prince, one of my 80's crushes. :wub:
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I love Steel Magnolias, too. It always gets to me.
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I loved that movie, but yes--crying.
Here's a funny story about The Notebook:
My DH and DS were driving on a church ski trip, and the other kids assigned to their car were 3 girls. They were VERY talkative, lol, on the way there. At one point on the trip, my DH and DS visited a Barnes and Noble. Guess what my DS bought? The Notebook on DVD for the girls to watch on the way home. :laugh:
They were so excited they all hugged him. :lol: The ride home was much quieter.
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I read the first WTM book when my oldest was almost 5. Someone IRL showed it to me, and I knew immediately it would be the most important book of our homeschool journey.
I remember finding the old boards and being thrilled that there were people out there discussing grammar and how to teach Latin. I only read back then--my kids were so young.
I've learned so much here!
I haven't seen JenniferinMI or Ibbygirl around lately. I'm terrible at remembering names, but I remember details about people--someone moved to Malaysia and adopted a daughter. Someone else was remodeling their kitchen and their neighbor cut down their hedge.
Something will happen in my life and it will immediately make me think of someone here. Happens all the time.
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We moved from KC to SC and I have to say that the lack of burnt ends in SC is a travesty. I realize burnt ends are a specialty of KC BBQ but that is no reason everyone else should not have them as well. :( :( :(
I grew up in KC, and whenever we travel, I'm shocked every single time when burnt ends aren't on the menu. :lol:
A friend and I had Gates for lunch every Friday for years because it was close to our college campus. KC Masterpiece was my favorite, but they're closed now. :confused1:
Even now, living a couple of hours away, we've managed to have Jack Stack twice and Arthur Bryant's once in the last month. :coolgleamA:
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My little guy is younger, but when we travel to Rochester, we take him to the Mall of America for a break from the Dr. visits. He loves the Lego store, the amusement park, and, of course wants dinner at Rainforest Cafe. That location still put a real sparkler in our Volcano!
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Well, I admit to being pretty high maintenance. Gosh, I don't even want to type it all out. Let's just say, you're not alone. :coolgleamA:
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I'm so tired of the sound of kids' TV programs.
in The Chat Board
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This is me, too, right down to the PBS. Maybe that's the difference. I actually look forward to Martha Speaks. :)