sweet2ndchance
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Posts posted by sweet2ndchance
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UPDATE - So I had asked my doctor some questions and she was able to get back with me today. According to her, I do have Ehlers-Danlos because I fit all the diagnostic criteria and the genetics appointment isn't diagnostic, it is to try an possibly pinpoint which type and find out if there is vascular involvement. Sooo... is this how one is normally diagnosed with Ehlers-Danlos? Just the Beighton tests in the dr's office and the questions? I am still going to go to the geneticist in July, or sooner if they can get me in sooner,. It just seems so.... I don't know, odd maybe?... to be told you have a debilitating condition, and you've had it all your life, after spending 20 minutes with a doctor that you have been seeing for almost the past decade. Granted, due to circumstances, I tend to hold back and not talk about my pain and so much of it I am just now learning that I'm not a whiner as I've been told all my life by multiple people, I actually am in an abnormal amount of pain....
My doctor is sending me to a genetics specialist this summer (first available appointment was in July, not surprising to me, but I am on the cancellation list). I'm suppose to be tested for genetic markers for EDS. I've already filled out their family history paperwork and turned it in. One of the questions asked if I had any questions and I couldn't think of any. What should I ask a genetic specialist? I have no idea. I tried google but all the information seemed to be aimed toward expectant parents. I'm not expecting lol. I really don't know what a geneticist can and cannot answer as this is one medical specialty I've never had any experience with. What does a genetics appointment for a middle aged woman who is not expecting even look like? Thanks in advance for any insight or tips anyone can give.
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I have done similar and everyone survived. Just keep it covered to keep anything weird from finding its way in unexpectedly. (dust, hair, kid's fingers... you know just the usual lol)
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Having had experience with meningitis, I would watch him but not take him in at this point.
As long as the fever is coming down with tylenol alone, I wouldn't worry too much and just watch.
If you are having to layer tylenol and ibuprophen to bring it down at all, I would take him in to urgent care or the doctor.
If it continues to jump back up to 104-ish any time the medicines wear off for a full 36 hours or more, I would take him in to the doctor or urgent care.
If neither tylenol nor ibuprophen are working to bring it down, even when layering them, I would take him to the ER.
If he starts complaining of pain at the slightest touch anywhere on his body, I would go to the ER as soon as possible.
That's how I would triage the situation at least if it were my child. YMMV
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I've tried Vicks, every type of vinegar, bleach, removing the nails, tea tree oil, eucalyptus oil, peppermint oil, oregano oil, fungal nail polish (which every one of them say they are for treating fungal nails but that they can't cure fungal nails....) antifungal creams and soaks...
I'm glad to hear that someone has had success with Hibiclens. Dh had surgery last October and I noticed that the bottle said it was effective as an antifungal. I figured the worst it could do is not work so I started washing my feet with it..... It does seem to be helping as I am seeing some areas that seem to be growing back healthy nail. I keep trimming the nails back as far as I can and then in the shower after the remaining nail is soft and wet, I wash them with the Hibiclens and let it sit on there for few minutes before rinsing. Then I put antifungal cream on them before I put shoe and socks on.
I'm hoping I'm not just imagining things because it is only a quarter inch or so of clean growth so far. But fingers crossed because this is the first thing that has ever shown any improvement for me.
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I can't remember what is in Epsilon either but I wouldn't make any plans for high school based on struggle with a concept in eighth grade. I know you probably aren't basing anything on this one thing but probably a trail of math issues since she was young. But kids can make some amazing unexpected conceptual leaps, even kids who profess to hate math.
That said, when I was in high school the non-college bound math track was Algebra I or Pre-Algebra, Geometry and Consumer Math. I would consider these to be the bare minimum math requirements for any high schooler regardless of post high school plans.
Even if she does some day decide to pursue college education, she will have the chance to take remedial math courses to get up to speed for college math requirements. She might even find it easier to deal with when she is a little older and has had some time to see where math is used in real life.
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Home'scool, I also deal with a narcissistic ex that I had to go through mediation with except I found out he was going to the mediator between our sessions and making deals that I had no idea about until the next session. He would take our kids to the mediator when he had his parenting time but the mediator refused to allow me to bring the kids to her on my parenting time to see if their opinions on things were different depending on which parent brought them. Which is something that is mentioned in the state guidelines as a best practice for mediation cases with children involved and when I brought it up that not only should I be told by my ex or her that they have an appointment to talk to her instead of being told by the children after the fact, she should also be seeing the children on my parenting time to get the full picture of what the children are like when they are in both of our care as that is the state's best practice guideline. She told me that the guidelines are just guidelines and she doesn't have to follow them.... She also insisted that I was being a bad co-parent because I refused to write him a detailed weekly report on the kids every Friday so he could be "involved" with his preteen and teenage children.... but when she told me to outline what I would want when I was the non-residential parent, I told her I wanted exactly what he has and these weekly reports that he seems to think are so vital to him being involved with his children. She told me that I was asking too much of him because he has a full time job.... so did I at that time AND I was going to school to get a better job AND I was raising 5 kids basically on my own because he didn't even take his parenting time 60% of the time and I had the documentation to prove it. But then I was bringing up the past and I needed to be willing to compromise for less time, none of the discounts on child support payments that he had (despite the fact that he makes many times more than I did at the time) and no contact at all on his parenting time .... and the court let this go on for 5 years after the divorce before I put an end to it for the children's sake. Family court is no place for children in any capacity.
Yes, ex was throwing money and names of powerful people he knew every which direction to get the outcome he did. He even paid off my lawyer to be a wallflower and constantly tell me that she couldn't interfere with the mediation process but his lawyer was also constantly talking to the mediator and I have the records of all of that as well. I understand the "hollow inside" feeling all too well. His newest passion is to manipulate our adult children by trying to buy their allegiance to him any time he gets wind of them having talked to me. We are nearly ten years post divorce now. I have been in therapy and on a variety of mental health medications because of his never ending shenanigans for most of these years post divorce. I thought when the children were grown and I grey rocked him into oblivion, he might lose interest in making me miserable but apparently he still says with passion that I have to pay for the embarrassment I caused him by leaving him and "forcing" him to start the divorce process against me... oh, and the restraining order I have against him that I obviously paid someone, in his twisted opinion, to serve him at work so that I made him look like the bad one in our relationship.... I won't bore you with further details but I just wanted you to know that you aren't alone in this. I have found that very few people truly understand what it is like, physically, mentally and emotionally, to deal with this level of crazy for years on end. Yes, there were signs in 20/20 hindsight but, now, it just is what it is and I just try to survive it.
I don't tend to share much of my story publicly because I still really struggle with a lot of it and when I do, I usually only share bits and pieces. If you ever need to talk to someone who completely gets what it is like, you are welcome to pm me anytime. (((((hugs)))))
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2 hours ago, Tanaqui said:
Instead I'd advise no more than HALF a pill, preferably every OTHER day. I'm still cautious about taking zyrtec after my bout of really really bad withdrawal hives, but I will concede that it works very well when I need it.
Hmmm... interesting, I have not heard of this. Zyrtec is actually what brought my random hives attacks under control. I've not been off it more than a few days since starting it so I don't guess I've dealt with withdrawls from it but definitely something to be on the look out for. Thanks for mentioning it :-) I've had to take antihistamines to be at all functional since I was a very young child (I can remember taking allergy pills as young as age 4) so a once, maybe twice during allergy season, daily pill that actually works is a dream come true for me.
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Oh and good gravy change that filter more often, lol! Not only will it reduce air borne allergens in your home if you get a good one, not one you can see through, it will save wear and tear on your HVAC unit. Every 3 months would be an improvement. Changing monthly would be ideal. Hardfloors rather than carpet is also better for allergy suffers. We only have one room left in the house that needs the carpet ripped out so we can put down plank flooring. 🙂
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You will need to talk to a doctor but my doctor has told me I can take more than the standard dose on most antihistamines and like some one else said I can layer them, or take two different ones together especially when I'm dealing with hives but also when my once daily allergy pill doesn't seem to be cutting it. Everyone is different. For me, it was Claritin that didn't do a thing. So let your husband know he may need to try a few different ones and talk to a doctor about dosing and layering to find a med or combination of meds that work for him.
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I grew up in Glendale/Peoria area! :-D
Unfortunately, I haven't been there in years but any time I go back to Phoenix I have to have a chimichanga from Macayo's lol. They take reservations and last time I was there meals were around your price range.
I wish I could go with you. I really miss Phoenix. It will always be "home" for me. :-)
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Sudafed type medications dry my head out but histamine blockers don't have that effect at all. Can he take antihistamines like Benedryl or Zyrtec? They work by blocking your immune system from releasing as much histamines which for some people (like me and it sounds like your dh too) their immune system goes into overdrive during allergy season. I take Zyrtec daily year round for hayfever type allergies and because I seem to randomly break out in hives with no identifiable cause. I can take up to two a day according to my allergist. I've never even had it suggested to me by my allergist that we do allergy shots. Hopefully someone else can help there.
I've never heard of anyone getting the dried out head side effect from antihistamines so you might urge him to try a different kind of allergy medicine. I use a generic that I can get 300 pills (that most people just take one a day) for $15.
ETA: I got distracted and forgot to say, I also can't do nasal sprays. They seem to make it worse not better. And the worse in winter doesn't surprise me. Have you had your HVAC system cleaned recently? Do you change the filters religiously and use allergy quality filters? Forced hot air systems are terrible for allergy sufferers. We are slowly converting our house to radiant heat because I can't handle forced hot air and all the dust and dirt they stir up.
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Movie theaters are expensive and an assault on the senses (or at least for me they are). Perhaps one half of the couple felt this way too and the compromise was to park in a public place (where hanky panky is more likely to be noticed and possibly reported which may have eased the parents' mind a little) and watch a movie in the car.
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I believe it was one of the Australian posters on this board that mentioned that in Australia it is a normal and accepted part of childhood to get a piece of worming chocolate, I think it was once or twice a year. Hopefully one of them will chime in to this thread with more specifics on how they do it. I just bookmarked the Amazon link to it in case we ever needed it. lol Sorry about your predicament. I hope everyone gets cleared up soon.
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If you get two temperature readings within an hour of over 102.5 for child under 3yo, my doctor wants you to go to the ER or do a walk in if the office is open.
Any child who has two readings of 104, my doctor wants you to take them to the ER immediately.
A low grade fever is normal after vaccines are given. 103.5 is not a low grade fever. I would call the doctor again and/or go to the ER if it were my child. We had several bad reactions including 104 - 105 degree fevers that became meningitis which is a rare but possible complication from vaccines. Just because it is rare doesn't mean it never happens. If the doctor is being too blase about your child's condition, no matter if they are from vaccines or not, go to the ER or an urgent care if you are afraid the ER visit will deem the visit unwarranted if it is just a normal reaction for your child. Better safe than sorry in my opinion when the child is too young to tell you what is going on with their body.
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My oldest daughter did the same thing when she went to public school. I knew she was bright but I never really considered her gifted because she spent a lot of time trying to get out of doing any work at all. We didn't live in a state that required testing of any kind for homeschoolers which is why she had not had any kind of testing before starting public school in 5th grade. I knew she was capable of at least grade level appropriate work, but she tested into the gifted math track. She was the 99th percentile across the board in all math categories. At home, she did what she had to do in math just to be done with it and never showed any particular interest in doing the math. She just wanted to get it done and so that she could do what she wanted to do. She didn't struggle but she didn't seem unchallenged either so I never thought to push her any harder when she was homeschooled. She did fine in accelerated/gifted math track from middle school forward and took dual enrollment math and English classes in high school.
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I understand your dilemma. I had a workbook lover too. She asked for more workbooks for her 6th birthday. And yes, I indulged her and she did get some workbooks for her birthday among other things lol.
When she was between the ages of 3 and 5, I let her do workbooks and worksheets to her heart's delight. She pulled out her "school" to do with the other kids but that didn't change how I taught her except when I had the choice to get her a workbook, I got her one. Or printed her worksheets off the internet. She was also my lapbook lover so you might see if your son likes making lapbooks or interactive notebooks. I didn't turn everything into a workbook for her though. We still did hands on lessons and other styles of learning. But I see nothing wrong with letting a workbook lover do what they love.
Doing workbooks doesn't have to be mindless drivel. It can be a springboard to more interactive learning or a great way to review skills and keep them fresh. As long as you aren't expecting the workbook to do the teaching for you, they can be a wonderful tool even if all they are doing is helping your 4yo feel included.
We tried TGTB kindergarten for a while. I'm not sure I would call it a workbook per se... yes it is in the form of a workbook, but it is more than a workbook. If you think of School Zone and ETC as workbooks, TGTB is a little different. You aren't just filling in blanks and coloring pictures and matching things like you do in regular workbooks. A lot of the pages require little to no writing at all from the student. It's more like an interactive lesson plan where all the activities are there in the workbook and most writing that the child does is done in there too but it's not really what I would call a regular workbook. My current first grader hated the word ladders even though I tweaked the activity when one of the sight words on the ladder for the day was phonetic and had him sound it out. I think it was an every other day activity. If you are not a fan of sight words, you are either going to have to tweak or skip it if you want to do TGTB.
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Lots of allergies here. Of course you should talk to a doctor and an allergist and quite possibly an dermatologist but I would suspect some kind of allergy, could be deodorant, soap of some kind, fabric softener or any number of things. It doesn't have to be a change in any of these for an allergy to form. Sometimes allergies can suddenly appear from a product you have used for many years. It could be a slight change in the formulation of the product that didn't agree with you or your immune system overreacting for some reason. My allergist also has me on daily Zyrtec but I can also take Benedryl in addition to the daily Zyrtec and one additional dose of Zyrtec per day for allergies that breakthrough. If none of that helps, he wants me to come in. If you are having active allergy problems, allergists can usually work you in pretty quickly, even if you are a new patient.
If you are absolutely positive that it isn't an allergy, my next thought as other's mentioned would be fungal skin infection. It can look a lot like an allergic reaction but harder to make it go away. There are lots of different anti-fungal creams with different main ingredients. The creams with the main ingredient tolnaftate have worked the best for us. We have also started cleaning the affected area with chlorhexadine based surgical scrub like Hibiclens. You can buy it in most pharmacies or big box stores with a pharmacy. It seems expensive but a little goes a long long way. When a fungal infection is really red and angry, we wash it daily with chlorhexadine soap and then apply the tolnaftate cream. Once it starts going away, we back down the chlorhexadine wash to once a week but keep doing the cream daily. It really seems to help. Especially with the itchiness. The thing about fungal infections though it that it can take a long long time for them to completely go away. Like weeks and sometimes months to eradicate the fungus completely. So we keep it clean and medicated until the skin is completely clear of the rash and then we usually do a couple of days more with the cream even after it seems to be gone.
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16 minutes ago, happysmileylady said:
every single tv was plugged in
Yeah see, I've never seen that around here. The TVs are never plugged in or anything on the shelf but you can ask them to plug it in at the checkout to verify that it works or not. I had never seen the coding system either until we moved into this area (south central US) but it really is helpful and like I said people around here will buy a broken item if it is priced cheap enough. They may only want it for parts.
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5 minutes ago, HollyDay said:
I looked at bento box but I want it to keep cold things cold and hot things hot.
You mean like an insulated bento box?
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2 minutes ago, happysmileylady said:
With electronics in particular, selling or offering for free on CL or other selling sites/apps is probably better than donating anyway. Goodwill and thrift stores are not likely to be able to sell broken tvs, monitors, etc, and are likely to trash them. But, people who are willing to fix stuff up know this and will be looking for that stuff on the selling sites. We once sold a broken 50in big screen for $50. We knew someone could fix it, but we couldn't. And we also knew Goodwill wasn't going to fix it or be able to sell it broken.
Not necessarily. Goodwill and other thrift store around here put an orange stick on electronics that work perfectly, a yellow sticker on electronics that mostly work but maybe a light or something on it doesn't work that doesn't affect the rest of it working and a red sticker on electronics that did not work at all when they tested it. The red sticker items are usually $5 or less. We have bought them before when it was an item that we knew dh could fix it and we could make a profit on the item. Or if it had a piece that he needed to scavenge that wasn't likely to be the part that was broken. Maybe that's just a thing they do around here but it's not uncommon to see red sticker items around here in thrift stores meaning that they tested it and it didn't work. And they do sell around here for $5 or less.
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Something like a bento box maybe?
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5 minutes ago, Ottakee said:
donate the good, usable stuff,
Make sure you don't make the "good, usable stuff" category too narrow. Dh and I both have dual monitor setups on our computers because we were able to find what other people considered to be "broken" monitors. Dh was able to replace a few capacitors and they work like new, so he is always looking for "broken" electronics he can either fix or scavenge for parts to fix other electronics.
We have purchased broken or heavily damage furniture and used to to make reclaimed furniture. We have also purchased various things that would not function for their intended use but work perfectly for a reclaimed project we have in mind. For example we have a couple of old VHS tape organizers that we use for storing craft supplies.
Our area has a Spring Clean-up week where you can put anything on the curb in the city limits and the city trash will take it no matter what. Dh and I, along with a lot of other people around here, drive around during this week looking for stuff that people put out that might not be the prettiest, or may need some cleaning up but we can use it. I've gotten a lot of planting containers that were chipped or broken but still completely usable during Spring Clean-Up week
Of course there are some things that are just plain trash but if you are unsure about whether or not someone else could use the item, even if not for its intended purpose, put it out on your curb or near the road somewhere with a sign that says "free" or put an curb alert ad on Craigslist or some other platform in your area. Someone might take it. Your trash might be someone else's treasure.
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We got ours from either Carolina Biological or Home Science Tools, and I could swear that I got a package of like 8- 10 of just the pellets because I had a group of kids doing it. We did owl pellet dissection several times when my big kids were little. Some of their neighborhood public schooled friends usually joined us. I usually had enough for each kid to have one and I want to say it was around $15 - $20. I can't find that package anymore but the activity was always a huge hit with kids over 7 or 8 years old. I remember doing it in public school in 3rd grade.
I have a homeschool mom friend whose husband is a ranger in a national park. They always hoped that he would find an owl pellet while he was at work since one of the animals he frequently ran into was owls. But, he never seemed to come across any so she ended up ordering them for their dd to dissect when she was in elementary school. Finally, when their dd was a senior in high school I believe (and still homeschooled), he went out to his truck one morning to go to work and found an owl pellet on the hood, lol. Yes, the dd did dissect the pellet after they heat treated it lol.
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I have one kid who never looks sick at all but tests absolutely positive for strep. The only way to tell that he has strep is that he has a borderline fever of around 100 and looks glassy eyed. Other than that he's running around and playing and says he feels fine. But if we take him to the doctor with just a borderline temp and glassy eyes, they look at us like we are nuts for wanting to test him for strep but he has it every time we get him tested with those symptoms. So yes, you can have strep without the usual symptoms and vomiting is actually a pretty common symptom of strep in my experience. So, yeah, if you are still feeling a bit yucky, I would go to your PCP or even just a walk in clinic and explain that you know you have been exposed and have had the same symptoms and you want a strep test. It's a pretty quick and not terribly expensive test and a round of antibiotics should clear it right up rather than being miserable on and off for a month while your body fights it off without any help. Plus, you run the risk of continuing to pass the germs around and reinfecting your dd's family and others.
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What to expect at a first genetics appointment? - Update
in The Chat Board
Posted
Oh, I have the date and time and everything lol. I just didn't post them for security sake. ;-) That's exactly what I'm wanting to do is make a list to take with me, but I realized that I really have no idea what to ask a geneticist as I've never been to one before for any reason.
The receptionist who called me to make the appointment told me that the doctor only sees two EDS patients a week, hence the long wait. But I was expecting a long wait, This hospital is the largest in the area, a university hospital with many specialists. It's not uncommon to wait six months or more for an appointment in any of their clinics. It sucks to have to wait but dh just had brain surgery at this same hospital last year and we really liked how the whole thing was handled and how caring and accommodating everyone was for us. We're hoping that it will remain the same even though I'm going to a completely different dept.
As for the bolded, I have no idea lol. In my immediate area, I can say no with 98% confidence for anywhere within a 90 minute drive. The hospital I'm being sent to is 3 1/2 hours away because they are the closest large hospital with a variety of specialists. I'm thinking that mine will also fall under the category of mild. I definitely meet all the needed criteria for diagnosis that I have found online. I just brought it up with my doctor last week since I met so many of the criteria based on my research, showed her where I could why I met it like the Beighton tests and she suggested a referral to the genetics clinic at the university hospital because she wants to know if I have heart and lung involvement so she knows if I need to be watched for those problems. Fortunately, I'm not really worried about it. For me, it's more of a relief that the joint pain and issues I've had since childhood might actually have a legitimate reason for hurting. Reading about EDS has been more of an "ahh, now I know why that happens" or "I had no idea that everyone couldn't do that" than a scary thing for me.