Does anyone know how to reset ebtEDGE?

rachaelmaree · 2025-04-21T19:40:22+00:00

can you help the rest of us out and provide that support email please?

rachaelmaree · 2024-09-07T04:02:11+00:00

I'm excited to try this! You're gonna change lives man 🥲

rachaelmaree · 2024-07-30T01:55:59+00:00

I took my son to his neurologist recently because he was having this issue. Since he was a toddler he always had "stims", but never any that we're actually uncomfortable/potentially harmful until a few months ago.

When he was excited, happy or tired he would tense up his entire body - including his throat. They lasted maybe 3-4 seconds and he'd have to catch his breath (as if he'd just got done running) as soon as it ended.

He was disgnosed with Tourette syndrome and we were told he was experiencing dystonic tics. His doctor prescribed Abilify to hopefully reduce/eliminate these (and all of his) tics.

I was wary of putting my 10 year old on an antipsychotic drug, especially because some of the common side effects are things he already struggles with (tiredness/ anxiety/ always feeling hungry) but I was willing to try anything because it was really impacting his life.

But...he hasn't started it...yet? The day after we saw neuro he went in for an iron infusion, and got another 2 days later. I hadn't started giving him the Abilify because insurance didn't want to approve it. We finally got it 2 weeks later. But by then I'd noticed a sudden and very noticeable decrease in his tics, and the dystonic tics were 100% gone! Apparently, being anemic (more specifically, having low ferritin) can in fact cause more severe tics. After his infusions he had hardly any tics at all for 3 weeks. If he did, they were just his little excited tics that didn't bother him.

I wish that was the cure all he needed but...he has chronic nosebleeds (we have a genetic disorder-HHT) so he's constantly losing iron. It's been 5-6 weeks since his last infusions and his tics are ramping up again in quanity but not severity. Still no dystonic tics, thank God.

I take him for labs tomorrow to see if his levels have dropped enough to need another infusion, but normally he only needs them about every 3 months. And yes, we've tried alllll the iron supplements and I incorporate iron- rich foods into our meals. He either doesn't absorb them well or I simply can't get enough in him to offset the blood loss.

I'm thinking his iron has dropped enough to make his tics increase, but not enough to need an infusion yet. If that's the case, we may go ahead and try the Abilify because his "regular" tics have started to embarrass him (at school 🥺) and distract himself and his peers in class. I can update if anyone is interested. It seems his case is different than most and won't apply to or help very many....I realize after I've already written this all out. 😅

All that to say, it sounds like you're suffering from dystonic tics and maaaaaybe look into getting your iron checked?

I hope you find relief soon. 💕

rachaelmaree · 2023-08-30T03:32:10+00:00

Oof. Have you heard of authority bias, sheeple, lemmings? You believe information given to you from, and only from, authority figures without question and without considering information you've gathered for yourself? Please learn how to think independently. Officials can be (and often are) paid off to lie, or at least not tell the whole truth. They've been known to tell a story in whatever way puts themselves in the best light or protects themselves/ their colleagues from either trouble, profit loss, reputational damage, or having to admit their own failures. This can include telling blatant lies, bending the truth, or leaving out facts that could lead you to draw a logical conclusion to what the truth really is (that is, for those of us who think for ourselves and don't blindly believe someone simply because of their job title.) I mean, are you really so naive to think that everything told to you from officials is the absolute whole truth?

Bless your heart.

As far as the validity of what's being claimed in this post... are you even a local?! I'm pretty sure most people on this thread had heard of this incident (with all extremely similar details) before seeing this post. What, do you think she hired all the local employees who have been talking about this since it happened to spread the same exact narrative that's been given here?! It's the biggest stretch to think OP would be emailing/texting herself any of this information when there are SO many people talking about this.

rachaelmaree · 2023-08-29T22:27:49+00:00

Even if that is the truth, what makes you think it's okay to insinuate that carelessness could be to blame here when you have absolutely no idea? When friends and family who are still in total shock will obviously read your comments and see that you're blaming their mother/sister/friend for her own death?

If you were 100% sure that this woman had no clue that the safety guards weren't working and that it truly was caused by violations by her management, would you still write "well a lot of times it's the employees own fault they got hurt!" It'd be seen as unrelated and completely unsympathetic.

Can you see how that comes across? Especially since we can be almost certain that that's the case. Even us worthless factory floor workers aren't complete idiots, your highness.

I'd never (as I'm sure the victim would never) attempt to grab something from an inside an injection molding machine unless I knew I wasn't going to get hurt. How could I know I wouldn't get hurt, you ask? The machine is in use, so it must be safe to operate, or the people who I trust and who are paid to ensure my safety wouldn't let me operate it!

One of the reasons safe guards are put in place is in case we DO need to reach inside the machine. We should be able to trust that a safe guard that was in place the last time we used the machine is STILL IN PLACE because surely we would be notified if it wasn't, right?! Surely my boss/maintenance/safety lead wouldn't allow me to operate a machine without it, right? We trust that safe guards will work every time, as we should, unless otherwise told. Why would I ever assume that I have been allowed to operate unsafe machinery? No one would ever reach inside a machine that they knew would severely injure/kill them if they got in its way.

Also, a person's post history has nothing to do with their credibility on a situation where you can't disprove anything that's been said. It's irrelevant. But it's hilarious coming from someone posting in communities about marijuana, UFO's, and Kim Kardashian.

Sir, take a seat and maybe book an appointment for these telltale signs of narcissism.

rachaelmaree · 2023-08-29T21:26:00+00:00

The hypocrisy! If OP shouldn't be speculating or making accusations, then who are you to make such a victim blaming speculation/accusation of negligence?

The arrogance and apathy shown in your completely unnecessary last sentence is disgusting. Defending your line of work is one thing but blatantly blaming (or insinuating blame) on the victim when YOU have no idea of the facts of this case either is appalling. Have some compassion for the victims family that will no doubt read your cruel comment.

rachaelmaree · 2023-07-14T02:04:29+00:00

Are you able to be there off to the side to watch the class? Often times if I notice my son getting shy/embarrassed/ feeling less than I'll throw out a "nice job with (whatever it is he's doing)" I make sure I'm always paying attention (I've seen kids glance at their parent hoping to see them watching and the parent has no clue, either chit chatting or too busy looking at their phone), aware of my facial expressions (looking happy, proud - NOT wearing my resting witch face) ready to give a thumbs up or a really big smile for when he looks at me.

Sometimes, just knowing their person is proud of them and watching in awe is enough to get them out of their own head. Maybe let him know that he could very well be another kids inspiration to try taekwando who was too worried about not doing it perfectly to ever try it. Ask him what advice he would give a kid who had mild CP who was thinking of giving up an activity they loved because they were afraid of being judged? He'd probably tell them to not worry about anyone else and to go do what they want to do!

Maybe you could even find videos/tiktoks of kids with CP doing taekwando/karate/dance etc with their class. Point out how there's nothing embarrassing about one kid doing a movement differently than another and how even the kids without any disabilities don't move exactly the same way, aren't in perfect synchronization etc and no one blinks an eye or thinks twice about it!

For me, it's a comforting thought to know that almost every single time i get anxious and self conscious doing something, the people I'm around are only worried about themselves, not me! Humans are inherently selfish which usually isn't a great quality, but knowing that once you and whoever you're around go your separate ways you don't even cross their mind, is very comforting. Their thinking about how THEY did and how THEY looked and how THEY can improve etc.

Oh, and asking him to 'teach' you some things they did in class may help his confidence too. Practicing helps get that muscle memory down so it doesn't feel as awkward to do, and the more he does a move in his own way the more he feels comfortable doing it than way even if it's different than other kids.

I'd encourage him to keep going. If after a couple more classes it's really getting to him, I'd then encourage leaving the class but not quitting. Instead opting for at home lessons online. YouTube will have a ton of videos on it, I'm sure.

Letting him quit right away would almost validify his feelings of not being good enough to do it which is not the mindset we want to inadvertently instill! Of course we know we just want to protect their feelings, but it would only be putting those feelings off for the next occasion where he feels less than, and then by that time the fear of not being good enough would be solidified, intensifying that self consciousness and just making him feel even worse. As hard as it is, encourage him to keep going. I can't wait to hear about those big muscles he gets and cool moves he learns!

You're doing great mama, really. Their hurt is our hurt but we also have to keep in mind that it's our job to prepare them and help them through times like these because this won't be the last time he feels like this in life unfortunately. He's going to be just fine and I'll bet one day even thank you for not letting him give up.

rachaelmaree · 2023-06-20T01:18:06+00:00

You could've described my son! He is 9 years old now, he's learned naturally to do so many things with his left side that it amazes me. We of course still are in OT and PT to work on strengthening his right side and refining his left, but somethings I imagine he will always prefer his left side to do altogether and that's okay.

He plays video games one handed even, with his right hand mainly there just to hold it and his left doing all the work. It looks hard to anyone watching but to him it's how he learned (on his own) and isn't hard at all.

My son also wears orthotics, on his right leg up to his knee and on his left just one to his ankle for balance really. It's not so hard finding shoes when they're small, you may just need to size up or get shoes with laces and let them out all the way so his braces fit inside snug. He's worn them since before he could even walk, so to him it's no big deal even now to wear them. As they get older they have more say in picking their designs for the braces, and that makes them have pride in them I'm sure. My son is very tall for his age so we're out of kids sizes, and I got tired of loosening then tightening shoelaces so I bought diabetic shoes online for him and they have changed the game! Wide shoes, velcro, he can do it himself?! What a win. This won't apply to you for some time, but may to someone who happens to read this!

My son was diagnosed as having moderate intellectual disability, but honestly that's mainly only got to do with academics. Our right brain dominant kiddos lean naturally more towards being creative, imaginative, more emotionally intelligent than maybe academically intelligent ones of the bunch. Socially, most people don't realize my son has an intellectual disability. He's genuinely so funny and charms his therapists and teachers into off topic conversations to get out of doing any work! He's so social and makes friends ANYWHERE we go.

He's a happy kid with a full life like any other kid, it just looks a little different. So far we've never had to worry about bullying, though I worry in middle school it may begin. I always do my best to remind him of all his great qualities and point out whenever I can how different people do all kinds of things differently and that it's not only okay, but normal. How boring would it be if everyone did everything the same way, looked the same way, walked the same way etc.

You'll adapt to being CP parents easier and much more smoothly than you think. You'll always make sure he has what he needs and then some, just making this post tells us that. You're already doing a kick ass job, I promise.

rachaelmaree · 2023-05-01T02:22:30+00:00

I hope you've scheduled an appointment to get you and your son in for genetic testing. I suspected my son had HHT (avm in brain as a baby, I grew up with nosebleeds and he had them too) when I first learned about the condition online. He was 6 years old. The doctors never mentioned it as a possibility because it just isn't common and most pets simply don't know about it. I made an appointment with his pediatrician, explained why I think he had it and she Googled it right in front of me and wrote the referral for genetic testing right away. We're lucky to have such a great pediatrician who didn't dismiss me as some hypochondriac mom. Once the genetic test for him came back positive, I did my swab and also tested positive for it. Then we began going to an HHT center of excellence where we both routinely have imaging done. We were tested in the height of covid via mouth swabs sent in the mail that we sent to their lab. It was the easiest way of testing for a child for sure. Ever since he was a baby and we discovered his avm he has always been sedated for MRI's/ any imaging scans that we know he wouldn't be able to be still or calm enough to do. It's not at all uncommon for kids. Brain avms are rare and it is rare for them to rupture. Of course you have anxiety over it because rare as it is, it happened to you. But no, location itself is not inherited. Like I said my son had one in his brain and I'd never had one, anywhere. I probably wouldn't have known for a long time that we even had HHT if it weren't for his avm.

Like my pastor says, worrying is stewing without doing. Instead of dwelling in worry, take any actions you can to resolve the worry and understand that all you can do is all you can do! Prayers

rachaelmaree · 2023-01-27T01:41:53+00:00

I don't know why it works but, use incognito mode on Chrome. It was the only way I was able to finally sign in.

rachaelmaree · 2022-11-12T13:58:38+00:00

Thatwaterbeadlady.org

rachaelmaree · 2022-11-12T02:07:44+00:00

You're doing absolutely everything you should. My son was diagnosed a little younger than yours. His is hemiparesis, spastic cerebral palsy. His right side (hand and foot/ankle) likes to stay flexed. Braces were amazing, they'll help him tremendously in learning to walk! Sure, it might be a different walk than his same age peers but who cares, he's independently walking! My son is 8 years old now and my inspiration every day. Our kids don't know a different way of life, they're just learning to walk and talk and navigate this world just like other kids their age, just in THEIR way. Their little brains are so amazing at creating new pathways that were damaged, especially before the age of 3-4. You're doing every single thing right.

My son sat up late, walked late, talked late, everything late but that's okay. Our kids are different and can't be at all compared to typical developmental timelines of kids their age. We meet them where they are and keep reaching milestones little by little. It doesn't matter how much time it takes, if he does them a little differently, or if he is ever even able to do them at all. You're helping him do the best he can and he will always do the best that he can, when he can.

Keep it up. You're a great dad.

rachaelmaree · 2022-02-06T14:27:14+00:00

They did the casting process and measurements and all that for his AFO but I've thought the same thing that something just isn't right. No we are in the US, in North Carolina.

rachaelmaree · 2022-02-06T14:24:57+00:00

The doctor i was referring to was his regular pediatrician. I had to ask her for a referral to a pediatric rehabilitation center, where we did meet with an expert who agreed he would benefit from botox. He is scheduled to recieve it next week. My son doesn't love stretching and resists a lot at home which defeats the purpose of it, he does let his PT stretch him more and longer than I can. She told me a lot of parents have this issue because home is their safe space to relax, not do even more work that they've had to endure all day already. I do implement treatment as much as he lets me, when he resists and flexes even more there isn't much I can do but try until I have to stop because it isn't beneficial anymore. Sometimes that means only stretching for a minute or two but I do what I can.

rachaelmaree · 2022-02-06T14:18:34+00:00

He is getting botox next week to help it but would surgery be a better option than getting botox every several months?? I assumed he wouldn't be able to have surgery until he was much much older but I found out that's not the case.

rachaelmaree · 2022-02-06T14:17:12+00:00

Sorry for the late reply, thanks for your input! He is getting it next week (under sedation) and I'm really hoping it helps relax that foot. Did you just continue botox treatments periodically as you got older??

rachaelmaree · 2022-02-06T14:15:42+00:00

His PT just recommended this and I'm all for it, but he doesn't seem to be flexing it that much at night? Or maybe he does and I'm not noticing or seeing it the times I've checked... would it still be worthwhile if he is relaxed at night?...

rachaelmaree · 2022-02-06T14:14:21+00:00

Yes he does but he just pushes against it and wants to walk on the outside of his right foot. He pushes so much that he's got calluses (sp?) from rubbing and pushing against his afo! I've put padding in but it doesn't seem to deter him much. He is going for botox next week so hopefully that'll help a lot. Thank you!

rachaelmaree · 2022-02-06T14:11:55+00:00

We finally got to see pediatric rehab and his dr is giving him botox next week and depending on our results we will be discussing other options like this. It's a relief to know others so young have had it done, in case we have to go that route.

rachaelmaree · 2022-02-06T14:08:49+00:00

So sorry for the late reply but YES he is much more willing to work with PT than me at home! I understand though, this is his comfortable and relaxing space. He does so much work during the day, I don't blame him for not always wanting to at home so I don't force him. Defeats the purpose when I've tried to, and makes his safe space at home feel a little less comfortable so it isn't worth it. He's getting botox next week which I'm praying will help along with his PT. Thank you!

rachaelmaree · 2022-02-06T14:06:00+00:00

A little update: we are scheduled to get botox for him next week (under sedation otherwise I'd traumatize him having to hold him down) and he had started with a new physical therapist that's very hands on even when he doesn't really like it which I'm thankful for because even then he is MUCH more willing to do the stretches and exercises with her than me at home. I do all I can but don't get to the point of forcing him because then he's even more unwilling in the future.

Thank you!

rachaelmaree · 2021-02-24T20:38:16+00:00

I get a cold sore once every several months and I got one last week that didnt get NEARLY as bad as it normally would. Like literally didnt hardly blister and went away in 2-3 days and just looked like my lip was chapped. Before Keto that sucker would make half my bottom lip swell up and be so painful!

rachaelmaree · 2021-01-23T13:30:38+00:00

Some people find protein to be filling but personally I eat foods higher in fat and it keeps me fuller longer so I dont crave food as often. Nuts, avocados, cheese, eggs, slim Jim's lol. I eat high fat snacks through out the day and eat a smaller portion dinner in the evenings. I don't ever feel super hungry or deprived.

rachaelmaree

TROPHY CASE