Tiramisu
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Posts posted by Tiramisu
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20 hours ago, Tap said:
Consider POTS. Postural Orthostaic Tachycardia Syndrome.
DD19 has it and fatigue was her main symptom in high school. When we went to the cardiologist he was asking her lots of questions about being dizzy and lightheaded and she answered 'not really', which the doctor took as a 'no'. After she started treatment and started feeling better, she realized that she was constantly dizzy and lightheaded, she just thought that it was normal and everyone felt that way. To her 'dizzy' meant falling down dizzy, like when you spin in circles too long. OI!
GI problems are very common with POTS. GI issues are often completely separate diagnosis but are co morbid with POTS. You will see GI issues listed as symptoms in clinical descriptions of POTS but not usually discussed in much detail. If you read personal stories you will hear a lot about GI problems and in some cases gastroparesis and feeding tubes.
A very basic way to test for POTS is to do what is called 'a poor mans tilt table test'. (doctors have clinical ways to do this test, this is just a quick at home way to see if POTS could be something to look into).
A non-clinical at home version.... (not medical advice) Test in morning if possible.
Lay as flat as possible (flat on back and flat arms/ legs) for 10 minutes. Without rising, take heart rate and if possible blood pressure. This is the supine rate. Then slowly stand and remain standing for 10 minutes. Try very hard to not move while standing. Keep both feet on ground but if you need to use a chair or wall to keep from falling that is ok. Arms allowed to move but try to keep legs strait and not crossed Don't lock knees! Remain standing and take the heart rate immediately, at 3 minutes and again at 10 minutes. Do not sit down in between heart rate tests or lean/rest on an object unless you fear falling. Subtract the supine rate from the standing rate. Everyone's heart rate should increase. People with POTS will have an increase of 40 bpm for an adolescent during the test (I think this is the guideline up till 19yo) Or if their heart rate goes over 120 bpm that is a cause for concern and should warrant a discussion with the doctor. If the person can't remain standing or starts to faint, stop test! That is a good sign there is a problem regulating and should be discussed with doctor.
The body should increase heart rate for a short burst of time to get the blood pumping when you stand up, and then your nervous system should regulate some body functions to allow the bpm to stabilize at a normal rate. An example of this is when a person stand up too fast. You get dizzy for a few seconds, then your nervous system regulates body functions, and you feel fine and continue on your way. In POTS patients, this series of regulations isn't working right and their heart rate goes too high and stays high for too long (doing its job of trying to pump blood to the brain). This creates fatigue, dizziness, brain fog and a bunch of other problems. For a POTS patient, just sitting up in bed can make them feel dizzy and out of sorts. When the head is above the heart, the heart rate increases to get blood going to the brain. Part of the fatigue is lack of blood flow to the brain and the heart is working so hard, it is like a marathon runner running.
You can use heart rate apps, manual finger to wrist test, or a blood pressure cuff to do this test. Some apps are better than others and work on smart phones that have a sensor.
My first thought was POTS, too. I have POTS.
My dd had POTS symptoms during high school. I never got her tested because I didn't realize it until late into the issues and other things were going on.
Anyway, she had all the symptoms you describe and all the tests recommended here, including abdominal U/S, endoscopy, sleep study, and bloodwork up the gazoo.
When she was about 19, I took her in for allergy testing after my other kids started having issues and tested positive for some common allergens. She had testing years before, but we went through it again. This time she tested positive to wheat, milk, and eggs, in addition to other things. In the years since then she gradually changed her diet and she is really a different person now.
She could tell immediately that she had issues with eggs, but it took longer for her to realize that dairy was the cause of most of her GI issues because the reaction was delayed.
Now that she is grown up and working and living on her own, she can buy and prepare her own food, it's been easier for her to control her diet. When she stayed at home between college and working, I could see the ups and downs when she "cheated."
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Thinking of you, too, and looking forward to a post op update.
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16 minutes ago, Arctic Mama said:
Yeah, the baby’s lip tie caused a gap between his baby teeth too. It’s the potential rear submucousal tongue tie we are worried about. He doesn’t have a lot of tongue mobility and that seems to be impacting his eating and speech sounds, on top of the cerebral palsy. So we figure getting the ties taken care of at least eliminates one variable in that equation ?
When I consulted a SLP after my youngest was born, she said she would act immediately if it were affecting eating. She also had a child with these issues so understood it on a personal and professional level.
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I'm a healthy skeptic and lavender makes me sick and I'm not fond of diffusers. But there are EO uses that I discovered through friends and family that have worked.
Tea tree oil eliminated recurring fungal infections on my feet after dealing with them for over twenty years. (Fungus-contaminated house slippers at a friend's house in Japan. Yuck.)
One application of tea tree oil also eliminates red bumps after shaving.
I have a couple family members who react to almost any shampoo, even high priced all natural stuff without the junk. Rosemary oil is the only thing that relieves their itching.
I have chronic headaches and sometimes OTC stuff doesn't work. Rather than filling a script that my doctor gave me, on one desperate day, I tried a friend's peppermint oil along the hairline on the affected side of my head, and my headache became manageable within 15 minutes. Usually a headache would last two to three days, but it never came back after that first day. I could tell my head didn't feel right but the pain was gone.
Now, I think I want to try peppermint oil for ants, which I prefer to the smell of cinnamon. I will get it from Whole Foods or Amazon. ?
Any other things that really work?
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I have two kids with tongue ties and got freaked out by a midwife who predicted speech problems would develop. Nothing like that ever happened.
I think at least two of my kids also have a lip tie. I have a memory of the dentist pointing it out because it could cause a gap in the front top teeth. One's front teeth gap closed completely. The other's is so small that you can't really see it. She is the one who had a palate expander so that may have given her some extra room.
My H had a lip tie and did not have speech problems but got it cut for other reasons. He does have a noticeable gap between his two front teeth. It's not huge but it's there.
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1 hour ago, PeterPan said:
We put my ds on hydroxyzine when he was having a really intolerable allergic reaction to some things in Florida, and it did work very well. It's very short-acting, and it left him a little groggy. They use it as a sedative for pediatric dental work as well. I wondered about using it more full-time, but we ended up trying 5HTP instead. That has stabilized his behavior much better and it comes in a time release version by Natrol.
You can run genetics with 23andme and see if she has defects in the gene for 5HTP. One of my kids was heterozygous for the defect and the other was homozygous. Basically the body has tryptophan and needs to convert it to 5HTP which then converts to melatonin and serotonin. So if that conversion step is glitched, their 5HTP levels are low, glitching the melatonin and serotonin. So you end up with anxious night owls, sigh. Ds was heterozygous, so I just tried it just to see. Supposedly they're only affected 30-40% and can make up for it. In our case, adding the 5HTP was SO stabilizing, I definitely would not want to be without it, mercy. And it's cheap. And it's something you can evaluate the need for based on genetics.
Natrol time release is what we're using. 100mg twice a day for my 65 pound ds. Also comes in a 200mg tablet for larger people. But it only seems to last about 12 hours, so I'd do the twice a day dosing rather than a larger single dose, if that makes sense.
Someone mentioned D. That was one of the early things I found in the genetics. I had no clue you could have a defective vitamin D receptor. Literally my kids just weren't using the sunlight they got to make D!! So if they happen to have that, something as seemingly insignificant as D could make a big difference.
Very interesting. It makes me want to do 23 and me. There's a lot of wonkiness in the family and I'd like to figure it out.
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18 hours ago, nixpix5 said:
It sounds like taking the steps with a good counselor as you are will help to address the anxiety.
I am wondering if there is a compromise with school that could benefit both of you. I am a firm believer in knowledge is power. As a counselor one of the first things I do with the kids I work with is start teaching them what anxiety is and how it manifests neurobiologically. It demystifies it and allows someone to feel more in control. I wonder if you found age appropriate resources about anxiety and maybe even a fiction book about a character who has anxiety if you could create a unit study around it. You could tie in writing, light research, some math and science of course...I could see a project like this covering many areas. They make wonderful anxiety workbooks for teens as well. Reading a biography about someone who might have overcome anxiety... I am just throwing some stuff out here. Characters and people who share our walk ease our burdens because they show us a potential path. Sometimes teens and preteens just do not see a path yet.
One goal I have for my kids isn't necessarily that I need to focus on certain content but the steps one takes to learn. I want them to be learners and synthesizers of information. Relevant knowledge is sometimes what helps someone overcome that stuck point. Or maybe she has another passion you can wrap school topics into for her just to help her through this time.
I love all these ideas. Thank you. I have heard about anxiety workbooks for kids so I'll look into that. And I'll go through my book shelf for inspiring books.
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21 hours ago, Noreen Claire said:
Have your ever had her tested for strep? My DS9 has PANDAS and, weirdly, seems to pick strep up in the summer each year, which sets off his (usually very mild) anxiety/paranoia/ocd. Antihistamines are known to help some people suffering from PANDAS. Just a though.
Interesting that you mention that because a few springs ago when she was going through the same thing, her pediatrician ordered bloodwork to try to rule out PANDAS. The tests were negative but I'm glad it was investigated.
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21 hours ago, Jean in Newcastle said:
Hydroxyzine is a prescription allergy med that is also used to treat anxiety. It might be something to ask her doctor about.
Thank you. I hadn't heard of that before.
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14 minutes ago, JMG221 said:
Allergy meds are AWFUL for both me and my daughter when it comes to anxiety. I have yet to find anything that works and, honestly, the allergies are easier to suffer through than the anxiety that the meds cause.
Have you tried Xyzal? That's what I was thinking about trying.
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27 minutes ago, prairiewindmomma said:
I just reread and saw about the allergy med. Absolutely switch and have it noted in her medical file. FWIW, Zyrtec particularly flips a lot of people out.
Uh oh. Now I'm afraid to try Zyrtec.
She takes allergy meds through the fall but only has this problem in speing so I don't think the current med is causing it. I just wonder if she needs something else that might work better.
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20 minutes ago, prairiewindmomma said:
1. Do you know the trigger? If not, does she have any allergies or is there a family history of seasonal allergies?
2. Have you tried NaturalCalm or a magnesium oil with her?
As far as coping goes for you, many hugs to you! Take some self-care breaks. I find meeting a friend for a walk, a movie, or a late night dessert to be helpful.
Recognizinf that anxiety is driving a lot of her behavior is so helpful. It gives me a chance to emotionally distance a bit so that I don’t get wrapped into an individual’s emotional loop.
Every year, for my entire life, I would feel awful in spring. My mood was low, I was tired, I'd get GI symptoms. My mom was sure it was an anniversary syndrome because my dad left our family in spring when I was a child. But a few years ago, I started taking allergy meds and I I have never had that problem since.
My D has seasonal and other environmental allergies. She takes Claritin. I find Claritin isn't strong enough to cut handle my post nasal drip in spring so I use Allegra in the spring.
How do I know how much magnesium to give a 12 year old who is as tall as me, only skinnier?
I really have almost no breaks and I think that might get worse rather than better. My oldest has been home helping a lot, but I think she'll be getting a job offer any day now.
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There is some history of my youngest dd getting anxiety flares at exactly this time of year. This time it hit very suddenly and she is having a terrible time getting work done. She's 12 and I think the hormones are not making it any easier. She is my youngest of four girls and I know from experience this age has never been easy, even without anxiety to deal with.
Besides school, she is also reluctant to practice and go to music lessons. Thankfully, she is still enjoying gymnastics, time with friends, and martial arts with her dad.
I have put in a call to a counselor we've used in the past who is excellent and positive about homeschooling. Hopefully I'll be able to get her in soon. I may also try a different allergy med to see if that helps.
A related problem is that my self-esteem is a little too tied into getting school done everyday. She is feeling bad but thinks I don't care. She thinks all I care about is school. :(
And honestly I feel like a failure when school doesn't get done. It's irrational but it's bad. Crazy thoughts go through my head like I suck as a mom, I'm a loser, etc. Thinking about it rationally I know it's not true, but that's how I feel on the days she can't get more than a couple of things done.. :(
I need some suggestions about how to handle this situation with her positively. How she is feeling is real and not manipulative, and I need to let go of my own anxieties about schoolwork.
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On 3/19/2018 at 7:26 AM, lisabees said:
Can you appeal for more merit or needs-based aid? Did you receive more at a peer institution?
My son has loved his time there. :)
To update, I recently made an appeal and dd got an additional grant. The cost would still be more than twice as expensive, so we won't be visiting again.
This process is really stressful, though I'm very grateful for the amazing scholarships she's received.
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Maybe where you live. My mom (in Texas) has had the worst time with my little sister's school and lice. It got to the point where she just kept pelicucide shampoo mixed in to their regular shampoo as a preventative measure. (I suggested tea tree oil would smell better and work as well, but my mom always has her own ideas.) The school policy is to NOT sent kids home or prevent them from coming to school. They just send notes home.
Oops. Sorry. Our local elementary school had a strict lice policy. Kids were sent home immediately and had to be cleared before returning to school.
I also realize while I have a lot of weaknesses, I have infinite patience and perseverance when it comes to picking out nits which helps keep any lice from getting out of control.
My kids also have sensory issues, so we have always caught them quick.
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As you realize, the lice is a separate issue. Lots of homeschoolers get lice. The worst infestations I know of have been among homeschoolers. That's just my experience, but schools don't allow kids back in with lice so it's usually dealt with quickly.
We had an infestation in a D's classroom once, so I would recommend putting some pressure on the school to treat the classroom asap.
We never had lice spread among family members but I was relentless about coming through and picking out nits.
I would take out kids who want to homeschool at any point agreed upon by you and your DH. Right now would be fine if you agree the decision and timing is truly in their best interest. You said it's a good school so it doesn't seem like there is a question of their imminent safety or well-being.
I would think twice about taking a kid out of school mid-year who is happy and doing well, unless there are extenuating circumstances. For any kids like that, I'd revisit it over the summer.
Looking back, I traumatized one of my children by taking her out mid-year. I don't say that lightly. She was only in K but she cried every night like she was in physical pain for a long time after. I think she had a predisposition to depression but that was likely the primary trigger. It lasted over three years, until I put her back in school again.
My one serious piece of advice is to make sure this is about what's best for each child individually and not about what you want. You are wanting them home again now. That is a truly beautiful thing in this crazy world of mixed up priorities. Just make sure you and your DH are on the same page. He seems to be thinking prudently and cautiously while you seem to be caught up in emotion--a very good and worthy emotion but still worth thinking through carefully.
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Can you appeal for more merit or needs-based aid? Did you receive more at a peer institution?
My son has loved his time there. :)
I'm thinking about doing that, but tge peer institutions aren't that much lower. :(
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My D really wants a small LAC but I don't think it's going to happen. We are waiting for notification on one last full tuition scholarship for an LAC.
She already received full tuition plus at a very good state university. I think she'll end up there even if it mean comprising on her major. The LACs are more than two times the cost even with their top automatic scholarships and additional grants. We could do it with federal loans, but would it be worth it when the instate publics are much more highly regarded than the LACs anyway.
We played a merit scholarship game and it created a lot of stress to have to depend on competitive scholarships that hundreds of other kids were vying for. I wonder if it was worth it.
She has the stats for much more elite universities but did not apply to colleges with NPC results beyond our budget.
There are universities she could attend more cheaply than the LACs in her list but they are farther away. And none would be less expensive than our state college or offer more.
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I think we might be down to two schools. We were really hoping Susquehanna might work. We already have a visit scheduled for Easter break but I'm wondering if we should just cancel it. Even with their top scholarship, it's still expensive and much more so than the two other options.
She has a scholarship worth more than full tuition at an instate university so it's hard to compete against that. I just wish she liked it more.
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Friends of mine just visited after their DS was accepted and received an amazing scholarship. They were very impressed. Everyone at Gannon was very welcoming and tge surrounding area was nicer than they expected.
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Several schools have fallen off the list, and now D is waiting on competitive scholarships at three colleges that she likes. She won't be notified until mid-March so we have a bit of a wait.
She got more than full tuition at our local public university but she has become rather negative about it. Sad, but her reasons good. And the terms to keep the scholarship give me reason for concern. It would be awful if she went there just for the scholarship, couldn't keep up the gpa requirement in a challenging program, and we had to pay full fare at a place that made her unhappy.
There is only one admission decision remaining from a more selective public uni that started releasing decisions this week. I'd like a big envelope from them today!!! Merit is stingy but it's an in-state public, and she should be very competitive there. It should be affordable even with a small scholarship.
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Yes to this.Double-check with your insurance about coverage since your son is now 18. There are often greater limitations on ST for adults than for minor children. ST for adults is often limited to trauma rehab (after an accident, stroke, etc.)
We have rather good insurance but it wouldn't even cover ST for my preschooler because it was considered a developmental problem and not the result of an accident, etc. And we live in a state where we don't generally have access to public school services without enrolling, so homeschoolers are on their own.
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My mom has an extremely mild problem with S's that I doubt most people notice. It hasn't caused a problem in her professional life. However, my siblings and I learned to talk by hearing her and we all developed the same speech problem and we all needed a year of speech therapy in early elementary school to correct it. Sometimes there are consequences for mild speech issues and if you have the opportunity to fix it I would.
I would be inclined to pay for at least a few sessions with a speech therapist for the sake of efficiency, if it's affordable or covered by insurance.
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Did they do a culture of the sinuses?
My friend's S had constant sinus infections. He was on antibiotics again and again. I recommended she ask for a swab and culture, and an unusual bacteria came back, which they could then target with a specific antibiotic.
Once he was completely healed he had surgery to remove his adenoids and that helped improve drainage so he was less likely to get infections. There was a dramatic difference before and after.
Would you homeschool a 6th grader if they didn't want to?
in General Education Discussion Board
Posted
Some kids will go along with the decision and cooperate. Some kids won't and forcing them can actually be destructive to them emotionally and hurt your relationship. You have to know your kid. I had one who I helped into a clinical depression with the decision to hs, so in the OPs shoes, I would probably make the decision to sacrifice my own educational ideals for the sake of removing a middle school child from a school where he was doing well and was happy.
My 12 yo is my youngest and has never loved hsing but we have somehow managed this long. She is the only one at home during the day now. My oldest two have moved out to college or career in the last few months. My next one is at high school or working. We were getting by, but then two of her best friends went from hsing to public schools this year and it's been very hard for her. All the activities haven't helped. We will probably put her into a private high school next year, a year early, but we still have to get through this year.