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Everything posted by Veritaserum

  1. Dd would love to be homeschooled again. For her I am concerned about making sure she has ample opportunities for socialization. However, given her current status and needs that might be best achieved in therapy groups. Good to know that it's simple to homeschool solo. In Utah we just had to file an affidavit without additional reporting or testing (unless we participated in a charter school program). We are in San Diego now.
  2. I'm in information-gathering mode. I homeschooled for ten years in Utah, which was very simple legally. We have relocated to California. My children are currently attending local public schools. My 11yo 5th grade child is struggling with life generally (currently in the hospital again) and her pyschiatrist is recommending an alternative to daily school once she is released. Her psych recommends a hybrid option (time split on and off campus) as a way to balance dd's tendency to be overwhelmed easily and her need to learn how to tolerate/interact with her peers. Our local school district has a homeschool program in which they provide all the materials and require the parent to check in weekly. Dd would be able to attend her local school for things like band. I'm not sure what else she'd be allowed to do on campus. An internet search brings up a lot of charter schools in our county. Some are on campus only. Some are independent study only. Some are a mix. I'm also considering straight up homeschooling so we can better customize for her needs, but I'm completely unfamiliar with the laws in California. I recall discussions here that talk about registering as or with a private school? Can someone walk me through this? I don't know how longterm dd needs this. She has missed a month of school this year for a recurrent medical problem. Now her anxiety and depression are causing her to miss more school (that's what the current hospitalization is for). I'm currently a student (online), so I'm not available for fulltime instruction but I think we could develop a working schedule in which I check in with her a few times per day to make sure she's on task/progressing. She does have a 504 plan at school. I emailed the person in charge of that this morning to see what the school can offer in light of the psychiatrist's recommendations. I want to look at all of our options, though, since I'm not sure the school can deliver on the psych's recommendation for small class size and a quiet classroom. :)
  3. I've only ever used iPhones and have had positive experiences with the models I've had. My iPhone 5 is dying, but I have resisted upgrading to a new iPhone because all the newer models are wider and longer. My hands are small and I want to be able to used my phone with one hand. Anything bigger than my 5 feels like trying to operate a tablet one-handed--awkward and uncomfortable. I could get an iPhone SE, which is the same size as my 5, but I'm worried it's already out of date in terms of hardware because it's from generation 6 of iPhone. An internet search shows that the larger size of the newer iPhones (6, 7, 8--not the plus versions which are even bigger) is about as small as smartphones get these days (5.45 inches long). My husband has a 6 and my thumb comes nowhere close to being able to reach the top of the screen. I have to slide the phone up and down in my palm to reach the edges. He likes it because he has big hands. My thumb stops at his thumb's knuckle, to give you a size comparison. I could try using his for a day to see if the length is that big a deal, but I'm also interested in investigating my other options--if there are any. Every phone I look at advertises a new, bigger screen--the opposite of what I want. My iPhone 5 is 4.87 inches long and 2.31 inches wide. The size is comfortable and I can use it with one hand. Do you have something that's in this size range? Or, if you have small hands and a big phone, is it as awful as I'm imagining? I also want to be able to fit it into my back pocket or an armband for exercise or in a small purse (and still have room for my wallet and keys).
  4. I called the metabolic clinic. "Clinical review" of dd's referral is in process. The person I spoke to said they review labs and chart history to determine which speciality within the clinic is most appropriate. It will be another week before we hear back. I hope this means they will see her....
  5. 😫 The puking returned at bedtime and has lasted through this morning. Trying a liquid diet again. She first got sick with this episode 28 days ago.
  6. Her dentist said her teeth looked okay, but we also have her doing ACT flouride rinse. She had a good birthday. She stayed the whole day at school (I wasn't sure she would last). It's her acylcarnitine levels that are below normal. The other levels on her carnitine panel are low/barely normal. GI office called tonight and asked if I'd seen her low acylcarnitine. I said I had. The person I spoke to said dd should be seen by metabolic as a result. Hopefully we get a call from them soon. The pediatrician, GI, and metabolic specialists are all affiliated with the children's hospital here. If the pediatrician and the GI both want her to see metabolic, it seems like that should happen. We are in San Diego now. The metabolic clinic appears to be well regarded. I just need her to be thoroughly evaluated.
  7. Plot twist: after puking all night Sunday night, she was symptom free Monday. She had a good night last night and after twenty-six days of being ill she is at school today, her birthday. â˜ºï¸ I've been in contact with the records department for the newborn screening program in our previous state. This morning I received the report of her newborn carnitine levels, which were assessed after her two failed metabolic screenings. They show low/barely normal across the board. Not as low as her labs from two weeks ago, but low enough for me to think this has been a problem her whole life.
  8. *sigh* After not throwing up since Friday morning, she's back at it again. We did meds+ a liquid diet for almost 48 hours before slowly reintroducing solids. She complained of nausea pretty soon after the first food, which was applesauce. I'll see how she does overnight and call her doctor in the morning. If we are going to admit her, it would be nice to skip the emergency room if possible. Maybe if GI calls ahead we can manage that. It's her birthday on Tuesday. She doesn't want to spend it in the hospital. 😔
  9. I talked to a genetic counselor friend last night. She said that over the past ten years she's seen a number of cases of "mild" disease in a patient with a genotype typically associated with a more severe form. Because newborn screenings are catching more cases, this is more common than previously thought. I didn't think anything of dd's failed screenings once we got the message that she was "fine." But now she's not fine and she hasn't been for a year and no one has any explanation or effective treatment to offer.
  10. If we get a metabolic disease diagnosis (or a related disorder), I want to write letters to the people who gave us our worst experiences (like the children's hospital she stayed in last year). I'm still angry a year later about how dismissive they were and how ridiculous they were in their treatment plan. I wanted her to see GI given that she was suffering from GI symptoms, but they sent behavioral health instead. Ugh. She gets so ill during these episodes that she is unable to do anything. She missed half of fourth grade. So far she has missed all of fifth grade. I just need someone to take this seriously and I think her new pediatrician is a good ally to have. I liked her new GI as well, but at this point I'm not sure she has an underlying GI issue. Structurally everything looks and functions normally.
  11. Recap: Dd age 10 started throwing up last October. At first I thought it was a stomach bug, but it just didn't stop. Multiple visits to her primary doctor, multiple visits to the ER, a hospital stay, referrals to neurology and GI, a bunch of tests, a variety of medications (nothing works to prevent or abort an episode) and a year later, she continues to get these episodes every three months. Pattern is sick for a month, fine for three, sick again. We've moved to a new state. She started another episode at the end of August that is still ongoing. We met her new GI last week, who put her on a cyclic vomiting protocol even though her symptoms don't really fit CVS. The GI also ordered metabolic screening. THAT is where I think we need to spend more time looking. Her tests revealed below normal and very, very low normal levels of carnitine. When she was a newborn she failed her metabolic screening twice--both times flagged for low carnitine. Follow-up confirmatory testing for primary carnitine deficiency said she didn't have it, but her low levels now and then make me think she does have some issue with metabolic function. Her pediatrician referred us to the metabolic specialists, but when I called to make an appointment I was told they don't take every case they are referred. We find out in a week if they'll see her and it will likely be months before we get in if they do decide to take her case. 😒 In the meantime we are trying one more thing ordered by GI before doing another in patient hospital stay because she's been vomiting for over three weeks now. I know it's kind of a long shot to ask here since metabolic diseases are fairly rare, but does anyone have experience with the manifestation or diagnosis or treatment process?
  12. Lately: Jane the Virgin My Crazy Ex-Girlfriend Star Trek Voyager Veronica Mars Firefly Friends Parks and Rec I like to have something entertaining in the background while I work on chores.
  13. We have a bunch of those IKEA Expedit/Kallax-sized boxes. I've told the kids that they each get four of those for any non-clothing, non-book item they would like to move. I reserve the right to reduce the number of boxes if needed. We are going to be majorly downsizing when we move (current house is ridiculously large and we'll be cutting our living space more than in half). What will fit comfortably will really depend on the size and layout of the new house, which we won't know until a month or so before we move. I think it definitely helps to have a defined limit.
  14. Great work! Wow! We are going to move this summer. I've made weekly goals (area to focus) between now and then. This week I'm working on listing homeschool stuff to sell and creating a To Donate box. There's so much that this project will probably run multiple weeks. This week I also want to empty a big closet as the future holding area for moving boxes. I've already made a pass through the kitchen to get rid of stuff we aren't using or things that don't belong in there. I organized what remains.
  15. :grouphug: That's awful. I'm glad you and the kids are getting support.
  16. I always prefer a tub + shower combo instead of a shower alone. My kids like to take baths sometimes instead of showers and I prefer that they do it in their bathroom instead of mine. (I only bathe the youngest in my tub since it's easier to access than the kids' tub.) I have six kids, too, and the sink in one room/toilet + bathing in another is definitely a nice set-up. In real estate terms, a shower only is considered 3/4 bath instead of a full bath. I grew up sharing one bathroom with five siblings and mornings were rough. I had to wake up at 5 to catch a turn in the shower. I did my hair and such at a mirror in my bedroom since other kids needed to shower and the bathroom was tiny with tub/shower, toilet, and sink all in the same room.
  17. Before my thyroid diagnosis, I had concerning stroke-like symptoms and my migraines were out of control. So, for me, there's a correlation between improperly treated thyroid and neurological symptoms. Once my thyroid levels were under control, the neurological symptoms resolved. That said, I did get sent to neurology for further evaluation just to make sure it wasn't something else.
  18. I tried it once last month. It was nice and I will probably do it again. My main issue is that I have to remember the night before to set up the order.
  19. My kids are in their second year of school. It was a difficult decision to make, but a combination of factors pushed us into making that choice. They're getting a better education than I'm currently able to give. In the time that the oldest five went to school, two children have been hospitalized and my health has been widely variable (chronic illness, which was a big reason I stopped homeschooling). During the hospitalizations, I didn't have to worry that the other kids were getting what they needed education-wise. Both of the hospitalized kids ended up homeschooling again afterward. The younger one has since returned to school. The older one is going to pursue a GED (in our state this actually earns a state-issued diploma). Life is complicated. Sometimes you have to find alternative solutions to meet everyone's needs. I have very fond memories of the ten years during which I homeschooled. Now we do the fun stuff in the evenings or on weekends. There are challenges associated with the beurocracy of public education and sometimes my kids have more homework than I'd like, but overall it has been a positive change for our family.
  20. They did urine samples the three times we went to the emergency room. We also did one at the doctor's office. One of the ER cultures grew so they said she had a bladder infection (no symptoms at all, but we did a round of antibiotics). Her PCP did a bunch of blood work, but I don't remember everything we tested for. We didn't do a 24-study of any kind. I'll call our family clinic and book an appointment to go over options for further investigation.
  21. She spent three days at the children's hospital in October. They misdiagnosed her with migraines and referred us to outpatient neurology. The outpatient neurologist was a much better listener and confirmed my gut that it's not migraine. He referred us to GI. The night pediatrician we saw when we first were admitted into the hospital thought we should investigate neurology and gastroenterology, but we only ever saw a neurology team. They were unwilling to consider any possibility other than migraine once the imaging was clear and they heard I get migraines. I wish we'd gotten a GI consultation while she was there. They sent a behavioral health team instead and tried to categorize her symptoms as a psychological issue. I was very frustrated with the whole experience. When I called their outpatient clinic to set up the neurology follow-up their in patient team recommended, they weren't even accepting appointments. The same was true of their GI clinic. No appoints available. They eventually called me back a month later, but I'd already gotten dd into another clinic with our PCP's help. No one at any point has been particularly bothered by her continued vomiting. It's been more of a, "huh, that's strange." But since she hasn't lost weight and she's not dehydrated, they don't feel like it's urgent despite its disruption to her daily life.
  22. She's on the cancelation list, but it might be just for the hospital nearest us. This doctor does scopes in multiple locations. I'll call to make sure she's on the list for the others. I don't mind driving an hour for this test if she can get it done sooner. She doesn't fit the typical presentation of Cyclic Vomiting Disorder, but I still wonder if this protocol might be helpful: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3163531/
  23. Her PCP checked celiac antibodies in October as well as H. Pylori. Both were negative. Can it take time for antibodies to show up? I'll have her keep a food journal again. I gave her a tin of Altoids this morning. From what I understand, we shouldn't do elimination type diets until after the scope.
  24. We haven't tried that. At a neurologist visit in late October he said we might try Cyproheptadine (antihistamine). He didn't think it was any type of migraine or neurological issue, though, and referred us to GI. I'll look at cyclic vomiting again. It didn't seem to fit back in October.
  25. This time all the kids got a stomach bug. She got it first (ten days ago) and she's still puking. The other kids were done after two days. I called the pediatric GI office to let them know and they scheduled her for a scope, but the earliest date they have is the end of March! I wish they had scheduled her for a scope when we met with the doctor in November if they're booked that far out. Ugh. Actually, I wish she'd been seen by pediatric GI when she was admitted to the hospital so that the scope could have happened then. She attempted school this morning since she's back to the pattern of mostly being sick between 4pm and 7am. I gave her Zofran before she left. She threw up at school and called me to come get her. We are going for a blood test later because the pediatric GI wants to check if she has the Epstein-Barr virus. When I spoke to the GI nurse yesterday, she said to talk to our primary care doctor about management between now and the scope. I feel like we've exhausted our options there. Phenergan, Zofran, and compazine are all ineffective. I guess I should call and make and appointment in case anyone has new ideas, but this hasn't responded to any treatment. The longest break she got in October was after IV doses of compazine, toradol, and Benadryl. She didn't vomit for four days after that. Then it started up again. I'm so frustrated and dd is miserable. Neurologically everything checks out 100% normal. This is a GI issue. Any other ideas of medications or anything that might give her some relief?
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