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  1. CarolinAlaska

    Still Confused

    I agree with the answers already given. I just want to give you some encouragement. It will get better! Enjoy her improvements and keep tabs on the blood, but if she isn't fatigued or anemic, give it time.
  2. CarolinAlaska

    Update on the girls and resetting for a new, and much better, year

    I'm not sure what ctc math is, and I haven't heard of the other two recommendations for science. I will check them out. She has had physical science and biology already.
  3. CarolinAlaska

    Stephen... Remicade now...

    Jae's hematologist recommends hyperinflation prior to any IV stick due to inflammatory reactions of her veins. Maybe when you have to fast, your can supercharge the day before?
  4. CarolinAlaska

    Just realized it has been 7.5 years since diagnosis!

    Sorry she's experiencing this. I'm glad she made it through the summer. Camp work can be brutal.
  5. CarolinAlaska

    Looking for ideas for school

    Good for her that she has you as her advocate. I'm sorry that it's even necessary. So stupid that they couldn't see the need for dad's help that day without seeing it as a threat to the other children... ugh!
  6. CarolinAlaska

    We have a diagnosis! (And I'm not crazy!)

    I hope this makes a huge lasting improvement for her.
  7. CarolinAlaska

    Swollen Gland?

    Oh yes, Dr Google is not a friend. These are just unrelated minor problems that will work themselves out. It is good to stay on top of them, but in all likelihood, they are not serious.
  8. CarolinAlaska

    Experiences with Diet

    My daughter did EEN which was the best start ever for treatment for her since she was 68 lbs, almost 14 years old and 5'4" tall at diagnosis. It helped to provide her with much lacking nutrients too. Other than that, she can't eat raw veggies that are hard to chew like carrots. She is gluten...
  9. CarolinAlaska

    Update on the girls and resetting for a new, and much better, year

    We are going to use time4learning for English. For history we are going low-keyed with A History of the U.S. books (suggested in Sonlight and I got them used) with a Charlotte Mason approach. I found a book that has multiple choice questions covering the chapters. I'm looking for some books...
  10. CarolinAlaska

    Swollen Gland?

    My Dr, on 6MP had lots of tonsillitis and resultant swollen glands until she got her tonsils taken out the first year on 6MP. Now her lymph problem for the past year has been her swollen left leg. Viruses can make the neck glands swell, also consider sinus infection if only on one side - when...
  11. CarolinAlaska

    Stephen... Remicade now...

    Good news and glad to hear it.
  12. CarolinAlaska

    Update on the girls and resetting for a new, and much better, year

    So, Jae is at Camp Oasis where last year she started with a year of health issues that went from being sent home early from Camp to four hospitalizations from September through April. I've decided to hit the reset button and start off much better this year. So far, things are looking good...
  13. CarolinAlaska

    Suture anchors/clamps/pins and MREs

    Oh Tess, when it rains there, it's a hurricane! You poor thing! I feel for you with all that's going on. If your son can't walk tomorrow, I'd recommend looking into a knee scooter. He puts the bent knee of the bad ankle on the scooter and can push himself around. My husband who has a bad...
  14. CarolinAlaska

    Looking for ideas for school

    I would also recommend that the teacher or nurse keep changes of clothes handy for her. You never know how some meal or snack might suddenly give her urgency issues on the playground or somewhere inconvenient. I've had issues like that myself and have wished I kept a change of clothes in my trunk!
  15. CarolinAlaska

    Constipation after MRE,MRI

    I hope your son has started moving his stools. If he hasn't had one by today, I would recommend a call into GI or use Miralax at the very least.
  16. CarolinAlaska

    As

    When my daughter was still getting symptoms in spite of normal tests, they called the residual symptoms IBS. They did eventually calm down after her 6MP was tweaked.
  17. CarolinAlaska

    MRI no active inflammation still getting symptoms ??

    My daughter's MRE didn't show inflammation, but pill cam showed "ulcers throughout"
  18. CarolinAlaska

    As

    Yes, I would push for a rheumatology referral. Remind your primary doctor that untreated rheumatologists conditions can cause irreversible damage and that you'd like it seen to sooner than later. Are your inflammatory markers elevated?
  19. CarolinAlaska

    Why won't the GO Dr prescribe new meds yet?

    I third the necessity of seeing an ophthalmologist ASAP, and also a rheumatologist.
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