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SurfMom

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Everything posted by SurfMom

  1. I had a minot bout with conjunctuvitis while my daughter was having a moderate exacerbation and the day I was diagnosed, she had a significant worsening of symptoms.
  2. Thank you both. I especially appreciate the suggestion about the vitamins. The reality is that nutrition has always been important in our family, and the presence of nutrients fall near the mean in her blood tests, so I am not sure what compelled me to add the multi-vitamins in the first place. KO, I know this is flipped around, but we fired our pediatrician early on and have had much better luck with an internist. I wish you speedy success in finding a supportive physician. Day two and she is subtly coming out of the exacerbation although I believe that it is a coincidence that we stopped meds about the same time. The only symptom that has worsened is trouble falling asleep.
  3. DD15 as a strict vegetarian has been a heavy consumer of soy since she was three. Menarche for her was at 11, her next period 5 months later, then another about 4-5 months after that with about a two years of unpredictable cycles until the last year in which her periods are like clockwork for 6 days 28 days apart.
  4. DD15 is just beginning to pull out of her second exacerbation with only a ten day break between the first and the second. In the last 45 days she has been asymptomatic for ten. W have completed rounds of amoxicillin and a Z pack, have treated her newly contracted allergies with Zyrtec, kept her on Motrin, a multivitamin and iron. She has her first visit with a local neurologist on Weds, and an appt with Dr. M in January, and her only ongoing symptoms are ADD behaviors, what I call restless-body syndrome and emotional flatness. So, I have decided to pull back on everything including a prophylactic antibiotic, journal her food and behavior and see what happens if her titers done Weds come back ok. My concern is that I am already becoming desperate throwing any such drug, supplement, hormone (melatonin), nutrient her way in hopes something will change. Have any of you gone cold turkey with your kids? I would appreciate your comments.
  5. DD15 has this too, most notably academically in reading comprehension. It is like she wasn't even in the room when we read, discussed or reviewed. This seems to affect more of the language portion of her brain than the numerical or spatial. I am finding that she can learn....it goes into her long-term memory....she just cannot seem to access it short term. Nancy, it is encouraging to hear that some of this may be temporary.
  6. Yes, when DD 15 has trouble sleeping or when I give her a hug, I can feel her body rigid and trembling just under the surface. I have had restless leg syndrome and she describes it much the same but encompassing her entire body. We are trying to alleviate it by wearing her out physically with lots of outdoor activity done before mid-afternoon. So far it seems to be helping.....some.
  7. DD15 is doing Honors Geometry very accurately but at the speed of a solid since her exacerbations kicked in. She seems to do better after she has exercised (running, cycling, surfing) or just being outside for a few minutes. I have her work in cool air, sitting up and taking frequent breaks. Reading aloud to me as she progresses and talking about the logic of her steps to keep her stimulated too.
  8. This child is going into remission from leukemia because an experimental treatment in which additional genes were inserted into T-cells and reintroduced into the child's body. Some interesting thought in the comments section as well: http://www.nytimes.com/2012/12/10/health/a-breakthrough-against-leukemia-using-altered-t-cells.html?ref=health
  9. Just a quick observation that DD15 is in the sun year round as we live directly on the gulf. Confusion is one of her hallmark symptoms. She has always tested in the high end of the D range.
  10. We are in day twelve of exacerbation with DD15..in which she is irritable, unresponsive and giving me what she refers to as the death stare (eye rolling and glaring tics). It is pretty exhausting trying to keep a sunny face on this and the reason she cannot possibly function at school. What is the longest exacerbation your child has experienced? I'm just trying to pace myself (so I don't take to downing a vodka bottle, throwing plates against the wall or burning down the house ).
  11. MomwOCDSon, it sounds like our children are on the same track. DD, is in honors classes now that will convert to AP in her last two years and even the diagnosis of PANDAS is not deterring us from the goal of her being university bound. We have decided to start with a 504 because we can move on it now and then start the process for an IEP. I am fortunate to be working with a school that is open to the diagnosis but they are molasses slow. Each day they wait, DD has a full day of work to complete at home without modifications and the mountain is growing It is heartening to know your son is doing well with accommodations. Mommybee, thanks for the invitation to email. This is a learn as you go process and we are hoping for the accommodations that will keep her progressing without creating the anxiety triggers with too heavy an academic burden. For now, we are putting her on a homebound program as she is just too fragile and erratic to even manage getting from class to class right now without exhibiting strange behaviors. T-Mom....thank you for the 504 designation. That keeps me from the time to come up with that myself. Five minutes gained. I am sitting here right now working with her on advanced geometry knowing full well that we are simply jumping through the hoops in getting the work done and that prior to testing, I will have to reteach the entire chapter. Grief, this is slow going, every step is like dragging her through wet cement.
  12. Thanks, Hope. Pretty sure it is not Quest/Labcorp with whom there has been some challenges but I will follow up for sure. Obviously we want as thorough screening as possible...right down to the rare considerations of TB, B12, allergies....
  13. Excellent advice all around, thanks so much. We were already versed enough to request the chest x-ray. The concern was that her twin brother had TB as an infant so our thinking was that if she had lesions on her brain, this could be an issue. Long story short, no TB. What was particularly great was that I had my I-phone with this thread pulled up and used it as a springboard for my questions. The doctor was more than willing to test her for the additional antibodies and screenings. We will soon have answers to Lyme, Micoplasma titers. He even ran a urine test just to be sure since she wet the bed last night. We are taking amoxicillin for two more days to round out the course and then will be starting with azythromycin. After that we will meet to get her on a course of prophylactic antibiotics. Even better, he asked us if we were willing to wait while he got on the phone to get us set up with a local neurologist, knowing that by making the call and explaining her symptoms he might have better luck at expediting an appt. Amazingly, he did this for in a squeeze-in appointment. I think the only thing that kind of made my heart drop was when he stopped me and wished me luck, said he would see us in a couple of weeks after the course of new abx, to call us any time but that there was nothing more he could really do. Great job everyone!
  14. Heading to the doctor today with DD 15, second exacerbation in four weeks on second round of amoxicillin 875 mg. She had complete remission of symptoms with the first exacerbation after six days of amoxicillin though we treated her for ten. Here is what I am pushing for/asking her primary physician. I would appreciate your comments and suggestions as we are being squeezed in early this afternoon and I want to go in ready to go. He has seen PANDAS patients and open but not terribly knowledgeable: 1. Should we try a new antibiotic? 2. Should we move on to a pediatric neurologist locally in addition to Dr. M with whom we are currently in the intake process? 3. High B12 in CBC....could this be indicative of some other underlying cause? 4. Adopted from Russia, request test for TB? 5. Being treated based on ASO titers....any other tests we should consider?
  15. Just wondering what symptoms you were trying to alleviate and what the results were (reduction, elimination, etc.)
  16. My straight-A daughter's grades are plummeting. We are doing what we can her at home with two exacerbations in four weeks, but it is exhausting keeping her on task, let alone getting her to complete and understand her work in Honor's Geometry*, Advance Biology, Honor's English. When she was back in gear, she completely broke down in tears over her grades and tried so hard to get back into gear that I think it facilitated this last episode. For those of you with experience, which direction did you head? Home bound programs? An IEP? A 504 plan? We are thinking on the positive side and very concerned about how her grades and mastery will impact her ability to get into the fields and colleges she is interested in. Thank you so much in advance! *Remember when we used to ask, "Why are we having to learn this stuff?" The answer is so you can sit down 30 years later and help your struggling kiddo.
  17. Update: We treated DD with 875mg amoxicillin for ten days starting Nov. 15. She was back in school a week later. On Nov. 25, her second exacerbation started and of course our doctor was on vacation so the second put her back on amoxicillin for 30 day even though I pushed for a different abx. now six days into it, she is still symptomatic though they are not quite as bad as they were the first round. At her diagnosis, her ASO was 874 now, it is 304. We are calling Monday and getting her in to see her reg doc. immediately. We are in the middle of intake process with Dr. M. On Friday her temperature became a little elevated so we took her in for a CBC to check for possible viral infections. Question. Have any of you taken to your child to a neurologist locally to work with your child with any success? Any suggestions for her family doctor? Am I probably right at this point to be pushing (again) for augmentin?
  18. Of interest, DD15 having her second exacerbation ever is a strict vegetarian. At the time of her first outbreak, the only attribute that was out of the normal range was B12 for which she actually tested high. This is because we do supplements. Her twin brother, BTW is not PANDAS and also a vegetarian. PR40, so happy this worked for you! Keep us posted, please!
  19. Possibly an interesting read: http://shine.yahoo.com/book-club/-brain-on-fire---a-writer-possessed.html
  20. With DD15 just completing her first round of abc for her first (noticeable) PANDAS exacerbation, considering the possibility that the dogs are carriers is most helpful as we have four in our family. This is a worthy bump. On a side note, this is the first day she is returning to school. I dropped her off with a vat of hand sanitizer and have my phone clutched in my hand hoping for the best. Back editing to say that we would never consider giving up our pets even if they were carriers. The reality is that strep is everywhere and with a twin brother in school who could also be a carrier, we probably won't get rid of him either. Call is into the vet to start the abx for the pups.
  21. Thank you. We used it as part of our doctor's appointment this morning and he was grateful to have her symptoms and their severity in such an organized fashion. I am now using it daily to record her symptoms as they wane.
  22. Momma, kind of a bit of a right turn too, we are just in the beginning stages of abx treatment (so no steroids) and DD also did a lot of whispering and complaint about not leg but arm pain just prior to diagnosis. While on day one we saw a reduction in some symptoms, on day two she exhibited a Herxheimer reaction with a noticeable recurrence of symptoms including the whispering and arm pain. In fact, I think the arm pain complaints were worse causing me a fair bout of concern The good news is that now we are seeing a bit of waning of the whispering and arm pain (and others) as presumably her body is getting a handle on the toxins released as the bacteria is killed. In the morning she is great but the symptoms return somewhat in the afternoon and evening. KO, you are a godsend. Every time I have a major question or concern, you seem to be right there with the answer. While I knew it intuitively, I had never heard of a Herxheimer reaction.
  23. Jennifer, good thoughts for you as you continue the taper and start this process!
  24. Thank you, KO. Looking around the internet, there seems to be many over age 12 onsets. The possible increase in post-adolscent cases makes me feel more duty-bound, not just for her, to be thorough and communicative as we manage her PANDAS. Does anyone know if there is a database being collected for PANDAS children...even the basics like age, onset, titer results, treatment, etc? I am carefully documenting DD's information and would be glad to turn it over to anyone collecting case studies.
  25. MMC, when DD15 started to decline two weeks ago and we, teachers, and psych all thought ADD, Vyvanse was the choice. Since the full onset of PANDAS, we pulled her off all meds but I as she is getting over this episode the ADD is hanging in there hard. As a freshman, the work she is missing is mounting and she getting stressed about it so we try to start and within a minute she is up getting water, checking on the dogs....then she gets anxious about having to much to do.....and round and round we go. I try to pull her away from work hoping to do something to stimulate her energy level and thinking (like a brisk walk with the dogs) and other CBT tricks but so far we are in slow motion. Seeing the bigger picture, I am trying to get her to back away from the work altogether until I feel like we have the inflammation under control, but Miss Conscientious will have nothing to do with that plan of non-action. Long story short, if we go back to meds. I was pleased to hear that you had to say about the Vyvanse in conjunction with the tics and looking forward to your updates. I'll let you know if/when we go back to that med or another and the effect it's having.
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