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Everything posted by qannie47

  1. Here at joybops house for long weekend. She is a doll. So is her husband. Her pandas 8 ds is doing amazing. We see greenblatt today. My ODD food allergy son...almost 4 wks gluten/dairy/egg free...joybop does not see one trait that I have described. He is truly a different child. Amazing...now..just need to see what greenblatts approach is for the adhd...he also claims food allergy a part of picture
  2. An infection is still present I bet. It took 6 weeks of abx to clear up flares for us on a couple of occasions. Good luck, you will get past this
  3. YES! About 24 hours later, he turned into a snotty, edgy, disrespectful crab....UGh. However, 3 clean diet days later, "My love child returned!!" No edge, patient, no tones...I have to be careful to remember though that he is still 8 and is a boy, so............ As for as your red cheeks, did you check Sasyclites? I misspelled it. The red cheeks are the main symptom for Sacylite issues. I believe there is a dietary enzmyme that works well. LLM knows the name. My ds came back sensitive to those as well, but I do think that over the last year, it is less of a problem for him because in the past, "YOW" those cheeks and ears would flame!!!
  4. googled Broxil...lots of energy used to get to the bottom of what it actually is...this concerns me. Why am I not hearing typical meds to treat strep infection??? Still unsure what Broxil is.... To me it makes perfect sense to treat infection before going to prophylactic dose?????
  5. Sometimes it can take several weeks/does of the same medication before you see results. Although, you have already seen results...just not lasting. This tells me that you are on the right track. I would continue with same abx, maybe for up to 6 weeks, (which can be standard for Pandas). The abx does three things, wipes out the infection, works as an anti-inflammatory in the brain, and can shut down the immune system, which is the problem in the first place. Good medicine takes it slowly. You need to let less stronger meds try their thing first. By doing so, you are building a history. Finding out what works and what does not. Going to the big dogs right off the bat is not going to garnish you any information. Medicine does not want to go to go to stronger meds if they do not have to. Perhaps even cloudy the results. As a parent, this was a difficult thing for me to wrap my brain around, "The wait and see approach". But it is necessary in order for you to fully understand your child. You are pointing to a tick bite. That seems to be the root cause. That being said, I see no harm in running test that are not affected: false neg/pos by the medications the child is on. I do no see any thing wrong with your doctors approach. Just good medicine. Best of luck
  6. Thanks Cara, and don't beat yourself up either. My smileys are not working again.
  7. Hi Trintybella, I have no experience with Lyme, so I have no advice. But I just wanted to extend a hug...sorry things are so tough right now.
  8. Just a vent here. Truly. I have a habit of quitting smoking for about a 5 year stretch....Then I start again. Call it Pandas, Sensory Issues, ODD. Whatever, when it hits the fan I smoke. Coming off my last 1 1/2 year stint of my love for Marlboro Menthyl Silvers 100 for about 1 week now...I can't help but think, "Really!!! After all I have been through??? I am supposed to give up my one vice when I still have ONE child to get through the wreckage???" "I have to cook gluten, Dairy, Egg free and not smoke?". To please the WORLD I have to give up my one thing that gives me piece of mind for 1 1/2 minutes ten times a day??? UGGGh. Yes. I have pinky promised my Pandas child and I have done it. It is just that right now, when my food allergy child, on a play date ate gluten two days in a row that aggravates me, and begs the question, "Who really wants to live to 90 anyway???". Q
  9. No Kidding SSS...thanks, you made me smile.
  10. WOW. That's all I can say is WOW. As parents, we see the best in our children, despite the obstacles. Despite what the books, psychologists, teachers, doctors friends, family, etc...SAY to US. We the parents, see the best. It is what we reach for. Your story. It is so encouraging. Such nutrition for the soul. The tired soul. The overwhelmed soul, the soul that second guesses, the frightened soul. Yet the fighting soul. Because it gives Hope. Hope, that thank GOD, when you dissect this forum you find Hope & Healing. Thank you so much for sharing your delightful journey. Q
  11. Hi, in recent posts, I have shared that my ds is allergic to gluten, casein, whey, and every aspect of eggs. I have him on a elimination diet that really has yielded some nice results. Two days in a row, my ds ate something that he was not supposed too...doughnuts by a friends house and then a big Snyder's pretzel the next day. Question: How long do you think it will take to leave his system? Also, do you think that even one doughnut can throw all that I have achieved out the window? I am aware that even trace amounts can have an effect, but I am hoping that given that the rest of his diet on those 2 days were very clean will be enough to counteract some of the effects. I have told all his friends mothers they are not allowed to feed my children anything. Nothing. Water. That's it. Q
  12. If she is still doing the behaviors, no, she is not over the episode. That does not mean that the infection has not cleared...remember, it can take several weeks for the inflammation to go down even after infection has cleared. I would still do a re-check to make sure the infection is gone...
  13. I Pm you, but as I re-read, you may have some co-morbid conditions...That is okay, most of us do. Seriously, what stands out loud and clear is the fact that she responded well to the abx. I would insist, maybe manipulate at least a 6 week regime of full strength dose of abx. Start there. Try and get her symptoms somewhat under control. Maybe even a steroid burst. If she responds again, that will be a lot of info. Second, I would work quickly to find a doc whom is experienced with neuro-psyche conditions associated with illness. Those swollen lymph nodes, My Pandas child had them until he was in the healing phase of Pandas. Always swollen. Not saying Pandas, exclusively, because swollen lymph nodes are indicators of a body that is sick. I cant underscore enough the importance of trying antibiotics to get the symptoms under control.
  14. I would start a higher dose of abx as if she is sick. Catch it quick... What I don't understand is why some of these docs wont do a simple strep test....
  15. I have used Howard Glasser's approach, The Nurtured Heart Approach, Transforming the difficult child'. It works wonders. Not complicated either. He has a video that I suggest. I will admit, It worked best on my non Pandas child. For my Pandas child, it did help me to learn how to stay neutral, since any emotion would exascerbate him.
  16. Pandas symptoms can become a pattern of behavior even after the flare is gone. The fact that he is able to "pull it together", like for karate or when something is purchased, or bribed is a big clue. Pandas does not work that way. When a flare is still at the root, it the behavior follows every set of circumstances..
  17. Pandas symptoms can become a pattern of behavior even after the flare is gone. The fact that he is able to "pull it together", like for karate or when something is purchased, or bribed is a big clue. Sounds a little manipulative. Pandas does not work that way. When a flare is still at the root, the behavior follows in some way in every set of circumstances..It is true that in another setting, Pandas kids can contain themselves to some degree, however, it will leek out to some degree, perhaps in a different way.
  18. My son as well morphed into an aggressive, bossy, controlling, and mean child when he was in flares. This aspect was one of the harder ones to watch. I think it is the inflammation at the dopamine receptors that can take credit for this. My ds is really such a sweet little pea. He is my one that says, "oopsies" when he drops something. He is very loving and still loves to cuddles. At school, and other social arenas, because of some of his big flares in the past, I know that he is viewed as a child whom is thoughtless, and a bully. This could not be further from the truth. But try explaining this to a mom whom your 8 year old son has just told their precious 5 year old to %%%%^###$! Between flares, he does go a lot closer to his baseline personality, depicting a kind child, but I must admit that some of those negative traits can crop up under stress or too much stimuli. I think that a lot of the pandas symptoms are still going to linger, showing expression from time to time while he is still healing. I also think that when somebody acts one way for several weeks at a time, it can also become a bit of a knee jerk response.
  19. Thanks Powwow. Yes he is much more allergic to the egg white. I am assuming it is the protein in the white....
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