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Destinys_Mom

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  1. I went to the article where you originally posted the PANDAS ribbon and the picture is no longer there? Is there anyway you can put it on here again? I would like to use it as my background for my computer and my cell phone. I would appreciate it...
  2. Wow! Thats alot! I didn't realize until reading this forum that there were so many different other diseases or infection our PANDAS children have to deal with also? I have a feeling I am going to need all of yall backbone to see me through this...Thank God he finally relieved some relief to some of the symptoms. Thank yall!
  3. OMG! I can't tell you how much your reply has meant! She is paralyzed by this. She will have these "fears" (for lack of better words) to the point that she throws up from the anxiety (i am guessing). It is horrible to watch her go through this...what did you do? I just called her pediatric neurologist and I am awaiting a call from him shortly, but I fell so useless to her when she is seeing these things. Again, thank you for your reply!
  4. My dd11 has been suffering with something that I need to know if you parents have had experience with your PANDAS children also?? Ok, as hard as this is, here goes: She is telling her Father and I that she is seeing someone in her room and he tells her things. We have been in her room when she says he is there and there is no one that we see? I am really having a hard time typing this through the tears, so please bare with me. She is terrified to sleep in her room, much less even go in there. It , of course, is more detailed than this, but before I go any further, I need to know if any of you
  5. My dd11 has the exact same symptoms. She sometimes tells me that it feels like "my heart stops and I can't breath". She gets a terrible headache and then is completely exhausted after the fact. It is very scary to watch her through this, but we have a Pediatric Cardiologist appt on Monday 21st. I am hoping this will bring some insight to what is going on with my beautiful blue eyed baby girl. This is such a hateful disorder/disease our babies have.
  6. Awesome! I will be your best customer, LOL. After you get everything up and running please post for us. My dd11 loves the silly bands, so I will defintely get some of those too! Your talent is a blessing from God!
  7. I can;t tell yall how much I appreciate all your advice. I have a numbing feeling that my 9 yr old son has this too bc of his symptoms. I am planning to have his bloodwork done Monday if all goes well. This week is crazy as I go for Pre-Op on Monday and surgery prob Friday. So I have to "heal fast" as we have a Pediatric Cardiologist appt Monday at 8:30.
  8. I think that is absolutely beautiful!! I want MANY of them for myself, my family and my friends who have been helping my family through this. That is such a wonderful idea. I have a friend who does the printing on shirts and so on and I would love to talk to her about helping if you would be ok with that? But it is amazing the way everyone on here pulls together. God Bless all of Us!!
  9. Oh wow! I thought we were the only family with this problem! Do you have the MRI report? The retention cyst is probably a retention cyst in the maxillary sinus. I believe this is basically the same thing as a mucocele, which was what my son had in his ethmoid sinus. His was nasty because it had been there for a year or more and was actually eroding the bone to his eye. Hopefully your was caught sooner. Yes - this would signal sinus problems and could easily be underlying the nosebleeds AND the PANDAS symptoms. Is the blood coming from the right nostril? The blow to the head may have j
  10. Oh wow! I thought we were the only family with this problem! Do you have the MRI report? The retention cyst is probably a retention cyst in the maxillary sinus. I believe this is basically the same thing as a mucocele, which was what my son had in his ethmoid sinus. His was nasty because it had been there for a year or more and was actually eroding the bone to his eye. Hopefully your was caught sooner. Yes - this would signal sinus problems and could easily be underlying the nosebleeds AND the PANDAS symptoms. Is the blood coming from the right nostril? The blow to the head may have j
  11. My PANDAS daughter has prob 8 warts that started about 2 years ago also? I am curious as to whether they are linked or not also?
  12. My son has lots of sinus problems and has had periods of months at a time with daily nosebleeds. Last year (when he was finally diagnosed with PANDAS) we noted that the nosebleeds stopped when he started on the right antibiotic. Now I use nosebleeds as one measure of his overall sinus health. If we see nosebleeds (more than once in a one week period), then I start to pay attention to other PANDAS symptoms that signal sinus flare up (urinary frequency, difficulty sleeping at night), along with standard sinus symptoms like stuffy nose and change in taste sensation. This helps the immunologis
  13. My PANDAS dd has had nosebleeds. In fact she went through a 1-2 week period a couple of years ago where she had them on a regular basis (almost daily?). Some meds could cause clotting problems (eg. advil, fish oil, prozac). Also, a respiratory infection (lots of sneezing, nose blowing) can cause more nosebleeds. But also nosebleeds can be normal in kids (or releated to dry air). I got nosebleeds from time to time when I was a kid. It does seem my PANDAS dd has gotten a lot more nosebleeds in her life than my non-pandas dd. But, I don't know if that has anything to do with PANDAS!
  14. Really? I am really curious to see what to do to help her? Thank you.
  15. Could have sinus problems and the punch loosened something? Is she on any medications? My daughter sometimes gets nosebleeds- but especially when she gets steroid nasal sprays. I don't understand what you mean by the "aggression or lack thereof." Is your daughter aggressive? Or does she have a lack of aggression? She is on Klonopin .5 mg at bedtime but no nasal sprays...Aggression of nosebleeds: if they worsen, tend to go and come, or a one time situation? Also does any of yall babies ever complain of their legs "locking up" as in, stiffing to the point of not being able to move th
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