Destinys_Mom

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...

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!

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!

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 have experienced this with your children?

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.

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!

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.

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!!

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 just loosened things a bit to allow the blood to drain out, or it may have not been related at all. It is good that you are going to ENT soon. My son had endoscopic sinus surgery and it was very beneficial. His PANDAS symptoms decreased SO much after the surgery. You can read my story in these links. PM me if you have questions. http://www.latitudes.org/forums/index.php?showtopic=8511&st=0&p=70352&hl=mucocele&fromsearch=1entry70352 http://www.latitudes.org/forums/index.php?showtopic=8648&st=0&p=71680&hl=mucocele&fromsearch=1entry71680 Also - has your daughter had an immune work up to see if she has any immune deficiencies like low IgA or low IgG s. pneumoniae titers? The MRI did show a a retention cyst in the right maxillary! The blood is coming from both nostrils? She has had so many changes and the hallucinations are what are the most frightening next to her seizure like movements (but without losing consiousness (sp)). They took heart off her OCPD meds b/c Dr say sometimes they aggrivate the PANDAS, but her hallucinations are worse than ever! If she has sinusitis then both sides can have inflammation. Do you have the MRI report? Does it say inflammation in both sides? I am just guessing here that there is some sinus stuff going on. Why did they do the MRI in the first place? MRI was ordered b/c of the "seizure like" activity she was presenting. EEG showed no seizures, MRI showed right side of brain inflammed? Also showed retention cyst on right maxillary. They then did more bloodwork and after her results came in and it showed her ASO to be 768, he then ordered DNASEB. I will find out the results Monday on that test. She has just been exhibiting alot of these symptoms for years now? I'm new to this so I asm still trying to gather all the information and advice that I can and I thank yall.

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 just loosened things a bit to allow the blood to drain out, or it may have not been related at all. It is good that you are going to ENT soon. My son had endoscopic sinus surgery and it was very beneficial. His PANDAS symptoms decreased SO much after the surgery. You can read my story in these links. PM me if you have questions. http://www.latitudes.org/forums/index.php?showtopic=8511&st=0&p=70352&hl=mucocele&fromsearch=1entry70352 http://www.latitudes.org/forums/index.php?showtopic=8648&st=0&p=71680&hl=mucocele&fromsearch=1entry71680 Also - has your daughter had an immune work up to see if she has any immune deficiencies like low IgA or low IgG s. pneumoniae titers? The MRI did show a a retention cyst in the right maxillary! The blood is coming from both nostrils? She has had so many changes and the hallucinations are what are the most frightening next to her seizure like movements (but without losing consiousness (sp)). They took heart off her OCPD meds b/c Dr say sometimes they aggrivate the PANDAS, but her hallucinations are worse than ever!

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?

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 immunologist and ENT address the sinuses before it turns into a big infection. It is interesting that your daugther's started with the punch in the head. Was her nose injured in with the punch? How soon after the punch did the bleeding begin? Have you had a doctor look up her nose to see if they can tell where the bleeding is coming from (that is - does it look like irritation in the nose itself, or is it dripping down from further up in the sinus?) No history of sinus probs? But MRI did reveal a retention cysts in right maxillary. Her nosebleeds started after the blow to the back of the head, no injury to nose directly. Her MD says its coming from further back than she can see? She sees ENT next week, so hopefully they can enlighten me more? Also, my daughter doesn't sleep at night, nightmare, hallucinations, stating her heart stopped and she becomes short of breath and her legs "lock up". Has anyone had these experiences? I am new to this and would appreciate al the help I can get. Thank you all!!

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! Nose bleeds haven't been a problem recently. I think she's only had 1 in the past year. If your dd ever picks her nose (which can be an ocd thing) a rheumatologist once told us that nose-picking can cause strep to be released into the blood stream....just something to be aware of! Is your dd on abs? Where are you located? Her MRI showed a retention cyst in the right maxillary and she is set to go to an ENT next week. Her MD said the blood is coming from further back than she can see (so not from the nostrils itself from a lesion)? They started after the blow? She is not on abs at this time, she just finished a 10 day dose a week ago. We are from Simmesport Louisiana and we go in a couple of weeks to a Pediatric Rheumatolgist in New Orleans.

Really? I am really curious to see what to do to help her? Thank you.

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 them like they are frozen stiff?