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Post by gillyp on Jan 31, 2015 9:25:01 GMT
So pleased you do not have to wait a long time for an appointment. I hope you get some answers and that any treatment is quick and effective. I've never heard of PANDAs either and will ask a friend who is a paediatrician if it's known of over here.
Hope you get your sweet daughter back very soon!
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toyboat
Shy Member
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Dec 13, 2014 21:03:29 GMT
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Post by toyboat on Jan 31, 2015 11:27:23 GMT
Please do read about PANS and PANDAS. my daughter is going through her second round of it - first was almost exactly a year ago. Both times it started with mild tics and escalated quickly with personality changes and LOTS of tics. She also had sleep disturbances leading up to when her tics started.
Her strep tests (including bloodwork) have all been negative. Many triggers can cause these symptoms. If it is a strep trigger it is PANDAS, with another trigger (or unknown trigger) it is called PANS.
Your doctor may not know about it or not "believe" in it.
My daughter is on a 10 day course of antibiotics. Both this year and last year she had a marked improvement within the first 2 days. We are on day 4 today and I am hopeful by day 10 all the tics will be gone.
The personality changes are very hard. I try to remember that her brain is inflamed and summon all the patience and kindness I have for her.
In some ways this current bout is scarier for me because it confirms that last year was not a fluke. I am concerned about recurrences and it coming back stronger each time (which is what usually happens).
Treating early with antibiotics seems to be key.
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oaksong
Drama Llama
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Jun 27, 2014 6:24:29 GMT
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Post by oaksong on Jan 31, 2015 11:35:53 GMT
It must be so frightening to see this change in your daughter. I hope they can diagnose her quickly. Hugs to you...
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Post by Spongemom Scrappants on Jan 31, 2015 12:29:18 GMT
Sounds like people here experienced with this phenomenon are giving you some good feedback and advice. I hope the doctor is able to confirm your suspicions and prescribe a course of treatment to reverse it. I'll be thinking of you. Let us know how the appointment goes.
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Post by ktdoesntscrap on Jan 31, 2015 12:55:41 GMT
I don't know and I admit I'm old school. After asking the hard questions without a response, I'd assume that it's a just a behavior thing and would not allow her to act like that. I wouldn't be asking if she wanted a bath or a shower, I'd be telling her what she's going to do. IMHO she needs to be taught about respect and being disrespectful would result in consequences. Yes, I was that mean mom Lots of people say this about children with autism. Harsh discipline does not solve everything. OP- Good luck I hope you can find some answers and have your sweet loving girl back full time.
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Post by Lindarina on Jan 31, 2015 13:00:45 GMT
PANDAS was the first thing that came to my mind reading your post. I see a lot of us had the same thought.
When my son starting having severe tics and behavioural problems, PANDAS was one of the things I had our doctor check. The tests came back negative, and in our case it's most likely Tourettes and it is triggered by Gluten sensitivity. If your daughters behaviour isn't caused by a Pandas or any other medical issue, I strongly suggest doing an elimination diet. My sons problems have opened my eyes to just how much diet and sensitivities can wreak havoc in our childrens bodies and how it can affect their behaviour.
I hope you find the answers you need for your family. I know how stressful this situation can be.
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Post by christine58 on Jan 31, 2015 13:39:54 GMT
Probably a long shot, but since this happened after her being sick, have you considered PANDAS? Or even something more simple like the sickness messed with her hearing, and this is how she's coping? I can empathize with much of your feeling, and wish you all the best, and answers sooner than soonest. Great point~~~~
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Deleted
Posts: 0
Apr 26, 2024 13:37:54 GMT
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Post by Deleted on Jan 31, 2015 14:53:55 GMT
Also see if he can test her candida yeast levels....we were negative for strep, but DD's CY was skyhigh and once that was treated the weirdness that we thought was PANDAS went away (tics, hitting out etc).
Hugs Mom...you are catching it quickly...It took us months to go through the system of possible Tourettes, cognitive behavior therapy for anxiety, anti-psychotic meds, etc with a neuro-pedi, a psychiatrist and many other specialists only to finally have the psychiatrist mention PANDAs and a pediatrician who believed it actually existed and tested for it and the other things (I think one was also a gluten allergy, but DD was negative for that also).
So if your pedi doesn't believe in PANDAS (and 6 years ago not many doctors did), keep looking until you find one that will at least test for it. And yes, a regular strep test will often come back negative --- it's a different type of strep that they test for. Many times the patient/parent doesn't even realize the child had that type of strep.
Hope you find answers quickly!
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Post by threegirls on Jan 31, 2015 15:20:35 GMT
You have received many great suggestions here! PANDAS was the first thing I thought of when I read your post. I'm pretty old school when it comes to parenting but the sudden change in behavior does not sound like a discipline problem at all. Trust your instincts and go to the doctor. Please let us know how things work out for your daughter. I hope you get your sweet little girl back soon.
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Dani-Mani
Pearl Clutcher
Posts: 3,706
Jun 28, 2014 17:36:35 GMT
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Post by Dani-Mani on Jan 31, 2015 15:24:12 GMT
I am working with a student with PANDAS and that was my first thought as well. Crossing my fingers you can get a diagnosis. Poor baby.
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Post by melodyesch on Jan 31, 2015 15:35:21 GMT
You've been given some good advice and I hope the doctor finds a cause quickly.
And I have to say, I don't have children and my only real exposure to children is my out-of-state 10 yr old neice. But I read a lot of threads because I am interested. And I'm always ALWAYS amazed at the support that is given here. Yeah, some of the threads go sideways but how amazing it must be to have this place to come to for suggestions, ideas, advice and sometimes just well wishes when a mother is worried sick about their child.
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Post by gotranch on Jan 31, 2015 15:39:16 GMT
My suggestion is to see a pediatrician also. I had not heard of PANDA either, so interesting. The frequency of autoimmune issues seems to be increasing in our population all the time. Hope you find some answers and she is back to herself soon.
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heatherx
Shy Member
Posts: 31
Jul 20, 2014 22:15:15 GMT
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Post by heatherx on Jan 31, 2015 17:01:47 GMT
Also see if he can test her candida yeast levels....we were negative for strep, but DD's CY was skyhigh and once that was treated the weirdness that we thought was PANDAS went away (tics, hitting out etc). Hugs Mom...you are catching it quickly...It took us months to go through the system of possible Tourettes, cognitive behavior therapy for anxiety, anti-psychotic meds, etc with a neuro-pedi, a psychiatrist and many other specialists only to finally have the psychiatrist mention PANDAs and a pediatrician who believed it actually existed and tested for it and the other things (I think one was also a gluten allergy, but DD was negative for that also). So if your pedi doesn't believe in PANDAS (and 6 years ago not many doctors did), keep looking until you find one that will at least test for it. And yes, a regular strep test will often come back negative --- it's a different type of strep that they test for. Many times the patient/parent doesn't even realize the child had that type of strep. Hope you find answers quickly! Thanks! I will add a note to check her candida yeast levels! Thank you everyone for you advice and support. This is what I love about this place!
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The Great Carpezio
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Something profound goes here.
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Jun 25, 2014 21:50:33 GMT
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Post by The Great Carpezio on Jan 31, 2015 18:08:15 GMT
I'm glad you are getting such good info. I didn't know about PANDAS either. My one twin has ADHD and has some behavior issues at school (normally off task, makes noises, oppositional about things that are too hard) WITHOUT meds. However, the last two years (K and 1) he has had an outbreak that was way out of character, even for him. Dangerously climbing, kicking the teacher, screaming, etc... Both times it lasted about two weeks. Both times the teachers didn't feel like he could control it. I know this year he has been mildly sick and then he got really sick at the end of the episode, which with a couple days away from school and Thanksgiving break, seemed to take care of it. I don't remember much about the year before, but it happened around the same time.
At home we had major consequences and lots of love. It felt like I was talking to a brick wall and nothing really helped. It just sort of got better on its own.
In hindsight, who knows? If it happens again, I'll be paying close attention to the possibility of PANDAS.
Akathy, I wish just being a hard ass worked on my son. Life would be much easier. I just wish people wouldn't assume all kids with behavior issues are not being parented well.
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heatherx
Shy Member
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Jul 20, 2014 22:15:15 GMT
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Post by heatherx on Feb 3, 2015 2:42:53 GMT
Update in OP
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Post by Crack-a-lackin on Feb 3, 2015 2:48:28 GMT
Good for your husband for going back in. I hope you get answers soon - I can't imagine the frustration and fear of not knowing what's wrong.
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TankTop
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Refupea #1,871
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Jun 28, 2014 1:52:46 GMT
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Post by TankTop on Feb 3, 2015 3:07:53 GMT
I would call another pediatrician and go while waiting for the specialists. Fight for your girl. I know you will, but sometimes we are made to feel bad for doing it. Like we are overreacting. I give you "permission" to be pushy.
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Post by littlefish on Feb 3, 2015 3:11:43 GMT
I had never heard of PANDAS before this thread. Prayers for continued wisdom and guidance!
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heatherx
Shy Member
Posts: 31
Jul 20, 2014 22:15:15 GMT
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Post by heatherx on Feb 3, 2015 3:15:38 GMT
Good for your husband for going back in. I hope you get answers soon - I can't imagine the frustration and fear of not knowing what's wrong. I was pretty proud of him! I would call another pediatrician and go while waiting for the specialists. Fight for your girl. I know you will, but sometimes we are made to feel bad for doing it. Like we are overreacting. I give you "permission" to be pushy. Thanks! I've been talking to friends all afternoon to find another Pediatrician. We aren't super happy with the one we saw. The referrals were good but I didn't feel like she really tried to understand what we've been going through.
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pudgygroundhog
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Jun 25, 2014 20:18:39 GMT
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Post by pudgygroundhog on Feb 3, 2015 3:21:00 GMT
I glad you got the ball rolling. I hope the referrals work out for you and you can get an answer soon.
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Post by scrapnatya on Feb 3, 2015 4:29:41 GMT
I know personally 2 young girls this has happened to. Sending lots of healing your way.
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Post by beebee on Feb 3, 2015 4:31:23 GMT
Flu definitely triggers symptoms if a patient has Pans. Even just exposure to flu. Also, you might want to check her Mycoplasma pneumonia levels. It's another common trigger for OCD and tic symptoms.
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Post by ntsf on Feb 3, 2015 4:35:53 GMT
stanford is the best..you should get some answers there...prayers for all of you
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Post by dulcemama on Feb 3, 2015 5:22:31 GMT
Thank you for the update. I have been thinking of you and your DD. I hope you get some answers soon.
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zella
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Jul 7, 2014 19:36:30 GMT
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Post by zella on Feb 3, 2015 6:43:15 GMT
What a horrible situation. I'm so sorry you're dealing with this. My thoughts were immediately PANDAS. Pursue this. Talk to experts. Don't give up. And if it is PANDAS it can be cured.
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blue tulip
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Post by blue tulip on Feb 3, 2015 12:38:40 GMT
I'm glad that you have an equal partner in this, your husband, who went back and really sought answers when he thought you were being brushed off. hopefully you get some info soon to get your sweet little girl "back"!
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Post by alibama on Feb 3, 2015 12:45:37 GMT
The things I learn here! I never even heard of PANDAS before.
I am hoping OP that they figure this out soon for you!
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Post by threegirls on Feb 3, 2015 13:19:40 GMT
Thanks for giving us an update.
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Post by bianca42 on Feb 3, 2015 13:32:50 GMT
I hope that you get answers soon.
I just read the article on PANDAS that someone linked and am wondering if my 5 year old is going through that now. He had Fiths disease in January. His daycare teacher talked to me last week and she said that his behavior at school has changed dramatically over the last few weeks. He's suddenly having a hard time focusing and being very defiant and mean to his friends. At home he's constantly being sent to his room all of a sudden because he won't leave his big brother alone and he's being defiant with DH and I. He's also become crazy-loud ALL.THE.TIME.
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Post by leslie132 on Feb 3, 2015 13:46:00 GMT
I had thought Pandas as well. I'm so glad there are so many people here who can throw out ideas. I know that sometimes people worry about playing doctor, but I look at it as people helping narrow done the field of what if's. I think your family is on the right track.
I went through motor ticks for my son. And let me tell you I was a wreck. It started as eye rolls and moved to neck jerks. I was a basket case and blamed myself. It was such an emotional strain for me, as I had an older nephew who had these motor ticks, but his were so much more severe. I think that is why I was so worked up. I'm glad to say it has been over a year since we have seen anything like that!
I love that both yourself and your husband are really pushing for answers. And good for him not backing down! I pray you get answers and guidance for your little girl!!
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