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loandmo

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  1. Has anyone ever seen a sibling of their PANDAS/PANS child seem like they were starting to exhibit symptoms and then they resolved themselves? My daughter every now and then I swear I see something, and then a few days it's gone. I mean it disappears without any intervention. Her clothes will bother her (slight sensory issues since birth) or she will just sort of be off. Like she's npt 100% there and then a couple days later she's just back to her normal self. We are day 10 of chicken pox and she is off (as I have posted elsewhere). We took her for a strep test. Negative. My pediatrician who has always been great with my PANDAS son likened it to possible kickback of the virus. His analogy was it was like she's been underwater and her body has to catch its breath. Or like damage is being repaired and to try and see if it resolves itself. She is annoyed that her bed isn't made correctly, but that's something that isn't new to us. She has always liked a neat bed (as I remake mine every night because I also have a thing about sheets). But she's not angry it's not made yet. I told her I would help her when I was done doing a few things and she said ok. In your opinion could this be some quirk of hers that could be just a little exacerbated due to inflammation? I told my husband that if I see it not going away or increasing that I will call and get abx. I mean I know my kid best, but I also really love and trust my pediatrician. He has been great with my 9 year old who exhibited overnight TICS, anxiety, and OCD in 2008. He is doing great. Only has a mild tic from time to time. Thanks for your time.
  2. Thank you so so much for your reply. I’m basically just sitting here waiting for the other shoe to drop. I’ve read so much about vaccine injury from the Varicella that I declined it hoping my kids would get it naturally. We decided if they didn’t have it by 10 we would vaccinate. We did get it naturally. My kids were exposed and my PANS floated through it. But then again he had a mild mild case (75 pox). She has probably 400-500. I don’t even know if severity would play into it. I do however appreciate you reminding me that it is a mild illness. Her sensory issues have kicked up a notch and she seems a little off but nothing we haven’t seen before. I’ll keep crossing my fingers. Thanks again.
  3. Hi there, I have been here before with my 9 year old son who is PANS and doing tremendously. I am back to discuss my 5.5 year old daughter who is currently on day 5 of the chicken pox. She has had no Varicella booster. As my son did not either. My son came down with it and had a very mild case. Two weeks later my daughter broke out in the rash but hers was more severe. A little background to her...strong willed, tantrums, some sensory processing but nothing that we’ve had to seek treatment for. Obviously my fear is that this Illness is going to be the trigger for her onset and we are going to go down this path once again. Did anyone’s kids have the chicken pox and have that be their initial trigger? If so when did you start seeing behavior. I know with this condition you tend to be hyper aware of everything your child does. I just feel like I am seeing a difference in her. Just little things. Baby talk. Very animated conversations where we’re not really talking about anything. Just seems like someone else is driving. I can feel it. Any input would be greatly appreciated. UPDATE: well we are on day 9 of the CP (she is healing very well) and today we made “the call” to the pediatrician. My daughter has always had some sensory issues and quirks about her blankets being straight....minor things. And to be honest I have seen some of PANDAS like behavior in the past. Her talking in a different voice. Conversations where I can’t connect. Those would wax and wane but never for more than a day or two. The last few days were seeing an increase in these and other odd behaviors. So I am bracing myself to go down this road again. Part of me feels like maybe she’s always had this and now it’s just flaring and it will calm down...or we’re at the beginning of what will be a whole other ride. I don’t really know what I’m asking...I just know that I’m terrified and any input from anyone would be helpful. I hate this disease. I hate that my kids have to struggle through this. I hate not being able to look at my child and question every head turn or blink or behavior. So yeah. Im spinning.
  4. loandmo

    ugh...I'm back...

    Thanks so so much...well....tics are back...started coming back on the amoxicillin which was so helpful in the beginning. I was so hopeful. We switched from Amoxicillin to Augmentin 2 days ago and tics are coming back stronger. He is grunting blinking and deep breathing with a shoulder shrug. Ped wants to do Augmentin for 3 months. Obviously if this doesn't work we will try something else...I am so incredibly exhausted and so terrified to read anything else. I am so scared that I am going to lose my little boy. Why is this happening?
  5. Well it's been a year...and this was my original post...7/2013 About 2 weeks ago I started noticing my 4 1/2 year old son was doing some blinking. Nothing terrible just noticed by me and my husband. About 5 days later my daughter came down with what we thought was hand foot and mouth...she was sick for a few days. Three days after she was sick my son came home from school complaining of a headache and running a fever. The fever spiked and he had an awful awful headache. His fever wouldn't go under 103.2 with both tylenol and ibuprofen. The following day he had a fever...around 101 and then the next day it fell off. His class was exposed to hand foot and mouth and i thought "well...that is where it came from". So he was doing some blinking and that was about it and then yesterday his blinking was becoming more severe and seemed to be more frequent with a bit of a head turn. We called his ped and he said bring him in for a strep test. It was negative but he put him on 500mg of amoxicillin 3 times a day for 10 days. After one day his tic doesn't seema as severe...but it has moved from his left side of his head and to the right...tonight before bed it picked up just a little. The only other symptom I saw was yesterday he was sad. He is not showing any OCD issues yet. It is mainly the motor tic. Does this sound like PANDAS? Or is it maybe coinciding with a transient tic? Since we caught it early will his symptoms be easier to treat or should I expect things to get worse in the upcoming weeks. I feel so bad I can't help him. We are going to do BW once we are through with the ABX. But I am going crazy... Cut to the past month of tics slowly getting worse...we did a strep test on 7/31/14 and it was negative and doc thought maybe it was transient (my husband had tics as a child). So we brought him home...and it sucked. He was so uncomfrtable and hard blinking and throat clearing and just agitated...I called the nurse at the ped office crying and stressed and she said that we should give abx if it woul dmake me feel better and since my son is a puzzle it could be something we check off the list. Well after 12 hours his tics decreased rapidly...it's been 4 days and he is about 95%. I find it strange that it took a year for this to happen again...does this mean I am just at the beginning of a tough road? We had titers checked...wtih no fidings and we had lyme checked with no findings. I'm confused and am trying to read all of these posts but feel so stupid. I don't understand because I am at the beginning. Is it good we have had a year between major flares? He starts kindergarten in a few weeks and I am petrified... I am so so so sorry for the long post...I am just confused and scared and want my kiddo to be my kiddo again...
  6. Thanks so much. Today has been challenging. He was afraid to go to the grocery store and did a lot of crying and has developed this weird audible breathing tic. I called his ped and we are going in tomorrow to be seen and they think it is best if we make an appointment with a neurologist. It may take time to be seen so they think it is best to have an appointment just in case. I am so sick to my stomach. I feel like this connection we had is missing. Maybe it is just me being hyper sensitive but I feel like I am falling apart. Thanks for all of your help.
  7. loandmo

    new here...need help..

    Thanks so much. Today has been challenging. He was afraid to go to the grocery store and did a lot of crying and has developed this weird audible breathing tic. I called his ped and we are going in tomorrow to be seen and they think it is best if we make an appointment with a neurologist. It may take time to be seen so they think it is best to have an appointment just in case. I am so sick to my stomach. I feel like this connection we had is missing. Maybe it is just me being hyper sensitive but I feel like I am falling apart. Thanks for all of your help.
  8. loandmo

    bloodwork question

    what should I ask for when my child goes for his blood work? I just want to be prepared...
  9. About 2 weeks ago I started noticing my 4 1/2 year old son was doing some blinking. Nothing terrible just noticed by me and my husband. About 5 days later my daughter came down with what we thought was hand foot and mouth...she was sick for a few days. Three days after she was sick my son came home from school complaining of a headache and running a fever. The fever spiked and he had an awful awful headache. His fever wouldn't go under 103.2 with both tylenol and ibuprofen. The following day he had a fever...around 101 and then the next day it fell off. His class was exposed to hand foot and mouth and i thought "well...that is where it came from". So he was doing some blinking and that was about it and then yesterday his blinking was becoming more severe and seemed to be more frequent with a bit of a head turn. We called his ped and he said bring him in for a strep test. It was negative but he put him on 500mg of amoxicillin 3 times a day for 10 days. After one day his tic doesn't seema as severe...but it has moved from his left side of his head and to the right...tonight before bed it picked up just a little. The only other symptom I saw was yesterday he was sad. He is not showing any OCD issues yet. It is mainly the motor tic. Does this sound like PANDAS? Or is it maybe coinciding with a transient tic? Since we caught it early will his symptoms be easier to treat or should I expect things to get worse in the upcoming weeks. I feel so bad I can't help him. We are going to do BW once we are through with the ABX. But I am going crazy...
  10. About 2 weeks ago I started noticing my 4 1/2 year old son was doing some blinking. Nothing terrible just noticed by me and my husband. About 5 days later my daughter came down with what we thought was hand foot and mouth...she was sick for a few days. Three days after she was sick my son came home from school complaining of a headache and running a fever. The fever spiked and he had an awful awful headache. His fever wouldn't go under 103.2 with both tylenol and ibuprofen. The following day he had a fever...around 101 and then the next day it fell off. His class was exposed to hand foot and mouth and i thought "well...that is where it came from". So he was doing some blinking and that was about it and then yesterday his blinking was becoming more severe and seemed to be more frequent with a bit of a head turn. We called his ped and he said bring him in for a strep test. It was negative but he put him on 500mg of amoxicillin 3 times a day for 10 days. After one day his tic doesn't seema as severe...but it has moved from his left side of his head and to the right...tonight before bed it picked up just a little. The only other symptom I saw was yesterday he was sad. He is not showing any OCD issues yet. It is mainly the motor tic. Does this sound like PANDAS? Or is it maybe coinciding with a transient tic? Since we caught it early will his symptoms be easier to treat or should I expect things to get worse in the upcoming weeks. I feel so bad I can't help him. We are going to do BW once we are through with the ABX. But I am going crazy...
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