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Everything posted by Jen85

  1. I am in shock I had to log back on here. My last post was in spring 2013. My now 9 year old daughter has no problems in what feels like forever. Suddenly this past Friday the separation anxiety and vocal tics appeared out of the blue. I hadn't heard her little vocal tic since her last flare up and I immediately knew the PANS was back. Her sister had a sore/swollen throat earlier that week and my daughter never shows symptoms of sickness, she never gets anything like other kids but instead it seems to rear it's ugly head with ocd/tics/anxiety. I feel defeated as I thought puberty kicking in made this all a thing of the past..... The good news is, since we've been around this block many times, she already remembers coping strategies and although it hurts to see her in such agony with the intrusive thoughts and fears.. she is handling it better at 9 than she did at 3,4,5,6. No insurance until September so I can't confirm if it's strep or the pnuemonia bug. (Shes had it caused by both before) Sigh.
  2. So I just sent my 5 year old off to Kindergarten today who is having her 2nd flare up this year. A nasty virus swept through the school and most of the kids have been out of class for the last 2 weeks. Of course, she does not display symptoms of the virus like other kids.. instead.. full-blown ocd/anxiety/tics overnight. But no cough, no sniffles, nothing. I could not get her to go to school Monday or Tuesday. She refuses to eat and she can't explain why. If I put her in the car to go to school she throws up fluids everywhere and shakes. Everytime she has a flare up the stress on me and her is just too much. Is it really worth it? And today I forced her to go into a classroom full of germs and sickness which no doubt will just continue to make her OCD worse. Why? I am so tempted so sign her up for the k-12 online schooling for next year. She will still be enrolled in public school but she can do it at home. I could take the stress off of both of us. PANDAS aside, my child is gifted and from I hear the program is getting cut next school year. She reads and comprehends (she gets tested) at a 4th grade level and she is a Math whizz. She is far beyond all the other students in the class and they do not have the funds or the means to give her more challenging work. So I have that in my mind as well, and I keep thinking why am I forcing her to go to school where it's not even worth her time to be there? The homeschool program they have they can have her work above her grade level with out having her actually move up a grade level. I don't know, I am just confused and needed to vent a little. I just don't know why I am putting us both through this.
  3. For those of you whose children take Vistaril (Hydroxyzine) for Anxiety, what is the dosage and how often do you give it? My daughter is 5.5 and I requested it for her pandas induced anxiety to see if it would help. She prescribed 10 to 15mg every 8 hours. My insurance nearly denied it because it said it was a HIGH dosage.... but everywhere I read online says 50mg over divided doses for under 6.. So that is really conflicting.. Just curious what dosage pandas kids were prescribed.
  4. Last year at pre-school when her PANS flared up I did try sitting outside her classroom, but it made her worse. She had to constantly check I was there. She does better with a swift hug & kiss. If I am confident she can go, she is more confident she can do it. But she will still cry through out the school day, mainly when switching activities. And that is part of the reason I am still making her go, even on her worst days, is that I don't want "Mr. Worry" to win..... But some days it's just so hard.. I just want to take her out for a few weeks... let the abx work.. and reduce stress...
  5. Thank you Dedee for your insight! I agree.. I just get nervous at keeping her at home because I don't know how many days she can legally miss (even with a doctors note).. I hear horror stories about parents going to jail for truancy so it scares me! She's only missed 3 or 4 days the entire school year. Keeping her home seems to INCREASE her anxiety.. because she knows she's suppose to be at school. So if I keep her out I would have to lie to her and say school is cancelled or something! I keep hearing about this allergy medicine that also helps with anxiety.... Visitril? I wonder if that's worth talking to her ped about. I don't want her to go on anything serious because I know she will be better within 6-8 weeks if this is like her previous episodes.. and I don't want to put her on Zoloft year-round for such acute anxiety.
  6. So we're in week 2 of flare up for my DD age 5. She's on day 3 of antibiotics. Things are SO hard around here. Main stressors are just commitments.. like school. She wants to go but her anxiety is so bad about everything she won't eat.. and the little I can get her to eat she will vomit all over herself before school. She physically shakes and she just looks MISERABLE. So.. all morning I see her ocd/anxiety building up and building up... I get her dressed for school.. she pukes up her breakfast on herself.. change clothes... then we're 2 minutes away from the school and she does it again. I have to drive her back home to change clothes/brush teeth. Meanwhile she's screaming she doesn't want to go... clinging to me for dear life. What am I suppose to do? On days like this I just don't want to take her.. I want to take her far far away and leave all our commitments behind.. and just give her the time she needs to heal from this. I know once the infection is gone she will be back to her happy smiling self again. Happiness for both of us right now is just staying home. Not going anywhere. There is only 6 or 7 weeks of the school year left and I want her to graduate from kindergarten.. but I have no idea how much more of this I can take everyday.
  7. So.. as I've posted before... my daughters pans/pandas flares up EVERY spring like clock work. Only in the spring. Her pediatrican couldn't give me an answer but I was thinking... Do allergens lower her immune system and therefore make her more susceptible to a pandas episode? Maybe she is allergic to something in the spring that just tanks her system...... I am wondering how I could prevent it, if that's the case?
  8. Is it common to have a low grade fever during an exacerbation? My daughters OCD/Anxiety/School refusal came on suddenly monday correlated with a low grade fever. Today she has a low grade fever of 100.3, flushed cheeks and is actually one of her worst days so far. She keeps repeating the same thing over and over and she doesn't seem "there".. also started a throat clearing tic this morning. She's on a 5 day steroid burst but no antibiotics yet. Her Nuero appointment is on Monday and I am assuming she'll prescribe some while we wait for lab results. Also, how do you get treatment quickly for your child if the specialist they see is VERY hard to get into? We were lucky to get an appointment on Monday, otherwise would have had to wait until MAY! If they need antibiotics.. how do you get them quick enough if appointments are hard to come by?
  9. I took my 5 year old to her pediatrician while we wait for her nuero appointment. I asked if we could treat her for allergies as an "experiment" as her OCD only appears in the spring. She prescribed a 5 day course of prednisolone, zyrtec and nasal spray. All her meds were given a few hours before Kindergarten started. She had a melt down before school not wanting to go which is typical during an exacerbation. I had to peel her out of the car and she was just a wreck. Was very hard to drop her off today. I expected her to be a mess when I picked her up.. but.. SHE WAS HAPPY. CALM. She asked to go to Mcdonalds to play, I gladly took her. She was so calm and anxiety free. I certainly wasn't expecting any improvement so soon (if at all..).. So far this afternoon she has been great, doing her homework, playing, etc. Drastic difference. Coincidence? We'll see what happens after her 5 day course.
  10. My daughters Pandas has starts in March un-related to strep and is completely gone by June for the last 3 years. With out any intervention or antibiotics it goes away on it's own. Does anyone else have a similar experience? With my research I seem to read a lot of cases where it's on and off the whole year. Also, after it's over she is 100% normal again with nothing lingering.
  11. Thank you for all your advice. Right now getting her to school isn't the problem but something will trigger her to start crying while she is at school and the teacher can't calm her down. So she ends up sitting in the nursing station wanting me. But she physically shakes and makes herself very sick. When she was younger something would trigger it, for example, the water fountain. One of her irrational fears was that the water was going to take her skin off. When she is not having a pandas episode (march through june) she has no problem going to school.. infact, she doesn't seem to remember what goes on during her pandas stuff once it's cleared up. It's really like jeckle and hyde! But the fact that it starts in March (when it gets hot here.. we are in phoenix) and is gone by June.. really makes me feel that there is an environmental factor involved. Could some pollin from a desert tree be triggering all this? Is that even possible? She doesn't outwardly show allergy symptoms though but she never has symptoms of strep or myco p. either. One thing we have never tried is steroids/allergy medicine.. Now I want to talk to her pediatrician about steroids before we go on the antibiotic route again.
  12. When she was 3 it was strep, when she was 4 it was Mycoplasma pneumonia, and I have to wait until Monday to figure out what it is this time. But you are right, it sounds like some allergy related? But could allergies cause something this severe? Her nuerologist, Dr. Alarcio, said it wasn't anything to do with allergies. But the fact that it is every March like clockwork is just the strangest thing. But her symptoms are completely debilitating. When she was 3 she would repeat the same question over and over as if she had Tourrettes or something? Every year it completely turns the whole family upside down for months. She is a completely different child.
  13. My daughters PANS or PANDAS is back, as predicted, as this is the third year in a row it's reared it's ugly head in March. She's had an episode in March at age 3,4 and now 5. Comes on very sudden, literally overnight, suddenly fearful of things she's never been scared of before, has extreme separation anxiety, asks repetitive reassurance questions, only talks about one subject, etc. As she gets older it looks a little different but I can immediately tell the change in her. When she was 3 it lasted from March to and slowly faded by July. Last year from March and 100% better by June. So, I expect about 6 weeks of the worst before it seems to get better. My question is.. how do I keep her in school? Or do I take her out? She can't stay in the classroom she cries the whole time. Therapy doesn't do much. The only thing that "cures" it is time and then when the episode is done she is completely 100% back to her normal self again.
  14. Hi All, First of all I just wanted to say I don't wish these circumstances on anyone but it is a relief to know I am not alone with what my daughter, aged 4 is going through. A little back ground: Last Spring when she was 3.5 years old, out of the blue, my daughter started repeating the same question over and over (related to a sudden fear something was wrong with her foot). If it were possible to count how many times she'd said it, It wouldn't surprise me if it was in the thousands per day. Every moment of everyday she spent checking her feet, unable to wear shoes. Before we knew it we were home bound. The episode lasted from April to Late Summer. She was diagnosed with OCD from a child psychiatrist. I didn't know about PANDAS at the time until I spoke with the school psychologist the following fall. He thought it sounded like it, but she never had strep that I was aware of. From the beginning of the last school year until this April (again) she was back to her old self. Then out of the blue on April 1st, the OCD came back. The same exact fear as last time. The repeating, the questions and the fears all came flooding back. She developed rituals with everything. We were home bound and she could not function at school at all, so I pulled her out. She would not touch water for fear it would take her skin off, could not wear shoes because she took them off every minute to "check". Knowing about PANDAS now I contacted her pediatrician who did a throat culture for strep but it came back negative. She referred us to a neurologist. The next step we were going to consider Zoloft because of how much her life deteriorated. She was nut functioning like a normal 4 year old should.. not being able to leave the house or think about anything other than her obsessions. Well, the neurologist did a lot of lab work and all the strep titers came back negative. However, it showed an active or recent mycoplasma pneumonia infection as the levels were very elevated according to the nurse. I do not have a copy of the labwork yet. My daughter hasn't been physically sick for a very long time.. Not even a sniffle for at least a year or more. However, the Dr. wanted her to get a Chest X ray despite not having symptoms. Is it possible to have an active infection with no symptoms? Also, the start of the episode was April 1st and by the beginning of June she has been back to her old self again. Like magic. It's like it slowly, gradually got better and now she is smiling and can't wait to start school in August. She is a completely back to normal. I am baffled. Back in April it felt like my world was ending, our lives were so completely turned upside down that It felt like it would never get better and that she'd never function normally again or be able to go to school. So now, I am wondering if the mycoplasma infection could have caused the most recent outburst? Or, is it a coincidence and she has regular "OCD"... We have a follow up appointment in August so I guess we'll see what the Neurologist has to say. It is hard to live with this fear.. wondering when it's coming back.
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