Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Belinda-We faced a similar situation with Anne, who likewise was very reluctant to have bloodwork done. Her acute illness was far enough removed from the diagnosis of OCD that her pdoc felt it was not going to add much to get the blood work done. I don't know...now we're wondering about empiric 'strep-protective' amoxicillin treatment since Anne seemed to get better recently on amoxicillin. Would it change therapy at all for your daughter? What does your pdoc say? I'm not sure this was very helpful, but I know what you're feeling- (Ohio) Anne (12, OCD) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 > >Belinda-We faced a similar situation with Anne, who likewise was >very reluctant to have bloodwork done. Her acute illness was far >enough removed from the diagnosis of OCD that her pdoc felt it was >not going to add much to get the blood work done. I don't >know...now we're wondering about empiric 'strep-protective' >amoxicillin treatment since Anne seemed to get better recently on >amoxicillin. Would it change therapy at all for your daughter? >What does your pdoc say? >I'm not sure this was very helpful, but I know what you're feeling- > (Ohio) Anne (12, OCD) I don't THINK it would change therapy at all for her it would just, I think, mean she would be put on antibiotics at the onset of the ocd sypmtoms next time. But would still see her therapist. Is there a reason why they can't just put her on antibiotics and see if they help i wonder? I just so dread putting her through anymore. I hate to admit this but i have no idea what pdoc means? LOL Belinda _________________________________________________________________ MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Belinda, Poor Madison, poor you. What an awful experience. One of my daughter 's (age 12, severe OCD and bipolar) very worst fears is having a blood test or a shot. In the past, it has taken 3 people to hold her down to get bloodwork. It's awful. Right now, the pdoc put her on trileptal as a mood stabilizer instead of depakote or lithium in part to avoid the dreaded bloodwork. worries regularly about getting a blood test or shot. Does your doctor have an opinion about whether or not she needs the bloodwork? Good luck with the situation. Miriam in NY > > I took my daughter ( Madison 7) tonight for bloodwork to see if her > titers were elevated to see if she could be diagnosed with PANDAS ocd. I > have my suspicious that she may as her OCD symptoms went away so fast > compared to what it was doing to her.And she has a few of the other > conditions of pandas ocd the only one she does not have that I can tell is > hyperactivity or fidgitiness. However she faught like I have never seen her > fight ( and i have seenher give somegood ones) and even after 4 people > trying to hold her down she won the fight and they couldn't drawl the blood. > They gave me a form to get it done at a lab where they will strap her legs > and arms down and take it. I do not want to go to this extent. Should I? Is > it so worth it to know at this point if her levels are elevated or can I > wait till her symptoms come back and just ask for an antibiotic and see if > the stymptoms get better? THis in itself was an awful experience for us both > i can't imagine what the other one will do to her. Ughhh belinda > > > > > > > > > > > _________________________________________________________________ > Help STOP SPAM with the new MSN 8 and get 2 months FREE* > http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 :39:20 -0000 > >Belinda, >Poor Madison, poor you. What an awful experience. One of my daughter >'s (age 12, severe OCD and bipolar) very worst fears is having a >blood test or a shot. In the past, it has taken 3 people to hold her >down to get bloodwork. It's awful. Right now, the pdoc put her on >trileptal as a mood stabilizer instead of depakote or lithium in part >to avoid the dreaded bloodwork. worries regularly about getting >a blood test or shot. Does your doctor have an opinion about whether >or not she needs the bloodwork? Good luck with the situation. >Miriam in NY > Hi Miriam I have read about sarah and often wished i was more knowledgeble to respond and help you. I am sorry you are having such a hard time and hope you guys can find some peace soon. What you say is exactly what i am afraid of I am afraid this too will turn into something that she can't get out of her head, she already has enough going on in there, I just don't want to make it worse. Belinda _________________________________________________________________ The new MSN 8: advanced junk mail protection and 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Does your doctor have an opinion about whether > >or not she needs the bloodwork? Good luck with the situation. > >Miriam in NY Not really Miriam, i seem to be educating her about OCD , she is very receptive to learning about it and interested but i seem to be on my won with the decision making. Belinda _________________________________________________________________ Protect your PC - get McAfee.com VirusScan Online http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 Hi Belinda, we've been through this too, and the unfortunate thing is, when Kel's strep antibodies are high=her OCD symptoms are high, this is when she is hysterical at the idea of a blood draw, the point of which is of course to determine if her strep titers are high. If she is less upset at the idea and able to cooperate with the blood draw, I almost know before the lab reports come back that her strep antibodies are not elevated. I wonder if you are confused though about PANDAS and if the bloodwork could help your daughter. If your child has an active strep infection, this can be determined with a throat culture, and if positive her strep infection would be treated with a course of antibiotics. This is helpful because it helps kill the strep infection and because it can shorten up/dampen your daughter's production of antibodies against strep. It's these antibodies to strep that your child's immune system makes in response to the strep infection that cross react in the brain and cause the abruptly worse OCD/tics in PANDAS OCD. PANDAS OCD is an autoimmune process. Circulating antibodies to strep can remain at a high level for a long while after the strep infection that kicked off this immune response has cleared, so finding elevated strep antibodies DOES NOT MEAN a child has a current strep infection (and so needs antibiotics). Antibiotics can't decrease antibody levels, they can only kill the infecting bacteria if present. Finding high strep anitbodies only means that the child had a strep infection at some point in the past. PANDAS is diagnosed by abruptly worse OCD/tic symptoms AT THE SAME TIME the strep antibodies are at a high level, that then fall gradually as the strep antibody levels fall. In our experience the only " good " to come of doing the ASO titer blood draws was to confirm her doctor's suspicion that Kel's OCD was reactive to elevated strep antibodies. There is no treatment based on the outcome of this blood draw that would ease your daughter's symptoms, just the usual SSRIs and CBT/ERP. Based on finding this association though, Kel's pediatrician did at one point put her on low-dose long-term prophylactic penicillin, to see if this would keep her from getting further strep infections, but it's unclear whether this worked or not. There are some dangers in using long-term antibiotics, plus most doctors are careful these days to not prescribe antibiotics unless truly needed due to the rise of resistent bacteria. I went along with her doctor's ordering ASO titers (labwork) a few times, then began declining these since they were so distressing to my child. Being identified as PANDAS does not let these kids in on any special kinds of treatment at this point...there isn't a different treatment protocol for PANDAS kids vs. " regular OCD " . We've since learned that some (unknown) viruses also dramatically increase Kel's symptom level. The main benefit we've gotten out of the whole PANDAS thing is the understanding that her immune system works differently, and to therefore be alert to other possible triggers that set off her symptoms. Milk is one we've found that seems to cause ticcing to worsen. I also give her vitamin C religiously in an attempt to keep her from getting sick with anything that's going around! :-) HTH, Kathy R. in Indiana ----- Original Message ----- From: Belinda Greiner I took my daughter ( Madison 7) tonight for bloodwork to see if her titers were elevated to see if she could be diagnosed with PANDAS ocd. I have my suspicious that she may as her OCD symptoms went away so fast compared to what it was doing to her.And she has a few of the other conditions of pandas ocd the only one she does not have that I can tell is hyperactivity or fidgitiness. However she faught like I have never seen her fight ( and i have seenher give somegood ones) and even after 4 people trying to hold her down she won the fight and they couldn't drawl the blood. They gave me a form to get it done at a lab where they will strap her legs and arms down and take it. I do not want to go to this extent. Should I? Is it so worth it to know at this point if her levels are elevated or can I wait till her symptoms come back and just ask for an antibiotic and see if the stymptoms get better? THis in itself was an awful experience for us both i can't imagine what the other one will do to her. Ughhh belinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 l's symptom level. The main benefit we've gotten out of the whole PANDAS thing is the understanding that her immune system works differently, and to therefore be alert to other possible triggers that set off her symptoms. Milk is one we've found that seems to cause ticcing to worsen. I also give her vitamin C religiously in an attempt to keep her from getting sick with anything that's going around! :-) Hi Kathy yea I am a tad confused but think i have the gist. madison was sick through january and a bit of february and right around then OCD roared its nasty head full force, she had tendencies i would call them in the past although she went through a bad bout of handwashing at 3, but nothing like this, I am certain now where as before I wasn't that she definitly has OCD. I read like crazy and took her to a few places and cried and got her all situated witha therapist and as fast as it showed up it left. She is healthy now and back to a practically ( although now i watch and question everything) symptom free Madison. So it made me think it may be the pandas OCD but as you and the therapist said treatment is basically the same with the diference of the antibiotics at the onset right? Why can't they just give her the antibiotics at the onset next time and see if it helps her symptoms and if it does then either get the blood work or assume it is pandas OCD? Or do i even really need to know?? I will say doing daycare for a living makes me more nervous now and i am wiping everything down with bleach!! I am going to go get some kids vitamin C too just to be on the safe side, neither can hurt! Belinda _________________________________________________________________ Add photos to your e-mail with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 Hi Belinda, if you can find a doc who will agree, you can just proceed on the assumption that Madison's OCD was a PANDAS reaction to a strep infection, and next time just put her on 10 days of amoxicillin when her symptoms suddenly flare. Kel's ped did this once (original onset) because I brought her all this material about PANDAS from the internet and basically begged. She said Kel hadn't been on an antibiotic for over a year, so alright, and Kel's OCD symptoms fell dramatically on day 8 of a 10-day course. But ever since then, whenever Kel's symptoms are suddenly worse, she will do the throat culture first, and then if positive, prescribe the amoxicillin. She's actually doing us a favor in agree to do the culture, because Kel rarely shows any usual clinical signs of having strep (fever, red sore throat, swollen glands, rash etc.) just the abruptly worse OCD. Other docs just laugh us out the door. I guess what I'm saying is looking back, there really wasn't anything much gained in definitely identifying Kel's OCD as PANDAS, and if I had to do it again I wouldn't put Kel through the blood draws. Kel's pdoc wanted to do this because he was considering referring her to the NIMH to take part in the PANDAS study at that time which would have given her the opportunity to have the procedure that filters the strep antibodies out of the bloodstream. Once we decided we wouldn't want to do this, there didn't seem any further point in documenting episodes of elevated titers at the same time her OCD got suddenly worse, which was needed to be considered for the study. I'm sorry I didn't mean to insult your understanding of all this. It took me a long time to understand that it wasn't the strep bacterial infection itself, but instead the rising antibodies that caused the OCD symptoms. Often enough the strep infection has already cleared before the antibodies rise so there isn't anything to treat with antibiotics at that point, and the antibodies can stay elevated for weeks-months causing worse OCD all that time before diminishing. Kathy R. in Indiana ----- Original Message ----- From: Belinda Greiner l's symptom level. The main benefit we've gotten out of the whole PANDAS thing is the understanding that her immune system works differently, and to therefore be alert to other possible triggers that set off her symptoms. Milk is one we've found that seems to cause ticcing to worsen. I also give her vitamin C religiously in an attempt to keep her from getting sick with anything that's going around! :-) Hi Kathy yea I am a tad confused but think i have the gist. madison was sick through january and a bit of february and right around then OCD roared its nasty head full force, she had tendencies i would call them in the past although she went through a bad bout of handwashing at 3, but nothing like this, I am certain now where as before I wasn't that she definitly has OCD. I read like crazy and took her to a few places and cried and got her all situated witha therapist and as fast as it showed up it left. She is healthy now and back to a practically ( although now i watch and question everything) symptom free Madison. So it made me think it may be the pandas OCD but as you and the therapist said treatment is basically the same with the diference of the antibiotics at the onset right? Why can't they just give her the antibiotics at the onset next time and see if it helps her symptoms and if it does then either get the blood work or assume it is pandas OCD? Or do i even really need to know?? I will say doing daycare for a living makes me more nervous now and i am wiping everything down with bleach!! I am going to go get some kids vitamin C too just to be on the safe side, neither can hurt! Belinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 I'm sorry I didn't mean to insult your understanding of all this. It took me a long time to understand that it wasn't the strep bacterial infection itself, but instead the rising antibodies that caused the OCD symptoms. Often enough the strep infection has already cleared before the antibodies rise so there isn't anything to treat with antibiotics at that point, and the antibodies can stay elevated for weeks-months causing worse OCD all that time before diminishing. No you didn't insult me at all I just wanted to make sure we were both in the same page about it. In fact your original email to me a week or so ago was one i cut and pasted and brought to the pedi's office with me along with other pandas info i found about what specifically to test for. You were who taught me so of course I learned . LOL! Anyway I would ALMOST gaurantee since the doc was the one getting kicked and helping to hold Madison down that she would be willing to prescribe the antibiotics if I asked. I have a pretty good relationship with them. I did insist Madison write a note apoligizing for kicking her today and we brought it up to the office. She made a really nice picture of Tigger for her with a note saying " I am sorry i kicked you I was so scared " and she really was sorry and really was so scared. Belinda _________________________________________________________________ Tired of spam? Get advanced junk mail protection with MSN 8. http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2003 Report Share Posted March 22, 2003 Hi, Belinda. I have been reading the posts on Madison's need for blood work and the connection between her OCD and illness. My was tested for the presence of strep and was found to be free of it. She is, however, affected by illnesses--even when she is not sick herself. Our psy. explained that even exposure to illness can cause the chemicals in the brain to change and react, without the child even getting sick herself! definetly has a reaction when someone in our family isn't well. I think that it is a combination of the chemicals changing, the thought that a person can get sick (she worries about getting sick) and the changes in routine that occur when someone in our house is sick. I have also seen her OCD flare up when everyone at school is sick. Even if the doctor rules out PANDAS as a cause for Madison's OCD, she can still be affected by illness. OCD tends to flare when we are not at our best and being sick makes us be not at our best! Good luck with everything! Kelley in NV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2003 Report Share Posted March 22, 2003 >Hi, Belinda. I have been reading the posts on Madison's need for blood >work >and the connection between her OCD and illness. My was tested for >the >presence of strep and was found to be free of it. She is, however, >affected >by illnesses--even when she is not sick herself. Our psy. explained that >even exposure to illness can cause the chemicals in the brain to change and >react, without the child even getting sick herself! definetly has a >reaction when someone in our family isn't well. I think that it is a >combination of the chemicals changing, the thought that a person can get >sick Thanks kelley that makes a lot of sense. I am not going to put her through the blood work, at least not at this stage. I know she has the OCD I will just be more careful about watching her when she is sick. It does amaze me that she can go from being so consumed to no signs whatsoever. This whole dang disorder amazes me with all of its facets. Belinda _________________________________________________________________ MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 I recently had blood work done for my 4 year old (the one without the OCD) and he too was terrified. It turned out he told me after the fact that it did not hurt, but he was scared because of the idea of someone stealing his blood. That just freaked him out. After I explained to him how your body makes more blood to replace what's taken and what they do with the blood they take, he calmed down a lot. So maybe trying to find out if the fear in Madison is this kind rather than the pain of it might help? My oldest son ( -7) has PANDAS. From everything I read titers help confirm a diagnosis but arent required. Has she had a positive strep culture this time or in the past. You can kind of diagnose it by looking at a pattern of increased syptoms and positive cultures. You can request a culture be done if her OCD gets worse even if there's no strep symptoms, as infection can be asymptomatic. If the culture comes back negative, but you still feel like it might be PANDAS, that's when the titers come in handy, because their elevation also indicates a recent infection, regardless of what the cultures say. If you're not already doing it, I suggest visiting www.braintalk.org and reading the posts under PANDAS - theres been a lot of good advice there for me. Best of luck! - in MI Quote Link to comment Share on other sites More sharing options...
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