mar Posted October 30, 2009 Report Share Posted October 30, 2009 Does anyone know of a Pandas doctor in Illinois? Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted October 30, 2009 Report Share Posted October 30, 2009 Mar: Dr. Kovacevic is in Chicago and he has been treating PANDAS for 10 years. His website is webpediatrics.com. Elizabeth Link to comment Share on other sites More sharing options...
mar Posted October 30, 2009 Author Report Share Posted October 30, 2009 Mar: Dr. Kovacevic is in Chicago and he has been treating PANDAS for 10 years. His website is webpediatrics.com. Elizabeth Link to comment Share on other sites More sharing options...
mar Posted October 30, 2009 Author Report Share Posted October 30, 2009 Mar: Dr. Kovacevic is in Chicago and he has been treating PANDAS for 10 years. His website is webpediatrics.com. Elizabeth Link to comment Share on other sites More sharing options...
mar Posted October 30, 2009 Author Report Share Posted October 30, 2009 Mar: Dr. Kovacevic is in Chicago and he has been treating PANDAS for 10 years. His website is webpediatrics.com. Elizabeth Thank You so much for your reply!! I feel like I am going crazy. I don't know what is going on with my son or if it is even Pandas. My son who is 7 1/2 has has minor tics since he was about four. They would only last four a couple of weeks when he was younger and it seemed to occur on Oct or Nov. last year I noticed more varieties, he has had (eye twiching, throat clearing, mouth opening, and lip licking. In the last year or so I have noticed different things like rolling on his head back and forth, or one time spinning in place while watching tv on the couch. He has had bad allergies since the beginning of September . This past September I have choose to quit my and the day after me and his father were discussing this he woke up being very moody, sad and was acting very strange for about a week. All his symptoms resembled axiety. When I finally spoke to him he said he was worried about having no money. I reassured him and he felt better. But after that Inoticed alot of fears in him. He seemed to be worried about everything. He kind of goes back and forth but his before is still different. He gets hyper at times, very silly and has episodes of anger. He has been pushing his siter more often and seems irratable at times. He always states nothing is wrong when I ask him. I was on the torrette post and started assuming it might be a food sensitivity. But the couple of replys I received told me to look into Pandas. His father has ticks by the way which is why I was assuming Torettee. I am so sorry for blabbing and talking to much but I have no idea what it could be. I don't know if its torrettee with anxiety or could it be Pandas. I forgot to say that he has had many ear infections in his life and also had strep several times. Thanks Again Link to comment Share on other sites More sharing options...
sf_mom Posted October 30, 2009 Report Share Posted October 30, 2009 Its PANDAS..... Call Dr. Kovacevic's office and request a consultation and please request kit from Madeleine Cunningham for CaM Kinase testing. Kathy at Madeleine office can forward kit: Kathy-Alvarez@ouhsc.edu Link to comment Share on other sites More sharing options...
mar Posted October 30, 2009 Author Report Share Posted October 30, 2009 Its PANDAS..... Call Dr. Kovacevic's office and request a consultation and please request kit from Madeleine Cunningham for CaM Kinase testing. Kathy at Madeleine office can forward kit: Kathy-Alvarez@ouhsc.edu Now I am really getting scared. What is the CaM Kinase testing. How is it done. How will I know that he has it for sure. Is their a test that proves you have it. Is it curable? He hasn't had strep since Feb and when he got it he had a sore throat, redness and a fever. The only thing he has had now is bad allergies and I beleive a sinus infection on Sept 29 the behavior started on Sept 18. Could this have started it. Just yesterday he told me that he is sick of me asking if everything is ok with him and always watching him. He saids he's fine. I am starting to feel like I am driving him nuts with all my questions and always watching him. Link to comment Share on other sites More sharing options...
sf_mom Posted October 30, 2009 Report Share Posted October 30, 2009 The CaM Kinase it a protein in the blood that is activated by cross reactive antibodies related to strep...... dense reading http://www.pandasnetwork.org/Cunningham.NMpaper[1].pdf. The protein measurement will allow you to determine if your child falls within the PANDAs range, if it at all. You receive the kit from their offices, take the kit to your Pediatrician, get a lab request to draw blood in accordance with instructions, take to lab, draw blood and lab will spin blood, keep on ice pack and ship over night back to Kathy at Madeleine's office. Its a fairly simple process and about 3 weeks you'll have results. They will not be taking samples after November 12th because they are shutting down for the winter holidays. So I recommend you request today. Don't be scared as this could the answer for your child. Keep reading the posts under PANDAS section, read PANDASNetwork.org 3 times until you can process all the information. Understand the science. FOR SOME it is only the first strep infection that kicks off the auto-immune response and keeps attacking their immune system with each cold, virus and bacterial infection. Link to comment Share on other sites More sharing options...
mar Posted October 30, 2009 Author Report Share Posted October 30, 2009 The CaM Kinase it a protein in the blood that is activated by cross reactive antibodies related to strep...... dense reading http://www.pandasnetwork.org/Cunningham.NMpaper[1].pdf. The protein measurement will allow you to determine if your child falls within the PANDAs range, if it at all. You receive the kit from their offices, take the kit to your Pediatrician, get a lab request to draw blood in accordance with instructions, take to lab, draw blood and lab will spin blood, keep on ice pack and ship over night back to Kathy at Madeleine's office. Its a fairly simple process and about 3 weeks you'll have results. They will not be taking samples after November 12th because they are shutting down for the winter holidays. So I recommend you request today. Don't be scared as this could the answer for your child. Keep reading the posts under PANDAS section, read PANDASNetwork.org 3 times until you can process all the information. Understand the science. FOR SOME it is only the first strep infection that kicks off the auto-immune response and keeps attacking their immune system with each cold, virus and bacterial infection. Thank You so much for responding to my posts. I just feel so lost and confused with all of this. I am not able to open the pdf file you sent. The link does not go through for some reason. I am sorry if I am prying but do you have a child with Pandas? Link to comment Share on other sites More sharing options...
sf_mom Posted October 30, 2009 Report Share Posted October 30, 2009 One child potentially two... Our 5 1/2 year old PANDAS boy is doing well and almost symptomless 5 weeks post IVIG. You can find the Micro Minicry Article link on the first page of pandasnetwork.org Link to comment Share on other sites More sharing options...
EAMom Posted October 30, 2009 Report Share Posted October 30, 2009 Now I am really getting scared. What is the CaM Kinase testing. How is it done. How will I know that he has it for sure. Is their a test that proves you have it. here's an older thread on the topic http://www.latitudes.org/forums/index.php?...gham+blood+test Is it curable? Possibly curable. Definitely treatable. IMO long term antibiotics (until well past adolesence) are needed to prevent a relapse. He hasn't had strep since Feb and when he got it he had a sore throat, redness and a fever. The only thing he has had now is bad allergies and I beleive a sinus infection on Sept 29 the behavior started on Sept 18. Could this have started it. Yes defnitely bad allergies and esp. a sinus infection could cause an exacerbation. Is your son on antibiotics now? Which antibiotic and what dose? That is very important. I would also recommend culturing family members to check for strep carriers. Our younger dd gets strep w/out any symptoms (no sore throat/no fever) and this affects my PANDAS dd. It's like these kids are "allergic" to strep. It's possible that your son could have strep in the sinuses, but the infection (virus, bacteria) doesn't just have to be strep to cause problems in a pandas child. Link to comment Share on other sites More sharing options...
T_Mom Posted October 31, 2009 Report Share Posted October 31, 2009 Welcome, and I am so sorry you have had to find this forum--BUT there are some courageous parents on this forum who have been through it-- I have to say, just reading your post my initial reaction was the same as SF Mom when she said "It's Pandas", as some of what you describe reminds me of my daughter early on. The question to me is "how much" and "how often" are you seeing what you have described? Is it intruding on his life? Read the Pandasnetwork.org website, it has a wealth of information. Do not be afraid (easier said than done I know), and feel free to private email anyone on here and people will gladly talk to you by phone as well if that would be of help-- We are parents stumbling along and literally "finding" things out -- The "steroid burst" is what helped us see a radical and sudden change in our d. That convinced us it was Pandas, and must be some type of brain inflammation issue--Dr. K in Chicago suggested that as a "test" in a way to see if it was Pandas-- spinning around once is OK, spinning obsessively is something else. All the best-- Link to comment Share on other sites More sharing options...
mar Posted October 31, 2009 Author Report Share Posted October 31, 2009 Welcome, and I am so sorry you have had to find this forum--BUT there are some courageous parents on this forum who have been through it-- I have to say, just reading your post my initial reaction was the same as SF Mom when she said "It's Pandas", as some of what you describe reminds me of my daughter early on. The question to me is "how much" and "how often" are you seeing what you have described? Is it intruding on his life? Read the Pandasnetwork.org website, it has a wealth of information. Do not be afraid (easier said than done I know), and feel free to private email anyone on here and people will gladly talk to you by phone as well if that would be of help-- We are parents stumbling along and literally "finding" things out -- The "steroid burst" is what helped us see a radical and sudden change in our d. That convinced us it was Pandas, and must be some type of brain inflammation issue--Dr. K in Chicago suggested that as a "test" in a way to see if it was Pandas-- spinning around once is OK, spinning obsessively is something else. All the best-- Thanks for your reply! Let me explain our situation. I believe my husband has Torrette but was never officially diagnosed as a child. He is a perfectionist, has a temper if things don't go his way (his father is the same). He has the mild tics when stressed (eye blinking, opening of the month, sniffing). And the more I talk to him about this he is starting to realize that he is like that. I have been reading alot about Torrette in the last view weeks and children with the disorder can also have many other thingss like aggression, OCD and axiety. Since my son was a little boy their were so many things that he would do that remind me of his father. He is also a perfectionist, very detailed is his explanations and he is very loving. Loves to be hugged alot and be close which goes the same for his dad. I on the other have had axiety. I am always worried about everything and I feel that alot of my worrying has been pasted on to the kids. A good example would be that I have always told my kids to not talk to strangers to a great extent, no wonder they are werry around people they don't know. This list could go on with many such examples. I actually went through anxiety for a good week when I discovered the torrette and spend time reading the books. Reading the one about axiety reminded me of what I am like. I have since changed my ways and have been showing the kids that all things in life are'nt scary. I have been more easy going with a lot things related to them in the last three weeks, like letting him ride his bike down the whole block and he seems to be enjoying it and if he rides his bike down the block I let him not put his helmet on (still stresses me). These new things I'm doing could be a good reason why my son in his last anger fit mentioned that "I don't care about him". Getting hit by this is pretty rough coming from a parent who cared about everything too much. Could this be because of the way I have been acting lately? Because I am more care free he just thinks I don't care at all. I emailed his teacher the week he was so anxious and she replied that he is liked well and interacts with many kids. He is quiet with her (he tells me he doesn't know her that well yet but thinks she is a good teacher). He likes going to school, insists on taking the bus home and according to his teacher he seems fine there. He is a smart boy who just got straight A's with minimal studying. He actually said at one point that school seems to easy and he things he should just go a grade up right know. He has gotten alot better since it all started. There are days where he is back to himself other then some tics. I alot of it might be do to bordem. I think their is alot of changes going on lately and he probably wonders what is going on. I know anxiety takes away to go away especially in younger children. I have been helping him with the coping skills I have read about. Also, everytime he has gotten strep or an ear infection he has always had a fever or sore throat. Is it affecting his everday life. I would say no. He is passing out candy with his cousin laughing and having the time of his life right now. Their I go blabbing again...but its nice to know that someone is listening. Oh I am not sure if I mentioned this but when I decided to quit my job that is when his massive anxiety started. And once again this is coming from a child who heard over and over how important my job is, that it pays the bills and all. That we wounld'nt be able to take vacations as much iif I wasn't working, that it pays for the house. This was all said throughout the years because I work out of the house part time and they would always complain about me working and not being able to go outside every morning. They hate it when I work from home so we said those things so they would understand that there was a purpose to it. Link to comment Share on other sites More sharing options...
mar Posted November 2, 2009 Author Report Share Posted November 2, 2009 Now I am really getting scared. What is the CaM Kinase testing. How is it done. How will I know that he has it for sure. Is their a test that proves you have it.here's an older thread on the topic http://www.latitudes.org/forums/index.php?...gham+blood+test Is it curable?Possibly curable. Definitely treatable. IMO long term antibiotics (until well past adolesence) are needed to prevent a relapse. He hasn't had strep since Feb and when he got it he had a sore throat, redness and a fever. The only thing he has had now is bad allergies and I beleive a sinus infection on Sept 29 the behavior started on Sept 18. Could this have started it. Yes defnitely bad allergies and esp. a sinus infection could cause an exacerbation. Is your son on antibiotics now? Which antibiotic and what dose? That is very important. I would also recommend culturing family members to check for strep carriers. Our younger dd gets strep w/out any symptoms (no sore throat/no fever) and this affects my PANDAS dd. It's like these kids are "allergic" to strep. It's possible that your son could have strep in the sinuses, but the infection (virus, bacteria) doesn't just have to be strep to cause problems in a pandas child. He was on Cephalexin 250mg 10 days. 9/29/09 He was on amoxicillin 400mg 10 days 10/19/09 It did clear up his nose problem and allergies are doing better (has taken claritan at night for two weeks) Link to comment Share on other sites More sharing options...
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