Rowens1214

My thoughts exactly on the counselor. the thing is i waited 3 months to get an appt with him. he is considered the best in my town for helping kids. My son is devasted and told me he would never share with him again and that he has lost his trust. my son feels so bad for talking with him and telling him about the latest rage attack etc. Now this has just increased my son anxiety !!!! My husband took the kids out to dinner and a baseball game tonight. I needed the peace and the kids needed to get out. I hope everything goes O.K. I was worried about my son going out and throwing a fit at the game but i needed the time. I pray the night goes good.

I will try and get my dr to write a brief note for DSS when i see her tomorow and hope she will be of furher help if needed. , I have not received a call from their office yet. I imagine it will be tomorrow. I dont think i will answer the phone until i have all my info in place. My son is scared now and I have told him not to worry that everything will be ok. I am so sick to my stomach worrying about all this. Things just have to improve soon. Robin

thanks so much for all your input. I have copied Dr, k's page on the symptons. We do have a plan, well lets say i have a plan but my son does not always go along with it. He has written up a plan that we bothed signed for his doctor but when he starts raging nothing seems to help. I hate it so much. My youngest son is afaired of his brother after seeing so many fits. We are sending off the blood work to Dr. cumminham tomorrow. What a way to start of summer vacation. today is the last day of school for my youngest son. I have a feeling its going to be a LONG summer. oh and yes he is on 20 mg of celexa. it does not seem to help at all with his intrusive thoughts. he got very depressed after his last strep and his dr felt like he needed an ssri. i dont know anymore what the right thing to do is. i always question myself and it is exhausting.

My son has been going down hill again this past week. Yesterday from the minute he woke up until midnight he was defient, aggressive, swearing, throwing things. All in all a fun day. By dinner time i had locked myself and my youngest son in my room and let his father try and get my son to take one of his klonopin and sit and talk with his Aunt and uncle who i had called over earlier when things were getting out of hand. he did calm down but .......today we went to see his counselor and he proceeded to tell him that i said terrible things about him, refused to help him when he was upset on and on and on. I have talked with the couselor about PANDAS, and he just looks at him and nods his head. I dont think he "believes" in it. Well i just got a call from the counselor who says he feels like DSS (department of social servcies) needs to get involved since things are so bad in the home. I am freaking out. I told the coulselor that Will has rages off and on and we are trying very hard to help him get better with abx and IVIG etc. I am so afaired of what DSS will do. They just wont understand. Can anyone offer the best web site or link that described PANDAS in a simple way so I can print it out and have it when they show up at my door. I know they will think my son is a moody, defient teen and yes at times he is but last night that crazy child was not my son. oh it just never ends.

I saw where fixit posted that her child was on taurine when they were tested? my son is taking this for his tics. should we stop this before we get the test done? Any other meds or supplements that you all are aware of that need to be stopped before taking the cunningham test. I have the kit and want to get the blood drawn this week. My son has had a bad week and last night he had a horrible rage attack. I gave him a klomopin to calm him down. Will this affect the test results. oh so many questions.!!!!!!

I have been asking myself the same questions for 2 months now. I just got the cunningham test kit in the mail on Friday for my 15 year old and over the weekend have decided to order one for my 7 year old. the only sympton he is having are minor tics. My family thinks I am over reacting and dont "see" the tics. Its all i see which i hate but i cant ignore the throat clearing and spitting anymore. I was so hopeful that it was just allergies and would go away but its been 8 weeks now.. I guess i am wondering what numbers to expect in my younger son since he is doing well otherwise. He did get a strep test 4 weeks ago and it was negative. any thoughts on this?

My 15 yr old son can not sleep alone. we have tried and tried but no luck. For awhile he would sleep with his much younger brother but after his last strep he only wants to sleep with Mom. He is on an out of town trip with his Lacrosse team and had to sleep in a hotel room with 4 other boys. (Dad went on the trip but parents can not sleep with kids) My husband just called and said he did ok but did call him a few times and wanted to go to his Dads room but did not want the other kids to tease him. If your kids can sleep away from home without you consider yourself very very lucky.

Dawn We did a phone consultation. We are in NC so it worked out better then traveling. He did want to see certain test done before he talked with us. Our local doc did the blood work and i mailed the results to DR K along with a check for $500.00 We talked on the phone for about 30 min.. He did recommend IVIG for my son but i am trying to get my local dr to help with this. We are lucky that she is willing to administer the meds she just needs to find a supplier. Robin

I know there are side effects .Danny has had 7 IVs and the side effects have been very minimum.But the risks of a blood product are that of a blood product. Melanie oh my 7!! my son is freaking over just having one. I have not told him that we may need to to this a few times. If i had the IVIG i would have done it myself last night. we were up until 2 am again. my son has such a hard time at night. he was anxious, having bad thoughts ....... the benefits must out weigh the risks. What is it like to sleep at night without a child in your bed. oh how it breaks my heart when he is anxious but how i could use a good nights sleep.

I just spoke with my sons dr last week concerning IVIG for my son. She told me she would be glad to administer the meds but wanted to make sure that I understand that there could be very bad side effects. I know there can be rash, headach, vomiting but am not aware of "bad" effects she is talking about. can anyone point me to a site explaining possible side effects. my son is 15 and is scared to go thru with it now after the conversation with the Dr. HIs OCD and rage is terrible and I told him it cant be as bad as what we are going thru and have been dealing with the past 6-7 years!!! Thanks

My son is 15 so i can understand your need to do something sooner then later. We have decided to pursue the IVIG route. He has been on antibiotics for 5 weeks and is slowly getting better. He has minor tics. Its the OCD, (obtrusive thoughts, sep anxiety that is so hard for him. We had to take him out of public school 6 weeks ago. We were lucky to find a Dr in my home town that is familiar with PANDAS. I did a phone conf with Dr. K and gave our local docr all my notes from our consultation. She is willing to follow his recomendations for antibiotics and the IVIG dose he recommended. You will find so much info and support here. Keep us posted Robin P.S. I live in NC on the coast if anyone here is looking for a dr in this area.

HI all, my 15 year old son has been on Keflex (1000 2 x daily) while we are waiting to get the Cunninghmam test done and then move on to IVIG. He was doing pretty good with his OCD, tic anxiety etc. His dr decided to put him on amox-clav (augmentin 500mg per day) Its been 7 days and his anxiety, OCD ( Very bad violent thoughts) are creeping back in. Can a change in the antibiotic create such a change in symptons so fast? I have plenty of keflex on hand and think i should switch him back over the weekend and then call our Dr on Monday. Any thoughts on this.

Thanks so much for all the replys. Your answers were all a huge help. I too wonder If anyone has come back low and proceeded with IVIG and had good results. Thanks everyone Robin

I am going back and forth on my decision to get the cunningham test for my boys. In previous posts i have talked about him and that after a phone consult with Dr. K it was recomminded to proceed with IVIG and not to bother with the cunningham test. I just read a post on Dr. T.'s web site and not sure if i interrupted it right but does this test help to figure out if you child has true PANDAS or its TS, OCD. I would like to proceed with IVIG but my son is not a clear cut case of PANDAS or TS for that matter. He defiently has OCD AND TICS but i just dont know. Also is the CamKII the same thing as the cunnington test. Sorry for the ignorance about these. I am new to all this and just trying to figure out what to do next. My youngest son has started doing things that i am pretty sure are tics. throat cleaning. snapping his fingers and spitting. I am just a wreck with 2 kids going through this. MY dr put my youngest on Keflect 1000 2 x daily last friday and he seems to be getting worse. Is this normal? Sorry for so many questions. My mind is racing with questions and worries.

did the PEX help out at all with the OCD. that is my sons main problem right now. even he will tell you that he can deal with the tics but its the constant bad thoughts that make life so hard to deal with. How often does he take the augmentin. right now my son is on 500mg daily and it does not seem to be helping any. Robin

Hi, my phone consult with Dr. K sounds like yours. Dr K does feel like my son has PANDAS based on history and that he did test positive for strep during a big increase in symptons but that being said he also told me that antibiotics would not do much good at this point and a steroid burst would only be a tool for me to decide on the IVIG. he said at my sons age (15) that we did not need to waste time on the steroids etc. He told us to expect a 75-80% improvement after 2-3 months post IVIG (THATS IF HE RESPONDS TO IT) We have not done the cunningham test yet because again Dr. K said the numbers gathered so far were not reliable when you needed to make a decision on IVIG. its hard knowing what to do with the older kids. Robin

Hi, i dont know much about the type F strep. My doctor sent his throat culture off to labcorp and it came back positve for type F strep?? Dr. K said at this point the Steroids are just a tool to see if it is worth the money to pursue the ivig. He words were "if he were my child i would do the IVIG asap" I have to agree with you about the rages. My son is 5 11" and weighs 170. when he rages and refuses to go to school and do something he does not want to do its very very hard my me and his Dad. I guess my biggest fear with the IVIG is that i will put my son through yet another treatment and it wont work. I have told my son that its not a cure and he may still have bad thoughts, anxiety, tics etc. He told me today that if he will still suffer the same symptons that he does not want to do it. His dr. just last friday switched his antibiotic from keflex to augmentin and he seems to be going down hill again. Its just so hard knowing what the right thing to do is. have you done the cunningham tests? Robin

My 15 year old just got diagnoised with PANDAS from Dr, K. He has had tics, ocd, sep anxiety, tantums, rage attacks, night fears, on and on for 8 years. He was diagnoised at the age of 8 with Touretes, OCD, SEP ANXIETY. We took the route of ssri. They never really seemed to work more then 70% and things always got worse when he was sick!!! Anyway after talking with Dr, K and going over his symptons, and illnesses over the past 8 years, Dr, K feels 90% sure that he has Pandas, My son had a huge increase with OCD THOUGHTS and rage about 6 weeks ago. He did test positive for type F strep and slowly after being on 3 different antibiotics he is getting better. Dr. K told me that we should pursue IVIG and then a daily doise of 500mg of augmentin for 1 year. He said to expect a relapse in 9-15 months and have to do another IVIG. He said at his age we will not see much improvement with antibiotics and steroids. Is there anyone out there in a similiar situation. My local dr who has been giving the antibiotics is trying to geth the IVIG MEDS. I just wish we had more to go on as far as a test to know for sure we are on the right path!! Its so hard after so many years of ups and downs to take all this in. Dr. K said we could expect an 75-80% improvement. He said we may never see 100% due to the time my son has been suffering with symptons. 80% would be a huge improvement for my son. Has anyone else with older kids received this kind of information from their doctors. Robin

7 upmom, I so needed to read your response, I too am wondering if IVIG is the way to go with my 15 year old. We spoke with Dr. k 3 weeks ago and he feels like we should proceed with IVIG right away based on my sons age and the number of years we have been dealing with tics, OCD, rage sep anxiety..... (8yrs of not knowing what was going on) I still can not stop myself from wondering if he really has PANDAS or is this just classic TS, OCD, etc. My son had a really bad surge in rage attacks and OCD 5-6 weeks ago and did test postive for type F strep. He has been improving slowly since he has been on keflex. He is also on klonopin ( just last 4 weeks so he could get out of bed and cope) and celexa for the ocd and depression he is dealing with after struggling for 8 years. We have been trying to decide what to do since he has negative titers and we dont have any numbers from tests like the cummingham etc to base a PANDAS diagnoises on. Dr K feels like he is 90% sure my son has PANDAS just based on his history of symptons and illnesses. Dr. K said to hope for a 80% improvement based on his age and duration of symptons. I was discouraged at first but 80% is a huge number for us after all my son has endured. thanks for posting you experience.

Just wanted to let you all know that my dr suggested getting my dogs tested for strep 2 weeks ago and the vet called yesterday to let me know they were both positive. I could not believe it. Both dogs have been put on amox for 2 weeks. no one else in the family has tested positive so Doc thinks the dog is the carrier. its crazy!!!

I would like that very much. Thank you I would be interested in this too. We are just starting our journey with possible PANDAS in my 15 year old.