mom24

Hi Kimflow. DS had NO symptoms except for his behavioral symptoms that seem to happen when he has strep or myco plasma. If 2 of his siblings had not swabbed +, I would not have even taken him to the doctor. He was just supposed to be there for an allergy shot. I believe that is why the doctors keep rotating the meds. Hopefully since your son keeps getting sick this will help with your IVIG approval. Keep going to the Dr and let the Dr know that your child is sick. I did think clinda was one of the best meds though (the "go to" drug according to two ENT's I know and respect. It is keeping my other son strep free (knock on wood). Hang in there!!

YES, my husband explains a constant pain in the back of his eye, accompanied by some stabbing pains that come shooting in out of no where. I don't like to mess around with eye stuff, you never know would could lead to permanent damage. I'm way more concerned with his eye at this point, than my heart. Interesting that the heart issues are seemingly a common product with lyme and co. and you also have mycoP and had eye issues. We have an appt. with the opthamologist at 11am now. I'm trying to figure out if I send husband down the lyme road right now and spend even more money we can't afford on testing and more doctors, or just treat the eye and mycoP and see how it goes. I'm starting to truly question the idea of possible sexual transmission of all this stuff. Just saw your post on eye pain. I had that too and it was scary. That is when I went to the immunologist and had the Western Blot done and discovered that I am +. I have taken about 2 months of Doxy and my eye symptoms are better. I went to a Dr for my eyes and he didn't "get" the Lyme thing at all. It was almost like seeing a Dr who does not believe in Pandas. It was pretty upsetting.

My 9yo PANDAS son just got strep on Clinda as well as increasing titers for myco plasma (although not technically + at this point---fingers crossed). Our Dr took him off and put him back on augmentin which I was told will treat his Lyme too (it was in a previous rotation of meds). We have also had myco plasma in our 4yo that would not go away. Finally, bactrum and Clindamycin seemed to do the trick but it has been 3-4 months. As soon as we are done w/ strep here (3 out of 4 have it) I will ask that the little guy(who is not sick) get taken off the clindamycin. I have been hearing that (clinda) it is not good long term due to C Diff risk. Good luck! Hopefully the warm summer weather will help. The kids seem to generally catch fewer viruses in the summer. I hope everyone feels better.

We have had experience with similar stuff. One of our doctors told us that kids with PANDAS sometimes do not respond well to SSRI's. For us it was just masking an underlying infection. She is now SSRI-free :-) But that being said, everyone is different. Make sure your neurologist believes in PANDAS. Good luck :-)

Yes, maybe going with a half day is a good answer and workable compromise. Do you have a 504 Plan or an IEP already in place? If not, you may want to consider taking that up with the school; if so, you might want to talk with the administration and/or caseworker about making tweaks to the plan based on her current needs. If she seems particularly "ramped up" (more anxious) about returning to school, you might even try just dropping her off for one class per day for a few days and slowly increase the number of classes/time she stays in the building. You could even start with her favorite class, that way. That's what we did with our DS, and it seemed to help ease him back into school a little less traumatically. For us (and maybe this is part of the nurse's concern, too), we had to balance DS's emotional lability and anxiety against him just becoming even more school-phobic the longer he stayed away. Avoidance tends to turn some things into bigger and bigger monsters. Hang in there; hopefully the school will work with you willingly to come to a resolution that helps your DD get back to a more "normal" life. But if you have to drag the school to the table by its metaphorical hair, there's plenty of backup for you to do that, too! I have a 9yo son. He thankfully likes to go to school (even when he should not be there). He has an IEP and we have met with all people involved with him and they know what signs to look for and when to call me to take him home. I figured (and the school nurse concurred) that even if we can get him there in the morning, it is better than not at all. He is on augmentin 2x a day and was recently on Clindamycin (3x per day and developed strep). Maybe try for amoxicillan or augmentin, but unfortunately, you will still have to be on the look out. My son's symptoms are also set off after he goes outside for recess due to his allergies. I also have a 4yo Pandas child who does not like school and at times I have to take him kicking and screaming to school (this is exhausting), but he is okay once he is there. I have heard if I keep him home that it may be a slippery slope if I keep him home for a day..... PM if you want to. We have seen a number of doctors in the tri-state area. Maybe just one appt with one Dr who is PANDAS literate could set up a game plan for you to follow with a doctor of your choice. Good luck

I do the same thing as JenniferG. If I did not, I would be waiting weeks at times for results......

Thanks SF Mom. We ran everything and although he has come up negative on all western blot and Igenix tests, Dr J is pretty certain it is Bartonella and Lyme. Even though he didn't order the tests, I am going to have them sent to him. He is at a conference and will not be back until Monday though..

Glad you guys have liked it. I gave it to one of my son's teachers and waiting (and waiting) for DH to read it. I started "Out of the fog..", but I had to buy it in "cloud" format. Is it possible to get hardcopy? Getting on my ipad is difficult with the angry bird crowd around ;-)

My DS has a low white blood cell count 4.6 and high 1.1 basaphils. Not sure how to interpret this. Could a high IGG for Myco plasma (above 5.0) suppress the wbc count (he does NOT have a current infection) I am a little concerned and cannot get the Dr on the phone. Thanks.

Thanks for everyones thoughts. He had the nasal MRI---nothing of consequence and had a rectal swab-no strep there. It seems to come and go and probably does not help that his brother is constantly sick. We are starting round 4 of IVIG. I think we may be leaning towards a Tonsillectomy this summer (adenoids taken out years ago)---will have to see what the Dr says. ASO just came back + probably has Myco again too we are waiting for the rest of the results to come back. Dr put him back on Augmentin. Cobbie-I am going to check to see if he has had the prevnar.....probably has though. What age is that given---is it 4?

http://joshuasmissingpeace.com/blog/ I ran across this book (Joshua's Missing Peace) in my travels. I found that it related to my family better than Saving Sammy in that the child needs and ultimately receives IVIG. I have shared this book with his teachers.

This is a wonderful vide...... It is very moving. Thank you to the parents who made this movie. I too will share this with people that are involved with my children!!

I cannot believe we have it again. Took My DDs to the ped since she has been sick for days (coughing, lost voice, etc) toddler also lost voice and is crying and mouthing. Also brought DS1 who is a PANDAS kid for an allergy shot. The dr tells me that my DD1 (who takes biaxin 2 x per day) just has "allergies" and needs clariton and should "suck it up" and go to school. The one year old is "teething" and her throat looks "perfect". Due to the fact that I have 2 kids w/ PANDAS I insisted on the swab. I believe to humor me she asks the nurse to come into the room. The nurse does the swab and returns to the room to tell me that my 2 girls have strep---I am floored. They agree to swab my son who has been "off" for a couple of weeks after he has been given his allergy shot . HE swabs positive also on the rapid (he NEVER swabs positive). I am so frustrated since DS is/has been on Clindamycin for a couple of months. Two different ENT's have told me that Clindamycin is the go to drug for Strep. Not sure what to make of this. Thankfully DS2 is so far negative (he is on Clindamycin and biaxin). It is a nightmare when he is sick. I didn't think he was because his behavior/moodswings have been minimal. I have been thinking of switching pediatricians, but it is such a big deal. But, this may be the last straw for me. It is a large practice and she does not believe in PANDAS. Going to see our Dr tomorrow and I am sure he will probably have to check our titers. DH and I will have to get checked too. I pray that they don't have myco too. Sorry for the rant. I am just shocked the he has strep AND that he swabbed positive. We have been through so many different kinds of antibiotics that I am not sure what he will get next. We have IVIG #4 coming up soon. Any thoughts much appreciated since I am seeing the Dr tomorrow.

We see this too when he is having a flare. THis is a great link.http://www.nxtbook.com/nxtbooks/aota/otpractice_vol16issue20/index.php#/16 LMK if you cannot find it. I found it to be one of the best link on PANDAS especially if your child has OT. I have given this article to many educators and professionals in the SPED field. I also noted that after IVIG my son's coordination changed dramatically. There was no other explanation for this. Check out this article!!!

That is great!!!!! I remember when my son all of a sudden would not let anyone see his chest when he would swim. There would be no swimming without a swim shirt. We also went through the foot covered thing too . His feet were never bare unless immediate family was only in the house (don't ask). It broke our hearts. Then after he took prednisone for a few days he decided on his own that it was okay to be w/out a swim shirt. It was crazy, but I can't remember the last time I was so happy. Hurray for you and your son!!!!

Welcome to the forum! This is a great place to vent and ask a lot of questions! I have 2 boys with Pandas and Lyme and one with a confection.... DC Mom gave you some good advice. The only thing that I would add is to get a blood test for Myco Plasma. It can bring on OCD and has been a very active infection this year due to the odd weather. We have experienced a number of the symptoms that you have mentioned. My boys are very Myco sensitive and even my former non-believer pediatrician said that Myco Plasma can bring out OCD in someone who might be prone to it. There are a number of good Pandas Drs. I would definitely find one for your daughter. Good luck! Good Luck! My thoughts are with you and your daughter :-)

We swab the whole family (as well as blood test often) if one of us has it especially. I hope that this is the answer to your problems!! My DH previously ignored sore throats....not any more!! Kudos to him for loosing weight during such a stressful time

So true Cobbie. I worked in the special education field--teaching autistic children- in my previous life and still shake my head about the way people treat others. I guess I just needed to vent! We are having a good day here!!!!

Thanks for the book tip. I am sure it will be a valuable lesson too. She is an internalizer and has some issues of her own, that is why I worry. I guess sometimes I forget how hard it is for her living here. We have to limit who comes over and we cannot do sleepovers-----my 4 yo is out of control at times and we live in a small town of talkers (which is obvious). I know you are right, its just "heavy stuff" for a kid. This girl LOVES being needy. She has embellished the story of being carried out and is loving all of the attention. Truthfully, most of this stuff is coming from the parents. She is in the same circle of friends and has repeatedly been mean to my daughter for some reason as of late. I just felt like she crossed the line when she picked on my boys.......

Yes! Our Dr told us that this is what triggered his behavior. It happened to us a few months ago (actually 2x in the past 6 months). My 4yo who has PANDAS, Lyme and Bartonella got very volatile. His OCD got very extreme and he was raging off and on. I was at wits end and we ended up doing a blood test and he had it. I find that he is constantly getting sick from the classroom and we are hoping for IVIG for him soon. I know it is not easy, but It will pass. Hang in there!!

I should have known that this would happen at some point, but I guess that I was hopeful. The short story is that my daughter extended herself to a former friend, someone who had a recent flood at their home. Although they are no longer friends (the girl is trying to be "popular") my daughter said that if there is anything she could do a place to stay or loan her clothing or anything else, to let her know. ( She said this since I told her that an email was circulating around the town that they needed help). The girl laughed and said thanks but maybe i will stay with you when your brothers are less diseased (in front of a group of people). I felt/feel so bad for her. Honestly, they are tough to live with and she has to deal with them, let alone some ignorant little brat. The boys drive her crazy but she is very loyal to them. She is a tween and she doesn't need another thing to deal with. My DH called the parents and they seemed mortified(we know them) . The gossip probably came from the mother and another that we know of. The girl then cornered my DD the next day in school and told her that she basically misunderstood and that she would never say anything bad and that she "loves" the boys. The nerve of her. Ironically, her mother is a nurse, the girl has anxiety and her brother has OCD. What is also bothering me is just how much PANDAS is misunderstood. It is apparent that people are gossiping about them and us. We can take it, but my poor daughter..... This whole situation is taking its toll on her and I've decided to get her some help. Thanks for allowing me to vent. Good thing I was not on here the day it happened.

oops, sorry for the multiple responses, my computer was not cooperating.

I would love to know too. My sons take it and DS1 takes it at breakfast lunch and dinner. DS2 is in full day school and takes it around 715ish and then when he gets home at 3;30 and then around 630 with dinner. It doesn't sound like we are doing it right with him, but I am very reluctant to send the med to school. So far (Knock on wood) results have been good and there has been no strep here...