Tamistwins

my 8 yr old is about 65 pounds and he was given the same thing for a new strep infection, however he is also on other antibiotics such as rifampin and minocin. my daughter is 45 pounds and was given the same. So I think you are ok with that dose. My 2 year old was told he could take the same thing just 1/2 tsp instead of 1 tsp. hope that puts your mind at ease.

Hi there I haven't been posting in quite a while because my life is quite hectic and depressing to say the least. I am looking for recommendations for a good pediatric llmd near northern NJ. Dr. Bryant was once referred to me but he is not taking new patients at the moment. I just found out my 2 yr old is positive on the WB Positive (A) the bands present are 41kd, 23 kd, this is positive by CDC criteria. So now I am dealing with PANDAS for all 3 children plus definite lyme on 2 and clinical bartonella for the third, no positive blood work. Any suggestions on doctors? thank you, Tami

I am interested in finding out about an llmd who treats young children. I can not believe this but I just found out my 2 year old is positive for lyme. came back positive on regular western blot, igm+ 41kd and 23kd. Does anyone know what it means when it says lyme M WB positive (A) what's the A?

I am so happy for your family, awesome news!

Hi if you see a pandas specialist they will put your child on an antibiotic that is a high dose or a regular dose that is given to you when your child shows a positive infection. That specialist will most likely keep your child on a full strength until she shows a marked improvement of symptoms. Once your child g-d willing is doing well, then the next step is to lower the dose to a prophylactic. This dose will be used to prevent reinfection. I believe that others who are using prophylactic will double or increase the dose if and when their child seems to have picked up a new infection. I hope that helped I'm sure others will chime in. Good luck!

Wow this is so wonderful to hear that there is finally some healing being done. Finally light at the end of the tunnel, I pray that you see continued healing and can finally have some peace and happiness in your lives! name='Wilma Jenks' timestamp='1315159952' post='120285'] well it has been a long 12 years, but i really see that we are at least on the right track now. it seems this bartonella was making my girl completely non-functioning and psychotic looking. the gains have been: she has a friend for the first time and she is playing quite nicely. the biggest think is that she sleeps! it is a miracle. i can't explain how torturous nights were for her. it was a living ######. pardon my french, but it the only word that really expresses what it was like! she showers and can dress herself. she use to be too confused and psychotic. she is not aggressive with me and leaves the dog alone. her ocd is much much better. i want to thank you guys so much for helping me. it was killing me, to see my girl suffer. i was really starting to think there was no hope. i get my igenix results sept 15th. i will keep you posted. your all the best!!!! ps. i do see some impulsivness creeping back in and i am a bit afraid it will interfere with this relationship she has. does the healing with the bactrim and minocycline have its ups and downs??? perhaps the pdoc. will add something in. not sure if the impulsivenss and teasing comes from the ocd or what happens. thanks again. any advice is welcome.

My daughter had her first ivig sept 2010 which we paid out of pocket and finally got approved just recently. We have bc/bs HMO access. My son was approved alot sooner but still took quite a while. It's a combination of insurance denying and office staff not really making an effort to do too much to get the approval (too much) for them. I had a patient advocate working on getting it approved but I think what really did it in the end was the nurse advocate that I requested from the insurance carrier. I wasnt aware that they had such a service to us. This nurses husband almost died from undiagnosed Lyme disease so I think she was quote helpful and understanding. She really pushed for us to get approval. Pm me if u have any additional questions. Tami

My twins were both tested for Lyme and other tic borne illneses via igenex. My daughter tested positive doe Lyme while my son did not. His pandas symptoms are far worse than my daughters. He is still being treated by the Llmd with a clinical diagnoses of bartonella.

Sorry for those of u that saw Y Scat Lol my kids were playing with my phone

My son has same issues as you described. I buy him jeans and other cargo pants from lands end, they have an elastic and no buttons. You can find them in sears if you don't want to order online. I also found elastic band jeans at crazy 8. The gap also has some cargo pants that I have been able to find. It is very difficult shopping but it can be found. For the shoe issue I found that my son does great with sneakers from tsukihoshi, they are very light weight. He used to wear geox but with these he doesn't at all complain. Good luck!

Thanks I had already done that just not sure about this rash. It would be something maybe coming out after being on antibiotics for a while.

Hi does any one know how to upload a picture I would like some advice / suggestions if it looks like a Lyme or other tic borne rash. Thanks and if I can't upload please pm me if any one willing for me to send you an email. Thanks, Tami

Hi Jen, I am so sorry that your boys symptoms are returning. I too have 8 yr old twins boy/girl. They were both taking azith 2x a day. I do believe that it can lose it's effectiveness. However, because they tested positive for mycoplasma while taking azith, you might want to switch to a different antibiotic for a while that is stronger such as biaxin. My son had recurrent positive strep infections, mycoplasma, mono and even though certain behaviors subsided on antibiotics, his OCD and behavior especially odd was really bad. I would not try steroids before ruling out Lyme and other tic borne illneses. Both my children have classic pandas symptoms yet with antibiotic treatment, steroid and ivig they still weren't where I would like for them to be. Even with recurrent known strep infections,pandas range cam kinase, typical treatment wasn't doing the trick. Steroids made them both very irritable and heightened anger and rages not to mention meltdowns galore. Via igenex my daughter tested positive for Lyme and my son has not yet , but is clinically being treated for bartonella. I wish it was a clear cut case and we all had the answers but unfortunately cases where mycoplasma is involved are much more difficult than purely strep. I wish you you luck during this difficult and stressful journey and I hope you find the right combination of antibiotics to help your boys. If you ever want to talk feel free to pm me. All the best, Tami

Hi can u tell me when nj made a decision to require the flue shot? My children are in public school and I know that the school offered to give free flu shots last year however, we were able to opt out. When did this all happen? name='fsilverpsych' timestamp='1310739342' post='117072'] Hello Eileen (DC MOM)! It's Frannie- from our NJ support group. I was checking back in specifically to see if you had any success with the NJ Vaccination issue. My son Jack (going into 1st grade after 1 yr in a private kindergarten), might not have a problem this year... b/c he is making titers to MMR and I think he is up to date on the rest... actually- we will have a problem given that NJ is one of those few states that REQUIRE an annual flu shot as well. His PANDAS episode started after having the flu shot, getting strep, getting swine flu, and then strep again- ALL in a month and a half's time. Needless to say, I don't want him getting vaccinated or getting the flu shot anytime soon! Hope it went well for you and the girls. Frannie

My twins have documented recurrent strep infections from a young age. I believe they had pandas first because I can't imagine that they would have had any reason to contract Lyme until they were older and went to camp. I never saw a tick but believe it's possible my daughter was bitten at camp when she was 5. She had what appeared to be an infected pimple like mark on her stomach. I thought she got stung by a bee . When I took her to doc they said it was folloculitis. This took a long while to go away and several other ones appeared. She tolde it hurt and had some pus in it. Not sure If that was a tic but no other signs of one. I know that there is a gene that some of us are testing positive which also makes us more susceptible to tic borne illnesses. My kids are positive for this gene it's I think Hldr4.

Ok Ty I was just concerned if being out in the sun would increase chance of a bad headache, wondering if o can take them to the beach. Ty, Tami

Hi does anyone know how soon after having ivig is it ok to be out in the sun? This is one of the many questions I forgot to ask sigh. Thanks! Tami

My experience with an infectious disease doctor was not great either. We had already had a pandas diagnosis by 3 doctors. Our ped felt that we should go to one since we had so many infections going on strep, mycoplasma and mono. The doctor basically dismissed all the labs saying it didn't mean anything and that my son looks fine on exam. Myson had a bad cough was pale and had OCD compulsions and a few tics at the time. Idont know your Childs symptoms or details but I would take an infectious doctors thoughts and comments with a grain of salt. Good luck! By the way my daughter too was like that from a young age, very stubborn strong willed and whiny screaming fits that were never ending. Till today 8 yrs old she's still like that. She has pandas and positive for Lyme via igenex. Take it easy, Tami

Oh no I hope you feel better and that this flair passes quickly. Speedy recovery, Tami

Hi Tina, Did your ped ever send the swab to the lab to confirm. I have found that that my son has tested negative on rapid yet was positive through lab culture. You might want todo some blood work on your son to confirm present or recent exposure to strep. You should ask for aso, antidnase b, streptozyme. While your at it you can test for mycoplasma igg and igm. I wish u luck!

Ziva, I'm sorry for that whole ordeal you were blessed to have such an empathetic woman there to offer assistance and a distraction. It's great that your other two kids were calm. Sometimes I have all 3 having a fit at same time it wears it's toll on me. Anyway it sounds likely that your 4 yr old also has pandas you should run some blood work to see what's going on with him. I have 8 yr old b/g twins who have pandas. My daughter also shows Lyme exposure on bloodwork. My two year old is such a good kid. He speaks so well and explains what he feels and what he wants. He is also being treated fir pandas. For the most part he is a pleasure to be around but he too gets his moments and has a separation issue. I can't go into bathroom without him screaming and kicking at the door. Every pandas child presents differently. All 3 of mine have high Cunningham scores but they act very differently. Good luck I hope they all get well! Tami

It most likely takes more than 10 days to rid mycoplasma pnemonia. It is very stubborn and difficult to fight off with many PANDAS children. My son had a very hard time getting rid of it. Every time we did blood work it was still there and elevated more and more. I would try to get a script for at least a month. Sometimes azith doesn't work and you need something stronger like biaxin. My son used to complain all the time that his throat hurt no matter what antibiotic he was on. Come to think of it that's one of the symptoms that subsided with him, he no longer does that. If you strongly believe your son has PANDAS you need to get in touch with a pandas specialist and get him on antibiotic for a long time until he sees improvement and then possibly lower dose to prophylactic to prevent from getting further strep infections. If you get labs run ask to test for EBV(mono) also causes sore throat. Good luck

tami -- i am sorry to hear how things are for you right now. i know what you mean and have been there -- like ds7 eating like a dog from a plate last summer at his cousin's birthday party and dh and i only happy he was ingesting food. as my sil (mother of the birthday boy) looked on - luckily, she's actually not judgemental but still -- all i can do is shrug and say 'you know he's been having trouble lately -- we're not actually condoning these poor manners.' or ds9 this past easter, threw his lego minifigure that my mom gave him, cried, stomped and yelled carrying on b/c it wasn't the one he'd hoped for. i remember carrying ds7 out of a rec center in full blown tantrum, with many onlookers star struck as i had to kick open the latch mid way up the door to get out of there, with screeching, clawing child much too old for that type of tantrum. and when they were younger i was so proud of how on the ball i was with manners and behavior. where is the silver lining? i don't know -- perhaps it's only that i am no longer judgemental when i see a parent struggling -- i just so feel for the plight. so i know it's troubling when the majority you're surrounded with don't seem to understand you're actually doing an amazing job as a parent but it just so doesn't seem like it on the surface -- whether tthey actualy do or not but you feel that's the scene to the outside world -- but all of us here get it and understand -- perhaps we should all go live on an island together -- we can take turns -- kid watching vs. margherita drinking. i hate to throw this in for you -- but. . . i really question the role of viruses for some kids. we see an integrative MD who uses a form of ART. ds7 tested for lyme but that has never seemed to be his major issue. he had many infections, most troubling being strep and a virus. ds9 tested for most TBI and strep. his symptoms were more separation anxiety and nighttime anxieties. as those cleared, i unfortunately gave him a probiotic that caused trouble. recently, it seems his more inappropriate overreactions and strikeouts may be related to HHV-6. i really do hate to suggest more testing and another path to follow. . . but, hav you discussed with your dr some of the viruses that can commonly be seen with lyme or can be problematic neurologically? Thank you for your response. The forum is great because we can speak bluntly and tell all of the real issues we deal with our children and actually have others who understand and empathize. Rather than those who nod and think well it must be the way your disciplining or not disciplining that they act in such a manner. It's sad that I can't plan play dates for them, their childhood is passing by.Anyway, I am not familiar with ART and I don't mind more testing only I am sent dor bloodwork and then no doctor does anything with the results. I don't get why they send us in the first place.My son last year had strep , mycoplasma and EBV so I guess that means he is suceptible to viruses. Especially since he puts everything germy in his mouth.What doctor do you see?