JenniferG

Hi My twin boys (6) had their tonsils and adenoids out on Tues. The Microbiology result came back as: Alpha Hemolytic Gram Positive Cocci Non pathogenic Neisseria species Now, Friday my dd10 who is on daily Augmentin had a positive rapid strep. She was changed to Azith. She did say she had a little sore throat on Th and Fr...which is now gone. Her symptoms (anxiety, OCD, mood swings have increased over the weekend and now she is starting with a fever). She was on Azith every other day and tics started a couple of months ago. And keep increasing. Two weeks ago was put on Augmentin 400mg 2xday..(64lbs). And the tics continue. Both boys also started with a fever yesterday. They are not on any antibiotics since surgery. Is the above result the same as the rapid strep bacteria?? And I did another home rapid strep this AM and it was instantly positive...Fridays took a little longer. ANY input would be appreciated. I am going to call Pedi.....is Biaxin the next choice? And should the boys be on their Augmentin or something different?? THANKS!!!!

Started Clindamycin on ds6 Monday. Started to finally drain sinuses. Then all of a sudden Friday complains of sore throat. And he developed a fever. Pedi did not want to do anything on Sat. Saturdayfever 101.3 and developed scarlet fever type rash....trunk and legs. Coincidently I put a couple of drops of GSE in his bottle of water. Fever broke in the middle of the night and now just has red cheeks and white around mouth. Now has sore joints...knees and ankles. 1. Could GSE "bring out" strep? 2. So frustrated, I started Augmentin on my own today. Bad move??? Continue or stay on Clindamycin? Appt tomorrow with Dr. Szackas 3. Why didn't the rash appear earlier in the week when I started Clindamycin? Did the GSE bring it out or is the Clindamycin not covering the strep??? TIA!!!!!

You can buy rapid strep kits online. They are the same as the ones the Pedi uses. We went in today. She is speechless. She suggested maybe ER visit with a shot of Rocephin....but then said if I had it here I would give it, but I don't want to send you to the ER....We have an appointment on Monday with Dr. Gail Szackas...hopefully she can sort this out. He had a 101 fever this AM. Gone now on Motrin. Sinuses are draining well and ears look much improved, so the Pedi did not want to change anything. Is it possible that the test was positive strictly because of the strep draining down the back of his throat....and not actually "strep throat". But why the sudden onset of a fever?

Long 2 months. Christmas +rapid strep on Aug 300/2xday (Sons are 40lbs). That was their Maintenance dose. Put on Azith x5d. Throat better but sinus and ear infection. Changed to Omnicef...10 days later. ...still ear infection and sinus infection..change to Bactrim. OK but not 100%. Then Starts to complain of dizziness and nausea...Monday Left bulging raging ear infection and sinus infection...-rapid strep. Sinuses FINALLY start to drain. Amongst all of this starts to complain that everything that he eats he feels like he is going to choke. Tonight he is complaining of a headache and out of nowhere says his throat hurts really bad when he swallows. Temp 100. I did a home rapid strep...positive!! On Clindamycin. Tonsils are bigger than normal and have white junk on them.. Thoughts????? I thought Clindamycin was the be all, end all??

Because of all the meds my 3 kiddos are on......antibiotics, anti fungals, anti virals +supplements and the plain fact of PANDAS...they don't eat. Every meal time is a battle....there isn't any appetite at all. Has anyone tried anything to stimulate appetites?

I have been on this board for a few years, always about my dd10. Well, now that she is doing OK, my ds6 is flaring! He had a positive throat culture on Aug. Tried Azith, Cefzil and Omnicef. He has been sick now for close to a month...strep throat, sinus infection, and an ear infection that is now double ear infection and croup. Our Alt. MD (whom I bow to on a daily basis for getting my daughter back) has put him in Clindamycin 300mg 2xd. He is small....40lbs. Until further notice. Anyone use Clinda long term? He doesn't do well with probiotics, so you can see my hesitation. And he has 2 doses in him and already has a bellyache. Thoughts??

We have sen an LLMD and he did not think she warranted further testing.

Can you post pics on this forum? My dd got a bug bite a few weeks ago and it is still there and bothersome.

I'll be darned!!! It is Ranbaxy!!! Ugh!!

Her Parvovirus B-19 are High (6.9) Normal is <.90. How long does it take to "clear"? She was on Valtrex 1000mg BID for a few months and we saw a change. But really upset her belly. She is started back on it at 500mg everyday. An now is developing sores in her mouth....but on the bright side, anxiety is lessening.

She has been tested several times. Always negativeexcept for P41 occasionally. And it was negative after H Pylori treatment (spirochete)

Haven't posted in awhile. We come across some new things....added a new MD......LOVE her. Discovered yeast, started treating. Also in Azithromycin, Valtrex, probiotics, Sach B. still has dilated pupils and complains of being tired ALL THE TIME. CBC/Iron OK. Any thoughts, school starts in 2 weeks, she is already saying she can't go.

I agree with Hopeny. Dr. Szackas is amazing.

Yes it does say the MAO is +\+. Strange. LLM--how did you test for metals? Thanks!

Hi! I would like to anyone who is contemplating using 23 and Me because of the wait time to know......I just got my daughter's back today and it took 4 weeks!!! I was so surprised. I have so much learning to do. But, here is what Genetic Genie has told me so far: +/+ COMT V15M COMT H62H VDR Taq MAO A R297R MTHFR A1298C +/- CBS C699T Yasko recommends supporting CBS mutations and healing the gut before starting supplements. Since she is only hetero for one CBS, does that "qualify"? The +/+ mutations combined confuse me......especially the COMT / VDR Taq combo....does anyone have the +/+ for both? And how are they treating? Any insight would be greatly appreciated! (ahem..LLM ) Thanks!!

Does Nystatin and Ketoconazile kill Sach B??

Here is a list of my ds9 meds. I know that you need to space probiotics and antibiotics. But, can everything else be taken together. And does anyone know if Nystain and Ketoconazole kill Sach B? TIA Valtrex Nystatin Ketoconazole Fish oil CoQ10 Vit D Vit C Adrenopath Nasonex Nasal Spray Complete Probiotics Sach B Culturelle

We have tried Enhansa several times. Each time with negative (hyper, emotional) results. I was told to try to start really low and slow. So, we tried starting at 1/4 capsule. Then we gradually moved up. Every so often when we increased we would see red, itchy cheeks, emotional liability, increased OCD. Now, she is on 150mg AM and PM. We have had great strides with her new treatments... Valtrex, Nystatin, Ketaconazole. But, we still have OCD with the intrusive thoughts. My question is this....if Enhansa is immune stimulating, could this be causing increased OCD symptoms? If we avoid vaccines and exposure to other sick people to avoid stimulating the immune system because it brings on symptoms.....isn't this the same thing? I realize it is also and antiviral, antibiotic, anti-inflammatory and anti parasitic, but we could we be doing more harm than good?

My moms MP numbers have been rising. Now Dr. B's office is recommending treatment. She has CHF, DM, HTN...and lives with us. Macrolides, Minocin and Cipro are all contraindicated with heart issues. Now what? My dd9 has been in an exacerbation for 9 months.

We have added it. Started at 75mg in AM and worked our way up. We are now at 150mg B L and D. It is better absorbed with food. We saw immediate die off with the 75mg and with each increase.

Thank you! The meeting today went very well. She is implementing a 504...her suggestion. She is willing to start her back at a very slow introduction....1-2 hours a day as progress from there. And she recommended that we do all of this BEFORE I hand in her medical note to return to school, so my dd9 is totally comfortable before we withdraw the home tutor. She said, "once She is back in school and the tutor is gone....she's gone until another exacerbation." She was familiar with PANS and is a very proactive principal. Hope it all holds true!! Thank you for you input!

Meeting with Principal today. What is the best printout I can hand to her that clear and concise? She is very open and understanding, but I want to be prepared.

Thank you.

150mg with Breakfast. It is supposed to be for 5 days then go up to 2xday

That would explain why she feels so horrible.