tired mom

I wish I had answers for you and know by your words the heartache you feel. It always seems we go 2 steps forward and one back. We leave a panda's specialists office feeling on cloud nine and retreat back to our homes still searching for answers and taking matters in our own hands. Maybe you should consider removing his tonsils especially if they r on the large side. When I had my dd's removed at first the ent did not seem to think they looked too bad, but I pushed to have them removed and he came out ot surgery shaking his head and telling me what a mess they were. Sometimes the back of them are all pocketed and that is where the strep hides and antibiotcs won't touch it.

I know how scary that sore throat can be and hopefully things continue to improve. No PANDA'S symptoms yet is a real good sign that she is healing. Best if luck.

I know there is bloodwork done that will only give a - or + for myco. If your dr. ordered the IgM and IgA's I think you will be ok. Just have it drawn at a hospital instead of a walk in lab. Hope this helps.

I posted before I picked up the scripts. Last nite I noticed the dr. prescribed minocycine(thanks JT's Mom). Has anyone used this one??

I did mention my concerns to the dr.and I do trust her completly. She is also just starting on birth control for medical reasons and personally I hope it helps with her hormones because she gives pms a whole new meaning. Along with all this she is also starting a pill for her sweating issues. So time will tell...

Yes mine once removed everything that was on her walls. Her ocd which only manifests mainly in her own home has made her do the weirdest things.

Just got off the phone with the doctor and my dd IgMs remain high.She ordered Z-pac for 5 days and added doxycycline for 10 days. If she seems to be doing better she mentioned keeping her on the doxycycline for a longer period of time. I am a little nervous about using 2 abx's at the same time. College is 2 weeks away and hoping things turn around real fast here.

It seems putting up with regular teenage issues and hormones would be a piece of cake for us parents.

My niece also suffers from this and we question if she became co-infected from my daughter who stayed at their house for 9 months during an exacerbation where the ocd was over the top in her own home. At the time my niece was 3 and started to repeat " I have to pee and you won't let me". I also question if my son had a mild form. Although my niece suffers she does not exibit the full blown symptoms my dd has and my son just remains questionable. So does that mean the symptoms decrease with each child that becomes co-infected with the original carrier who had full-blown symptoms? My head spins trying to figure it all out.

I am guessing the chest spasms are an ocd thing or is something really happening? Either way it does not matter. If a child has an ashma(spell check) attack at recess and needs a breathing treatment and the children become tramatized does that child need special ed?? Oh I think we all have a special place in heaven...

JT's Mom - Thank you for the information. I phoned Dr. today but results were not in yet.I am glad now because when she calls Monday if the IgM's remain high I will mention these alternative abxs to her. My daughter is 18 now and we found this Dr. 4 years ago and she has been great. It is nice to find a dr. who listens and is not afraid to think outside the box. Thanks again!!

A few months back it seems like Biaxin was the miracle drug for the myco. Augmentin will do nothing if the symptoms are from the myco. After 3 months of 1000mg biaxin followed by a month of zithtromax(500 mg.)some symptoms remain. I am waiting to hear from the doctor to see where the IgM levels are at currently. They have remained very high for the last 10 months despite the antibiotics. I wish I could be of more help but I too am still searching for answers and the right protocal. Best of luck...

He can, I'm just waiting to hear back from him. Do you know this doc was so adamant about not giving me abx unnecessarily, she almost insisted on giving them to us in liquid form so we couldn't "save" any? When my dd7 piped up and said she didn't want liquid, she tersely looked at me and said "I want your word you will stop and throw the rest out if the culture comes back negative?" WHEN is that darn white paper coming out?!?!?! I hear you!! Where is that white paper that will give us all a chance to say "I TOLD YOU SO"!!!!!!

I don't know what kind of insurance you have but with ours any doc can call in a script but an in network doctor needs to write the orders for bloodwork and such. Check out your insurance and maybe Dr. K can call in a script for you.

No it is not bad, it was explained to me that it is a migraine that you get in your eyes instead of your head. The lights are very bright or in my case sometimes neon blue and zig-zaged shaped. Your vison does get distorted for awhile and sometimes a dull headache will follow. Stress can bring them on. I also find, if he ever has it happen again, wearing sunglasses help and keep the room dark till it passes.

sorry for the double post my computer is acting funny. Anyway I did not see your previous post but saw someone mentioned he was seeing flashing lights. I am just curious if the doc mentioned optical migraines? I get them all the time and they last for about half an hour. It was pretty scary the first time it happened to me but now I know to take tylenol and lay down for about 20 minutes and then the flashing lights go away.

Hi Melanie,

That's a tough one to answer. I have always witnessed a decrease in the rituals first and then they would stop comletely. At times one would replace the other with the latter one much shorter in duration. Take notice if the anxiety level is low that is always a good thing.

I could be wrong but I believe Risperdol like Abilify is used along with other SSRI's not alone. I tried both with my daughter and found risperdol to be very sedative with her. She was young when she had taken it around the age of 10 and then again at 14. What I found interesting is about 4 years ago I contacted the lab where Swedo worked and spoke to a women who also worked in the lab. She was very helpful with all my Pandas questions but informed me at the time that the study they were doing then was using a new drug for OCD. She told me my daughter would be welcomed into the study and assured me she would not receive the placebo pill. I declined because I wanted to get to the root of the OCD not mask it. During our conversation she suggested at least 3 times to consider stopping the risperdol. I was never comfortable with that drug and I was able to realize this women knew something but was not able to come right out and say Stop the risperdol. After that phone call I never gave it to her again.

Sorry you did not get much help. I know the feeling where you may just have well talked to a blank wall. It makes me wonder if all the non-believing doctors would sing a different tune if there once healthy child changed overnight.

here are some suggestions 1 Mycoplasma IgG+M 2 Anti-nuclear antibodies 3 Anti-ds DNA 4 Anti-streptolysin 0 5 Anti-DNAase B 6 SMA-20

I cannot remember the name of the abx my niece took prior to t&a but I know she was testing positive for strep while on abx and they added one that kills it on the surface. Whatever the abx was I remember it made her urine and tears red.

I know what those rough days feel like and today I hope He holds both hands. Keep the Faith!!

Maybe contact Dr. Kenneth Ginsburg. I know he has published books and he specilizes in behavioral issues that impact upon physical or emotional health. He is not a Pandas Dr. I have personally met with this man and he is amazing. Who knows, maybe if we contact him he may want to board this train. Just a thought...

It is so hard to think that things will ever get better when your going through a rough patch. It sounds like your headed in the right direction and soon you will have some "normalcy" back in your life.