tired mom

This morning things were bad. Really bad. I thought for sure we were going to end up in the crisis unit and off to the psyc ward. With everything out of control and that stupid helpless feeling u feel when you don't know what to do to help your child. I swear if we ended up in the hospital they would admit me. Sometimes I feel like a lone soldier in this dirty war. The thought of having to explain my daughters condition to yet another person was overwhelming today. Yes, today I am weak, and the fight in me is getting weak too. I was at my wits end. Then Dr. T responded quickly and put things back into perspective. With 2 weeks off Biaxin and just recently starting up again we may be seeing a die-off. We are adding steroids to the mix so I am keeping my fingers crossed. I hope tomorrow starts off better...

Oh my, Not only were my husband and I on different pages sometimes we were not even in the same book. In my personal experience I chose to keep my daughters personal problems her own. I however, did not have issues in school. Many of my closest friends are unaware of our problems. The people I confided in were the ones that could help me, for example, friends who worked in the psyc. fields and some doctors who are friends of mine. This illness is complicated and hard to explain to someone who does not have a clue what is like. When I look back now I know in my heart I made the right choice. With only one month left till my daughters high school tenure I am so glad with every choice I made.(now it is time for my husband to have some humble pie)

When my soon to be 18 year old daughter had her first exacebation at 10 I was clueless as to what was happening. Every doctor I took her to said worst case of Ocd they had ever seen. It was the most bizarre,scary,frightening thing I had ever seen. On a scale of 1 to 10 with 10 being the worst she was a 15. I was scared of psyc. meds at that age and only put her on small amounts for about 6 months. For whatever reason all her symptoms went away,no antibiotics, no ssri's and we went back to normal. 18 months later it came back, worse then the first time. This is when I discovered pandas. Through the years I have seen improvement but this past fall she was positive for myco and symptoms came back. She has gotten bad but it has been moments not days and days of rage and irrational distorted thinking. What I guess I am trying to say is I do see healing and when things get bad they don't get as bad as they used to be.

My daughters symtoms are only evident in our home and with family members whom she is close to. She was always able to hold it together in school but I would pay a dear price when she came home. One therapist told me that if she spent more then 2 weeks in a different home her symptoms would manifest there. This is true as she spent 9 months at my sisters home because she could no longer function at her own home during an exacerbation. Sad time.... Anyway her symptoms did become worse there after a few weeks but never got as bad as at home.

So sorry, but it will get better again. It feels like a rollercoaster and someone needs to stop the ride. Hopefully tomorrow will be better and the next day better yet, Stay strong!!

I am happy for you too! I hope you will continue to be blessed and so glad hope has gotten back into your heart. God Bless..

I'm wondering the same thing. Plus, I don't know when to say we're finished. We are at day 25 or so with 1 more 10 day refill which I plan to use. Dr. T. mentioned eventually going to a prophylactic dose, but I don't know if I'm willing to risk it right now. I'd rather wait until May when the weather has dried out a bit and exposure to everything that is still going around is down. We didn't test positive for myco, but the Biaxin has definitely worked well for us. I think we were dealing with intracellular strep. What was the Sammy Does of Augmentin? We did Augmentin for a month with no positve results at 1000mg a day. The biaxin worked quickly but there were a few bad days here and there .

I am confused as you. My daughter's IgM were thousands out of range and high IgG and that is after having been positive 5 months ago.

Right now no antibitics. Dr. T ordered the first script and I am expecting to hear from him soon before appt. I did have my son to Dr. about 10 days but she did not feel he needed an antibiotic. She is not in on Thurs. so I am calling first thing tomorrow. She told me the last time I was in she needed a letter from Dr. T before she would run any more tests. I think because she is the only one in her group who treats Pandas/Pitands she is being questioned about prolonged antibiotics. Although I can get a script from Dr.T filled she needs to write all bloodwork so insurance covers. WAS your son positive for myco?

We are going to see Dr. T in a couple weeks again but I don't know what to do with the gap inbetween. My daughters family doctor does not want to run the bloodwork for a couple more weeks. She has been good to us but I really don't think she knows the severity of this disorder and how it impacts a family...Sigh..

We finished a month course of Biaxin with some promising results and after a few days without it things seem to heading downward. Last night was bad. While on the Biaxin the swearing was almost completely gone as were alot of other symptoms... until yesterday. My daughters most recent bloodwork showed extremely high IGM and IGG levels for myco. I don't know where we are going from here. My son has been coughing lately with no other symptoms but I am beginning to wonder if he is some kind of carrier. My daughter was treated for the myco back in the fall which makes me wonder what her levels were then (we only had a positive on the bloodwork). Anyone else finish the Biaxin course? What is the next step??

We just finished a 30 day 1000mg biaxin. Don't know where from here. We see Dr. T also.

I think you did a pretty good job explaining that. You can give yourself a pat on the back.

This is where I get confused. Does it mean if a family member is a carrier the child will not fully recover even if they are neg for strep.

I have had a CT done a MRI and an EEG all of which showed nothing. Had I known then I would have requested a pet-scan. All of these tests were done when her symptoms were at there worst.

Ok, I was going to post this last month but felt like I might sound as crazy as this disorder can be. My daughter has been on Biaxin for nearly a month and things have been improving at a pretty steady pace. This morning things were not so good. My daughter has always verbally abused me when in rage form and sometimes the things she says are so hurtful and demeaning that it just ruins my day. I have always been her human target both verbally and physically. Sometimes I think bi-polar would have been easier which is much controlled on meds. Anyway it is what it is and I know the ones who deal with the rage know where I'm coming from. My question is, Does anyone notice a change in symptoms in correlation with a full moon? Sounds crazy but after having so many good days and a blowup this morning and a full moon tonight it just makes me wonder if there is some kind of connection with the gravitational pull. I have taken notice to this several times.

My daughter began breaking out in hives a few months back. They also appeared every 12 hours but in different forms. The first time her arms almost looked burned and the next time big welt-like ones and then her lips swelled which is when I took her to the er. At this time her symptoms were increasing and I tried invain to tell the dr. about PANDAS which I just as well could have spoken to the wall. Anyway her family doctor ordered some bloodwork and it did come back positive for myco. She had no symptoms at the time for myco but had been very sick a month before.

So happy for you and your son. It is so true how we find simply joy watching our children enjoy life as they should. God Bless and I hope things stay well for you.

Just found most recent bloodwork and HGB was below normal range. Also cell profile results show low WBC and MPV.

In my personal experience the words I would use is an acute onset. It did not happen overnight but in a few weeks my child was unrecognizable. Her OCD rituals became more and more bizarre and so did the duration of performing them. AT this point 7 years later I would have to say we are more Pitands then Pandas. I do believe that strep loaded the gun but now there are different bullets firing it.(for example myco.)

Hi Rachel, I'm not sure. My daughters Dr. won't be in till Weds but the nurse told me her number was 3202 (700 is the norm) and 5.0 for myco. Does that make sense??? I should have went to med. school. Michelle

tired mom, About the cursing is it intentional? That is or was our #1 tic .Is your ds tics or anger? Melanie I would have to say it stems from the ocd and a high level of anxiety. She has not used foul language since starting Biaxin.

Hi Rachel, I'm not sure. My daughters Dr. won't be in till Weds but the nurse told me her number was 3202 (700 is the norm) and 5.0 for myco. Does that make sense??? I should have went to med. school. Michelle

For the first time in a very very long time I am having somewhat of what a normal day should be. It has been 2 weeks since we started biaxin and everyday I see more improvement. There have been no rages,no cursing, and no anxiety, and minimal ocd. I guess you can say I am grandfathered into this disorder since my daughter's first episode happened when she was 10 the year was 2002. Her first episode ended after 6 months and at that time she was treated for ocd only as pandas was never mentioned to me. I stopped the meds she was taking and she remained fine for 18 months and then" it "came back. So I started researching ,read about Pandas and she fit the criteria and so the story begins. I can't say the medical field failed me but they were clueless and many never heard of Pandas. Long story short things are looking good. I am so glad I found this board and people to connect with. I am so grateful we went to Dr. T. He truly cares about all of our children.