tired mom

I'm in the same boat as you except her IgM continues to stay high. We are testing again in Aug. My daughters Dr. only orders the IgM and does not seemed concerned about IgG. Her IgM has remained around 3000 for 8 months now.

So sorry you are going through this. I also had the repeating phases and it drove me crazy. Truly I never thought it would end and years of cbt never resolved it either. My dd is currently taking zithro and did 60 days of biaxin and I have not had to repeat myself. It took a few weeks with the antibiotics before I saw major improvements. Augmentin did not seem to work for my dd. If you forgot to ask Dr. T just e-mail him and in subject line write URGENT!! He has responded quickly to me in e-mails. Hope this helps. It does get better...

I picked #2 also because we have not done IVIG. Thats ok because everything is a maybe, Maybe I should try a diffirent Dr. Maybe a new abx, Maybe things will be good tomorrow, Maybe, Maybe, Maybe....

Hey, we gotta give your mom some credit for raising such and inspiring kid. I am amazed at how you became your own advocate . I am eagerly awaiting to hear about your appointment. Hope all goes well and enjoy your vacation

I would not go. You and your family have been through alot and there will be many more 4th of July partys to attend in the future. Just my opinion.

Don't be so harsh on yourself. Strep made your child sick not you. Many of us have not found the help we needed till years later. You seem to be on the right track very early. With the right treatment plan you will have your child back. Praying with you..

As wornoutmom has said we get "the look" and yes her face seems swollen. It is something that has been mentioned also by my family when they have seen her in her agitated state. When things get better there is that calmness that returns to her face.

Bless you for being so young and tackling this on your own. Maybe it is a blessing in disguise and you have someone" up there" steering you in the right direction. Hope things work out for you!!

I would not rule out your hunch that mycoplasma weighs in heavy here. My daughter, 7, tested positive for mycoplasma in January, and her Iggs remain high, though her Igms have returned to normal. She's had problems with strep in the past, but mycoplasma is her only current red flag. I've googled it a bit, and seen that absolutely psychosis is linked (though rarely) with this illness. So keep asking questions. I am. I think there is a rage link there. Not that rage HAS to come from mycoplasma - (it can be triggered by strep or others) but I think it's a big player. I agree that myco is playing a big role with the rages. Looking back the first exacerbation was filled with bizarre ocd behavior and rituals that were exhausting. The anxiety was high but I cannot recall rages at that time. I believe the strep brought on the pandas and myco left us with pitands. Nothing about this is easy but it was much easier to deal with minus the rages....

I think you made the right choice. When we had our dd's t&a done 4 years ago the ENT did not seem to think her tonsils looked bad. Following her surgery he came out shaking his head and told me they were a mess. He said they were chronically infected and falling apart when he removed them.

Sending happy hugs your way

YES RAGES!!! high IgG and high IgM..

I believe that 2002 is the year that alot of us began this journey.

I think any good Dr. would be ok with a second opinion. I understand you do not want to close the door on her but in no way should she make you feel like it is her way or the highway. In many illnesses there is definitly more then one doctor on board. She should welcome any information that is benificial in the treatment of your child...Good Luck

Here I am. My post was not deleted, it was written sometime in Feb. You can pm me if you want.

I am so sorry. I wish I had the right words to say to make you feel better. I understand your pain and how this consumes our life. I wish I had answers but I too am searching. Somehow we get the strength to stand tall again and keep fighting..It is such a bizarre ordeal that we go through but for some reason we were chosen to become the parents of these children so that makes you special. Keep the faith and give yourself credit for being such a caring mom. Take care.....

Sending best wishes and hoping things are going better now. Thinking about you and your family and sending extra prayers your way. Stay strong....

Hope that by the time you read this things have gotten better. I do feel for you because we had a really bad vacation one year too. It was during an exacerbation at that time and I thought the beach would be a calm place for her. Anyway since then we have enjoyed other vacations. Things will get better. Relax and enjoy your family!

Hi Brandy, Here is a way of looking at you situation from a whole different perspective. Go see your dad on father's day. This is your dad not her's. You are blessed to have your dad. I would give anything to have one more Father's Day with mine. Think of yourself as the stronger person and if she makes you feel uncomfortable and you feel the need to blow just politely kiss your dad, tell him it is time for your family to leave and quietly exit. Now you are the bigger person and SIL looks like an idiot. Hmmm true colors!!!!!!!

I have tears reading this as I can see the journey has been long for your daughter and your family. Congratulations to a very strong young lady!!!! Yes it has been a long journey but to tell you the truth one minute she was 10 and I swear all I did was blink and she was 18...I hope the medical field becomes more educated with this and helps all of you with young children. I hope your journey is much shorter.

Thank you from the bottom of my heart. I expect to take alot of tissues this evening, not only for me but for my husband who I think is now really showing all that has been bottled inside for so long.

Tonight at 6 I will be in a stadium filled with hundreds of people watching my daughter receive her diploma. Wow! who whould have thought we would have survived the last 8 years. I will be the proudest mother there knowing what she has endured during her school years. I know how hard it must have been to hide her ocd and deal with a brain that at times all circuits were firing. I read this forum daily and have experienced what most have gone through. I can tell you that when she had her second exacerbation her therapist felt that I should place her on disability because she was in a really bad spot then. I refused knowing deep in my heart this child would overcome this. She is by no means 100% but I would have to say 75% better now. Myco last fall was a real setback. My dd first episode happened at 10 and was very severe. I knew only of black and white pandas then and treated for ocd. Being scared of ssri,s for a 10 year old I only gave her a very small dosage and stopped it after 6 months. Symptoms vanised ,and she remained fine for 18 months. Symptoms came on again after a strep infection and so our journey began. I wonder till this day why her first episode went into remission for a year and a half without any treatment. I am also wondering that when her IgM's are in normal range again will she be fine again?? I have never treated with long term abx or done ivig. I have witnessed a saw tooth pattern during her teen years and at times was very hopeful that she was outgrowing it. She has just finished 3 months of biaxin which was treating the myco(very high levels) and will get retested next week. I hope that this evening with the closing of one door another one opens that holds a bright and happy future for a very beautiful young lady!

I am so sorry you deal with this. The way I handle my child is a day at a time and then pray for the strength to get through the next day. As you know there are some good days and I really enjoy how easy it is to breath on those days. Although we are moms, we are also human beings, and we realize what a fine line we walk between sanity and insanity.I have lost my patience many times even though I know I cannot stop the ocd by screaming at it ,but we just reach a breaking point also. I think it just takes its toll on everyone and sometimes its ok to have ourselves a little pity party... Spend some quality time with your mom when your having a good day. I hope that is very soon!!!

Someone help me out here. Does anyone remember reading that 50% of children will outgrow Pandas by late adolesence???? Not in my case though

My heart breaks for you as your situation hits home. My dd targets me just as yours targets the mom. I was told once that a mothers unconditional love is the reason we take the blunt of these horrible rages. I have said so many times that with everything this disorder throws at us the rages are the most horrific. As far as the medical system, there is nothing for our children when we need it the most. I have spent many hours in the ER when in crisis and have come home just like you -empty- and in the same situation that brought us to the ER in the first place. There is no safe haven for our kids when we need it the most. How heartwrenching!! I hope things are healing for you and wish you much needed strength to get through till your appt. God Bless!!