tired mom

Mom -- I actually met a young man at the IOCDF conference in July who had this brain surgery a couple of years ago. I guess he had been through every other possible intervention (met his parents, too), including a stay at the Rogers Memorial inpatient program in Wisconsin, and he was still completely incapacitated by his OCD. I'm not certain of the numbers, but I think only something like 13 people thus far have actually had this surgery? The young man . . . 19 years old, as I recall . . . still has some OCD, but his parents say that the surgery was the only thing that made him functional again. Sounds pretty scary though, I will say. There was a session at the conference on this surgery; my DH attended but I couldn't bring myself to do it. Is this procedure like the one for Parkinson's? I kinda remember seeing something with Michael Fox and some kind of brain surgery.

So Sorry!! Hear are some words of encouragement. My dd is 18 now and is away at college and loving it. Four years ago when she started high school I never could have imagined her going away to college. At 14 she was at her worst with anxiety and panic attacks and rages. It may be some hormones playing in at this time along with everything else going on. Looking back now 14 and 15 were tough years. The fact is you did see some good times and you just hit another bump. You will get through this. I truly feel for you and your son. It is sooooo mentally and physically exhausting. Just try and stay positive.

Just want to say thinking about you and Allie today! Don't know what God has in his mind for you this time but I know He chose a very special mom for Allie!!

I have to agree with everyone about ssri's. Although every child is different I don't think ssri's help very much or at times are just a bandaid(which we need at times.) I have dealt with rage and aggression and it seems that it was all linked to a myco infection. Abx got rid of all the rage and aggression with my dd. Glad you are having the bloodwork done and soon you will find your answers. Hang in there!

Yes,I understand everything you said and I have been there many a time. Mine wished I was dead and would say things to me that would bring me to tears. I too have been failed many times by the ignorance of the medical field. Keep moving forward and see one of the Pandas Dr. if that is possible. Hopefully that white paper should be out soon. Has anyone heard anything yet??????

Because we know we're right & we have something to fight for. I feel a bit odd saying "we" when we're in different positions, but we're both on the same side of this battle so I feel like I'm fighting with you guys. I can't speak for your son but I can say that I hate it when I talk like that. We have the flash "rages" but with me I am just ALWAYS ANGRY no matter what's going on, & that oftentimes gets taken out on my poor Mom. We are stressed out, frazzled, frustrated, enraged, annoyed, furious, irritated, & every other angry adjective you can think of at our own stupid bodies more than anything else. I don't like knowing all of the trouble that I cause my parentals as well as every doctor that doesn't know what to do with me, & oddly enough that more often than not gets channeled right back into the very people that I don't want to hurt. We LOVE our parents but on most days I, personally, just hate everything. This sounds negative but it's really not.. All I'm trying to say is that I can't imagine how much it hurts to have your child say things like that to you, but it's not because we honestly think that. I hate myself for all of the stress that I have brought into my Mom's life, & when I do take it out on her it's because I'm angry at myself because there's nothing I can do to make it any easier on her & I know that it's my fault. As far as your neurologist goes.. Don't listen to him. You know your child better than anyone else, & if he's not understanding & not giving you what you both need, find someone who does. I hope you feel better!!! Emerson..You just made me cry because you explained from your heart how it feels. I have always and continue to be my daughter's "trigger". I always felt that the verbal abuse I take is all those feelings she has bottled up inside. I HATE that you guys have to go through this. Know that you are a beautiful person inside and out..

Your story sounds so familiar to when my dd was small. Your gut instinct allows you to know that his behavior is something beyond his control. The rages and having to have everything perfect(which it never seems to be) is so difficult.I always hated school projects because I knew the outcome was never good. Maybe you could try a 5 day steriod burst and see if there are any results.

I am so sad to hear this. I can relate to the Dr. thing because my dd's Dr. is also the only one in her group to treat Pandas. When she is not in I don't even bother with the other associates in the office. I hope and pray things stay ok until your Dr. gets back.

My dd is 18 and still goes to a ped. Her ped.takes children till the age of 21. I was fortunate to find a pandas friendly dr. when she was 14.

I want you to know that you are not alone about all the feelings you feel. I used to tell my mom at times that my daughter brought me no joy and then cry because I felt so quilty for saying that. I love her dearly but sometimes it is so difficult to seperate the illness from the child. When those moments of normalcy are there it makes it so much more difficult to go back to all the insanity, I am glad you feel better and know we are there for you for a shoulder to cry on. God Bless!

Hope someone chimes in and helps. It has been posted numerous times and I can not seem to find it either.

My dd was on 1000mg a day and day 5 was horrible. After that it was a miracle drug. She did relapse after she stopped taking it and we did a steroid burst with very little effect. It has been posted that steroids and myco may not be a very good mix.

My daughters levels still remain elevated and it has been 10 months.

Hi Emerson, The symptoms you may have had would be more flu like. We did not suspect myco last fall, it was more like swine flu. It was by chance we found it when 2 weeks later my daughter began breaking out in hives. Her Dr. is pretty good and tested her for myco because of her hives. She was positive with an active infection.

I hope all your tears continue to be happy ones

DITTO!!!!! Been there-Done that Waste of time and $$$$

You never cease to amaze me. Hang in there kid, things will get better. I have been on this journey for a very, very long time with my daughter. The irony of all this is that most of us are parents on this forum and we are searching for answers for our child. You are the child and seeking help. For most us here it was our gut feeling that lead us seeking answers. We knew our children were suffering from much more then a dx of ocd or tics. The dr. you saw may be very good but not good enough to help you with your situation. Your gut feeling is most likely right. I have said a million times that I have no doubt that strep fired the gun and now there is all kinds of bullets. My daughter went away to college on Sat. Eight years ago I was thrown into this bizarre world. I have lived through some horrible times and we survived. My daughter is now 85% bettter. From what I have read that is as far as some get. We did not do IVIG or PEX or any longer then 3 months of abx and yet there is healing. Believe me if I knew then what I know now I would have sold my soul to get her PEX. What I am trying to say is maybe as time goes on you will start to feel better. Giving you a big hug from one of your cyber mom's...

Mine leaves Sat. also and like you I have been emotional. The other day while cleaning I found a little notebook that I had saved from when she was 5 (pre-panda's) and while looking through it, on one page she had written Katie loves Mom. That was it. Cleaning was done and I grabbed a box of tissues. I am so happy your daughter is doing well after IVIG.

My dd is going off to college and I decided that with many cases of meningitis being seen with college students it was best for her to receive the vacine. I was surprised when she had her appt. last week that she had already received it in 2008. I don't remember it but I guess there was no side effects.

I wish I had some good advice for you but all I can offer is a cyber hug. My dd also gets sooo angry. The rages and hurtful words are at times the most difficult to handle. You always have to seperate the illness from the child. This at times becomes very trying. My niece also exibits the same behaviors and both my dd and her have tested positive for myco. My niece also had Lyme. I hope you begin to see improvement.

I get it. I live it and I HATE IT. Good luck with your appt.

I just wanted to suggest that maybe you can have Dr.K's office fax your medical records to Dr. Goebel. If they can do that for you then make sure you get copies of everything for yourself. Like someone also posted always get a copy of your bloodwork results. BTW Good Job!!

Hi Kay, My dd is 18 and 125lbs. Has taken Biaxin 1000 mg once a day for 3 months and did see improvement. July we did a month of zitromax 500mg. Currently her IgM's remain high and 3 days ago started on minocycline 100mg once a day and 250mg zithromax. JT's mom sent a link to me about macrolide resistance being seen with myco and I mentioned this to the doctor. Will let you know how things are in a few days. Dr. is going to run alot of bloodwork in 10 days and will take it from there.

Would the testing and aggressive abx need to come before PEX? I did not schedule it yet, so I want to be sure the order is correct. Also, I assume Dr. T supports PEX? I assume he would support as he suggested to me that if abx's did not work for my dd IVIG may be needed.Good luck with your appt.

Sorry your having such a rough patch. As far as your appt. Dr. T is very knowledgeable and thorough. He is very easy to talk with and he seems to be able to cover all the bases with your first appt. Don't worry,I think he will be able to steer you in the right direction. Please keep us posted.