T_Anna Posted June 5, 2013 Report Share Posted June 5, 2013 Having a TERRIBLE day/night!! DS15 has regressed to behavior we havent seen since January! He has been stuck in the bathroom since 6:30am this morning. We tried to talk him out and he just started screaming and yelling "leave me alone!" Now he is crying so hard. What on earth is wrong? This morning I was excited that he went to the bathroom on a new day (not just Wednesday nights and Saturday evenings). I thought maybe something new, means less OCD, but it was wishful thinking. What do we do now? This is awful, my 12 year old is going to sleep at my parents, I'm lying in bed with my 10 year old daughter and the noise machine running. Can this be turning back the pages? Is it the tittering down of Luvox? I'm not sure how this will end. I would give him Lexapro, but he said he won't take pills while he is in the bathroom. He hasn't taken any pills all day. This is really a nightmare and I thought we were doing better!!! Saturday was really good. T.Anna DS15 Link to comment Share on other sites More sharing options...
rowingmom Posted June 5, 2013 Report Share Posted June 5, 2013 For how long has your DS been taking 1000 mg biaxin? Link to comment Share on other sites More sharing options...
T_Anna Posted June 5, 2013 Author Report Share Posted June 5, 2013 (edited) Since Wednesday (500 mg am & pm). He had been on it for days in Decrmber too (not sure how much though). T.Anna Edited June 5, 2013 by T.Anna Link to comment Share on other sites More sharing options...
4Nikki Posted June 5, 2013 Report Share Posted June 5, 2013 (edited) I used to hate it when DD15 would lock herself in the bathroom. One time she did and she kicked a 2 foot hole in the wall. I'm afraid she will rip the toilet off the floor. Today she ripped the bedroom door off the hinges and threw it down the stairs and it hit mom in the head. Mom is resting in the bed from a bump on the head. I asked DS when he got home from school to give DD the last SSRI prescribed (Abilify) by her psychiatric doctor (that we were afraid to try) which is one of more than half a dozen (SSRI's) that didn't have any positive affect. DD has been raging twice a day now since last week. She hasn't had a moment yet and it pasted 7 hour mark. The day I started my new job, Mom was left alone with DD and she was able to manage it. Anyway, I digress. Since DD has been raging again Ive been wanting her to lock herself in the bathroom because its one place she has learned to control her rage down to shouting. When she is out of the bathroom and raging it is difficult for Mom to handle her.DD is way more combative with Mom. Mom tends to try and intimidate her out of habit but it only escalates DD rage. The different is DD will only stay in there 30-45 minutes until her mind is back in control. But she hasn't done it for 5 days now. Edited June 5, 2013 by 4Nikki Link to comment Share on other sites More sharing options...
T_Anna Posted June 5, 2013 Author Report Share Posted June 5, 2013 4Nikki, I feel your agony. He finally came out half an hour ago (19 hours, ties his own record). Btw, we no longer have locks on any bathrooms because DH broke the door in December or January when DS wouldnt answer. When he came out he was Dr.Jackyl (the calm one), but with a huge blister on his lower lip. I decided to add back the anti viral until I can ask the dr tomorrow. All if a sudden he is accepting suggestions, even ate something when I mentioned his stomach needed something to feed off of, and was probably acidic from no food for 48 hour or so. This is getting so tiring and you feel so isolated. It's not like an emergency where getting him to a hospital will be helpful. T.Anna DS15 Link to comment Share on other sites More sharing options...
Hopeny Posted June 5, 2013 Report Share Posted June 5, 2013 TAnna have you considered reaching out to Brian Fallon at Columbia who is a psychiatrist knowledgable about Lyme? Since your sons test came up positive with Lyme specific bands, perhaps a different approach may be what's needed as unfortunately the current treatment has not seemed effective. I'm sorry you are going through this, it must be very hard Link to comment Share on other sites More sharing options...
nicklemama Posted June 5, 2013 Report Share Posted June 5, 2013 T Anna - I am so sorry you are going through this. I wish I had suggestions. 4 Nikki- abilify is not an SSRI, its an antipsychotic. Link to comment Share on other sites More sharing options...
rowingmom Posted June 5, 2013 Report Share Posted June 5, 2013 Emotional lability/increased raging were one of DD's herx reactions. 3-5 days after changing a protocol seems about right. Link to comment Share on other sites More sharing options...
T_Anna Posted June 5, 2013 Author Report Share Posted June 5, 2013 Thanks, I hope it is a herx. Doctor T wants to do another blood draw, thinks it's too severe a reaction to be turning back pages, Luvox reduction, etc. I haven't tried Dr.Fallon, no one from Columbia has ever mentioned his name. I will ask about him. Has anyone ever dealt with ID doctors at Stony Brook? Irony is that I thought we were improving until all craziness broke out last night. T.Anna Link to comment Share on other sites More sharing options...
4Nikki Posted June 6, 2013 Report Share Posted June 6, 2013 T Anna - I am so sorry you are going through this. I wish I had suggestions. 4 Nikki- abilify is not an SSRI, its an antipsychotic. Ok, I just assumed: psychiatric doctor = SSRI, I still have no clue as to what the difference between a SSRI and abilify is. But I'm willing to bet that neither does the psychiatric doctor. I hate the process of elimination game. I'm sorry, I don't mean to put psychiatric doctors in bad light, we've just had a really hard time. Link to comment Share on other sites More sharing options...
4Nikki Posted June 6, 2013 Report Share Posted June 6, 2013 Thanks, I hope it is a herx. Doctor T wants to do another blood draw, thinks it's too severe a reaction to be turning back pages, Luvox reduction, etc. I haven't tried Dr.Fallon, no one from Columbia has ever mentioned his name. I will ask about him. Has anyone ever dealt with ID doctors at Stony Brook? Irony is that I thought we were improving until all craziness broke out last night. T.Anna We have to do another blood draw as well but DD won't go out the house. She is not afraid of the needle, she's just afraid of the anxiety that comes once she is out. I have to ask the doctor to get them to come to the house. I will keep you and DS in my prayers. DD's doctor wanted us to admit her in the Hospital so they could do all the testing while she is raging but the regional district won't do the one on one service needed for developmentally disabled patients unless we dial 911. I told them there is no way we are going to put her through that kind of trauma. Ridiculously stupid rules! made up by people who I think have no real clue. We been approved since June 1 for in-home services that has taken us since November to get setup. It's about a week and still nobody from regional is moving. I'm thinking I have to make some craziness of my own to get some behavioral help. Link to comment Share on other sites More sharing options...
T_Anna Posted June 7, 2013 Author Report Share Posted June 7, 2013 4Nikki, thanks for the prayers!! Nurse from Apex (contacted by LabCorp) came yesterday to draw blood and was gone with 15 minutes - I love these nurses. T.Anna DS15 Link to comment Share on other sites More sharing options...
tpotter Posted June 7, 2013 Report Share Posted June 7, 2013 (edited) Thanks, I hope it is a herx. Doctor T wants to do another blood draw, thinks it's too severe a reaction to be turning back pages, Luvox reduction, etc. I haven't tried Dr.Fallon, no one from Columbia has ever mentioned his name. I will ask about him. Has anyone ever dealt with ID doctors at Stony Brook? Irony is that I thought we were improving until all craziness broke out last night. T.Anna We have to do another blood draw as well but DD won't go out the house. She is not afraid of the needle, she's just afraid of the anxiety that comes once she is out. I have to ask the doctor to get them to come to the house. I will keep you and DS in my prayers. DD's doctor wanted us to admit her in the Hospital so they could do all the testing while she is raging but the regional district won't do the one on one service needed for developmentally disabled patients unless we dial 911. I told them there is no way we are going to put her through that kind of trauma. Ridiculously stupid rules! made up by people who I think have no real clue. We been approved since June 1 for in-home services that has taken us since November to get setup. It's about a week and still nobody from regional is moving. I'm thinking I have to make some craziness of my own to get some behavioral help. OMG...idiots. They have no idea what a rage entails. Trying to draw blood during a rage is about the dumbest thing I've ever heard. Then again, DS's school (when he was in 6th grade) thought it would be "interesting" to see what his rage looked like I would make sure that the blood draws are looking for mycoP, and also see if you can get testing for bartonella and babesia. They can all cause rages. Even if the bart and babesia don't come back positive, I would definitely consider trying to get LLMD to treat for it. Edited June 7, 2013 by tpotter Link to comment Share on other sites More sharing options...
4Nikki Posted June 7, 2013 Report Share Posted June 7, 2013 (edited) A few days later and the abilify seem to be working enough that she changed and is ready to go to the labs. After that we will pass by the psychiatric doctor. At least he is very interested in her progress and condition. I just hope we can figure out what the right dosage is.They are so expensive though. I saw his bill to the insurance at 500 per hour and 325 per hour on the phone. Then he charges a minimum of 1 hour. Update, Got to the lab and they turned us away saying we needed to go to the other lab. I should have had them call the doctor. We changed DD insurance but kept the same group. we got home and after about 30 minutes she cried and then took a nap. After she awoke, she had enough courage to get into the car, DD had too much anxiety to see the psychiatric doctor though so we headed over to her PCP for a new lab form. We went to a closer lab we had not known about and there was nobody there. Yepee! straight into the chair with no waiting. Asked about in-home service and got a number he charges $45 for the home visit. Dr. B included checking for all the viruses and bart thing titers. I don't get why DD has less anxiety going into the lab to get a needle poke and seeing a doc that just talks sends her over the edge. Edited June 9, 2013 by 4Nikki Link to comment Share on other sites More sharing options...
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