AmbersMommy

Hi, I have been computerless for around a week now, and feel like I have been a month without needed therapy because I couldn't log on to this forum! This could, in fact explain some of my present state. My dd, 6 yrs old, was just diagnosed several weeks ago with Lyme. She got tested through Igenex. She was also diagnosed a few months back with PANDAS by Dr. B. A psychiatrist we saw prior to being officially diagnosed with anything indicated that she thought my daughter was possibly autistic. I am just completely overwhelmed. I don't know when she got the Lyme, but I suspect she has had it since she was 2... or maybe she had PANDAS and the Lyme was more recent. I don't know and it makes my head spin because I don't know what to focus on first Lyme, or PANDAS. We are scheduled for IVIG next week Wed. and Thurs. My husband is going to be gone for the first week of October and I am freaking out. I don't know if I can survive a, "turning back the pages" type reaction if it happens and my husband is gone. I have no family here. I almost completely lost it when she was first hit with her myriad of symptoms, the worst being horrible hallucinations and sleeping only 4 hours a night. My husband was gone when her symptoms started at that time. I think I am a little shell shocked. I just read him the riot act because he has to be out of town for a week. Not logical, I know he has to go for work, but I think I might go insane. I have basically been keeping my dd in the house because I am terrified of her getting sick. She has a tutor that comes to the house 3X a week. I bring her horsbeack riding once a week, and she goes to physical therapy once a week. My daughter is unresponsive to me at times. She acts like a complete lunatic!!!!! She has been hitting her sister a lot lately and doesn't seem to care if I see. She completely does not listen to anything that I ask her to do. No encouragement..positive reinforcement, negative reinforcement..nothing works to correct her behaviors. She was NOTHING like this before. Now she won't do anything for herself hardly at all. She won't dress herself, she won't brush her teeth, but I think that may be a weird sensitivity thing. I am going nuts!!!! I don't feel like I can help her anymore because I, myself am starting to lose it. A psychiatric nurse friend of mine says I have PTSD...Post tramatic stress disorder. I think it would be more aptly named Pandas traumatic stress disorder if this indeed is the case. Nothing is normal anymore. She just acts weird all the time. The choreiform movements have stopped. She does have some weird kind of OCD thing with the way she walks..at least I think that is what it is. She still laughs insanely for no reason I can see, albeit less often. Sometimes for very brief periods of time, maybe less than an hour, she seems almost normal, and then she is gone again. I would almost rather that not happen, because it is devastating every time she goes away again. I don't know how to feel about my child anymore. I hate to admit this, but want to know if anyone else feel this way sometimes. I don't even like her anymore. I know it is not her fault, and I love her dearly, but I do not like her. I desperately want to like her again. I feel like what I am feeling is completely wrong!!! Have any of you felt anything like this???? Am I just being whiny?? I don't think I can just, "suck it up" many more times. I will keep trying for her to the best of my ability, but my ability is beginning to wane.

I am at my wits end. My daughter hasn't been able to sleep at night on a regular basis since May. It varys how early she can get to sleep. Some nights it is 3 AM while others she can get to sleep by 9:30 PM which is absolutely a gift. Is there anything I can do to get her to sleep at night? Has anyone had any experience giving their child melatonin. My dd has had hallucinations that are either PANDAS related or Lyme related. I don't know which, and probably never will. I have been afraid to try the melatonin for fear of the hallucinations returning and/or other neurological symptoms becoming exacerbated. Any insights on what works would be greatly appreciated.

I found an awesome paper on Lyme. It gives specifics for what supplements to use. I googled the doctor who wrote it. Very impressive. http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

Did he have any co-infections? What treatments did you use to get rid of the Lyme?? How long did the zoned out stage last?? I'm glad your son is doing well!

Yes, but I am not sure who, and I am not sure when!! Dr. B. just had my dd get additional testing for co-infections to Lyme yesterday. It is going to take at least 3 days to get those results. I have been told that Dr. B. is in contact with a Lyme literate doctor, but I think I would like to bring her to a doctor and not filter the information to me through Dr. B. I trust him, but Lyme is not his specialty. Also, Dr. B. is 3 1/2 hours away and it is a whole day ordeal to get there and back. My approach right now is going to be to send the following paper to her pediatrician who is very open-minded, and see if she would consider treating Amber for Lyme based on the treatments outlined in this paper: http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf If she would rather not, I will find someone who will. It is so frustrating that time is of the essence in treating things like PANDAS and Lyme, and it takes soooo much time to get anything done. We are going to be starting IVIG in about 2 weeks. At least that will reset her immune system and help her fight things, whatever they may be.

Thank you! It helps to know someone else has gone through something similar.

Hi, My daughter sees Dr. B. She was diagnosed with PANDAS and now a few days ago with Lyme. We are scheduled for IVIG mid-September. My daughter doesn't seem to be interested in anything anymore other than playing games on the computer or watching TV. She is 6. She has hysterical laughing fits. One thing that really bothers me is that she doesn't cry anymore. I thought about it today and I don't think I have seen her cry more than 2 times in the past 6 months. She wacked her head today really hard on the edge of a table and it didn't even seem to phase her. Can anyone give me some insight on this?? (Just an FYI...I used to be LisaMarie on this forum, but I changed my email address and never got the email the site was supposed to send me. I tried numerous times to reconfirm, and I couldn't figure out how to contact the administrators of the site, so I just used another email address and signed on with a new user name. I like the name AmbersMommy better anyway.)