FallingApart

that is awesome news. How are things going? Are you seeing any improvements? I'm wanting to admit DD for IVIG when we haven't done it in 2 years.

I'm sure that most parents on this board can identify a strep carrier pretty quickly based on how their child reacts when around someone. We have identified a strep family at least, although we think the carrier is the child in DDs class. DD has only 10 girls in her class and will be with these 10 girls for the next 8 years. One of the 10 is DD and 1 of the 10 is the suspected strep carrier. DH and I really don't know the carrier's family very well. Also, I should point out that I have a pretty mild personality especially when it comes to explaining "controversial" issues. What do you guys say when faced with a situation like this? I have had a discussion with the mom in the past about DD having an autoimmune disease but that's as far as I went. She didn't react with a resounding understanding but more of a bewildered "humph". Because of that I don't really think educating her will do much and I guess I'm insecure about being in a small class of 30 kids for the next 8 years...

I feel that we are in the same situation at our house. DD has been diagnosed with Bartonella. We did treatment for quite a while until we hit a plateau. Because we have been in such a long exacerbation, we just started DD on steroids for the first time in 3 years. We saw an immediate improvement in her but then the symptoms returned. It turns out that her sister (a strep carrier) has active strep right now. I am praying that the benefits of the steroids will return now that we are treating her sister again. I share this in case something like this could be true in your household as well. I'm scared to think about how the steroid treatment will affect the Bartonella but our household was at breaking point so we gave in and tried the steroids.

Hi all, DH and I decided to give DD7 steroids again for the first time in about 3 years. Brief history is that DD has had about 12 IVIGs during a 18-24 month time period. The last one was 2 years ago. This is to say that she does respond to IVIG and steroids. DD is currently 48 hours into this 5 day course. She also tends to be an instant responder so we typically know if a treatment will work pretty quickly. The first 24-36 hours of our current round we saw a major improvement in DD. Even non family members noticed it. They said that the angst was gone from her poor face. But then, when DD woke up today, all raging symptoms were back. Actually all symptoms were back. Has anyone else seen this? DH and I hope it is a short burst of roid rage and she will regain the benefits. I believe we have seen this once before with a different round. Feeling very frustrated! Yesterday was the best day we have had in year. We felt like what a "normal" family must feel like. Today we are just feeling really ripped off for getting our hopes up...

pr40, absolutely the same here with dd9. her pandas started a year ago and "learning" did get somewhat better but is still extremely limited. Another trait is that she cannot see herself through the eyes of others nor can she judge correctly behavior that is her own. When the same is done by her brother (5), she can identify the behavior correctly. this is a daily occurrence for us and I cannot relate it to a flare up. I guess that I agree it is a daily occurrence for our DD as well. But how do you deal with social situations when you have that to deal with. Our DD appears to the rest of the world to be a fully functioning person. Yet, with this as her burden, she clearly isn't.

I completely agree with the "out of her mind" comment. Thank you for saying that. We have certainly identified who we believe to be strep carriers and don't let her interact with those people whenever possible. However, when she is flared, even the families that DH and I have deemed safe will cause her to go "off". Then, her recollection of the incident is completely inaccurate as if she wasn't even there.

This thread is so helpful; thank you! Can others chime in about whether or not you think your child ever learns anything from the situation you are dealing with? I saw one person say that they don't think their child learns from one to the next. That is also how I feel. DD is extremely smart but she never learns. I am losing my mind. One other area I have a question about is disciplining in social situations. Whether the situation be at your house, a friend's house or at school?

Hi there, I feel a bit bad asking this because I know some children are unable to go to school. My child is able to go to school and it seems to be the one place she is successful, although I'm not positive about this since I'm not there. We have been having a pretty rough patch here on and off for a while. This is when I start to wonder if perhaps there is another disorder involved. But I do believe PANDAS is the main issue. DD is 7. I see other posts where some of you are able to actually talk to your children and perhaps the child has a learning experience from your discussion. Our DD is completely unable to take info from a previous situation and apply it to the next, identical challenging situation. Last week, she got so mad at what a playdate child was saying and doing (which in my mind was really nothing) that our PANDAS DD told the playdate that she was going to physically harm her. Playdates or social situations are constantly this way. DD gets mad or wants to dominate the situation. No amount of discussion or role playing has impacted this. You might say "limit or eliminate social interactions" but we do really limit them. I'm talking about Christmas get togethers, school situations, etc. I guess I don't even know what exactly my question is here except for advice on how you handle social situations when your child is flared and is in an ODD state? Thanks so much!

Hi all, I am a PANDAS/Lyme mom as well. However, since age 3.5 I have always felt that dd7 has aspergers. No one will take me seriously. We had dd tested for the whole spectrum as soon as we were faced w her personality change but were told she didn't meet the diagnosis criteria. I see that you two got the diagnosis some time after the PANDAS dx. How should I go about pursuing this? I made an appt with the ped but she is adamant that dd is not aspergers or autistic. We are in Seattle. I thought that our children's hospital was less than cordial to us. The thought of going to yet another doctor is enough to knock me flat on my face. I really don't feel I have the energy for this. The child is something in addition to PANDAS because she never really gets better. Sorry to vent.

I believe this to be more of a PANDAS question, but I don't post often and feel like I know more of you on this board than the PANDAS board. just a refresher: we have a diagnosed DD7 with PANDAS and Lyme/Bart. Her sister who is 5 is a strep carrier and we cannot eradicate the strep. Our ped has long believed that DD5 will also develop PANDAS and has been keeping a close eye on her. Until about a month ago, neither of our children have ever been sick in the traditional way. No fevers, etc ever. I felt so happy a month ago when they both got fevers. fast forward to this week and DD5 got another fever for 3 days. This one higher than the last time. Strangely no one else in the house has gotten sick yet. DD5 has the most mild temperament and is the most kind, non complaining, gentle person. This fever has made her lethargic and kind of mean. Just now when she didn't get her way with something very small I saw in her a rage that I see in the PANDAS/Lyme DD7. We have plenty of abx since DD5 is a strep carrier. I think I am going to start her on a 10 day course but also thought I would run this by you all as well. For those of you who have more than one symptomatic child do you have any input here. thanks so much!

We do the same with Melatonin. Our DD didn't sleep for 2 years straight and when we inally starting seeing our ND, she said that there would be no harm in giving even up to 10mg on occasion for ou 50lb DD. We never went that high, but I'm pointing this out in case the 3mg isn't cuttin it. However, we can get DD to fall asleep but she has a hard time staying asleep. We give her L-Theanine when we notice this happening. Now, I need something for me!!! Melatonin is too strong for me for when I need to get up in the middle of the night with one of the kids.

I am so sorry to read of the bleak situation you are in. I haven't had cancer but have also been dealing with hospitalizations for my own health while also caring for Bart/PANDAS DD. I completely understand your fear (inability?, terror?, hopelessness?) at dealing with ANYTHING let alone this. I don't really have any advice but know that you are not alone.

Thank you so much everyone for your replies. Perhaps this is a good post for the emotional side of things that we parents deal with every day. It looks like we have similar fears and frustrations. I read the explosive child years ago when I thought I would be able to fix the situation. It's probably time for me to go back and re read it now. I also really like the idea of writing a journal to DD so she can see my love for her when she is older if she doesn't feel it now. Fixit, your sentence about not wanting to be in the room with the children even when they are well really hits home with me. Does this resonate with anyone else? I feel that this is something I'm working on but am making no headway on. It's nice to see that I'm not the only one who feels this way.

i agree that the flares get harder. I'm glad to hear that I'm not the only one.

Hi guys, I know that I should be compassionate to my DD. But she is in a flare right now and I am completely unable to handle it. That's not totally true, I will obviously carry on. But I am rational enough to know that she is sick and that her behaviors aren't her fault. Yet, after all these years I think I have a sort of PTSD from all the ###### we have lived through. Any uptick in her behavior puts me in a mode of high alert and anger. I don't know how to break this spell. I want her to be able to remember my interactions with her as loving and as my being her supporter - not constantly mad at her. I pray for help in being the best parent I can be. I do yoga and work towards letting go of the things I can't control. Yet I am still completely stuck on this area. Can anyone offer words that could help. Thanks so much

So, if these are OCD, which I clearly believe they are, does anyone have a supplement that they have seen help this? I give magnesium and some homeopathic liver and lymph drainage drops. Usually I see some benefit in this. But I am curious if anyone else has a trick up their sleeve.

i know this isn't identical, but DD can't stop picking. she has scabs and scars ALL OVER her body. She aslo picks her nose until she gets 20 min nosebleeds with huge clots coming out. It irritates me like fingernails on a chalkboard, but I do believe it is OCD. I have a very select remedies that I can use to help with this, but they aren't very effective. Just chiming in to say that it does sound like OCD.

You can find a ton of infor on the castor packs on EarthClinic! THis site is amazing, I really urge you all to look into it for any ailment you or your child may have. This site has helped me immensely, esp with consuming organic Apple CIder Vinegar and its amazing effects. I know I may sound wacky to get so excited over this site, but for people who have to be very careful in what they ingest, you may just find some fabulous suggestions here! http://earthclinic.com/

I believe I've taken vistaril for my migraines. Since I've had so many meds in my past, I can't remember everything about them. Is this one on par with a mild muscle relaxer? Or not that drastic? Dh and I are thinking about taking dd off or lowering the lexapro dose.

Dd takes lexapro. We tried all the natural remedies mentioned and saw benefit. But none were lasting. Lexapro had an immediate effect on dd for the positive.

We have had the ab ultrasound and it shows terrible constipation. But mag hasn't had a huge effect on this.

Hi there, DD has been on Lexapro for about a year. We definitely saw an improvement in her when she went on it. It wasn't a cure all, but an improvement for sure. DD has always had a distended belly and it grows with a flare. However, she is actually doing really well right now, but her belly is enormous. I see that this is a side effect of Lexapro. Anyone else had this and how did you combat it? I'd be afraid to take her off of Lexapro because of the improvements we have seen. I would 95% say it isn't her diest as that is clean and she gets tons of exercise.