Questions about my DD

[colleendonny]

Hi all.Looking for some advice on DD5.

She is currently on Augmentin and Azithromycin. Her biggest PANDAS issues are intrusive thoughts, though not debilitating, and ODD.

These symptoms are still here, and haven't gone away, since catching PANDAS early and treating them. How come these haven't went away? She says that they are constant... They do not seem to intefere with her lifestyle.

And lately, she has been so defiant. Not so much in preschool, or to her grandparents, but to my husband and I. It seems as if anything I say, her reply is "No." I brush her hair, she screams and tries to run from me. I mean, these are things that we can definitely manage now, but I'm having a hard time understanding why they are still here...

 

She does have ehrlichiosis and suspicious IgeneX results. We see an Integrative LLMD, but it's not until April. I'm not sure what abx they use to treat ehrlichiosis, but do you think this is why I am still seeing symptoms? Because the underlying infection may not be clear?

 

Also, how do you punish your PANDAS preschooler for the defiant behavior? Sometimes I'm not totally sure if it's PANDAS ODD or typical 5 year old girl sassiness...

[trggirl]

Are those the only meds she is on? I know certain medications and supplements cause that behavior with my daughter. Actually Azithromycin is one of them. Did you start both of them at the same time? Did she have that behavior before starting the meds. In our case Augmentin calmed my daughter immediately. You could almost see the peace coming over her. Azithromycin made her very defiant. In hindsite I wonder if it was herxing but we stopped it fairly quickly because her behaviour detoriorated. I don't know......just something to think about.

[nicklemama]

I'm no lyme expert but if she's got ehrlichiosis and untreated lyme, the behaviors you are seeing may very well from those. My DS has been on abx for 16 months for PANDAS and had one IVIG last May. When he has flares, he has an increase in behavioral symptoms.

[Dedee]

You have just described my daughter almost completely. We are struggling with the same issue right now. Also awaiting to see another specialist in late March. I do have an idea though that my daughter may also have anal strep because of what I found a couple nights ago. Think we are going for a strep test on that this afternoon. Strep can hide there and not show elevated titers or other signs of apparent illness. Guess I will see this afternoon.

 

As for your question about how to decide if her behavior is her illness or normal 5 year old behavior.....Well my husband struggles with that all the time. He always wants to know is that her OCD or is she just being stubborn? What we have been told by CBT & ERP therapist is that actually it doesn't matter so much the cause as the response you give her. Even if it is OCD they still have to know that it isn't acceptable to hit, throw, etc. We don't scream or call names regardless of how we feel (these are therapist words). You and your husband will need to come up with a game plan ahead of time on how you are going to react in each situation and stick to it. One of our issues is taking medication. Always has been. So that is a "no compromise" situation. No matter how much screaming, crying, complaining, storming, locking herself in her room, we never back down....EVER! I found that when I do it once, I have lost completely. By the next time, she won't take any at all. So last night she had a screaming fit for two hours because I told her if she didn't take her medicine there would be no TV and no play time that night or the next day. Obviously, I can't force her to swallow (tried that before), but I can take her toys, TV, video games, play time, everything dear to her until she agrees. Of course, this makes her furious, so beware the wrath....she becomes a raging inferno. My husband had to hold her for a long time last night just to keep her from destroying the living room. BUT...once the dust settled (two hours later)she walked over to the table and took all her pills in about 30 seconds. Done. Of course, my husband and I are looking at her and thinking WHY did we just go through all this if you can do it that quickly??? I don't have the answer to that. I couldn't even answer my husband when he said "so was that OCD or defiance or what?" I only know, for us, in those situations, we can not give in. We have to pick our battles, but the really important stuff, it doesn't matter. The line is gray, but the therapist have just told us to pick the big issues and never give in. Of course, that is all easier said than done.

 

My best suggestion is to try to get into a CBT or ERP program. That has helped our entire family tremendously. Best of luck.

 

Dedee

Edited February 14, 2012 by Dedee

[smartyjones]

It seems as if anything I say, her reply is "No." I brush her hair, she screams and tries to run from me. I mean, these are things that we can definitely manage now, but I'm having a hard time understanding why they are still here...

 

Also, how do you punish your PANDAS preschooler for the defiant behavior? Sometimes I'm not totally sure if it's PANDAS ODD or typical 5 year old girl sassiness...

 

 

i replied on another post about the help from the book The Explosive Child, by Ross Greene. he also has a website, www.livesinthebalance.com.

 

we have also used a 4 minute time-out ala dcmom that has been helpful as well.

 

i don't know that i can explain the time, attitudes etc on how to choose and honestly, it's likely whatever flies out of my mouth at the time -- also, some not so helpful, calm things as well -- but we won't so much discuss those .

 

the philosophy of ross greene is that whatever is going on with a kid who is acting disfuncitonally is due to lagging skills and unresolved problems. if the child knew how to say, 'oh excuse me, i need some help handling this emotion'; they would, but they don't, so they yell, scream, kick etc.

 

i've used the 'emergency plan b' emregency plan during times of exacerbation and used the general plan b in better times. i still think it is the best and most responsive way to work with my son.

 

basically, when you are combing her hair and she yellls, you just repeat what she's said. at first, flatly. as you get better, with humor, incredulosity, whatever fits. this helps to disnegae you and calm her. after a while, see if you can get to the root of the problem.

 

check out the website and see if it might be helpful. good luck.

[colleendonny]

Thanks everyone.

I know my biggest issue with disciplining, especially with PANDAS DD, is consistency. I also have a 2 1/2 year old and an 8 month old, so I just feel so overwhelmed these days.I know, no excuse.I am definitely going to look into that book. Today was tough as well. She just likes to fight with me and ignore simple requests.

I wonder how she will be when she is 15?!

 

Anyway, thanks again for the advice. I'm going to buckle down and come up with a program and share it with my husband and others who are involved with Kayleigh so we are all on the same page. I think I'll post another thread about CBT and ERP in MA. I know there is many from around here.

[WorriedDADNMOM]

Colleen I am not sure if you are doing the whole supplements thing but our Integrative ped has put our dd7 on lithium orotate and st johns wort. They have seemed to help. Keep in mind we are throwing every thing less the kitchen sink into my d's body to get her well. We are taking the long slog approach if that is what it takes. With the addition of these two additional supplements along with abx and many other vitamins we have seen great attitude and behavior improvement. Hope this helps.