Looks like we're finally headed for IVIG

[peglem]

We saw the immunologist today- the one who said he'd do IVIG if Dr. Latimer recommended- and gave him her report. So, we're going ahead with it. He said it'll take about a month to get it through insurance and get it set up, then we're good to go! Also, he's recommending doing an infusion every 3 weeks- as he wants to keep the antibodies at a stable level.

[coco]

Yay Peglem...you have waited a long time for this and it's just around the corner! Keep us posted -- all the best!!!

[faith]

nice peg, I do hope this helps some.

how is she doing presently?

 

 

Faith

[laurenjohnsonsmom]

That's great news! We also start IVIG next week! I have had conversations with many parents that have recently or are getting ready to start IVIG and there seems to be some "difference in opinion" between the docs (Latimer, Bouboulis, Dr. K, and others) as to how much, over how many days (one or two) and especially, how often. This stresses me, immensely!

 

We saw the immunologist today- the one who said he'd do IVIG if Dr. Latimer recommended- and gave him her report. So, we're going ahead with it. He said it'll take about a month to get it through insurance and get it set up, then we're good to go! Also, he's recommending doing an infusion every 3 weeks- as he wants to keep the antibodies at a stable level.

[peglem]

nice peg, I do hope this helps some.

how is she doing presently?

 

 

Faith

 

She's really doing pretty good right now, better than all of 2009! I think the getting aggressive with abx at the end of the year and upping the prophylaxis has helped a lot. She's stabilizing into a PANDAS lite. (I know that's all relative). We've just seen a couple of bouts of aggression a day, and those are short lived and brought under control pretty easily. She's just so much happier and less anxious.

 

I'm wondering if I can find a way to adapt ERP for a child who cannot supply much feedback. She seems to understand, just unable to communicate back very well, and I don't even know where to find a therapist who could work with that.

[Megs_Mom]

nice peg, I do hope this helps some.

how is she doing presently?

 

 

Faith

 

She's really doing pretty good right now, better than all of 2009! I think the getting aggressive with abx at the end of the year and upping the prophylaxis has helped a lot. She's stabilizing into a PANDAS lite. (I know that's all relative). We've just seen a couple of bouts of aggression a day, and those are short lived and brought under control pretty easily. She's just so much happier and less anxious.

 

I'm wondering if I can find a way to adapt ERP for a child who cannot supply much feedback. She seems to understand, just unable to communicate back very well, and I don't even know where to find a therapist who could work with that.

 

That is so great to hear!

 

What sort of "level" is she on, in terms of processing information when she is healthy (limited PANDAS)? We've done ERP for so many ages now, and have a few contacts/books that we might be able to recommend, depending on how you normally teach her. I know she is a teen, but am not sure if I have a sense from your prior posts about what kind of processing she handles best. Given her situation, maybe having a great teacher who is qualified to use tools that already work for learning with her, combined with a consult with an ERP therapist might make the most sense for her? When we worked at different ages, the strategy I found to work well, was to have a good ERP therapist, and then sort of adapt the tools into age appropriate games, stories, work, etc. We usually went backwards about 2 years from Meg's actual processing level when we were doing ERP as the severe OCD seemed to cause her to regress emotionally by about 2-3 years each time. So when doing anxiety/OCD work, we often went backwards a little developmentally, so that she could better handle it.

[dcmom]

Peg- Have you looked at the workbook "What to do when your brain gets stuck"? I have been using it for my kids (age 6 and 9), and they really seem to get it. It has helped me to help them as well. Possibly you could adapt it to work with your daughter while looking for a therapist? It teaches kids to "I spy" for ocd, and then gives them a set of tools (like delay, do the opposite, change it up, etc) to fight ocd. I really don't know your daughter's situation- but if she could listen to you read it to her- it might help?

[Debbie1]

Great news peglem! I am looking forward to hearing updates on how she is doing. Were you able to get insurance approval? Looks like we will be approved if we decide to go ahead. We are waiting to see how much benefit our dd gets from a recent antibiotic change to Omnicef.

[peglem]

Great news peglem! I am looking forward to hearing updates on how she is doing. Were you able to get insurance approval? Looks like we will be approved if we decide to go ahead. We are waiting to see how much benefit our dd gets from a recent antibiotic change to Omnicef.

 

The immunologist seems to feel we have more than enough "evidence" for insurance to approve.

 

On cognitive level- we just really don't know- she seems to understand most everything. It really can't be tested. Her last IQ test put her @ equivalent to a stone, and I know that's way off! The problem is getting feedback from her. I can explain OCD to her and she will understand. I see no problem with working on compulsions- I can see what's going on there and I'll probably work on that 1st-objects that cause anxiety. But, I can't see her obsessive thoughts and she has no way to tell me about those...I can ask her yes/no questions, or give her "finger choices." But trying to guess what and when its happening to give her those choices or questions...

 

I do need to study up on this more. I do want to get the "What to do When Your Brain Gets Stuck" book- That's sounds like something I could adapt for her. She currently does have a super teacher who will try anything to help her- I just need to figure out what we want to do.

[sf_mom]

Looking forward to positive updates. Congratulations on making this happen for your daughter.

[Kayanne]

That is Great News!!!! I'm keeping my fingers crossed for you!

[dcmom]

Peg- if the IVIG is helpful to her, it will be easier for her to work on her ocd when that is done. My dd was 5 at onset- we could not even bring up or look at the workbook or ocd. She was in denial and refused. Once she had medical intervention, and some time went by, at calm times, she could admit to her issues being ocd.

 

So I guess what I am thinking is, if you study up, and get your plan in place- it may be easier for you to tackle after IVIG (hopefully).

 

It will (of course) be harder, if you don't know the obsessions- but I think you can still work on it- especially if you feel she understands. The book is fabulous- just to let you know- everytime my kids asked a question along the way, it would literally be answered in the next sentence. The authors must have worked with tons of kids in creating it. Certain tools (my favorite is Delay- that is fairly simple) could work for you, even if you don't know the obsession. So for examply, my dd has the compulsion to sit on the potty (for hours). Her obsession is fear of throwing up. So I try to delay her for 10 minutes, and we will do something (read, cuddle, etc). It works best when they are not in the height of hysteria, of course. So if you knew a compulsion, and told her about the possibility of delaying it (maybe start by practicing with a timer that she can have) and instead doing something fun while the timer is ticking....

 

Meg's mom could probably be a huge help to you here....

[peglem]

What she does know is that she get fears that interfere w/ her being able to do what she wants to do. She understands that. When we decided that we'd have to go see Dr. Latimer (who, incidently had a very difficult time evaluating Allie, although she had some immediate insights that other professionals have not been able to see), I explained that her pediatrician (she adores him!) and the rheumatologist think that the stuff that her body is making to try to get rid of the strep is going to her brain and giving her scary thoughts. The whole time I was talking, she was signing "yes" to where I thought she might sprain her wrist! Then I told her that those doctors are not sure how to help her, but think that Dr. Latimer will know what to do about it because Dr. L is really smart about this problem and has helped some other kids who have the same problem. Again, I got the yes, yes, yes, sign from her and I could tell from how well she paid attention to me and the sense of relief she had, that she really got it. Doesn't mean it wasn't hard getting her there...but she knew why and wanted the help and worked hard, even though she was terrified.

 

I do expect that it will get easier to work on after the IVIG. She is in a pretty good place right now. Something she has done on the computer- she goes to this certain website that has coloring pages- gets to this one page and just sits there, getting upset, staring at this page and smacking herself on the head and kneeing herself in the face. A few months ago, all I could do is get off that site (while she rained blows upon me) and get her through the resulting melt down. Now, I just say- you need to find something that makes you happy- don't go to that page if it upsets you! She's been rediscovering some things that she used to enjoy and enjoying them once again. And there's just so many things changing here so quickly...I can hardly keep up with it....but life is so much better!