Episode starting/suppression & memory lapses

[browneyesmom]

My DD11 is unable to articulate to me that she has an awareness that an episode is starting. Living with this the last couple of years, I have learned the early signs, but not how she feels before it starts... when it is on the way, as I have read others describe. In the beginning, a couple of years ago, she said she had the 'feelings' all the time, but tried to hold them inside and sometimes, it got to be too much for her.

 

Additionally, my ex-husband seems convinced that there is some "trigger" in my home because he says, "She never has the episodes when she is with me" for visitation. I asked our psychologist if this situation meant that there is something about my home or me that could be setting her off. He said that it's actually typical for kids to suppress it, but run out of resources and let it go where they feel most safe & comfortable. Not wanting to leave any stone unturned to help her, I do wonder about that sometimes and if there is anything I could be doing differently to help her.

 

Finally, she often does not remember these episodes... does anyone know why this happens for PANDAS children?

 

Thanks!

[browneyesmom]

I probably should have asked about the aphasia as well.... times where she is unable to say what she is thinking because her mouth will not cooperate other than grunts, then she usually goes through another phase where she has garbled speech, then it gradually resolves (over up to an hour or so) and her speech returns to normal.

 

Realizing that the basal ganglia is not so far from speech areas in the brain, this one makes sense, but what I often struggle to understand (even though I see many of you posting similar issues) is the episodic nature of this condition and it's episodes. ???

[norcalmom]

I dunno, but when I asked my kid teacher if she ever saw DS ticcing in class she assured me (this was at the beginning of tics - I was jsut starting to see them at home - that he never ticced int he classroom, and it was probably me being a little paranoid or over reacting. Then one day she saw him on the playground, and he was ticcing non-stop. but he never ticced in class. He would get home and it would all come out.

 

In addition - I am my child's only trigger when it comes to one weird OCD thing - eating/swallowing - he cannot stand to see or heard me swallow, eat, cough, clear throat, sniffle. I really feel that it is because he is closest to me. No one else bothers him. While I manage to live with this very annoying thing (my friends think he has it made - since I deliver his dinner to him in his "man cave" and he gets to eat in peace by himself every night!). It hurts me more than him. Since ivig this is really the only noticable thing he has left. I still notice other little things - but they are almost subclinical.

[EmersonAilidh]

Are you sure the Aphasia isn't just regular ticcing or OCD? Because that would make more sense than a totally separate symptom. It happens to me sometimes.

[Ozimum]

Quote: "In addition - I am my child's only trigger when it comes to one weird OCD thing - eating/swallowing - he cannot stand to see or heard me swallow, eat, cough, clear throat, sniffle. I really feel that it is because he is closest to me. No one else bothers him. While I manage to live with this very annoying thing (my friends think he has it made - since I deliver his dinner to him in his "man cave" and he gets to eat in peace by himself every night!). It hurts me more than him. Since ivig this is really the only noticable thing he has left. I still notice other little things - but they are almost subclinical."

 

Oh norcalmum...I just had to respond...on and off my ds has problems with eating/swallowing too. He is also upset by a number of little things my husband does, such as smack his lips, or flick his fingers. And he takes his breakfast and some lunches in his "cave" too, and sometimes he'll avoid the joining us for our evening meal. He can't stand certain words. I've got to believe he cannot help it, and I've noticed that when he's well it's easier for him to tolerate. (add that to contamination OCD, anxiety etc.) It's these things which never seem to go entirely.

Ozimum

[browneyesmom]

Thank you both for your responses. Yes, Norcalmom... this is what happens with her. Somehow she keeps it either under control or ... also, she told me this recently... that with the movement part of it, she is able to direct the movements to some extent, although not stop them. The rages remain more of a mystery as to how she manages to keep them down when not at home and I wonder what toll this may be taking on her and how I might be able to help her better.

 

I'm glad you posted Emerson & it's nice to see you back; I hope you are doing well. I suspected you might have some insight for me into the aphasia & memory lapses. If I recall correctly, you told me once that you also had a "limp" phase post-rage episode. I have asked her about the speech and what she tells me is that she knows what she wants to say, but can't get the words out of her mouth. She is sometimes able to write it though... other times, her handwriting is also illegible.

 

Can you tell me more about the episodes, Emerson? Are/were you able to keep them down when not at home? Is this familiar to you and if so... what is it like for you? I so want to better understand and support her, but she struggles to tell me what is happening and only seems to manage to ask "Help me!!" sometimes. Do you have anything you experience that tells you when one is starting... esp the rages? Is there anything that might help deter one or help you feel calmer/more at peace? I realize this is probably less of an issue for you at this point, but any insight is so appreciated!

[browneyesmom]

You know, my DD does not want to say or hear "Grandma" (she passed almost 2 years ago), "incontinence" (this is horrifying for her when it happens) & sometimes the word, "PANDAS"... not a huge surprise there, bless their hearts. I suspect the last real rage episode she had in a store last week may have been prompted by her seeing pajamas that had Panda bears on them. As I went around one side of a rack, she went the other way & saw them - she started punching the pj's with a vengeance and only stopped when I covered them with others.