Gifted Issues Discussion homepage Forums Twice Exceptional Rollercoaster of Emotions... a 2E parent's ride

I agree with the others - you deserve some kind of advocacy award. I'm so glad that it seems to have worked out - I really hope this will be a turning point for your daughter.

Thanks but not so fast... I got a call that DD had a meltdown this morning followed by a headache this afternoon. She asked to go right back to class after getting her ibuprofen and later when asked if she felt better said "Yes. Actually I'm just joking - no I really feel awful." I went to pick her up and was told the following:

She was in a different classroom when she just stopped working for a few minutes. They got her to go back to her writing and then she started to cry. They calmed her down and then the teacher announced to the class that if they didn't finish their work they would do it during recess. DD totally lost it and they got the SW who has been working with her. She brought DD to her office where DD was so upset she couldn't tell her what happened. They had the school psych (who DD had never met) and her speech therapist sit with her while SW went to find out what happened. SW finds out that the threat was directed at other kids, not DD, and they convince DD that it was all a misunderstanding. Apparently during this time speech therapist notes one of DD's "staring episodes" that I have been describing for months and demonstrated for the team during yesterday's meeting. I found this part out when I read the nurse's note after I got to the car. (And after giving the SW a piece of my mind for the Patch nonsense that triggered all of this anxiety...)

So now I have to wonder if DD sitting and not doing her work, not knowing what they are talking about when they say that she did that, not remembering crying the first time and being confused thinking that the recess threat was aimed at her was all actually her having some kind of seizure. I find it interesting that within 24 hours of demonstrating for the team what one of her "episodes" would look like someone spots one.

Before finding the note I was so angry I really went off on the SW and let the special ed teacher know about the nurse going behind our backs to tell the pediatrician that she doesn't believe any of this is real. After I read the note I found both of them and let them know about it. I really don't know why, as members of the team, they weren't told about the speech therapist seeing this especially when they were involved in DD having a meltdown and headache. Neither DH nor I had seen one of these episodes in quite a while but I thought I spotted one in school during the 100 day activities last month. It just seems too coincidental that I am in school for an hour and see one and someone reports one within 24 hours of me demonstrating it - right?

Those of you who have experience with seizure disorders - does this fit? We are supposed to do an ambulatory EEG but are waiting for an indication (i.e. an apparent cluster of these episodes, increased severity of her headaches, repeated night terror, etc.)I am still so angry at the people at school that my fuse is incredibly short. DH thinks that once one has been reported we are likely to get a bunch more reported. I am hoping that at least they become cognizant of a potential relationship between all of it. At the very least hopefully they will realize that penalizing her, like they did last week with the patch nonsense, is totally inappropriate.

Ideas anyone? After yesterday's events would you be able to back off and trust them to handle things like what happened today?

Oh gosh Pemberley - what a mess at school! I can't really answer the trust question right now or think rationally because I have my own headache at the moment (literally lol!)... but fwiw this is what happened with our dd and her seizures:

They came and went. It was just never possible to predict when she'd have one, but when she did have them they did tend to cluster over a few weeks or months of time. And those were the obvious ones that we saw. I've often wondered if there are other times when they've happened and we just didn't realize it. Hers were too infrequent to ever catch on an EEG but she has a seizure diagnosis anyway, based on our description of what happens before, during and after.

The minute I read "staring episode" above, once again, the very first thing I thought of was seizure.

Have you asked your dd about how she's feeling when (or before) the spells occur? Our dd doesn't notice anything before she has a mild seizure, but the larger seizures where she basically passes out, she has an "aura" before the seizure happens - she feels tingly in her arms and legs. You could try asking your dd if she's ever felt like that or if she sees strange lights in her eyes etc - don't do it if you think it would put ideas into her head or scare her, but we found with our dd and her various medical challenges, she experienced a number of different symptoms that she never told us about because she didn't realize there was any reason to tell us.

Gotta run - I'll come back later when I can think and give you some in put on the trust issue etc.

Sending you both huge hugs,

polarbear

Pemberly, sorry for all your little girl's troubles. I don't think I'd even be able to write it all down while it was happening. What a nightmare. I hope coming to this forum helps you.

I think that you might find the information in this book interesting, as it discusses anxiety, panic, and emotional "meltdowns" in the context of seizure disorders, both as direct manifestations of seizure activity and as prodromal syndromes.

Big sigh...

DD just told us that the teacher "told me I was looking away but I have no idea what she was talking about." She said no to all questions about tingling and auras. She also doesn't remember anything that would match up to the episode the speech therapist noted a bit later. As far as she is concerned she was just sitting there doing her work - no looking away, no pointing to the word without writing it, no problem gripping her pencil, etc that were included in the more detailed report they sent me. I sent an email to the SW asking for details - i.e. was she animated or did she appear to be daydreaming, did she seem confused, did she snap out of it or come out of it gently, etc. Any other questions you recommend I ask before I call the neurologist about it?

Interesting link, Aculady, although a bit discouraging. The book costs $200 but a few colleges in the area have access to it electronically.

This forum is SO helpful. There is no way I could have gotten half of this done without input from all of you. You have my eternal thanks!

Pemberley, I'm so sorry. You had such high hopes for this school. You did the right thing by going over their heads and forcing compliance; you'll have to be continually vigilant, I'm afraid.

Do go right back to your medical people with this new information-- it will be a good clue for them. I keep feeling like all this turbulence IS getting you closer to answers, even though it feels like it's taking a long time.

Hang in there. Thinking of you.

DeeDee

My younger dd has absence seizures. Up until this year, the diagnosis (even though it is in her record and she is medicated for them)was unaccepted at school. We were literally begged to have her medicated for ADHD, which she does not have! This school year, she has had a 24 hr eeg that she was even brave enough to wear at school. We are also scheduled to have the 24 hour video eeg. She has been through so much with all of this, but she is a trooper!

At my insistance, the school finally located an ipad for dd and is using several programs with great success. One of the teachers told me that she was glad that I fought so hard for it because it has really allowed dd to show what she can do when her dyslexia/dysgraphia roadblocks are minimized.

Do lots of reseach and know what is available to help your child. If possible see if you can try a few things at home and then you know how your dd reacts to it. For instance, if you have windows7, there is a free speech to text program. Have her try it and/or a voice recorder and have her dictate stories. If she finds an alternative strategy that she likes that allows her to minimize her frustration that is key.

Also, I know this is hard, but you have to try and minimize your level of frustration around your dd when it comes to her issues. I know that with my dd, she seems to take on the weight of all of it if I am not careful...she blames herself for my being upset about the school, she blames herself for the school being frustrated with her learning style...that is a lot of pressure on a little girl.

Good luck!

Time for a bit of a happy update:

For a while now I have been thinking that we need to find a way to reestablish DD’s “normal” school day. Instead of feeling awful and spending half her day in the nurse’s office she needs to learn that “normal” is feeling good and being in her classroom all day. After a rough start to the week I think we started to have some success.

They unscrewed the fluorescent bulbs above DD’s desk the other day and started sending her outside to help clear her headaches rather than right to the nurse for medication. It seems to be helping so I made a deal with her - if she can go 3 days without a visit to the nurse's office we will take her to Medieval Times. (She has been begging to go for quite some time.). Wednesday and Thursday she toughed it out – “I had a headache but I pretended not to." Yesterday she seemed to have turned a corner. Today - no headache at all! YAAAHOOOO! Medieval Times here we come!

Today we had our parent/teacher conference and classroom teacher, spec ed teacher and SW took detailed notes about what to look for in terms of possible seizures. All are now thinking that they may have actually witnessed some "episodes" previously but didn't realize it. We'll see if we start to get more reports now that everyone has a better idea of what to look for.

With all the emphasis on headaches, anxiety and possible seizures her actual education and overcoming the ld's seems to get lost. And forget her gifted areas… Also her performance is so uneven - she may score 26/26 one day and 13/26 on another day – it’s just so hard to actually assess her school performance. I gave her teacher a copy of the book "101 School Success Tools for Smart Kids With Learning Difficulties" (isbn # 978-1593635336). DH and I had talked to one of the authors last summer and she suggested buying the book for the teacher. I regret not doing it earlier. She was very receptive and the special ed teacher asked to borrow it over the weekend. I offered to buy a copy for anyone who may find it useful. Hopefully it will give them an idea of the best way to differentiate instruction for her.

All in all a good end to the week. Crossing my fingers that we are on the road to reducing anxiety, eliminating headaches and getting appropriate differentiation. Will keep you posted.

So glad to hear that things are looking up!