Hyper and spacey/forgetful?

[Malke]

Hi,

 

I just recently identified PANDAS in dd (5). She's on day 3 of Zith and ibuprophen. It's still too early to tell exactly how everything is going, but I have been watching her so closely that a question has come up about her behavior:

 

DD has been hyper before (yeast issues) but never hyper and spacey at the same time like she is these days. I'll give her a simple direction ('take a bite of your breakfast') and it's like she hasn't heard me. If I didn't know better it would seem like she was intentionally ignoring me. I'll have to give her the same direction multiple times and physically redirect her body to get attention and to make sure she does what she needs to do comply with my directions. Also, I'll tell dd about something we talked about or agreed upon yesterday and she'll tell me she doesn't remember.

 

In addition to her anger issues (getting mad at house numbers!? Telling classmates and teachers she 'hates' them even though they've been nothing but sweet to her) and her seperation anxiety, this spacey/non-compliance issue seems to be the other major thing her teachers need to know about.

 

So, I'm trying to figure out what is going on before I write them about the PANDAS. Any resources (personal experience, on-line, or books) would be greatly appreciated!!!

 

Gratefully,

Malke

[butterflymom]

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Edited February 3, 2016 by butterflymom

[butterflymom]

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Edited February 3, 2016 by butterflymom

[Malke]

So helpful!!!! Thank you!!!

 

Today she's an over-hyper happy and I'm keeping her home from school until Monday. She's on day three of zith and I want to give it a bit longer before I reintroduce her to society. This kid has been 'hating' and having issues with all her classmates for the past two months and I've been so embarrassed. Now I have some understanding about what's going on I feel quite a bit of relief.

 

Malke

[VickyLH]

Hi,

 

I just recently identified PANDAS in dd (5). She's on day 3 of Zith and ibuprophen. It's still too early to tell exactly how everything is going, but I have been watching her so closely that a question has come up about her behavior:

 

DD has been hyper before (yeast issues) but never hyper and spacey at the same time like she is these days. I'll give her a simple direction ('take a bite of your breakfast') and it's like she hasn't heard me. If I didn't know better it would seem like she was intentionally ignoring me. I'll have to give her the same direction multiple times and physically redirect her body to get attention and to make sure she does what she needs to do comply with my directions. Also, I'll tell dd about something we talked about or agreed upon yesterday and she'll tell me she doesn't remember.

 

In addition to her anger issues (getting mad at house numbers!? Telling classmates and teachers she 'hates' them even though they've been nothing but sweet to her) and her seperation anxiety, this spacey/non-compliance issue seems to be the other major thing her teachers need to know about.

 

So, I'm trying to figure out what is going on before I write them about the PANDAS. Any resources (personal experience, on-line, or books) would be greatly appreciated!!!

 

Gratefully,

Malke

 

We too saw the spacey behavior in DS11 mainly during the first 4 days of starting Azith. He would basically zone out and crouch in a ball on the floor somewhere. At times he would do this for several hours and if we tried to help him snap out of it he would go into fight or flight mode. We quickly learned just to let him ride it out and also deduced that his brain was just in overload at that time and he was trying to completely minimize any type of stimulation (he avoided all movement, sound, and visual stimulation). At other times he acted spacey, but would pace around the house unable to sit or get settled at all. We are on day 17 of Azith and although he still has moments like that, they are farther apart and now only last about 5-30 minutes at the most.

 

Hope this helps. We too are only a month or so ahead of you in this journey.

Vicky in NC

Edited February 4, 2011 by VickyLH

[MomWithOCDSon]

We've had spacey periods, also. For a while, we even used a non-stimulant ADHD med, Intuniv (basically Tenex) to try and help DS get through his school day. Initially, it did seem to help, but the impact waned over time, and we didn't like the idea of continually increasing his dose to see if it would help.

 

We wound up taking him off and, instead, we've begun giving him Taurine every morning. It may be coincidental, but it does seem to help his short-term memory so that sequential tasks . . . eating a meal, getting ready for school, etc. . . . require fewer reminders in mid-process, and he's stopped reporting losing track of information at school, as well.

[SSS]

dd5 was really, really tired (despite good nights sleep) when first starting Azith.

She would take to her bed, with a game, or book, and get under the covers for stretches of time, and say 'I'm tired' a lot- That passed as days went on.

[eljay1]

Malke, my son is EXACTLY like this, and his PANDAS doc said that it is typical in young PANDAS kids. Can look like ADHD. The PANDAS Network sample letter to schools gives a description of what is wrong in the brain of a PANDAS child (it is a symphony orchestra analagy, from Dr. K, our PANDAS doc and can also be found on his website (www.webpediatrics.com, I think, and his radio talk available on Autism One).

 

There is too much going on in her brain, and she can't answer your question or follow the direction because of all the extra noise/thoughts. It will be very helpful for her teacher to know this. In my son's classroom, his K teacher has instituted a "buddy system" to have a child go with Benji when he is supposed to file papers, get his coat and backpack, or whatever, because he'll head out, forget, then start laughing, spinning, flailing, whatever. It looks much like what people say is yeast all the time, but I believe it is the "PANDAS inflammation in the brain" for my son. Memory problems are very common. . .it's kinda like Alzheimer's in a kid. At his worst, Benji would ask me

 

'Have I had lunch yet?' 'Did I go to school today?' 'What day is it?' 'Where did we go today?' Or. . . . 'Where are we going?' as we are out the door to the bus stop with our normal school routine every morning. I also tell him "go brush your teeth," and he will go sit on the potty, or get his coat.

 

Also, when you first start treatment, especially if she was fairly bad in this exacerbation, you may see a weird returning of PANDAS symptoms that go in reverse order as the abx begin to help. Watch for this.

 

Malke, your posts are helping me so much. . . .please keep posting your story, because I am only a few months ahead of you, and it reminds me of everything we have been going through. Sometimes I am doubting the treatment decisions we are making, but then I read your posts, or someone else with a 5/6 yr old, and I'm like. . . "Oh Yeah. . .Benji does that too at his worst, and he doesn't have to!" I know he is such a bright fantastic boy, and I know your daughter is too, and I want them TO GET BETTER!!!!!!!!!!! YESTERDAY!!!!!!!

[eljay1]

Malke, my son is EXACTLY like this, and his PANDAS doc said that it is typical in young PANDAS kids. Can look like ADHD. The PANDAS Network sample letter to schools gives a description of what is wrong in the brain of a PANDAS child (it is a symphony orchestra analagy, from Dr. K, our PANDAS doc and can also be found on his website (www.webpediatrics.com, I think, and his radio talk available on Autism One).

 

There is too much going on in her brain, and she can't answer your question or follow the direction because of all the extra noise/thoughts. It will be very helpful for her teacher to know this. In my son's classroom, his K teacher has instituted a "buddy system" to have a child go with Benji when he is supposed to file papers, get his coat and backpack, or whatever, because he'll head out, forget, then start laughing, spinning, flailing, whatever. It looks much like what people say is yeast all the time, but I believe it is the "PANDAS inflammation in the brain" for my son. Memory problems are very common. . .it's kinda like Alzheimer's in a kid. At his worst, Benji would ask me

 

'Have I had lunch yet?' 'Did I go to school today?' 'What day is it?' 'Where did we go today?' Or. . . . 'Where are we going?' as we are out the door to the bus stop with our normal school routine every morning. I also tell him "go brush your teeth," and he will go sit on the potty, or get his coat.

 

Also, when you first start treatment, especially if she was fairly bad in this exacerbation, you may see a weird returning of PANDAS symptoms that go in reverse order as the abx begin to help. Watch for this.

 

Malke, your posts are helping me so much. . . .please keep posting your story, because I am only a few months ahead of you, and it reminds me of everything we have been going through. Sometimes I am doubting the treatment decisions we are making, but then I read your posts, or someone else with a 5/6 yr old, and I'm like. . . "Oh Yeah. . .Benji does that too at his worst, and he doesn't have to!" I know he is such a bright fantastic boy, and I know your daughter is too, and I want them TO GET BETTER!!!!!!!!!!! YESTERDAY!!!!!!!

Oops. Messed that up a bit. I just wanted to chime in and say that we see the same things in our son (age 6). We started abx last month, but after a visit with Dr. B., we are switching abx and adding steroids to see if we can get a little further. His spaciness has improved quite a bit with the first abx, though (zithro). My husband and I do alot of things for him throughout the day (it's so much faster!!) and I do struggle with this a little bit, but I just think it helps keep the stress level down in our home.

[Bill]

Hi,

 

I just recently identified PANDAS in dd (5). She's on day 3 of Zith and ibuprophen. It's still too early to tell exactly how everything is going, but I have been watching her so closely that a question has come up about her behavior:

 

DD has been hyper before (yeast issues) but never hyper and spacey at the same time like she is these days. I'll give her a simple direction ('take a bite of your breakfast') and it's like she hasn't heard me. If I didn't know better it would seem like she was intentionally ignoring me. I'll have to give her the same direction multiple times and physically redirect her body to get attention and to make sure she does what she needs to do comply with my directions. Also, I'll tell dd about something we talked about or agreed upon yesterday and she'll tell me she doesn't remember.

 

In addition to her anger issues (getting mad at house numbers!? Telling classmates and teachers she 'hates' them even though they've been nothing but sweet to her) and her seperation anxiety, this spacey/non-compliance issue seems to be the other major thing her teachers need to know about.

 

So, I'm trying to figure out what is going on before I write them about the PANDAS. Any resources (personal experience, on-line, or books) would be greatly appreciated!!!

 

Gratefully,

Malke

 

 

Nothing to add other than, yep - spacey seems to come with the territory. Sometimes we have to literally "YELL" to snap our son back into reality. He can be staring straight at me when I'm talking to him and not hear a thing. It's frustrating but I keep reminding myself it's just part of this insidious illness. Forgetting things is common too.

 

Oh yeah, we had his hearing tested just to be sure!

 

bill

[Malke]

[

Nothing to add other than, yep - spacey seems to come with the territory. Sometimes we have to literally "YELL" to snap our son back into reality. He can be staring straight at me when I'm talking to him and not hear a thing. It's frustrating but I keep reminding myself it's just part of this insidious illness. Forgetting things is common too.

 

Oh yeah, we had his hearing tested just to be sure!

 

bill

 

This is good to hear Bill. I just figured out a few days ago that if I raised the intensity of my voice and talked to her like she was two she'd finally pay attention. This works especially well at bedtime. And, surprisingly, she does not take offence at my 'talking to the little baby' voice. Coming in physical contact helps too -- a hands-on approach. I could never do that before when her SPD was worse, but she's lost that due to a year of diet and biomed intervention.

 

Malke