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6 year old Daughter


Doug

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Hi everyone

I have not posted anything for a while but here we go..

My dd had IVIG last Feb,we are going on our one year mark

it have been a very long year.. the first 8 months were SUPER

she caught "something" in September and has not been back to 100% since

we had her tested for strep but it was neg..it always has been

anyway my question is

Her brain NEEDS to be going and going and going all day long

she does great in school but after that it is always "what is next" if the tv is not on it needs to be the computer if the computer is off it needs to be a craft.. ect ect

and at night when it is time to start to settle down she has a hard time about a hour before bedtime because we are all just trying to mellow out from the day.

And she has a hard time on just being happy, she is fine when she is playing with her friends but then when they go home and we ask her if she had fun it is always "it was ok" or she is very upset that her friends need to go home

she has a answer for everything and it is always negitive,,

so I know this is still PANDAS but can some of it just her age of 6 and being a only child?

we do everything to make her happy, and most of the time she is but only if she has something to keep her mind busy.

Thank's

Tracie

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It's kinda sad how we have to get to know our kids all over again and keep in mind they are older now than they were when they first got sick and it may just be part of their age.

 

My question is are there any other symptoms present? What other meds/supplements does she take?

 

Second, does she take Omega 3's? My son actually gets hyper on the full dose listed on the fish oil bottle, but if I cut it down slightly, he's fine. Something to try if she takes it.It may take a couple days to see a difference, if anything should occur.

Edited by Vickie
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so I know this is still PANDAS but can some of it just her age of 6 and being a only child?

Tracie

 

 

hi tracie -- i have two boys, 6 and 9, and 6 yo has pitand. so, some relevance but maybe some can be due to an only child that i don't understand or perhaps, girl v. boy.

i'd have to say, in my opinion, i'd lean toward what you are describing as pandas symptoms rather than just 'normal' childhood. i will disclaim that i heavily lean that way generally. was she behaving in this manner during the 8 mths you thought were so good? i'd think that would be a big clue.

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When my 6 year old has a pandas episode he comes out of it with a low dose of azithromycin. When he does not have a pandas episode he is on augmentin to prevent strep. Azith brings him right out of it. Have you tried azithromycin?

She has been on azith for almost a year.

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You've had awesome replies (I just ordered Omega fish oil to start back up again)

Just wanted to say I had a ds who was an only child his first 7 years...his is neurotypical. He required lots of things to do...at the time, I was constantly buying him Lego sets to build, etc. He was in full daycare/preschool, because I worked back then, but when he was home, yes, there needed to be something going on--TV, stuff to build, park trips, something.

After then having 2 little girls close in age, it is very eye opening to see how the 2 interact and 'play' (when not fighting) together ... they can hang at the house together without me having to give projects all the time...

but, even with that, my dd5 PANDAS can still get into 'needing more!'

Sarah &

Samantha 5

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Tracie: We have dealt with this for a long time - my ds is 15 now. When he was your daughters age he had a hard time playing alone, and never had an imagination. When he hit his hardest exacerbation at age 12 he literally could not entertain himself at ALL and we ran around like crazy people trying to entertain him. The only problem is he always had to up the anty, and normal activities became not enough. He needed to do something BIG to get any feeling of satisfaction and when it was over he too crashed. At age 12 his therapist tried to get him to write a list of things he liked to do or could do on his own. It was very very small and he had such a hard time even starting anything. He just couldn't seem to do it. Flash forward to exacerbation at 13/14 - his main OCD trigger was around this issue. He would scream "I want to DO something!" and "What's happening?!" and get stuck and end up in a 3 hour rage/terror attack. Since IVIG/abx he has finally learned to relax a bit. He still makes lists of things he might like to do for himself, but they are usually simple like "go driving" or watch a football game on tv. But it's like his personality somehow stopped developing and he doesn't even know what he likes to do anymore. He has no hobbies, no friends, and few interests. So it's hard. It's like a whole skill set he has to learn. He too caught a virus last week and we've seen a little resurgence of this. He and his new therapist have explained it this way - his main coping skill for not sinking into the racing thoughts or depression was distraction, so he was constantly trying to stay busy to keep the thoughts away. But because this was only a temporary fix, and the thoughts just came right back after the distraction was over, he'd need another one. And then when it wasn't working, he would need some activity more exciting to keep the thoughts away. He also would need to know ahead of time how every hour would be filled so he could combat the fear that the thoughts would take over. He also said that his doing something big (think going to sporting events, concerts etc) was a way to look forward to somehting to combat depression about the state of his daily life. He has also said that in exacerbation he could NOT relax - the worry was just constant, so he felt compelled to always do something. Now my younger, non PANDAS son, has always been able to play alone, has a ###### of an imagination, and can spend hours at home just doing whatever, and he has been this way since age 2. I do think this is PANDAS related and I know only too well how exhausting it can be to feel like you always have to have plans or come up with activities. It's sort of like being dragged into their compulsion and you end up resenting spending time with them because it never ends. Oh, and we too have tested over the years for strep when we saw exacerbations and it has been negative. I am a true believer that strep is not the end all be all. May start this process,but it doesn't end there at all. Has your daughter done any CBT/ERP? My son responded GREAT to this kind of therapy at age 6/7.

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Hi there,

 

Don't know if this helps at all. But my ds4 is just as you describe. It's been exhausting to tire him out. At 3, we would go on a 3 mile hike and he was still full of energy, the playground, playing in the pool and onto some games ect. People would watch me and wonder how we do it. I'd have to say and I'm no expert but it is NOT normal. I think when anything with your child comes to the point where it's painful and several times i said "this is torture." something is off. He'd run to his bed at 8:30 at night and start doing flips, literally, on the mattress. When I described this recently to our pandas doc, he thought the loudness and activity level had more to do with a pandas symptom..of hyperactivity, or just needing constant stimulation. We're still just starting treatmnt, so can't say any long term improvements. But I get where you're coming from. Probably doesn't help, but you're not alone. We're hoping the treatment will help settle him. Please god!

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Doug and Tracie

 

We see similar in our 10 yr old. We have seen this twice, both during the recovery stage. Last year she had pex for an episode, and recently high dose steroids.

 

This is where she is now: wakes up pretty cheerful, goes to school happily, straight As, tons of friends. Comes home happy, talks of the day, does homework. When this is all done, things deteriorate; moody, defiant, somewhat regressive. However, if she gets into a project she is good ( a little manic about the project, however).

 

Last year in this stage - the kids at school were making little shoebox houses for fun- well we had a mansion, hotel, mall, amusement park etc. It is almost like a bit of a manic hyper focus- art/ creativity/ crafts are usually the subject, but Harry Potter and piano have also been involved. We are now decorating cakes :)

 

I will say- I tried to have lots of supplies and suggestions- because compared to everything else- this wasn't bad. I did find that it slowly subsided ( over 2 mos I think). We would liken her many eccentric artists, that lock themselves away for a few months during a period of heightened creativity.

 

I think if you have cleared all infections, and she is doing well at school- I would track this behavior weekly, to see where it goes. Also if you work proactively to channel it while you wait for it to calm down. Does she play N instrument?

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Thank You All So Much

I know we will be doing IVIG again this year because it is just not going away again

but it is ok..

We are a strong family (thank goodness)

Keep all of your chins up and a smile on our face because that is what our kids need us to do

OK I am off to keep my child busy again,her friend just went home.

Tracie

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This was a clear PANDAS symptom for us. She can now handle change, doesn't get upset (at all) when one fun activity is done, and there is nothing else to do. She can handle down-time all by herself and can find activities & do them by herself.

 

During an exacerbations, constant activity was the norm. We had to develop some techniques for this in therapy, because it was not possible to keep it up on my part - or hers. A few things worked for us - we made a list of "quiet time" activities that she could do in 30 minute increments. We made cards (like coupons) that I would hand her and direct her to her independent activity list. One of those times during the day could be used for TV, which was often a sanctuary for her. (However, we did find that immediately after a TV time, she had extremely high anxiety levels, so we had to prepare for that. As a result we kept TV time to a minimum.) We also found that setting a schedule at the start of the day, and keeping to that as much as possible, was very helpful to her. We did not set exact times, but set time ranges for most activities, as she was very literal during that time (outside of an exacerbation, she is a very flexible child and adapts to a changing schedule with astonising ease).

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