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Says she can "Feel the Pressure"


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My DD7 started yelling this week that she can"feel the pressure" and she cant take it much longer.

 

Her symptoms have been up and down since Jan - but we have definitely seen progress and then lots of backsliding and then progress... and then - well you know the pattern.... Here is a brief background of meds since Feb

10

For the last 2 weeks the meltdowns have become more frequent and the anger/rage has returned. We did a 10 day steroid burst and started zith. beginning Feb 13 - we saw some big gains - most of the OCD was gone- the meltdowns became less frequent and the full blown rages were gone.... this honeymoon a few weeks - by the beginning of March we dropped back to prof. dose of zith (2days per week) things started ramping up gain (and I got word of confirmed strep in class... and she has been fighting off colds/allergies? since the snow melted) so went back on full zith last week and this week added 1000 mg of augmentin per day...

 

This week she has really struggled with behavior... she has gotten warnings in school (which is rare for her as she tries very hard to hold it together at school and then falls apart at home) she has had a lot of meltdown, age inappropriate behaviors, rages, vision fogginess, headaches, stomach aches, OCD stuff is still on the low side but I did notice tonight her hands are getting that 'tell-tale red/raw look" again....

 

so.... does anyone have any idea what this 'pressure is" - she says it during meltdowns and rages... last night she said she felt like she needed to kick or hit or tear or something - but she just laid on the floor and kicked and yelled (this was after she attempted to destroy the kitchen) .... and today after her eye doctor appointment she had the same thing happen - she got very angry about going to school late... tries grabbing the steering wheel - unbuckled, moved around the van - tried to bite my shoulder (luckily it was cold this morning so I had on a sweater) - and in the middle of the fit she started to the talk about the pressure...

 

not sure what to make of this :unsure:

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I am so sorry-- It sounds like your DD is really struggling -- the scene in the van hits close to home. At times like this our d said things that indicated she felt a sense of hopelessness as she was incapable to stop herself--perhaps that could be the "pressure?"

 

You note the Azithro. is full strength right now, as in full strength as if she had active strep, is that correct?

Is it as high as it was when you saw such a radical improvement, after the steroid burst, when she was also on Azithro.?

 

Sounds like the steroid burst + the antibiotics had a very good effect for her--I hope the positive trend will continue beyond this week of set-back. Take care.

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I had to write and comment about the "red/raw look on your dds hands" -- my dd has that strange thing now and then as well and I thought it was unique to her alone and never associated it with Pandas. It always looked like her hands must have been damp and then went outside in really cold wind (but she never did) and that's what the redness looked like...I could never figure it out. Why does this happen?! Does anyone else see this? Sorry, I did not mean to pull that lone thought out of your thread, but that one blew me away. I can relate to 95% of what you are experiencing. It's like they are exploding inside and demonstrate it on the outside. Awful to see and there is no getting out of it, they just have to "pass" though it. My dds last episode of rage, etc., lasted 4 weeks after ivig, then it passed and I am still holding my breath, week 6 now post ivig.

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I had to write and comment about the "red/raw look on your dds hands" -- my dd has that strange thing now and then as well and I thought it was unique to her alone and never associated it with Pandas. It always looked like her hands must have been damp and then went outside in really cold wind (but she never did) and that's what the redness looked like...I could never figure it out. Why does this happen?! Does anyone else see this? Sorry, I did not mean to pull that lone thought out of your thread, but that one blew me away. I can relate to 95% of what you are experiencing. It's like they are exploding inside and demonstrate it on the outside. Awful to see and there is no getting out of it, they just have to "pass" though it. My dds last episode of rage, etc., lasted 4 weeks after ivig, then it passed and I am still holding my breath, week 6 now post ivig.

 

 

Our d had "red/raw" look of the hands from the constant washing and rewashing when fearful of germs/OCD was affecting her--

wore her hands raw.

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My dd17 talks about her brain feels swollen. She had never mentioned this until she started getting better. Her eyes cleared, and she said "my brain feels less swollen". When I think about it, her behavior also correlated with this. Her thinking gets muttled, distant look in her eyes, black circles. The swollen feeling is when things are bad.

 

Ellie

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Ds is always saying "my brain hurts". The pressure feeling seems to me like a psychic pressure - like the flood waters pushing on the gate before the dam bursts. In meltdown mode, before he's lost his senses completely, sometimes my son will ask for something to break or rip up - I've handed him newspapers, tissues, pencils etc. This is much better than throwing rocks through the wall, kicking holes in the door.. Thank god he hasn't discovered cutting - but the ones who do cut say its to relieve- guess what - "pressure". You know that saying - I feel so angry I could scream? I think its that feeling, only 100 times stronger.

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Our d had "red/raw" look of the hands from the constant washing and rewashing when fearful of germs/OCD was affecting her--

wore her hands raw.

Same here. We have changed all our soaps to be moisturizing, curbed DS's access to soap, use a heavy hand cream (Neutrogena Hand Repair) in the morning before he walks out the door for school and at night before bed, and continue to work with ERP to stretch out the intervals between hand-washing.

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Ds is always saying "my brain hurts". The pressure feeling seems to me like a psychic pressure - like the flood waters pushing on the gate before the dam bursts. In meltdown mode, before he's lost his senses completely, sometimes my son will ask for something to break or rip up - I've handed him newspapers, tissues, pencils etc. This is much better than throwing rocks through the wall, kicking holes in the door.. Thank god he hasn't discovered cutting - but the ones who do cut say its to relieve- guess what - "pressure". You know that saying - I feel so angry I could scream? I think its that feeling, only 100 times stronger.

Another "aha" moment here, when I have gone for years thinking that this vernacular ("my brain hurts") and the behavior (needing to break or snap things) was solely my DS's! Twin children of different moms!

 

My DS13 has said the exact same words during exacerbation, and he will repeatedly snap pencils in half, break pencil leads, shred paper or tissues, etc. The feeling on his part and the words and behaviors have nearly disappeared in the last month or so as the abx seems to have worked its wonders, but what a remarkable synchronicity! Do you think their brains actually, physically "hurt"?!

 

I am continually amazed and perplexed by the similarity in our children's symptoms, despite the wide range of this disorder!

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i would like to tknow about he red hand too

it's my ds' left hand.....the one he flaps the most....(he's right handed)

it got way better with polyspoing.

but now that we started aug...the had looks normal again...been dealing with this since Nov

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Sorry, I haven't read all the responses yet so forgive me if I'm repeating what someone else has said, or have missed something.

 

My son felt this way on Omnicef. It immediately went away after we stopped the 10 day course. He would tell me he wanted to kick holes in the walls, rip the room up and scream. I was really worried about a total mental break down.

 

Have you tried stopping the Augmentin to see if she returns to a more normal state?

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As far as the red hand thing... for her it appears on the top of hand (not palms) and goes from approx knuckles to wrists... I have always seen it as sign that things are ramping up... she starts washing her hands a lot and I have to start watching frequency... sometimes she mentions germs but so far we have not heard about them this time around... it is bizzare how many similarities the kids have...

I am hoping the antibiotics are going to take care of the rage / meltdown part soon! We did have a good morning!

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Ds is about 2 inch width across all knuckles and some toward thumb knuckle....i can't say his is from washing his hands

raw, chafed, kinda crackled, red

 

As far as the red hand thing... for her it appears on the top of hand (not palms) and goes from approx knuckles to wrists... I have always seen it as sign that things are ramping up... she starts washing her hands a lot and I have to start watching frequency... sometimes she mentions germs but so far we have not heard about them this time around... it is bizzare how many similarities the kids have...

I am hoping the antibiotics are going to take care of the rage / meltdown part soon! We did have a good morning!

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I should have put in my last reply that on the hand-washing thing I ma nt sure if it tied with the frequency... as my daughters is also red/chapped/chaffed looking.. and this time around I am not noticing an increase in the hand washing... (but she has had handwashing / germ related OCD in the past).... also my DS10 also gets the same look to his hands when he is having symptoms! It is an interesting symptom... it made sense to me when she was washing her hands all the time... but now that she seems to be washing on a normal basis I can't figure out the redness... could it be an inflammatory reaction of the skin... like a pseudo-psoriasis?

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So does the redness appear before hand washing starts? I wonder if the hand washing compulsion is triggered by a feeling in the hands. I wonder if my daughter's hand biting might be triggered by the same thing. The backs of her hands are badly mottled from years of biting, so I can't tell anymore.

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