LymeNet Flash: child still in a daze

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Posted by Rgarfield (Member # 7409) on :

It has now been 3 1/2 days since my daughter recognized me or even herself. She is in a constant state of confusion.

She is scared of anyone and everyone. I am doing my best to just keep her calm and here at home.

She tends to try to leave and wander--looking to find her home!

I took her to her local doc and they did labs--nothing showed up. I called her lyme doc and he said he wanted to talk to the local doc.

Am I being paranoid or worrying too much? Has anything like this happened to any of you? I need help!!!!!!!

Posted by Tincup (Member # 5829) on :

Hey,

I just saw your previous post.. but unfortunately you did not respond back to let anyone know if she is on meds or answer their questions. This info would help us to help you and her... which we would like to do.

If you are concerned.. always first take her to the LLMD or the ER... or call them again.

Have you read about herxing?

Has she stopped the meds she was on?

I'm sorry.. just need more info before we can put things togehter.

I'll check back tonight to see if you have replied.

Posted by Lymester (Member # 5848) on :

Yes, this sounds frightening. I would ask to see the LLMD immediately.

Posted by cbb (Member # 788) on :

Who is her Lyme dr?
Just give last initial & location - no names.

Has your dr consulted with the Lyme Pediatrician in New Haven, CT?
He's given permission to give his name & contact info.

Dr Charles Ray Jones
Phone: 203-772-1123
Fax: 1-203-772-0682

For more info about him: www.wildernetwork.org/LDpediatricfund.html

He has treated over 7,000 children with Lyme so he's the real expert.
Absolutely wonderful man.
My grandson sees him every 3 months.

Posted by Rgarfield (Member # 7409) on :

Thank you for replying. SHe has been on meds since January. She was on Biaxin and Plaquenil, then on rocephyn iv and as of late has been on tetracycline. She is due to see her LLD on the 22nd. I have called him and emailed him. I just want to know if this is the way it happens. Is this a herx? Any help is appreciated.

Posted by NP40 (Member # 6711) on :

I've known people with lyme who've forgotten how to turn off a faucet, look for car keys when they were in their hand, get lost in a grocery store or forget why they went in the first place.

Eventually, the abx will alleviate these symptoms, but in the meantime definitely check with your doc, and keep a very close eye on her. Move your bed into her room if you have to, so she doesn't get up in the middle of the night.

We did this with our son, because he would get up in the middle of the night [delusional] and walk around, turn on the stove, etc. Good luck, it will get better !

Posted by Lymerayja (Member # 6839) on :

quote:
Originally posted by Rgarfield:
It has now been 3 1/2 days since my daughter recognized me or even herself. She is in a constant state of confusion.
......
Am I being paranoid or worrying too much? Has anything like this happened to any of you? I need help!!!!!!!

You are most certainly not being paranoid nor are you worrying "too much". You need to watch your child every second while she is in this state. Try to marshal whatever help you can from friends,family or neighbours, and impress on your LLMD that it is an emergency.

Two eight year old twins with Lyme became confused, along with all their physical disabilities. One had frank hallucinations. Both had periods where they did not know where they were, did not recognise familiar people or objects.

NP40 is absolutely right. You must watch them every second. A child (or adult) in this state can do anything, including hurl themselves out a window.

I don't mean to terrify you by telling you this, but you need to be forewarned, and understand that you are absolutely right to worry, and be on your guard at every moment.

But you should also be comforted by knowing that both adult and paediatric Lyme patients have pulled out of this state.

The two children I described became 80% well of all their symptoms - mental and physical - on high-dose amoxycillin. They relapsed when taken off the abx, but recovered later after being given the anti-helminthic drug mebendazole - purely by chance, as it was given for a different reason. Why they recovered on this drug, I do not know for sure.

I hope you find the strength, practical help and medical assistance you need to see your child through this terrible situation.

Lisa

Posted by cbb (Member # 788) on :

Any improvement in your daughter's condition?
Is she still in a daze?
Very concerned about what y'all are going through.

Any info from your LLMD?

Posted by Lymetoo (Member # 743) on :

Did I miss where you said what age child this is??

------------------
oops!
Lymetutu

Posted by Linda LD (Member # 6663) on :

Rgaefield,

Are you all o.k?

You both are in our thoughts and prayers.

Linda

Posted by Rgarfield (Member # 7409) on :

Thank you for all your prayers. My 17 year old and I are okay. She started coming out of it yesterday and so far today has been with it. We go to the doctor this afternoon and then to see the Lyme doc again next Wednesday in Boston. I just pray every day that she will remember me and herself as well..

quote:
Originally posted by Linda LD:
Rgaefield,
Are you all o.k?
You both are in our thoughts and prayers.
Linda