Need some urgent help

[BarbsUK]

Hello all, thank you for any help you can give

Brief background:
Have a 12 year old daughter
Started Tics at 7
Diagnosed with TS and OCD at 9
Moderate tics changing every 6 to 12 weeks.
Tics are worse in the evenings
OCD around clothing textures
Anger outbursts around homework as she struggles at school

NOW:
9 days ago things changed drastically.
She is almost completely unrecognisable.
This change happened within just 1 to 2 hours!!!

We have been shocked by not only the speed and drastic change in her TS and OCD, but also the deterioration in her mental health and the extreme personality change.

She now has:

Severe TS (holding breath until almost passing out, screaming, swearing, hitting herself, hitting others, throwing objects, licking peoples arms, biting things, putting hands in food and drink, attempting to put her hands in boiling water, unable to use sharp knifes as she diggs the blade into the chopping board)

Severe OCD (yesterday she had an emotional meltdown over Christmas decorations and became so distressed she had to go to bed with a family member calming her down. This has continued today and we had to let her completely re decorate the Christmas tree)

Regression (at times she has become childlike, almost like living with a 3 or 4 year old, unrecognisable, irrational, confused, talking to stuffed toys as if they are alive and terrified they are going to die)

Anxiety (irrational fear that her parents are going to die, that the house will catch fire and crying inconsolably)

Delirious (became extremely distressed when a parent fell asleep next to her, she was convinced they had died and were laying dead on her. After they woke up she was relieved but minutes later when the parent went back to sleep she again started crying hysterically that the parent had died)

Hallucinations (believing she has snakes on her, around her neck, again hysterical/inconsolable, she has a fear of snakes but nothing like this)

Bedwetting (wet the bed last week for the first time since she was very young)

Separation issues (does not want to be left in a room alone, telling everyone she loves them, begging for people not to leave her and not to die)

Suicidal thoughts (wanting to die and repeatedly saying she does not want to live anymore)

Laying on the ground complaining her legs don't work. Saying she's going to faint then her head goes floppy (could be linked with the breath holding tic)

We have had to take time off work but only have 1 more week off. It is taking 2 parents and an older sibling to care for her. She has been off school all week and we don't believe she will be able to return. She is unable to prepare food, shower, eat or dress alone. One parent must be with her at all times and it takes another to make food, sometimes 3 of us to give her a sip of water. Some nights her Mum has to sleep in her bed as she doesn't want to be left alone.

We are completely and utterly shocked as to the massive change in her TS, OCD and change in personality and particularly the fact that this all happened within a 1 to 2 hour period...

She has always had tics (TS) and OCD with anger issues and some autistic traits (understanding things very literally), but she has never had anything like this.

Her doctor knows very little about TS, has advised that TS can get worse in the teens and that there is no medicine to treat TS, only anti depressants.

Please help us

[Chemar]

Hi Barbs

So sorry to hear of your daughter's condition.

The dramatic changes you describe sound like perhaps they may be PANS/PANDAS related?

Here is an overview

https://latitudes.org/category/conditions/pandas-pans/

We also have a forum where you may find more helpful info:

https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/

 

[BarbsUK]

Thank you so much for the reply, we have looked into this and it seems she does have almost all the symptoms of the above. We've spoken to the doctor who has said he agrees the symptoms match and that any sudden neurological changes require tests such as for bacteria/viruses. She is booked in for an appointment tomorrow to do some of these tests even if it is to just rule some things out.

Thank you

[Chemar]

Good that your doctor has agreed to check into this further!

Not sure what tests they are running, but do note that if this is strep related = PANDAS then they need to run blood titres rather than just do throat swabs.

The PANS forum has a number of pinned threads that explain this in more detail as well.

 

[BarbsUK]

Thank you heading over shortly so I'll take a quick look for that thread.

[Emmars26]

I hope your doctor was helpful with testing. 

[Mommymom]

Hi @BarbsUK, 

How are you? How is your daughter doing now? I really hope she is doing better with her tics and emotionally. 

Did you get PANS/Pandas tests done? If so, we’re they helpful?