Please help..want to put DD is Psych ER

[FallingApart]

Sorry I have been absent. You can imagine how the past few days have gone. We were able to keep her out of the hospital, thank god.

 

To answer a question, I live in Seattle. Thanks to a PM from someone we got the kick in the pants that we need to start Lyme treatment again. I'm perplexed tho because her ped, whom we have a wonderful relationship with didn't even want to run titers on her or start steroids. The ibuprofen is helping but not enough.

 

Thank you for the advice on addressing the trauma of the pandas child now. I wouldn't have considered that because I have such a hard time being compassionate to dd, but I will call and ask that that be addressed in tomorrow's counseling session.

 

Dh and I are leaning more and more towards her having done the whole thing because of my surgery. I had a laparoscopy and have 5 holes in my belly that clearly came from a knife. I don't want to minimize this in any way, but wee also are at a loss as to how in the world she would know how to do something like this. W don't let her watch anything past Clifford!!!!!!!

 

I appreciate everyone's quorum on avoiding the hospital. The counselor told her that if she couldn't follow the rules she would have to go to the hospital to stay safe. I'm not sure I'm going to follow through on that part.

 

When does it ever get easier????????

[FallingApart]

Sorry I have been absent. You can imagine how the past few days have gone. We were able to keep her out of the hospital, thank god.

 

To answer a question, I live in Seattle. Thanks to a PM from someone we got the kick in the pants that we need to start Lyme treatment again. I'm perplexed tho because her ped, whom we have a wonderful relationship with didn't even want to run titers on her or start steroids. The ibuprofen is helping but not enough.

 

Thank you for the advice on addressing the trauma of the pandas child now. I wouldn't have considered that because I have such a hard time being compassionate to dd, but I will call and ask that that be addressed in tomorrow's counseling session.

 

Dh and I are leaning more and more towards her having done the whole thing because of my surgery. I had a laparoscopy and have 5 holes in my belly that clearly came from a knife. I don't want to minimize this in any way, but wee also are at a loss as to how in the world she would know how to do something like this. W don't let her watch anything past Clifford!!!!!!!

 

I appreciate everyone's quorum on avoiding the hospital. The counselor told her that if she couldn't follow the rules she would have to go to the hospital to stay safe. I'm not sure I'm going to follow through on that part.

 

When does it ever get easier????????

[SurfMom]

Falling, I am really pulling for you. I can't imagine trying to get through health issues along with managing your daughter and for that I wish you strength, plenty of rest and some peace for your family.

 

DD 15 was really neurotic, expressing some very scary behavior when this started. I can't emphasize enough how important I think it is to approach this as a physical condition with psychological symptoms - but very real and potentially dangerous symptoms that have to be treated too.

 

The smartest choice we made was to push to have a neurologist/rheumotologist/immunologist lead the way on treatment as this has physical causes. DD has had thorough neuro-psyche testing and has a pediatric psychiatrist...but this was secondary to addressing the inflammation of her brain resulting from of her immune system going haywire (cross-reacting antibodies). It was admittedly tough for me to cross that bridge into psychiatry but reality forced me to realize this was not going to be a short-term problem and we did need the support from that specialty.

 

We are eight solid months into treatment and finally making gains. It has been eight months of playing cheerleader to a pretty unhappy kid which has pushed me to my limits at times. DD still has OCD behaviors, cries sometimes for no reason and has angry outbursts (prednisone) with a general state of irritability but it is turning around. It will for your daughter too.

 

Here is what we did to make things better at our house:

 

1. I put a queen size bed in DD's room. When she is having tough nights, I can sleep in her bed with her. That means I can turn down that mom radar and get some sleep myself.

 

2. My husband and I tag team so I can nap, run, surf and get my hair done. It makes all the difference in the world to get that time. I give him the same unencumbered breaks.

 

3. I dug out and hooked up the baby monitor. It allowed me some distance so I can do selfish things like take a shower, lol.

 

4. We removed the burner handles on the stove (because in our case, DD was already cooking) and bought a home safe where we keep all the dangerous medications. I thew out all old medications that we aren't currently taking.

 

5. We boxed up and put away all but two sharp knives and one pair of scissors...just easier to keep track of a few. Tools were locked up.

 

6. We walked through every single room with a "what could I do to harm myself in here" perspective and tried to secure what we could. We got rid of all the cleaning supplies in the kitchen and bathroom and locked them in a cabinet in the garage.

 

7. We put in our minds that if she wanted to hurt herself...she could. That meant we had to watch her like a hawk. Get respite care if it goes on too long so you can get a break. I don't want to overly alarm you but we just lost an autistic child to a drowning here because he walked out of a condo and made his way into the gulf. Bad things can happen and you can't let your guard down for a second. Take every offer of support you can. It won't last forever and you need to take care of yourselves so you can stay on top of your child.

 

This probably won't last and it's not "her" but it's very real and very dangerous. Trust your gut (Oooo, bad pun) and be confident and assertive about what you want, what concerns you have and when you want to turn off a switch, whether you are in ER or in the doctor's office. My sense is that it is better to seek treatment through your lead physicians than in the urgency of the ER but there are advantages in going that route too...faster diagnostics for one. Godspeed that she moves out of this phase quickly and forever.

Edited July 11, 2013 by SurfMom

[FallingApart]

Thanks so much for your input everyone. Things seemed to have stabilized and I did get her on steroids. But something REALLY set her off last night. I was standing right there and to me it just looked like she didn't get her way. She ran home and started singing about how she was going to kill herself again!!!!

 

We have an appt w a LLMD psychiatrist this week and I'm worried that I'm putting all my hope on that appt.

 

I hope everyone else had the most boring of weekends.

[tpotter]

Glad you're seeing an LLMD. Keep in mind that steroids can make lyme worse. Could it be the steroids?

[FallingApart]

I know ab steroids being bad for Lyme. We never do a full course. Only till we see an improvement. I really and truly HATE steroids!

 

I don't think the steroids made her worse. Perhaps a bit better.

[Mayzoo]

Thanks so much for your input everyone. Things seemed to have stabilized and I did get her on steroids. But something REALLY set her off last night. I was standing right there and to me it just looked like she didn't get her way. She ran home and started singing about how she was going to kill herself again!!!!

 

We have an appt w a LLMD psychiatrist this week and I'm worried that I'm putting all my hope on that appt.

 

I hope everyone else had the most boring of weekends.

 

Yeah, I get the "flare" when not getting their way. Talk about a tight rope walk.......kiddo has genuine emotional lability related to PANDAS, but sometimes she also has tantrums related to being 11, chronically ill, not getting her way, and autism all mixed together. They present almost identically, so I have to be a master detective to figure out which is which so I respond appropriately . That can be quite tiring in itself.

 

I find if she melts down, then throws something and I get after her and send her to her room, if she is just tantruming, then it clears up quickly. If it is true PANDAS, it does not clear up near as fast. Either way, throwing things is not tolerated in this house, so I give her alternatives to release frustration but boy is this stressful and tiring!!

 

I am glad you are getting even a small break. I cannot imagine the suicidal threats, so I have no real advice.