Taking her to NYU. Can't wait. No sleep 3 days. Advice?

[trintiybella]

I am going to bring her to NYU. I can't wait for Dr. Latimar in August. I will not mention PANDAS. I am going to try to load her up on motrin and wait til tuesday because I hear Dr. Najaar is in on Wed., right? I know someone mentioned he's not taking new patience but we need to try. I WILL BEG when I get there. OMG, she is so awake. Nothing helping at all.

[JoyBop]

Not mentioning pandas sound like a worthwhile approach. Are you going to bring any bloodwork with you? Is this out if your state? I'm just curious about coverage. My insurance won't pay out of state unless the diagnosis code used is life threatening if we end up in ER. I'm sure you don't care but its worth mentioning if it helps you plan for unexpected expenses. My insurance co has been very unreasonable and we pay dearly for it!!

[Hopeny]

I think its a good idea. You may be dealing with issues outside of PANS. Good luck.

[trintiybella]

I tried calling my insurance to see if they cover NYU. Nobody is in today. I am going to try to wait till tuesday and go right over to NYU, after I check out my insurance. there is no way i can pay big bills right now. i think she can hang on til then. i am just freaking out that the insomnia is getting so bad. i really need to get to see doctor N.

Edited July 25, 2013 by Sheila Rogers

[PowPow]

Trinity,

I do not know from first hand experience, but from hearsay, I do not think you will get to see him in the ER. he does not see kids, and she is a young teen, correct?

If she is really not sleeping AT ALL go to any ER. I am afraid you are going to end up with them sending her to a psych hospital. Just keep holding on until dr t or dr l can help you.

Was she ever neuro-typical?

[LaurenK]

Yes, he does not see children. I am an adult and I believe there is a very long waiting list for him now. I'm not sure I started seeing him before the whole brain on fire thing.

[frikfrak]

Hi

 

My DS (23) didn't sleep for a few nights, I think because started new ABX...Rifampin/Minocycline/Tindamax...what have you tried to give her?

 

I finally gave my son a couple of things and it worked...slept last 3 nights...also decided to stop the ABX, just gave the others he was on (malarone/arteminisia) and stop all supps just for the weekend to give him a break and he now slept last 3 nights.

 

Going to start back up everything on Monday.

[T_Anna]

According to a family ftiend at NYU, dr. N is a star in the epilepsy center at NYU. Epilepsy is generally closely connected to Pediatrics (according to an ER doctor friend). If you can get them to observe her for 24 hours due to seizures you can perhaps find someone familiar with NMDA and with Dr.N since that would be in the epilepsy ward.

Because of the book and it's popularity, NYU doctors (especially) in epilepsy may be more inclined to see autoimmune encephalitis as a real diagnosis.

Good Luck

T.Anna
DS15

[trintiybella]

It's not drugs keeping her up. Been like this since birth and getting worse. I need to get her somewhere. I will get on phone with Dr. T., and sort this out, or Dr. J. .... Can I ask you guys something? The only thing we have not looked into is parasites. Black walnut oil has put her to sleep at times, but there were so many other symptoms that it did not help that I just concentrated on bartonella etc..... Could a parasite be attacking her brain??? I see that labcorp has blood tests for parasites. Is that the way to go? or stool, or just treat for them and see what happens. Just gotta keep trying everything. She is actually sleeping now after like 3 days of being up. As she sleeps though.... you could touch her with a feather and she wakes. As she is sleeping her arms do really wierd flailing and she bolts up though out. So odd. Had 4 EEG's , sleep studies. Tell me what you feel about the parasite thing please???

[peglem]

Get some footage of that stuff that happens when she sleeps, since a doctor is unlikely to witness that and it should help a good neuro to see what she's doing.

[tpotter]

 

This is a good idea. And, in some cases he actually does see pediatrics. My son was 16 when he went to see Dr. N, but I do believe that originally it was going to be tied with (as a co-visit) with an pediatric epilepsy dr, and for some reason THEY decided to cancel the co-tx, and just had my DS come in straight to Dr. N (at his SI office...which turned out to be more convenient for us, anyway.) But, we were dealing with seizures, in addition to PANS. Those of you who have also seen Dr. N...does he only see people with seizures?

[JoyBop]

Do you keep a log of activities and sleep? This could be really helpful if you were able to show actual data. Has she a ER had a sleep study done at all? I'm wondering if there are any inpatient type sleep programs she could be referred to that would be far different from the psych wards. The problem with emergency rooms is their job is to stabalize, give you a band aid and refer you for follow up. If they do t see a life threatening issue they will perhaps do some labs ect and tell you to follow up with your dr. On the other hand, they could refer you to a sleep clinic or other specialist there that could help. You could also request to see that doctor you are speaking of and see where it takes you. If you do go, I would go when she has gone days with out sleep and presenting at her worst. May e there are tests they can run that will show something to point you in the right direction. What does your primary care doc say? Seems to me that is the person who should be moving some mountains for you now.

[PowPow]

I agree, does she have a primary doc- to get you going on this sleep issue? there are certainly severe sleep problems with PANS- my daughters' got better after pex, but I wonder if you have something else going on. Is she otherwise developmentally normal for her age?

[Guest]

I agree with Lauren that Dr. N is a neurologist and even Susannah Cahalan (brain on fire) who was having severe seizures, paranoia, hallucinations, didn't get in with him for months. She was first seen by many other physicians and was only kept in the hospital b/c of the seizures, otherwise every single person at NYU thought she had schizophrenia and wanted to send her to the psych. ward. To think that one doctor is going to fix everything isn't reasonable, I know b/c I've seen hundreds, and also it maybe not be possible to just go to ER and see him as he is highly sought after. I get the feeling he is seeing patients with really severe neurological problems who have already exhausted all resources or are in situations like Cahalan, b/c I was told he will read through the records he gets and hand pick cases to treat. But I've never really seen him, this is just my take on what I've read from other patients.

 

With that said, I understand insomnia very well. I virtually didn't sleep for 6 months, no joke, and I would go days without sleep, and I was hallucinating. All they can do at ER is: give you antipsychotics to knock you out (what they did for me), give you a shot to knock you out, or put you in psych ward. I don't know what to say. I've seen tons of neurologists and sleep specialists and nobody has been able to solve my insomnia, I even tried xyrem..........

 

With all the problems I have, they refuse to put me in the hospital and do anything. Without the seizures they wouldn't have with susannah.

 

The life-saver was my psychiatrist b/c he knows how to treat sleep pretty well and I would suggest finding a sleep neurologist at least for now. They will put her on meds but that's the only thing getting me any sleep right now. I had the most success with low dose zyprexa and xanax at that time. Pulmonologists won't do crap sorry, they are looking for apnea or RLS. But the best immediate help would come from a psychiatrist who understands insomnia and or a sleep neurologist who will probably want a sleep study stat.

 

I'm so very sorry, I know what it's like, insomnia is the worst symptom ever, EVER!

 

I am speaking though as an adult so I don't really know what to say for children, I'm sorry. I got sick at 17 - 18 so I just don't know the child's perspective or what is safe for them. Dr. T is bad at getting back to people so that probably isn't a good idea either. I just think finding someone local who really wants to help and is accessible at ALL TIMES and knowledgeable is always the best for insomnia. Lastly, I have a therapist who worked in a sleep lab for a long time and he helps me and is there to call whenever I need him.

[Guest]

Another thing I thought of. Any neurologist I saw wanted a sleep study or to see my sleep study results.

Would be great to get that done with your PCP b/c that'll be the first thing they order.

Can be helpful.