Psych Ward

[fuelforall]

Hi folks,

 

We had my son admitted to the child psych ward of a hospital yesterday. Our fairly small apt, a three-year-old brother, violent rages, it just became too much for us. He refused to go to school, takes his meds (including Keflex, which was not working), the exacerbation was too much for us. (I re read Pixie's Mommy's piece on her daughter from a few months back... phew! It feels that bad to us but probably wasn't.)

 

We are meeting today with the psychiatrists to talk about treatment during and after release. My son's psychotherapist, of all people, wants my son to get a full work up,including MEDICAL and NEUROLOGICAL work. She says after assessing him over a few months, it is clear there are not just behavioral patterns involved.

 

I have filed to get pre approval for IVIG treatments with United Healthcare.

 

I am hopeful the hospital will be okay for my son but that they will not let him go too soon, as is most hospitals' tendency. He really needs to be treated in some way to reduce some extreme symptoms.

 

DS9 has low IGG numbers but I also noted his other two Iga and Igm, are on the low side of normal.

The shrinks have all heard of PANDAS but refer to it as "rare". I beg to differ. I am meeting people with kids just like mine. Really.

 

your thoughts are appreciated.

 

Michael

[ajcire]

I wish I had good input but I don't... just hugs because that must have been a heartbreaking decision to make. Take comfort in knowing you are doing what you need to do for your son's health and safety. I hope that you encounter the right people to help him have a quick recovery.

[dcmom]

Michael- I am so sorry. I cannot begin to imagine the agony you are going through. I am not that familiar with your son's history, but is there ANY way you could consider plasma pheresis for him? I know there have been mixed results, and many parents feel ivig is their preferred route. But, pex it immediate and I think is the go to procedure for extreme situations. It can within a day start to rid your son of symptoms. There will still be issues to deal with, possible ivig to follow it up, and of course longterm antibiotics. Of course Dr Latimer has it done at Georgetwon, but I believe Dr ELia at CHOP has had it done, and maybe a Dr Chiriboga at Columbia (in NY). My daughter has been through it, and I can tell you it pales in comparison to the agony of a pandas episode. I am not sure where you live- or if this is helpful at all to you...

[faith]

((Michael))

don't kinow what to say, but I pray this will prove to be of some help to you all, perhaps a blessing in disguise.

 

Are you sure none of the meds he is on could be causing some of this? sometimes meds just don't agree with some kids and have really adverse effects on them. really don't know, but I hope the psychotherapist and psychiatrist can sort this out.

 

God Bless and please keep us posted.

Faith

[mama2alex]

Michael,

 

I'm so sorry. I hardly know what to say to you, except your family is in my prayers. It sounds like you made the best decision for everyone's safety. So glad to hear the therapist is recommending a medical and neurological work-up. Take care.

[melanie]

Michael- I am so sorry. I cannot begin to imagine the agony you are going through. I am not that familiar with your son's history, but is there ANY way you could consider plasma pheresis for him? I know there have been mixed results, and many parents feel ivig is their preferred route. But, pex it immediate and I think is the go to procedure for extreme situations. It can within a day start to rid your son of symptoms. There will still be issues to deal with, possible ivig to follow it up, and of course longterm antibiotics. Of course Dr Latimer has it done at Georgetwon, but I believe Dr ELia at CHOP has had it done, and maybe a Dr Chiriboga at Columbia (in NY). My daughter has been through it, and I can tell you it pales in comparison to the agony of a pandas episode. I am not sure where you live- or if this is helpful at all to you...

 

 

Sorry Michael keep a close eye on him there We saw Dr Chiriboga at Columbia she doesnt believe in pandas but she very helpful.She also doesnt take any insurance She likes psy meds alot too.

[thereishope]

I am so sorry. How old is he again? My sister was admitted to the psych ward when she was in the 8th grade. She was angry about it at times, but also it was a good place for her at the time.

 

Have you talked to anyone at UHC about the admittance? My mental health benfits with them aren't good. Also, watch out what forms they send you in the future. They wanted me to sign something that would have given them access to all of his psych med records and allowed them to talk to his therapist about his sessions. If that happens, your out of control about what is in his med records and on file with insurance. They will not decline benefits if you do not fill it out and sign it.

[sf_mom]

Michael,

 

I am so sorry too. I PRAY your son gets the medical attention he needs to make him well.

 

-Wendy

[fuelforall]

Michael- I am so sorry. I cannot begin to imagine the agony you are going through. I am not that familiar with your son's history, but is there ANY way you could consider plasma pheresis for him? I know there have been mixed results, and many parents feel ivig is their preferred route. But, pex it immediate and I think is the go to procedure for extreme situations. It can within a day start to rid your son of symptoms. There will still be issues to deal with, possible ivig to follow it up, and of course longterm antibiotics. Of course Dr Latimer has it done at Georgetwon, but I believe Dr ELia at CHOP has had it done, and maybe a Dr Chiriboga at Columbia (in NY). My daughter has been through it, and I can tell you it pales in comparison to the agony of a pandas episode. I am not sure where you live- or if this is helpful at all to you...

 

Hi DC Mom,

Not sure about PEX, but his neurological issues are numerous. Not sure how insurance can pay for it, right? PEX is pretty experimental in some circles.

ALSO, if you look at DR. T's recent post, you'll note PEX is not a good idea for PANDAS 2 type cases. My son has reduced immunity. Have I misinterpreted here?

I'm in NY City so the Columbia person is intriguing to me. Thanks.

Michael

[fuelforall]

I am so sorry. How old is he again? My sister was admitted to the psych ward when she was in the 8th grade. She was angry about it at times, but also it was a good place for her at the time.

 

Have you talked to anyone at UHC about the admittance? My mental health benfits with them aren't good. Also, watch out what forms they send you in the future. They wanted me to sign something that would have given them access to all of his psych med records and allowed them to talk to his therapist about his sessions. If that happens, your out of control about what is in his med records and on file with insurance. They will not decline benefits if you do not fill it out and sign it.

 

 

Hi, UHC has given the ok for admittance, this was the only facility in my immediate area they would permit. THanks,I'll watch for the form!

[fuelforall]

Well, the meeting went something like this.

 

Doctor: Your son has LOTS of issues.

 

Got it.

 

WE CAN'T TREAT PANDAS, THAT'S UP TO YOUR OTHER DOCTORS

 

Right

 

HE SAID HE HAS NOT SLEPT WELL IN TWO YEARS.

 

Makes sense, he falls asleep okay but never stays asleep. Nightmares, raging, etc.

 

So they are going to work on sleep and meds for sleep. They will bring in a pediatric neurologist. Maybe we can get an MRI out of this. They expect to keep him a while. Then they'll assign us a NYC caseworker.

 

Thanks for your support, all.

[dabel]

Michael,

 

I am so sorry to hear that you have had to make this decision. I know how you feel. I have had to admit my son twice. It was the hardest thing that I have ever done. The first time he was 8 and the second time he was 11. It was during the second stay that PANDAS was mentioned so I guess it somewhat got us heading down the right path - eventually. Everyone's safety is important and when that is in question you have to make some very hard decisions. I am praying for you, your son, and your entire family during this most difficult time.

 

DeAnn

[MomWithOCDSon]

Michael --

 

So sorry to hear this news. Honestly, it feels as though one of our own "soldiers" has fallen. Please let us know how things move from here and how your next steps pan out. Hang in there . . . it WILL get better!

[dcmom]

Michael-

Our insurance pre approved pex for our daughter at our in network Georgetown U hospital. She had the procedure, it was miraculous for her in the sense that immediately we were seeing a kid we hadn't seen for a while, issues that we didn't even attribute to pandas were gone. She was in the hospital for 4 days, it was stressful but so worthwhile. Then the bad news- she had a pandas episode a month after pex when she had H1N1- this however was stopped in its tracks after the first dose of steroids, she has now been really good since Thanksgiving. I don't know what the future holds, but I do think the PEX got her back to baseline and we are so much better off for that. Now of course, our insurance company has initially denied (yes after they pre approved treatment) paying the 28000 pheresis bill. At best we have a battle on our hands, at worst we will have to pay some of that eventually. But frankly- we have our daughter, our family back.

 

I know there is someone at Columbia that has done pex for pandas. If your son has been admitted to the psych ward, I would call this an emergency case. Call Dr Trifiletti- he has lots of history in NY- he may know who you can turn to. If your son has reduce immunity you would need to follow up with IVIG most likely. Please keep us posted- we are all devestated for you and your family.

 

Eileen

[matis_mom]

I am sure it was not an easy decision but I applaud you for taking charge. Our prayers are with you that the doctors will do what is best for your son. Just be prepared to be your child's advocate and keep a close eye on things. Not too long ago there was a post from a mom whose son had a horrible, traumatic experience at the psychiatric ward. I am saying this not to scare you but rather to alert you that you will have to be strong to get the best care for your child. Hopefully they will be able to stabilize him and give you a bit of time to get the right treatment, which for a PANDAS child involves treating the cause, not just the symptoms.

 

Isabel