Child in Psych ward need advice asap. please!

[putting together the piece]

My ds10 has been hospitalized during this most recent horrific flare. He and we are no longer safe with him home. He has PANS and Lyme. The admission was yesterday and the hospital is giving him his antibiotics and his probiotics but in order to keep him the hospital 's doctor just informed me that I must agree to psych meds or insurance would not cover his stay. The doctor is suggesting Seroqeul(sp?) or Risperadal. We tried Risperadal a long time ago and he only got worse. So I do not want to go the anti-psychotic route.

I had 23andme done for my son his snps are as follows:

MTR A2756G ++

SHMT1 C1420T ++

 

VDR BMS + -

VDR taq + -

MTRR K350A + -

BHMT -02 + -

BMHT -04 + -

BMHT -08 + -

CBS C699T + -

 

I told the doctor I would research and give him my answer tomorrow. Would SSRI's be a problem with these snp's? Does anyone know? My son seems to be violent, irratable, angry, hyper sexual and very inappropiate and then he flips like a light switch and is almost baseline for a few momoments and then flips back to crazy. He is more stable in the hospital which is probably the effect of adrenaline pumping thru his system as he is afraid there. I don't know if that helps or not.

Any insight would be much appreciated.

Thank you.

[dcmom]

I am so sorry you are dealing with this. You are between a rock and a hard place, and certainly the first priority is his safety.

 

That being said, we had a very bad experience with an emergency room this year, which has lead me to be very distrustful of doctors and hospitals. I do not know your situation, but I would consider the following_

 

Are you able to change facilities? The only residential treatment facility that I would trust with my daughter is Rogers Institute. I believe they are in Wisconson. Is moving him there a possibility?

 

I would consult with your insurance company. I have heard that they try not to cover much time for inpatient hospital stay (not surprised, insurance companies suck). Once the facility states he is no longer in crisis (their opinion, not yours) the insurance co will want him released, will not cover.

 

consult an attorney? I don't know your financial situation, but I know the ER totally misrepresented their rights regarding my daughter when we were there. I would not trust what the hospital tells you. Is it possible for you to consult an attorney regarding exactly what your rights are?

 

Treatment? I have also heard that there is not a lot of therapy at some of the hospitals, it is more a "holding" facility until the patient stabilizes. If this is the case, I would look in to following up this hospital stay with a longer residential stay in a therapeutic setting of your choice.

 

I am sorry I have given you more questions than answers. I think Beth Maloney could possibly consult for you, after her medical kidnapping cases she is probably pretty experienced in this area, and we know she understands pandas.

[MomWithOCDSon]

What a horrible situation to find yourselves in; I'm so sorry.

 

We, too, found Risperdal to be a poor choice for our DS when he was in a bad place; he was prescribed Seroquel, also, for a short period. I won't say that we liked the Seroquel, but it did basically put him to sleep for a couple of days and gave all of us a chance to catch our breath. On a lower dose, though, it just sort of "dulled" him out, made him not himself, and we didn't think that was a good answer.

 

I'm sorry that I'm not well-versed enough in 23-and-me or the genetic results in general to speak to any of that and the possible match or mismatch with SSRIs. However, the thing is that, even if you can find the right SSRI and the right dose (low) for your DS, it is unlikely to have a quick enough impact for the hospital; those generally take between 4 and 6 weeks to come to full effectiveness, and especially because you'd want to begin with a very low dose and increase very slowly, if at all, that's a luxury you're probably not going to be afforded in the current situation. They want him quiet and compliant ASAP; unless it's a research or teaching hospital with doctors well-versed in PANDAS/PANS, like Mass General or USF, for instance, I doubt they want to or can afford to address the subtleties of his condition and therapeutic needs.

 

I think reaching out to Beth might be a very good idea, as dcmom has suggested. Holding insurance coverage over your head so that you will agree to anti-psychotics is both unfair and unfortunate, but without a lawyer or advisor to help you advocate for a different "standard of care" relative to a PANDAS patient as opposed to a standard "psych" case is likely to be tough. Another suggestion I might have would be that you try to set up a private appointment with the staff/attending psychiatrist at the hospital? Speak with him directly and get a feel for both his/her level of PANDAS awareness as well as the willingness to think outside the box? Also, if you have a treating psych that you've worked with before on a private basis and whom you trust at all, I would ask them to consult with the hospital staff in that regard, as well.

 

Sending positive thoughts and cyber hugs to you and your DS.

[jan251]

You can search specific medicine names in snpedia and perhaps turn up rs id#s to compare with your results (search the text file for the rs id):

http://www.snpedia.com/index.php/Seroquel

http://www.snpedia.com/index.php/Risperdal

 

You may also put the 23andme results into promethease.com for $5. I recall promethease turning up a couple of rs id #s that indicated something about SSRIs and some about anti-depressants. The person would be "more likely to respond to" certain meds, or not, though my fear in the language is that perhaps "more likely to respond to" indicates more likely to overreact - it's unclear to me without going to the actual medical studies though the studies should be linked at snpedia. (My own child's results are confusing - some results indicate more likely to respond, some less likely)

 

These rs id#s have something to do with anti-depressants:

http://www.snpedia.com/index.php/Rs1360780

http://www.snpedia.com/index.php/Rs2032583

http://www.snpedia.com/index.php/Rs2235040

http://www.snpedia.com/index.php/Rs7787082

http://www.snpedia.com/index.php/Rs7997012

http://www.snpedia.com/index.php/Rs1532701

http://www.snpedia.com/index.php/Rs12720067

http://www.snpedia.com/index.php/Rs4148740

http://www.snpedia.com/index.php/Rs3892097

http://www.snpedia.com/index.php/Rs908867

 

SSRIs:

http://www.snpedia.com/index.php/Rs6311

http://www.snpedia.com/index.php/Rs1364043

(should probably search for more)

 

Hope this helps...

Edited June 18, 2015 by jan251

[4Nikki]

If I may,

 

First say, how sorry I am that you have to experience this situation. I pray that your son gets better.

 

If you do not have a relationship with anyone in the facility, I suggest you might need an advocate. Preferably from the facility. I have found when dealing with any agency they follow the rules and are always on the defensive. The purpose of this posture is safety first. Which is what you seem to need. Our DD raged for 4 months straight, and I could not blame DD mom, if she admitted her but she stuck with it and so did DD's big brother. We knew nothing about how the system works and when we learned about how they can take control away, we needed to know what our alternatives were. I found with some people in my work that are set in their ways, can be difficult to work with and defensive.One of the easiest ways to break down walls is to ask for assistance. It seems to feed what they need. I found this to be true for other situations as well.

[Sirena]

Just a couple of thoughts: 1) Do you have a case manager with your insurance or is there a special needs coordinator? You may find them helpful in advocating for appropriate care--but remember, they still work for the insurance and will not necessarily have your child's best interest all the time. 2) If there is some medicine that they want to give him that is not appropriate for his particular condition or previous bad reaction, then you might find dropping the term "contraindicated" into your conversation with the doctor such as "Hmm, I thought Risperadal is contraindicated given his previous reaction to it." 3) Is he on or has he been given any anti-inflammatories? Do they help him? If not, you might insist that they try one prior to trying any anti-psychotics. I still can't believe the difference it makes for my kiddo. 4) You might also ask the treating physician point blank "How many PANS patients have you personally treated?"

 

Also, there are state based advocacy groups for kids with special needs. I have found them to be extremely knowledgeable and great resources. You might want to find them and make a call to a family advocate. They can be helpful in connecting you to resources and helping to know your child's rights and how to advocate for them. They may also know about alternative settings or the possibility of home healthcare to help keep your child safe but at home...

 

Wishing you the best,

 

Sirena

 

[tj21]

I'm so sorry. We had a 12-day psych. hospitalization for ds15 when he was 12. Then we had to place him in a thx residential center in Utah for 2 yrs. Unfortunately this was all before we had our PANS dx (SO glad you already have that going), so I'll just speak about our experience at hospital, and what is working now for us. BTW, we were not accepted at Rogers Memorial b/c ds15 has a developmental disability.

 

 

X Depakote is the go-to for many in-patient facilities, which basically sedates the patient. Didn't help us long-term at all but was fine enough to give us some breathing room to figure out what to do next.

X Celexa didn't help w/anxiety at all.

X We'd previously tried Zoloft, Seroquel, Topamax (helped but it dulls cognition), Lithium, Risperdal, and many other meds., unsuccessfully.

 

 

His current cocktail along w/a bazillion PANS supplements and Augmentin that is working very well:

X Trileptal (anti-seizure med but helps mood stabilization, way less side effects than the antipsychotics)

X Anafranil (old school tricyclic antidepressent) is helping w/anxiety and OCD.

X Risperdal-M (rapid melt) PRN if things get really bad. It basically knocks him out.

 

 

I wish the best for you. Sorry I can't speak to the 23andMe, though we did all the MTHFR testing as well thru another lab.

Edited June 19, 2015 by tj21

[nicklemama]

I am so sorry you've reached this point. My son has similar snps. Before we knew about PANS, we tried Celexa and it was a disaster. He was then placed on lamictal. It tamped down the anger,irritability and rage. I recommend asking him to be placed on lamictal. It takes many weeks to slowly titer up lamictal because it has an adverse reaction when you go too fast. Lamictal is a seizure med that has anti anxiety properties and its frequently used in the bipolar. You could use risperdol tpn until you get where you need to be on lamictal.

 

My son has Lyme, too.

[putting together the piece]

Thank you to everyone who has responded I appreciate each and everyone of your suggestions and I am very sorry I haven't had the time to enter a response to each one but I have been trying to work, run back and forth to the hospital, all while feilding about a hundred phone calls, and constantly researching. I know you understand.

My son has been very cooperative and calm at the hospital so the staff think its time for him to come home. I rather doubt he has been magically cured of all that erratic behavior just by a brief time out in a different envirnment. I fully expect the behaviors to resurface once he is home. That being said this has given me time to do some research and run his genetic information thru Prometheus which at least gives me a idea on whether or not some various psych drugs will work for him or create an even more toxic load. I hope I am wrong and he can maintain his composure in varied environments but just as he does well in school and then falls apart the minute he gets in the door I fear we are in for a difficult time.

[tj21]

Glad to hear @nicklemama 's experience w/Lamictal, in same class as Trileptal and Topamax. We were going to go to Lamictal if Trileptal didn't work for ds15. Gradual increase is needed with most of these meds, but unlike the SSRIs and antispychotics needing to be uber-low doses (per Dr. Swedo), the anti-seizure meds can be dosed higher, at least w/our PANS child.

[pr40]

"I fully expect the behaviors to resurface once he is home."

After reading his case history, I too belive this to be the case. BUT you do have something to work with.

He seems to know how to control himself when he has to -- you could work on making that a habit. CBT might help in this case.

If it were my children, I would use the possibility of going back to the hospital as a stick.

I would also stay away from any psych drugs for as long as possible.

Edited June 19, 2015 by pr40

[MomWithOCDSon]

Another "yes" vote for Lamictal here, as well. Very effective. And now it is available in an XR version. On top of being an anti-seizure and mood stabilizer, it is also thought to be a glutamate modulator, which many suspect is directly tied to psychological behaviors sets of many types.

[puppydog]

 

Edited June 21, 2015 by puppydog

[KKGmom]

Hi there,

 

I have a 13 year old who has both PANDAs and Lyme and we have had many times when we thought we would need to hospitalize him (and probably should have). I wanted to give you the name of a doctor who has helped us a lot - TriLife Health in Fort Collins Colorado (Roger Billica). He diagnosed the Lyme and babesia last Fall and treated him this Spring with IV colloidal silver and other supplements (one for biofilm) as well as chlorystiramine. He still has a long way to go but it is the first time in years we see consistent progress and almost no aggression. He is well-versed in genetic testing and just an amazing functional medicine doc and great person. Feel free to contact me if you want to learn more. My son has been sick since birth but has PANDAs side age 7 (diagnosed at 9). Take care and please contact me if I can help.

[Ladymavs]

My ds10 has been hospitalized during this most recent horrific flare. He and we are no longer safe with him home. He has PANS and Lyme. The admission was yesterday and the hospital is giving him his antibiotics and his probiotics but in order to keep him the hospital 's doctor just informed me that I must agree to psych meds or insurance would not cover his stay. The doctor is suggesting Seroqeul(sp?) or Risperadal. We tried Risperadal a long time ago and he only got worse. So I do not want to go the anti-psychotic route.

I had 23andme done for my son his snps are as follows:

MTR A2756G ++

SHMT1 C1420T ++

 

VDR BMS + -

VDR taq + -

MTRR K350A + -

BHMT -02 + -

BMHT -04 + -

BMHT -08 + -

CBS C699T + -

 

I told the doctor I would research and give him my answer tomorrow. Would SSRI's be a problem with these snp's? Does anyone know? My son seems to be violent, irratable, angry, hyper sexual and very inappropiate and then he flips like a light switch and is almost baseline for a few momoments and then flips back to crazy. He is more stable in the hospital which is probably the effect of adrenaline pumping thru his system as he is afraid there. I don't know if that helps or not.

Any insight would be much appreciated.

Thank you.

This is very fresh with our family as our PANS son (14) was recently admitted to inpatient for a few days after I felt we had done all we could to help ease his anxiety over scrupulosity OCD thoughts and nothing was working. We actually spent 8 hours in the ER before being taken over to adol. inpatient. It was a tough call, but I knew that they would be able to get him to baseline and going home was not going to get us anywhere. They did start him on a tiny dose of risperdal (.25 x twice daily). This has obviously not stopped the thoughts...but the reactions are much less intense. Ours was private pay so we did not have insurance held over our heads...but I agree that this is not a tactic of integrity. I hope that your son can get what he needs to get back on track. Our next step is starting back the CBT. Good luck!