CHILD SERVICES & School Psychologist

[T_Anna]

DH and I had a meeting with DS's HS this morning. It was called by the school and it included the Principal, Assistant Principal and school psychologist.

 

Background:

This is a private school

I serve as the PTA president

DS has not set foot in the school since mid. January when the flare hit and he is still registered (as are two sibs).

We have just started getting paperwork in order for HB teaching

 

The principal opened, that the school wanted to make sure that they were being responsible and fulfilling their obligations to us, to DS and to the State.

He passed it to the psychologist to elaborate. The psychologist said that although he has only see DS twice for an hour each time, he sees he is worse (not sure compared to what), that DS only responded once to his emails and that was to say "No, please do not bring so and so to visit." The psychologist said that he consulted with Child Services to see if a child is home sick and if the school feels that he is not receiving complete treatment, and that the medical treatment alone is not enough, then they are obligated to make sure we add psychiatry to our treatment. He knows that we hope that the medical treatment alone will do its magic, but that DS is practically a shut in and it does not seem feasible that he will be able to cope and function even when he feels better.

 

I was shocked. I told them that child services has taken kids like DS away from there parents for Munchausen by Proxy. DH chimed is about BCH and the case there. I said that I did not appreciate the words "hope" and "magic" being used in describing my sons medical care. I told them about the Rhode Island Conference and how difficult it is to treat a child in a flare. I quoted Dr. Storch and his comments regarding teens and CBT. I empathized, I said I understand how crazy it is to think this is a real illness that only presents with OCD. That there are no hospitals treating this.

 

That's when the principal chimed in that there is a specialist they hear of at Yale that treats PANDAS. Background, the Board president's grandson has PANDAS (mostly tics) and was treated by Dr.Leckman. Shouldn't I try to talk to that doctor.

 

I totally lost my composure and started to cry. I said that MANY of the severe cases of PANDAS present as shut-ins. These are children afraid to leave their bed, the kitchen, their room, these are alos children who get better.

 

The psychologist said: "I don't think DS is part of his treatment." I said, how can you say that? He takes 25 pills a day, swallowing each one. His response, well conciously he is, but not subcon. I said it doesn't matter, if the treatment works, he will get better in-spite of himself. When he was drowing in OCD, but still at school, he worked his butt off in CBT 3-4 times a week. The issues just moved somewhere else and the whole time he was getting sicker. I reminded him that our therapist, his buddy, was overconfident in her own abilities and was telling me that 10 days of antibiotics is enough, that it stays in your system a week.

 

I said what do you envision? Whom do you envision us adding to the team to help DS?

 

I am so upset. These are people I know personally and now I think I need a child advocate (next thread).

 

They back peddled and the principal said "we come here humbled, we know you are in the trenches, we just want to help." But I don't want to be naive and then have a psychologist who calls CSC beacuse he thinks he's helping!!

 

Btw, this is the psychologist who actually read Saving Sammy!

 

What the heck!

T.Anna

Edited December 11, 2013 by t_anna

[jferinga]

We read a a book called Saving Sammy early on. We then followed up and read her second book.

 

There are so many thigns when dealing with a school. I would speak very specifically about what is going on and avoid talking about experimental treatments. They are mandated reporters and if they believe or suspect that needs are not being met they are suppose to call and make a report or face the possibility of losing their professional credentials.

 

With that said, PANDAS is not a "recognized" disorder or disabilit. It is not in the DSM IV or V therefore to many practicioners it does not exist.

 

I would go to pandasnetwork.org and look for a doctor on there. If you can seek participation in a clinical trial. Pm me and I can give you some numbers.

[PowPow]

This is horrible. I am so sad for your family.

i am confused, did they call cps? Don't you have a new direction/doc lined up in a few weeks? maybe that can help legitimize the path you are taking and buy some time.

Glad you handled it so well.

[JoyBop]

I'm beyond lost here. You have always said how supportive the school is and his the psychologist even comes out to your house to speak with DS. Where are they going with this? I couldn't quite tell from your post.

 

It does sound as though they are trying to do "the right thing" in some way. Who are they to say what that right thing is!? I hope you have a great doctor behind you that is willing to write a strong letter that DS is under professional care and all is being done medically and otherwise to help in every way.

 

I don't think it matters if PANDAs is on the DSM V or not, there are kids in this world who have strange and horrible illnesses that can't be diagnosed for lack of knowledge in the medical world. There are all sorts of cancers and auto immune diseases that have no treatments or cures. No one can deny they are ill. No one can demand that they function perfectly and attend school when they are sick. Your child's is suffering from severe OCD regardless of the cause (which we all know is auto immune mediated) and that is a real diagnosis that is in the dSM V. Given the fact that someone on the team actually had a relative with PANDAS it shocks me all the more that this is happening.

 

You are constantly searching for treatment and leaving no stone unturned to do whatever you can to help your child. This does sound like a case for Beth Maloney. If you email her, I'm sure she would respond.

 

Have you been paying since last Jan for school? Have they been providing home tutors?

 

T. Anna I'm so sorry to hear all of this. Stay strong!!

[T_Anna]

Clarification:

He called CPS as a consult on a "hypothetical" case.

 

Yes, the school has called, sent gifts, etc. encouraged kids to call/email/text. This was a new approach.

 

DH and I have analyzed the meeting. We think that maybe it was meant as a push so that we add a psychologist. When I countered the whole mention of CPS it seemed like they hadn't "though it through" and were clueless.

 

Even if it was meant in the kindest way, I feel too uneasy that they could really put a well meant call to CPS and we will be in real trouble.

 

Thanks for all the Beth Maloney recommendations. I emailed her and we will talk tomorrow, she was appalled.

 

I'm in shock, I never liked this psychologist (the woman is much more of a liaison/friend).

 

I keep running over the conversation and wondering why anyone would bring up CPS without meaning to use it as a threat.

 

Yes, PowPow, we have that other appointment, and that does make them feel better, but they still cannot imagine that there isn't a more "accepted" way to handle this illness.

 

They ended the meeting with the psychologist asking if we would allow him to talk to DS's treating doctors. I said I'm not sure, but I will think about it. He said he just wanted to be more informed, I said I'd send him information. He said "it's one thing to hear from you, the parents, that this needs to be treated mainly medically, but it would be better to hear it from a doctor."

 

Ughhhh!

T.Anna

[T_Anna]

Tuition: yes, for all three. However it's reduced so I didn't want to argue about reducing it by a third.

 

T.Anna

[qannie47]

Oh T. Anna, I am so sorry....If you accept prayers...you and yours will be in mine....

[JoyBop]

I was asking about tuition to see if you were still paying while he was out of school. I want implying you should ask for a discount by any means. I think Beth Maloney will give you tremendous support. I am sick to my stomach over this situation and I truly hope that the school does not follow through with their threat. I wouldn't give them any medical information other than a doctors summary and letter that your son is being treated by a doctor and getting the best care possible. Perhaps a letter stating how harmful an institution would be and that the best placement for your child is with his family.

[nicklemama]

As much as hate to say it, it's time for you to consider retaining legal counsel. Schools are mandated reporters. You do not want to find yourself with a legal problem and not be prepared. Give them Beth's new book Childhood Interrupted. It outlines steps and choices of treatment. They are making their first move and doing you a favor ( I know its hard for you to see it that way) by playing their first hand and talking to you as a courtesy. They did not have to do it.

[PowPow]

excellent advice, nickel mama.

even though everyone seems friendly and "on your side", their professional careers could be on the line, as they see it.I'm very concerned this whole situation could implode, t.anna.

[T_Anna]

Nicklemama & PowPow, that's what freaked me out.

 

Hoping Beth Maloney has some good strategies about the most aggressive way to prepare.

 

Thanks for all the support!!

T.Anna

[lfran]

I second (third) all the advice to line up legal counsel now, just in case. If Beth can't be your attorney, I would definitely put someone else on retainer.

 

Also, what are your options regarding inpatient treatment at a place like Rogers Memorial in Wisconsin, or hopefully someplace closer?

 

And...since his main OCD is that he won't leave the bathroom, what happens when another family member needs to use the bathroom? Do you have other facilities? If so, and they suddenly became inoperable (because you removed the plug or some other interference), would he get himself out of the bathroom so his younger siblings or parents don't have to go to the neighbors? Would that be a way to start to break the grip that particular OCD has on him (with his therapist's agreement to the plan, of course). Or would it be more likely to backfire?

 

So very sorry this is happening. And with your middle child ill with strep, too. Hugs and prayers.

[T_Anna]

Thanks Ifran.

 

I was going to call a local child advocate/attorney, but figured I'd wait and see if there was one more familiar with PANDAS first.

 

I'm not interested in Rogers. I have heard a number of stories that kids get more functional short term, but then relapse because the AE wasn't dealt with medically. DS is really in a good place besides the bathroom and yes, we have more thank one (Dr.T's first question when this started). We also live in an apartment building so there is a bathroom in the basement for real emergencies, not to mention our next door neighbors who we are close with. DS is safe and no longer talks about death, not violent, etc. He calls his friends and chats on the phone. He is even wearing an entirely clean outfit (down to the underwear) : ). I see progress, I think that DS is too therapy/treatment resistant to get much bang for my buck right now. I'd rather save my money for the IVIGs and integrative doctor and maybe a trip to Duke.

 

T.Anna

[dcmom]

TAnna

 

I completely agree that pandas is medical- BUT I think a psychologist is necessary for many reasons. First- helps to outline to the school exactly what is going on, what is needed. I have found if I go to the school armed with letters from both a neuro and a psych- they don't say a peep. Second, many pandas kids need or greatly benefit from therapy to help them let go of their OCD as they are healing. And lastly as a support for the family.

[T_Anna]

This has veered from topic a little. I don't want to debate whether I need to add a psychologist. I do. We thought that this same psychologist was going to help us (he had offered), but now it seems something has changed.

 

I was freaked by the idea that the school psychologist was going to weigh in on my son's treatment protocol.

 

or worse, that someone will show up at my door to take my son.

 

T.Anna

Edited December 12, 2013 by t_anna