Pervasive Refusal Syndrome?

[LMV]

We had an appointment for our four year old foster daughter with the child psychiatrist today. He raised the issue of Pervasive Refusal Syndrome but agreed that it didn't completely fit for various reasons. I'm a physician (but neither a pediatrician or psychiatrist) so I have some basic understanding of PRS. I also did some research two years ago when one of our other foster daughter's therapists told us she was at high risk for PRS---fortunately we finally found appropriate treatment for her PTSD and she is doing very well now. Most of what I read two years ago was pretty grim so if anyone has any experiences with this or any links to information that would really help us. At the moment we're continuing to work on attachment/bonding work and we go back to see this psychiatrist in another two weeks for another evaluation (and possibly a trial of antidepressants which we (and to be fair the child psychiatrist) have some concerns about because of her young age).

 

Thank you for anything anyone has to offer.

[scrapbookbuzz]

I don't know anything about PRS but I do know that any special needs issues can be challenging. Have you tried natural remedies for depression like dark chocolate, helping others, mint tea, chamomile tea, etc?

Have you tried drastically reducing if not completely cutting out processed foods? Have you tried eliminating toxic cleaners from your household and switching to effective natural cleaners? SO many things can

play into our children's executive functioning, it's best to look at all the options. Sounds like this is a thoughtful psychiatrist you're seeing.

[LMV]

I don't know anything about PRS but I do know that any special needs issues can be challenging. Have you tried natural remedies for depression like dark chocolate, helping others, mint tea, chamomile tea, etc?

Have you tried drastically reducing if not completely cutting out processed foods? Have you tried eliminating toxic cleaners from your household and switching to effective natural cleaners? SO many things can

play into our children's executive functioning, it's best to look at all the options. Sounds like this is a thoughtful psychiatrist you're seeing.

 

 

We have negligible amounts of processed food in our family diet now.

We have used natural cleaning products for years preceding this child's entry into the family.

[LostSurprise]

I'm sorry, I don't have any additional information for you on PRS.

 

I do have a son with a seizure disorder who fits within a broad diagnosis of PRS. No one's suggested PRS though, just as no one has diagnosed ODD even though he also falls broadly within that.

 

I'm sorry this is a part of your family's life right now. I do know the fear and pain working with a child who won't or can't do basic independence and survival activities. :grouphug: I really hope that this psychiatrist can help you find a treatment which will work with your daughter.

[LMV]

Tam,

 

Thank you for your empathy. I think if the PRS elements are better described by an organic medical problem then it isn't PRS. In our foster daughter's case I really think so much of this is grief (and some reactive depression). She came to us from the only parents she had ever really known. She is only four and I understand that this is difficult for her to process but we are concerned because she is miserable and that is just so hard to see.

[LostSurprise]

I think if the PRS elements are better described by an organic medical problem then it isn't PRS.

 

 

I'm aware. There are many brain conditions where the symptoms are not the condition, just an aspect of something else. That's why I didn't try to give you advice, just sympathize with what we do have in common.

 

Poor little one. I truly hope that the right treatment can be found, and that your daughter will be feel stable and safe. A dear friend of mine adopted a little girl with CP who had been adopted and returned to the system a few times. No matter how good the home, and how much they know you love them, there are always issues in these situations. God bless you for being her person. I know its painful for both of you.

[Ottakee]

What behaviors are you seeing?

 

Have she had a full physical with blood work for thyroid, anemia, blood sugars, etc? Sometimes issues with those things can affect behavior and can affect which meds are best to try (or which ones to avoid).

 

Not sure if it will help buy we give very high grade fish oils---1000mg of EPA per day for brain/behavior issues. You need 1000mg of EPA not just total fish oil. Omega Brites are good if she can swallow a pill.

 

I have 2 here with mood disorders and we started meds with one at 3 so I understand a bit of what you are dealing with.

[LMV]

What behaviors are you seeing?

 

Have she had a full physical with blood work for thyroid, anemia, blood sugars, etc? Sometimes issues with those things can affect behavior and can affect which meds are best to try (or which ones to avoid).

 

Not sure if it will help buy we give very high grade fish oils---1000mg of EPA per day for brain/behavior issues. You need 1000mg of EPA not just total fish oil. Omega Brites are good if she can swallow a pill.

 

I have 2 here with mood disorders and we started meds with one at 3 so I understand a bit of what you are dealing with.

 

 

-This child basically is unable to find joy in almost anything. We've caught a few brief smiles on the rare occasions when she will play with her sister. Her preferred activity is sleeping and she seems to exist behind this blank mask of grief and depression. Functioning is severely impaired because she just has no interest in anything. I think she actually was capable of dressing herself, bathing, brushing her teeth etc but these are things that I have either needed to do or very closely supervise and walk her through step by step since she came to us in February.

-Our pediatrician did do a very targeted but thorough workup. I don't think we're missing something organic. I sadly think this is all grief and depression.

-We did quite reluctantly go along with the psychiatrist's plan to put her on Prozac about three weeks ago. We've seen some minimal improvement with this and I really hope that we will see more once it gets fully into the therapeutic range.

-We're working on theraplay and attachment strategies. The CP/FS caseworker just recommended the UnNanny so I'm reading through some of that and trying to keep an open mind.

 

Thanks for your thoughts and if you have any other thoughts or suggestions they are most welcome.

 

P.S. We would love you to join our foster parent group if you are interested.

[Guest Tricks72]

Hi please check out the links below;

 

https://www.facebook.com/pages/Pervasive-Refusal-Syndrome-Awareness-and-Support/212543642203098?hc_location=timeline

 

http://www.makingcontact.org/  Search for Pervasive Refusal Syndrome you will find families on there currently looking after children with PRS/PAWS or families whose children have recovered from this illness. 

 

Pervasive Refusal Syndrome (PRS) has recently been renamed to Pervasive Arousal Withdrawal Syndrome (PAWS)

 

What is your e-mail address as more recent information or documentation can be passed on that way.

 

Tricks72

[Lecka]

The thing of trying to bond is called "pairing" when it is with autism.

 

If you search "pairing autism" or "pairing ABA" you might find some ideas.

 

It is stuff that really helped with my son, when he did not seem to have a lot of interests or things he enjoyed. 

 

It is just some ideas for bonding beyond the really obvious, maybe it would be helpful. 

[OneStepAtATime]

No suggestions at all but lots of hugs and hope you find something or a combination of somethings that will work, for all of your sakes.  Bless her heart, how really sad.  I had a friend who fostered triplet 3 year old girls years ago that ran into a similar issue but I don't think they had any formal diagnosis at the time (over 10 years ago).  I lost touch with her or I would  pass her info along.  She ended up adopting them, because no one else really wanted to take care of them.  Too much work with 3.  I will try to find her again through some mutual friends and pass along anything that might help.  Much luck to you and your family.

[LMV]

To update (since this thread has resurrected):

-We're not sure if she truly had PRS or if she was just so profoundly depressed that it manifested this way.

-She started a low dose of Fluoxetine (Prozac) in late April and we noticed a few small improvements.  Then she was sick at the end of June.  She had a bloodstream infection, spent five nights in the hospital for IV antibiotics and got a PICC line to do another week plus of IV antibiotics at home.  Somehow she became a new child during the hospitalization as soon as she was getting better.  The child psychiatrist she has been seeing thinks the Prozac just finally kicked in and started to work and it was coincidental that it overlapped with her other illness.  I'm not sure what to think.

-She started a part time kindergarten program in the Fall and seems to be enjoying that.  We've been working on reading along with some additional informal science, and math at home.

-We're still working on attachment in therapy (with theraplay) but she now has a connection to the family and enough attachment that we're optimistic about the future for her. 

-If you also participate in the chat board forum, she is the child who is getting sheep ("real ones that can breathe, eat, and talk") for Christmas.  

[LMV]

The thing of trying to bond is called "pairing" when it is with autism.

 

If you search "pairing autism" or "pairing ABA" you might find some ideas.

 

It is stuff that really helped with my son, when he did not seem to have a lot of interests or things he enjoyed. 

 

It is just some ideas for bonding beyond the really obvious, maybe it would be helpful. 

 

Thanks for this, I have to do some googling and reading. 

[Ottakee]

Glad she is doing better. Could it be that the antibiotics also killed off any strep. PANDAS can cause a lot of behavioral/psych looking issues in kids. I know I had one nephew that became OCD to the MAX when exposed to strep even though he had NO outward, typical signs of strep.

 

It could also be that her illness proved to her that you would be there for her and made her more dependent on you guys?

 

No matter what, I am glad she is doing better.

[LMV]

Glad she is doing better. Could it be that the antibiotics also killed off any strep. PANDAS can cause a lot of behavioral/psych looking issues in kids. I know I had one nephew that became OCD to the MAX when exposed to strep even though he had NO outward, typical signs of strep.

 

It could also be that her illness proved to her that you would be there for her and made her more dependent on you guys?

 

No matter what, I am glad she is doing better.

 

She had actually been tested for strep before (both the rapid and the culture were negative) because her throat was a little red a few months before that and our pediatrician always felt like she never had any history to go with since DD would not talk.  But, yeah, PANDAS can be hard to completely get a handle on. I actually sent throat culture, ASO and  Anti-Dnase B titers on a kid I was medically clearing for inpatient psych in the ED because their symptoms were so abrupt and out of left field (plus I needed labs in the ED and I figured if someone came to the same scenario later and wanted labs they would have to get stuck again and I know that isn't any fun).  I think the child psychiatrist was more surprised someone ordered them in the first place than that they ended up being positive.  

 

I do think that the Prozac probably played some role.  She is still taking it and the child psychiatrist is pushing for doing at least two years of therapy.  At the moment we haven't seen any side effects or problems so I think we will continue with that.  I also think that something else kicked in so you may be right.  I think because she got so sick so fast (she was fine---or at least afebrile when we put her to bed and then woke up with a 104 fever) it was probably very scary for her.  Before this I would have said she was not comforted by anything we tried (although we kept trying). I do wonder if she was just so sick and helpless that she had to accept us on some level and she did literally cling to one of us for the first 48 hours or so until the fever broke.  I had to go to work the day she was admitted so DH had come to stay with her and he truly had to pick her up and hold her so I could leave.  One of the nurses had come in later with more antibiotics and was joking that she was clearly a daddy's girl and he said it was upsetting because he couldn't really say actually she has no connection  to either me or my wife but she's so sick now that she is desperate for anyone.   At any rate one of us did stay with her and let her cling to us until she was better so perhaps that did form some connection for her.  

[Ottakee]

LMV---so glad that you thought to do the strep tests on the kid you have in ED. I know that ED is not really for emergency psych stuff but so nice that you knew enough to at least test for it.

 

With your kiddo it might be that she honestly hit "rock bottom" at least in her world and you and dh were there for her to cling to and you didn't abandon her. Maybe like with an alcoholic/drug addict the healing came after the terrible illness. Kids with attachment issues seem to try hard to "never need anyone" as it makes them vulnerable as those that should be the ones caring for them leave them or hurt them instead.

[LMV]

LMV---so glad that you thought to do the strep tests on the kid you have in ED. I know that ED is not really for emergency psych stuff but so nice that you knew enough to at least test for it.

 

With your kiddo it might be that she honestly hit "rock bottom" at least in her world and you and dh were there for her to cling to and you didn't abandon her. Maybe like with an alcoholic/drug addict the healing came after the terrible illness. Kids with attachment issues seem to try hard to "never need anyone" as it makes them vulnerable as those that should be the ones caring for them leave them or hurt them instead.

I'll be honest I am a different physician because we have done therapeutic foster care.  A lot of what I know about PTSD, RAD, Eating Disorders, ADHD, Pediatric Depression etc is because I read a lot as a concerned mom.  Now admittedly because I was a mom who was also a physician I was able to read more medical sources and understand and my EM training has given me a good handle on ruling out organic illness quickly etc. but I think that I probably do have a much better handle on some of the psych stuff than most EM people. 

 

The thing is I really think she had a pretty good first four years of life and attached to her "parents" (ironically so did her older sister just with different parents).  Her sister had just turned four when their parents died in the accident.  She was born by an emergency cesarean prematurely and survived.  I get the impression that their biological parents were quite different than their foster parents and I think that their biological parents perspectives, values, and approaches seem much more similar with where DH and I are on the spectrum than what we know of the perspectives, values, and approaches of the foster parents.  The foster parents did not like her older sister [i suspect largely because she was still desperately missing their biological parents, and her grandmother and her grandfather and didn't want to immediately call them mom and dad.  Her lung disease which got much worse over the period she lived with them also became a big inconvenience/burden to them.  How much of that had to do with their smoking (i.e.. is she much better her with us because she is in a smoke free environment or is it just that things are better for other reasons?) is unclear.] but really seemed to adore her.  They would have adopted her if they could have without taking her sister and eventually fled with her in an effort to keep her.  She was almost 4.5 years old when that happened.  So until then from her standpoint I think life was pretty good.  She was young enough that I don't think she grasped the tension between her parents and her sister.  Her sister was always loving and caring with her.  I believe that when the foster parents took her away she did miss her sister (she has now started to talk about some of that) but she had her parents and it was kind of ok but I'm sure it was a very stressful time and I think that money was a bit limited and things were probably quite insecure and she probably picked up on a little of that.  Then her foster dad got arrested for DUI and the family was located.  She came to live with us which was initially horrible for her.  She wasn't really old enough to understand why she would never see the only parents she had known again and while I do think having her sister back was better than the alternative it wasn't really enough.  There were many times during this period when we really wondered if she would ever connect to us.

 

In contrast, I think her sister was so unhappy at their foster home (and really felt like they didn't like her much) that I think she was open to liking it in our house.  I also think that our house and our family were familiar in parenting styles and values. As an added bonus we had horses and we were willing to help her reconnect with her maternal grandfather.  She was also older and we could talk through things.  We got her into grief counseling, helped her process and accept (but not be happy about because I can't imagine a scenario where that would be the case) her parents death.  She came to see that our family could be her second chance and if she couldn't have her parents she wanted that (and she believes that her parents would want this for her as well given the circumstances).  At this point she asked if she could consider us her second parents and if she could call us mom and dad.  We agreed.  She really is a caring child and shortly after that she wondered if it might hurt her grandfather (her biological mom's dad) to hear her call us that and asked if it would be ok if she didn't do it much if he was visiting.  What she didn't know is that we had discussed some of this with her grandfather as it was playing out and he had said that the he was still raw over his daughter's death but that he knew that if his daughter was watching down from heaven she would be comforted to see her daughter loved and cherished in our family so he supposed he should try to remember that.  I think he talked to her about that because there was a period where he seemed to make a point to refer to me and DH to her as your parents. He still does it now when it fits but it isn't pointedly so.  

 

 As we start working towards adoption we want to believe that our five year old will eventually come to a similar perspective.  I am choosing to believe that her foster parents who she called mom and dad loved enough that they would want her happy and adjusted in a new family since there is no way that CP/FS will ever let her go back there (and at this point I think going back there might be almost as traumatic as coming here was).  They say that kids who attach to someone have a much better chance of attaching a second time if circumstances change so we're banking on that.  She (completely of her own accord) calls us mommy and daddy now but I'm not sure how much of that is just imitation (everyone else does) and how much is intentional.  

[Ottakee]

Hopefully you can help educate other ED doctors as well on psych issues. I have learned a great deal through foster/adoption and can be a strong advocate and pick up on things that many doctors don't see, etc. I should have an honorary medical degree by now but they don't give them out :-)

 

So hard with what these kiddos have gone through. Likely her early behavior was grieving of the only family he ever knew. Glad you could get her back with her sister.

[LMV]

Thanks, Ottakee!  

 

I think (or maybe I just hope) most decent EM folks do try to listen to parents and trust that sometimes parents just know that this isn't normal for their kid (and this is harder for us because we usually have never seen the kid before).  We probably all have a story of the kid we tapped even though the kid really didn't look that bad because the mom was convinced there was something wrong and then the LP was positive.  

 

I joined the rest of our family at church tonight for the Christmas Eve Service but  I came directly from the hospital after working a long ED shift.  She saw me first when I walked in and she actually ran across the narthex of our church.  It's always nice after a rough ED shift to see our kids and I guess the novelty of her interacting with us still hasn't evaporated.  She is fast asleep now with her stuffed sheep.  I think she will be thrilled tomorrow when she meets their animate cousin.  Merry Christmas to you and your family!