NEW DX... need feedback

[jellibeans]

pervasive developmental disorder

I am wondering if any one has had any experience with this disorder. My dd16 has recently been admitted to the P hospital. She asked to be taken a week ago and gets out today. She has been doing good in the last year... . well as good as it gets sometimes but better. One overdose in Dec 2013 compared to several the year before. I was feeling hopeful and at times even allowed myself the luxury of thinking of her future and college etc. Last Saturday she asked to be taken to the hospital... . she felt suicidal and wanted to go... . this is after a few weeks of smoking pot in her room, lying, stealing money and on and on... . the final last straw was she found my profile here and had a complete meltdown. Within a few days she was just beside herself.

So I took her to the hospital and I got this new DX of PDD... . I informed her P of this new DX and he called to tell me that that doc was all wrong and that the hospital was only to stabilizer her and that once she got out he "would fix what ever they did" not to worry... . what they did was change her meds... . increased her celexa to 40mg... . she is still on Lamictal 200mg... . took her off adderall and put her on strattera... . Anyone on strattera? My dd's P says that this drugs does not have a very good success rate and he doesn't think she should stay on it. So we begin the dance of changing meds and changing dx... . It has been well over a year since she has been in the P hospital and I forgot how damaging they can be... . I feel we are starting all over now... . I do not like this fast food drive thru approach and that is unfortunately what I feel I got and have got in the past. On top of it all the hospital doc went ahead and told my dd this new dx and she called me crying. I had asked that he not tell her of this DX... . that she was pretty low right now and it served no purpose to tell her but in little than an hour later he went ahead and told her.

Her P she sees regularly is new but she has sat with him several times over the last couple of months and talked freely and at length. He is well known in my city and has a very good reputation so I do have faith in him. When I told dd's T the new DX she was surprised and really didn't have much to say. I get the impression neither one agrees with this DX.

I am not sure most of you will know who I am but I am hoping to get some feedback. Because my dd found me I have not been able to post for the last two weeks. At a time I really needed this site I was not able to post even though my dd was in the hospital and had no access to a computer. I really have been through a lot in the last week and could use some feedback on my situation. Thanks in advance for your support.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[lever.]

Hello,

I think I may know who you are but I'm not entirely sure!

I am sorry that your daughter found you here, it is a good place to come for support and it must be horrible to feel that it isn't safe and private.

I too was worried at one point that my daughter had been reading my posts and I was just concerned that she might be upset and would lose trust in me.

It sounds like the hospital have messed up and that her psychiatrist knows her best. I am sure the psychiatrist will sort things out, especially the medication.

From the point of view of communicating with her and managing things I don't think it matters so much, the tools on here will help whether she has developmental issues or not.

However I am sorry she was so upset by what the hospital doctor told her about his new diagnosis. Can you tell us more about what he actually said.

I hope trust between you hasn't broken down too much from her finding your profile here. Have you been able to talk to her about it? How did that go?

[jellibeans]

lever she is on her way home from the hospital this morning... . I have not had a chance to talk with her regarding invading my privacy but I will. Precaustions have been put in place and yes another lock added to my office although I don't think she was able to access my computer I want to limit her access because I want to be able to have sharp items in there without worrying she is going to take them.

My dd had been doing so well for so long with only a few set backs this year so I am really left wondering what to do going forward.

PDD... . My dd was crying too hard to really here what the doc was saying... . all she heard was aspergers and she lost it and told the doc to shut up over and over again... . this is her side of the story of course. It is my understanding the PDD is in the same spectrum as autism and aspergers.

[lever.]

Jellibeans, have you ever seen any signs of aspergers like features yourself? I have sometimes wondered about this with DD. The inability to put oneself in someone else,s shoes and the difficulties with social inappropriateness are common to both disorders but I think the underlying reasons may be different.

Day to day regarding the way you respond and try to help I don't think it would make much difference.

When my DD was looking at her sister's and my private stuff on the internet she didn't think she had done anything wrong-it was more that she felt that I had broken her trust by posting about her (that's what I meant by her trust breaking down).

Particularly between DD and her sister it has caused a whole lot of trouble.

I was only posting on here for help- in her sister's case she managed to trawl through her e-mail.

I hope things are going okay with her at home and that her psychiatrist can talk to her and explain things in a way that she finds acceptable.

[qcarolr]

jellibeans

Did your DD have problems with social and communication issues as a young child? Asperger's most often shows up beginning in preschool years, and definitely as a school age child. I wonder what criteria the hospital doc used to come to his conclusion?

qcr

[jellibeans]

my dd did struggle a lot as a young child. We could not understand her well and she went to speech therapy for a few years. We also took her to a private tutor for dyslexia but testing never showed she had dyslexia... the tutoring helped... . she really had a language disorder an spoke like a caveperson for some time... . even going into kindergarden she didn't speak in full sentence. She often dropped the ending to words... . instead of going it was I go... . she has always struggled socially with friends and has never really had a friendship last.

The doc at the hospital asked a lot about her childhood... . she was delayed in walking and talking... . I had two Neuropsych done... . one at 2 and one before high school... . no one saw this issue and I filled out a very detail description of her through the ages and how she was. She has always been a very sensitive child... . easily frustrated... . moody. Sensitive to clothing and how her socks felt... . hair had to be just right... . picky eater that got more food in her hair than her mouth. I am not sure what to make of this new DX but monday I go to her T and P and hopefully get some help.

My dd is home and seems to be good. She is resting and taking it easy. Tomorrow she is suppose to go volunteer at the animal shelter... . I think that might be good for her. so far so good... . she seems very calm and relaxed bu t could be the meds.

[HealingSpirit]

WOW!  Jellibeans,

I'm so sorry to hear you're going through all this.  I've never even heard of PDD, but I just looked it up.  (My DH has Aspergers, so now I understand more.)  I'm glad your DD was willing to go to the hospital for help and I'm glad to see you've managed to come back here.  How awful your DD found you here!  That is my biggest nightmare, which was why I changed my username shortly after I started posting here. I hope at some point you're able to clear that up with your DD somehow.  Yikes!

I wonder if letting her know you don't care what her dx is would help?  I'm guessing you just want her to have the right kind of help so she can live a happy, healthy life.  If they need to put a name on her list challenges, so what?  If it gets her the right kind of help, then it's a blessing in disguise.  We didn't know my DH has both ADD and Aspergers until he was well into his 50s.  For him (and me) it was a relief to finally know WHY we have all the challenges we have.  I used to say he was "emotionally handicapped" but I didn't know why.

So, after the initial grieving process of learning what DD has, I hope you (and she) can come to terms with it.  The good news is your DD is still young, and now that you know what you're dealing with, you can get appropriate help.  As I tell my DD, it's not an excuse, but it IS an explanation for WHY she struggles in the areas she does.  AND, I hope it can be validating for you that YOU didn't do anything wrong to cause this.

I hope things settle into a routine and that you have some peace for a while. Hang in there!

[theplotthickens]

I am glad to see you back!  Just to clarify, did they add PDD to the mix and keep the other diagnoses? Autism and ADHD can be hard to differentiate, as they are both developmental diagnoses.  I am going to guess that the hospital diagnosis is not as accurate as the neuro-psychs  and assessments you have had done previously.  My dd has ADHD and she is about 3 years behind her peers emotionally, academically and socially.  She did meet her milestones, but had behavior issues from 18 months on.

I have disagreed with the med changes at times, but sometimes a new set of eyes in the hospital is a good thing.  I have always given it time, unless the change is harmful in some way.  The bump on Celexa makes sense, as does switching from a stimulant that may have been contributing to irritability.  If Straterra doesn't seem to be helping, and she is doing better without the Adderall, guanfacine is another good one to try.  It is a non-stimulant (actually a blood pressure med!), and also helps quell the rages.  

My vote on the meds is to give this new mix a try, unless there is harm.  If she is calmer, perhaps is it because the Adderall has been discontinued, as well as being tired out from the whole  hospital experience?  

My thoughts and prayers are with you, and I am glad that she is calm right now.  For today you have peace and can rest a bit.  It always takes me weeks to recover from a huge scare like that, and I feel like I am in a fog for a bit.  The fog will lift, eventually.   I hope you are able to take good care of yourself and take mental health breaks for yourself!

[jellibeans]

thank you healingspirit and theplotthickens

I value your opinions on this... . I am just trying to take it all in right now. As the day wore on she became rather upset when she asked to go to the store to get hair dye. I told her that she could go but her sister was going to go with her because I needed her to pick up new meds from the pharmacy. DD was not wearing appropriate clothes and was still wearing her hospital bracelets... . I told her to change and to cut off the bracelets... . she came down stairs with a sweater on and went out the door. When she got in the car she took off her sweater and my older daughter could see she was still wearing the bracelets and the clothes that were not appropriate so she got out of car and came inside... . which started a meltdown of crying and whinning for a hour or so. I told her she could try to go after dinner if she was calmer and less emotional and she finally agreed to that after badgering me for sometime.

In the meantime my older daughter comes home with all the new meds and says the pharmacist wanted to talk with me so I called to discuss new meds. I was in the middle of trying to fill her 7 day container with the new meds when my husband comes in and starts asking if I am just going to leave these meds out on the counter. I tell him once and in fact I tell him 5 times that I am working on it and that I will put them in the safe when I am done. He doesn't like that response and starts slamming doors and having his meltdown. At this point my stomach is in knots and I remove my plate from the dinner table because I feel ill... . my husband comes in from BBQ and is angry that I am not eating with him and my older daughter so he goes up to bed in yet another meltdown. My older daughter eats by herself at the table. Dd takes her plate up to her room and eats there as usual. An hour later my older daughter calls me because dd is throwing up. Says the meds make her sick.

I hope tomorrow is better because I am losing it here... . dd seems better and her friend is coming later to sleepover because they volunteer early in the morning at the animal shelter. I hope she can manage that she seems very emotional and I can't help feel that I made a mistake letting them change her meds. They also added another med called viserall (sp) I feel my dd is over medicated right now and I am disappointed that I allowed them to change meds. I do not believe that this doctor after talking to me for 20 minutes knows my dd... . I do think the P hospital is good to stablize but that I should have just insisted that her P make that decision. I feel have made a huge error... . and error that will take weeks to repair and I hope there will be no more hospital visit in between.

[theplotthickens]

I can't help feel that I made a mistake letting them change her meds. They also added another med called viserall (sp) I feel my dd is over medicated right now and I am disappointed that I allowed them to change meds. I do not believe that this doctor after talking to me for 20 minutes knows my dd... . I do think the P hospital is good to stablize but that I should have just insisted that her P make that decision. I feel have made a huge error... . and error that will take weeks to repair and I hope there will be no more hospital visit in between.

Can I let you in on a secret?  When your dd is hospitalized and 17, the doctor can change all meds with or without you on board.  WHen they want to try something new, they are going to either steamroll a parent or do it despite parental objections.  So, please reconsider the idea that you are responsible for med changes - you are not!

You are saying that dd is calmer, so I would give these new meds a shot.  If you really feel they are harming her, you can simply discontinue them and restart what she was on before.  However, without giving the new meds at least a month or two to work, there are too many variables to discern whether the new meds helped or not.

I personally prefer discontinuing or adding ONE med at a time. 

Also, you are a nicer mom than me - I have my daughter set up her own meds for the week, and tell me what they are for.  I lock up the bottles, but not the 7-day dosages. 

The inappropriate clothing and bracelets.  My take is that I would hold the line on inappropriate clothing because she is immature and vulnerable.  If my dd had done what yours did, and I felt she was stable enough, I would remove the inappropriate clothing item because that is a natural consequence.  However, not might not be the best time to do that if your dd is not stable and on new meds.  Your boundary could be that you will drive her places when she is dressed in a way that shows dignity and respect for herself - and she knows what this means in your family.

It sounds l like you need to take a break from household responsilities for a while.  Just eating out or ordering a pizza helps me keep my sanity when I am in the fog!  It sounds like you need some peaceful, positive time.  If your family is not in a place to give you that, have you thought of spending time alone, with friends, with extended family?  What do you think of NAMI? 

You will get through this, and remind yourself that you ARE a good mom. However, before you are a wife and mom, you are an individual.  Live your values and continue living your life outside of the family drama.  It is not selfish to take breaks and it is well within your right to insist on maintaining your values regarding appropriate dress. 

Sometimes my dd has trouble letting go from a hospital visit.  She really LIKES the hospital.  Would your dd want to take the bracelets and make some sort of a scrapbook and journal?  I know it sounds wierd, but perhaps writing down her feelings about what brought her there, and writing about the people she met/things she did, etc, would help her.  I think leaving the hospital can trigger mild abandonment issues, at least for my dd. 

Hang in there, mama! 

[jellibeans]

the plotthickens

That is good to know about turning 17... . my dd bday is in a couple of days. I will wait to see her P on Monday and then we can talk med change and see where we are. I do find that dd struggles after getting out of the H... . but then again she was struggling before she sent in. She didn't enjoy her time there and I am sure it will be a long time before she asks to go again. She is up early and out the door to volunteer at the animal shelter today. I hope that will be fun for her. She didn't ask for the viserall for anxiety so she doesn't feel so stressed about going.

Later today I am getting a pedi with my daughters and I like the idea of going out for dinner... . I think it will be a girls day. My H is too stressed and Sundays is his day to be grumpy because he goes back to work tomorrow... . having some distance from him would be helpful for sure.

Thanks for your encouragement...

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[lever.]

I'm glad tou are seeing her own psychiatrist tomorrow.

From what you have posted its possible to see what the hospital doctor was thinking but he does seem to have rushed into things.

The psychiatrist knows her better.

I would just like to echo that you can't hold yourself responsible for the meds-you are acting in good faith on medical advice and as your daughter grows up now medics will not involve you at all in such decisions.

I'm sorry your husband is so stressed. Its all even more difficult when others in the family are grumpy and dis-regulated (speaks the voice of experience).

I echo the advice to make sure you are getting time to yourself as much as possible.

I'm pretty sure I know you now  

[femom]

Jellibeans,  I am sorry that you are having such a hard time.  My daughter also was recently diagnosed with PDD (19 years old) as well as borderline traits, etc, etc.  I actually think that many of the children described on this forum are probably PDD as well given the descriptions of antisocial behaviors, the fact that they do not learn from negative experiences, the anxiety, the difficulty maintaining friendships, etc.  Google high functioning asperger's and BPD and you will see pages and pages of articles.  Given the recent diagnostic changes, I would bet that your daughter falls under the diagnosis of Social Pragmatic Communication Disorder rather than Asperger's which has been folded into the diagnosis of Autism Spectrum Disorders (ASD).  All of these are under the umbrella of pervasive developmental disorders.  It is very possible to have a developmental disorder AND a chemical disorder.  As it was explained to me if your child has always had some type of social, communication, behavior or sensory issue, it is likely that there is PDD.  I was worried about my daughter's reaction to her diagnosis but it actually was reassuring because she realized that her difficulties are the result of how she is made up, not necessarily because of something she has done. I also found it very interesting that because of the PDD, my daughter's doctors recommended against DBT as a treatment option.  Let me know if you would like more info and I can give you  my contact information.

[jellibeans]

thank you femom for your kind words... . can you tell me why they were against DBT therapy? I am just starting to look at PDD and I don't know really what can be done to help this disorder. Any suggestion would be appreciated. Her P doesn't think she has it but tomorrow I can sit with him and discuss.

I have always thought my H had aspergers... . he struggles socially and has only one friend... . I feel he really only has this friend because he is our neighbor and his wife is my best friend so we get together often to bbq and go to movies. Ever since I met him he really has not had friends... . he has been friends with the husbands of my girlfriends... . I have been married for 22 years and we lived together for a few years so I have know him for a long time. He really doesn't seem to care if he even has friends... . I am not sure if he is antisocial but he would rather stay home and he spends a lot of time on his own doing jobs around the house or yardwork. He really just works a lot and has no hobbies at all. I do wonder if he has this disorder... . he has a very high IQ as well.

[femom]

Jellibeans - People with PDD/Asperger's often lack the ability to self reflect and to see how their behavior affect's outcomes in their life.  I think the problem is that people without PDD can learn to see this link and can learn to change their behavior through DBT but for those who have these traits it is much more difficult.

My daughter was "interviewed" to go to McLean's 3East program which is a very structured, intense DBT program so maybe it was just that they thought she would not benefit from that particular program.  Instead, in addition to other things, she worked with a social skills specialist who works with teens who have high functioning Asperger's.  According to her, there is a relatively large group of teenagers, mostly girls, who are not diagnosed until their mid-teen years.

[jellibeans]

femom

how did you find this social skills specialist? Was it at her school? I am wondering if I should get another Neuropsych evaluation done... . what do you think?

[femom]

Jellibeans - She was part of our diagnostic team at McLean's and does a lot of work with this population.  I would suggest another neuropsycological eval.  What are your daughter's executive functioning skills (planning, self monitoring, organizing, etc.) like?  Her non-existent executive functioning coupled with an unusually high verbal IQ led her team to look at the PDD diagnosis.

[jellibeans]

My dd is extremely unorganized... . although she never got a dx of dyslexia she seemed to have many of the signs. She has a mildly impaired range for  memory... . this is what I feel is her biggest trouble in school. low average processing speed... . perceptual reasoning- boreline range. Her writing samples were below average. She can study and study but never really does well on tests... . especailly essay kind... . she does better with multiple choice when she can see the answer. She struggles to keep track of her assignments and often has missing assignments at school. She will always tell me she has no homework when she does... . I can remind her of a test the following day and she will tell me I am wrong... . she will fail the test because she did not study.

I will talk with her P tomorrow and see what kind of testing we should do going forward.

[jellibeans]

UPDATE: After seeing my dd17 P yesterday I do feel better. He feels the doctor at the Hopsital was very wrong and he actually wants me to write a letter of complaint about him to the CEO. Although I can see how someone might come to the conclusion she is PDD ... .there are other things that just don't fit. Her P is weening her of the strattera and we go back next week to dicuss meds again. My dd wants the adderall again. I feel the only reason she wants this is for weight control. She has not been asking for the viserall at all and I feel she is better without it. I feel there were just too many meds.

Today is her birthday and we are having a birthday dinner tonight and she is having a friend sleepover. She seems very good and very stable right now. I am not sure I should get another neuropsych eval... .she is on a 504 already but since it is summer time it might be a good thing to do.

I feel like I am in a bit of a daze... .I don't really know but I just feel kind of numb. There is still a lot of summer leaf to go and I am just plain tired.

[theplotthickens]

I am glad you are feeling better!  Praying that the post-stress fog lifts within a week or so!    If she is going well and is stable, I would really be resistant to adding in Adderall or any other stimulant because it can contribute to irritability and raging.  For weight management, maybe Metformin?  For the AD/HD, how about guanfacine?

I am so glad you got good support from your dd's P!  How validating!

[jellibeans]

Well things continue to go not so good for my dd17... .last night she asked to sleep over a friends but i had a funny feeling about it all... .when searching her on life 360 ap it said she was at her friends but when I tried to call her phone went straight to voice mail... .I decided to drive over to see for myself if her car was there... .it was not so I knocked on the door to see where she was... .I was told she was camping with myself and my husband... .the father of the friend called her daughter to come home and I took my dd home... .I said very little... .she didn't have permission to be out camping or god know what so she knew she was in trouble. so today she spent most of it in bed sick... .not feeling welll. We were going out to a dinner party and my older daughter took her to dinner and watched her for the night. Before we left my husband searched her room and found weed and cigs... .we took them and went out... .my dd texted me several times asking if I had been in her room... .I didn't answer her. My older dd watched her for the night. Tomorrow we will all talk and I feel I really can't trust her... .she is going to start a drug and alcohol program and I am hoping that helps her because right now I am not impressed with her behavior at all. She is grounded but I feel more has to be done and I feel taking her car and phone might be next on my list of things... .I am at a loss to know how to deal with her.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders