When psychiatrist doesn't return calls! -UPDATE

totoro

Mom? What's a difficult child?
I am a little flustered right now. We waited months and numerous phone calls to find this new psychiatrist... This was our last resort the only one in the area we could get into to. Well we saw her about 3 weeks ago or so since then difficult child started Abilify and we have been working with our pediatrician on doseage as well. (New psychiatrist just said start at 2mg go up 5mg as you see fit if she tolerates it)...OK

So I called her Tuesday and left a brief message with Abilify amount and that we did Difficult Child the Triliptal etc. That I would like to have a medication consult & could she call me, she did say at our meeting to call anytime by the way, I heard nothing... I called Wednesday left a message with secretary, I heard nothing, Today, nothing... The secretary said she was there.
Then I called our pediatrician today and only heard back from the nurse practitioner, so pediatrician will call back in the am... ( if it was an emergency our pediatrician would have called) :doctor:

I guess I am wondering if this is common and should I be pissed? Because I am... I am just so sick of our health care system here...

This is after my call to the mental health dept this week when they told me that young children can't be BiPolar (BP), I had to argue with them about the DSM-IV guidlines and explain that they can't be diagnosis'd usually with it but they can indeed "BE BiPolar (BP)" After they realized I new what I was talking about and that difficult child was in the bipolar spectrum... they let me know that they really didn't have any services to offer us!!! The guy was very nice and he was going to look into a social group and some kind of speech therapy but he didn't think they had anything. And they had not been in the public school that difficult child is supossed to go to next year. OK.
So know I am going to call the the school dept again and see if i can get someone to talk to us there... one last resort again.

I guess I am at my wits end with lack of services... no services here. I don't know what we will do if this psychiatrist doesn't work out... I am really scared for difficult child. She is unstable as it is and we are working to get her up to being on a mood stabilizer. I need a stinking psychiatrist!!! We do have an apt April 23 I think a Monday, It is also the date of husband court date!!! So I have to go by myself to psychiatrist. I just don't want to end up going with the girls all stressed out and mad. I just hope I hear from her before the apt.
Are psychiatrist in Chicago, I had her direct phone number and her e-mail!!! I wish we could still use her... :sad:

Sorry to ramble I just don't know what to do everytime I get her moving forward we get some stupid setback, I just want to help the poor thing... today i had to take her to sign some papers and she was shaking and crying and sobbing "I don't want to leave the house, please Mommy don't make me leave, I just want to stay at my home" She was so anxious, I could see the fear in her eyes. But I had no choice. We got the call last minute and I had to meet husband to sign these papers and had no choice! I mean what do I do? I have no stinking help noone to ask what to do except you guys, noone understands... because she "looks fine" ugh.
Thanks
 

SRL

Active Member
Totoro, I'm sorry--I know how frustrating it is when doctors aren't professional in their dealings with patients. Once we had an out of town appointment for difficult child and my husband took off work to go and the doctor didn't show. He'd been at an out of town funeral and told his staff he'd be back Monday and when Monday am rolled around he not only didn't show he didn't call his staff to have them cancel his appointments. They were so embarrassed and so apologetic.

Argghhhh on the county mental health! Do you have any paperwork from the days when they were considering Autism Spectrum Disorders (ASD)? If speech, Occupational Therapist (OT) and support for anxiety is what you're after and they are ignorant I'd be inclined to pull the paperwork out and use it to get what I needed for my child. I hate to play games but if it would accomplish the same end then label be dammed.

I've been there done that with the anxiety and it's heartbreaking when your child is terrified to even be out of the room with you. It's a fine line dance between giving them the security of parent being there/being home and building coping skills. If you can start building coping methods for her in teenie tiny steps to give her successes it may help.

Parting routines--work on finding something beyond the hug and kiss goodbye and assurance that you'll be back. We stumbled upon this one but difficult child has little dogs with loops and our routine became that he would pick out two dogs--one would go on his backpack and the other he would give to me in the morning before school. I would tell difficult child where I'd be going that day and then I'd(literally) take that dog with me all day long in the car, my purse, etc. For some reason it formed a more secure visualization in his young mind than visualizing mom in various spots. At the end of the school day the dogs would reunite and I'd reaffirm where we'd been.

Work to make her secure in being away from you at home first, then out in the yard, then short trips nearby. Electronic gadgets are great for this--I hauled the baby monitor back out and set it up in the basement so difficult child could watch tv or play in the yard and be assured that I would hear him and visa versa at all times (and I responded immediately). I taught him how to call me on my cell phone and always made sure that when I left I would leave him a list of where I was going and show him my cell phone. I'd also have him do a practice call on my way out the driveway when he was very anxious so he knew he could reach me at all times.

I scheduled a weekly date out of the house to keep him going places because he was starting to refuse. The deal was I would choose some place then he could choose some place. At first I made it very quick and easy for my choice (MacDonald's, bookstore cafe) and he often picked ToysRUs to look at toys. As the year went on I broadened my choices to get him into other places. This helped immensely and we still go on a weekly date together, only this time to the bookstore cafe because we both like it.

I usually left him a note of where I was going and what time I'd be back. He was very in tune to written language so this helped in his case.

I had one friend whose house difficult child would go to--she understood the situation and difficult child liked her kids. This was a last resort but it will help if you can find one "safe feeling" alternative for the times like you just had.

There was a year where I rarely left the house without difficult child and he rarely left me except for school. It was so traumatic for him and he downward spiraled so fast and hard on medications that my other children begged us not to go there again. We split up appointments, would do things like meet and swap off difficult child in the hallway and tag team, bring him along with Gameboy and a book bag and we missed a lot of outings. He's still not 100% but he's reached a point where we can usually find options that will work--ie a few summers ago I wanted to attend a Bible Study at a church that wasn't ours and he was anxious about 1) going and 2) attending the daycare. So I worked out an arrangement where he'd bring his bean bag chair, gameboy, juice and snack, and sit in the kitchen next to the room I was in. I was fine with that--it showed huge amounts of flexibility, growth and problem solving.

In difficult child's case the year of total emotional support was necessary while we worked on stability--once he was on the road to being stable then we could start nudging him forward in the anxiety realm plus he started taking steps forward himself.

Hang in there.
 

Wiped Out

Well-Known Member
Staff member
Totoro,
I don't blame you for being upset. Our psychiatrist's office always calls back the same day. Once they didn't and they called the next day apologizing but the psychiatrist had been off. I'm sorry your healthcare system isn't better. Hugs.
 

oceans

New Member
Wow! That is difficult. I would be mad as well if I had to wait so long without a return phone call. Have you ever thought of doing a search for an area to live that would have the best services available, and make a move? I realize that could be a hard thing to do also...but perhaps for the future? In the mean time, you have to work with what you have. Do the schools have services for her? Have you tried networking by word of mouth to find other psychiatrists that might be more considerate and available by phone or email when you need them? Is there a NAMI nearby? Perhaps you could call the closest state NAMI, and ask their advice. It might be a good starting place to learn about new information.

Take some deep breaths! Hopefully a mood stabilizer will be on board soon, and life will be somewhat better.
 

LittleDudesMom

Well-Known Member
Totoro,

With the messages you left, I don't really understand why the psychiatrist wouldn't have called back. I can share with you that my difficult child's psychiatrist, and we live in a pretty large metropolitan area, told me that there are just not enough pediatric psychiatrists to go around. The ones that are, are overbooked. You usually have to wait a couple months for a new patient appointment at all pediatric psychiatrist offices around here.

I certainly hope you hear today - if you don't hear by midmorning, I would call again. Sorry that your daughter is so unstable right now. Hugs.

Sharon
 

timer lady

Queen of Hearts
How frustrating for you, totoro. I do know when our psychiatrist is swamped, he will at least have one of his nurses contact us. It's a system that works for us because I know & trust that his nurses get the point across to psychiatrist.

kt, for a year, barely went out of the house except for school. Even school was iffy. SD tried to bring truancy charges &/or send out someone to "escort" then 8 y/o kt - kind of blew up in their faces.

Like SRL, we've been addressing the anxiety systematically - short outings, leading to longer outings, etc.

I hope today is a better day for you. You sound so very frustrated & there's a great deal going on in your household.

Take care of you. :flower:
 
Totoro, I KNOW how frustrating it is when psychiatrists don't return phone calls!!! :grrr: In my area, pediatric psychiatrists are scarce!!! We have to wait long periods of time to get the help our difficult children need. It is a horrible situation!!!

I'm sorry you're going through this too... Sending cyber hugs. WFEN
 

dreamer

New Member
totoro, I am so sorry. Thats how we ended up traveling to chicago, too. That is how it was local for us for years. Even when ER tried to page local docs, they did not reply, not even to the ER. Then our local agency psychiatrist quit and there was no replacement and they left all the patients hanging for 11 months. Surrounding counties here refused to take any of us in as patients.......it was a nitemare. After they got a new psychiatrist (after 11 moinths) that one saw all the kids once on the caseload, dramatically changed medications on many of those kids, (even on kids who were doing kind of ok) and many of the kids landed in psychiatric hospital..and that psychiatrist resigned after 3 months! The first month she was supposedly on family leave for a family emergency, but she never came back. Worse, at the same time the local psychiatric hospital also lost a bunch of staff and the kids being discharged had no discharge plans at all. There was no psychiatrist for follow up and no group for therapy etc. Thats when we made our jump to chicago doctor........
I hope someone calls you back.
 

DammitJanet

Well-Known Member
I think this is a national nightmare. What kills me is that people who live in fairly large cities go through some of the same problems that those of us in small towns go through.

I do have to say that NC has fairly good childrens mental health. School system isnt so great for kids where I live but other counties are better. We have some really good hospitals in this state. I just cant get to them...lol. If I lived closer to our state capital I would have access to really good health care even as an indigent person.

Maybe you should consider NC...???? Weather is nice. We have nice beaches. Just a thought.
 

oceans

New Member
I agree with Janet. I live in the triangle area of NC. There are good University hospitals and state hospitals. I can stay in network, and pick from several pediatric psychiatrists or go out of network and have a pick from quite a few others. The school system is not great where I am, but they do have a public therapeutic school where difficult child attends right now. We have family advocacy groups and NAMI support. We also have TEACCH which is great for kids with autism. We have an appointment there for an interview on Monday. It is too hot here for me, but I have not had the problems that other discribe from the area where they live.
 

rejectedmom

New Member
I am so sorry you are dealing with so much with so little help. I do know how hard that is. I have no advice except to keep calling and looking for a better P doctor. I'm sending cyber hugs.
(((HUGS))) -rm
 

totoro

Mom? What's a difficult child?
SRL-thank you for the advice. Sometimes in the midst of all of this we forget to open our mind to think up new things... I love the idea of the Doggies, for us I think it could be Kitties... probably 4 of them for all of us, so husband can take one when he goes to Chicago to work. I forget how much anxiety she has at times because she is able to go to school and do so well. But her school environment has gotten better with her medications, it is such a calm, soothing place for her, they knit and sing and bake...such a hippy-dippy little school, but very difficult child appropriate. Not as far as the academics. But we work on that at home.
I will try the note as well, maybe husband can leave her one each week he leaves??? This poor kid gets scared and anxious watching Dora the Explorer and she is just about 6yo!!!
Oceans and Janet- We have actually looked into NC! We are currently looking into Tucson,AZ. We have family, husband parents go back and forth and his brother is there and he could work easier out of Tucson. He owns his Company with his Brother and step-Dad. There are a ton of schools as well as U of A and lots of medical options... they look good on paper??? but at least we would have more options and help. We are thinking of this in the next year. It is just trying to get through this next year!!!Until we can get things together to move!
Thanks everyone... your kind words always make me feel better. Or at least like I won't strangle the poor psychiatrist if she does call!!! :grrr:
I am still waiting for the phone to ring...
 

totoro

Mom? What's a difficult child?
OK so it is 10:30... I called psychiatrist's office again, I said "I have tried to call twice this week and I don't know how to get someone to return my call regarding my daughter's medications" I also stated it was not an emegency but I wanted to discuss increasing them and had not talked to psychiatrist since starting them and she had told me to call her if I had a question...
Secretary told me "Well usually she would increase them at the next visit", I said " Well I have a note here that say's "Try to replace Risperdal with Abilify 2mg- increase to 5mg if needed" and I would like to discuss the if needed part" and let her know that we started it!!!
She did not know what to say... um is this to much to ask??? She was a bit :censored2:, but took my number again. I also said I really don't feel comfortable increasing my childs medications without talking to her doctor's first and documenting these things, and that this is how our other psychiatrist's and our pediatrician liked it to work also.

What the!!! I don't want to play god with my child's medications... why do I have to make the desicions???
 

totoro

Mom? What's a difficult child?
Well no call from psychiatrist.... :nonono: I have been waiting since Tuesday!!! But pediatrician did call back!!! :angel:
She apologized for not returning call yesterday, it was hectic. But did say if it had been an emergency she would have.

So I explained to her everything and apologized to her for making her have to make these medication decisions when we both know it is the psychiatrist's job. She said she felt bad we were in this situation and that sometimes this is the way it is and she has to do what she can to help the kids and the family. We discussed our impending trip... she said it is OK to give both girls the diazapam for the flight, re checked their weights etc. We also discussed increasing difficult child's dose of Abilify to 4mg next week. That will be about 5 weeks to titrate her up to this dose. And wait until visit with psychiatrist in at end of April to discuss Mood Stabilizer. I agreed and thanked her...

At least one person is on board... :thumb:
 

Hound dog

Nana's are Beautiful
We also don't have alot as far as services in our area. But at least we can get a psychiatrist thru mental health. Good thing too as finding one that treats kids is like finding a needle in a haystack.

I just got lucky N landed a good one.

I'm glad at least your pediatrician doctor is on board and keeping in contact. Hope psychiatrist communicates with you soon. When is your next appoint, and how close together are the appoints?

N's psychiatrist is the only one currently on staff at mental health, but if we're doing any medication adjusting she always sees N in a 2-4 wk time frame depending. But I can never get them to call me back either. They are just too busy.

Hugs
 

SRL

Active Member
I know it's hard to think up new things but for us those new strategies became the seeds for building coping strategies for my difficult child to live life in this terrifying world. I guess even beyond for that matter--last fall my aunt was very ill with a terminal disease and I had to leave him overnight for the first time (on the first day of school nonetheless!). I prepped him with a note and taped it to his place at the table. When I was getting ready to leave he brought me one of his dogs. He hadn't done it in well over a year but this time it wasn't for me or him--it was so I could have his dog give my aunt a "snuggle". :)

Simple lists work best.

Working on new strategies was important to me because it kept me from floundering. It's not exactly the most hopeful time of life.

Oh, I wouldn't suggest sending a kitty off on a long trip unless it's her idea (rage city when she decides she wants it and it's half way across the country). Start in small ways--some strategies should be hers while others will be yours. For instance, difficult child was persevating over our goodbye routine at school that year and an hour before school would start in "Mom, be sure you hug and kiss me and tell me good-bye when you leave" over and over again. I could just see the angst rise every time he went through it. So I wrote up a list of the steps in our routine from a few minutes before we left until I pulled back in the driveway from dropping him off being sure to highlight those he was persevating on. When he would start I would pull out the list from my pocket and show him that it was now my responsibility and he didn't have to worry about it anymore. I didn't solve our problem by any means but it did take a little bite out of it and I just kept chipping away.

Have you tried writing social stories? These are often effective with younger children:
http://www.amazon.com/s/ref=nb_ss_gw/104...ries+carol+gray

The other thing I would do is start looking for ways to empower her to take control of her scary situations. If it's noise, arm her with earplugs or a walkman or noise cancelling headphones. If it's the dark rig her up with a remote to turn on the light in her room. If it's being away from you in the house, start carrying walkie talkies, etc. At our house when it was the level of water in the tub I drew on arrows and instructions on the tub wall in permanent marker. The mroe you can make her feel like she has some charge instead of those situations having total control over her, the better. difficult child was a poor responder to medications so these were not only critical, they gave him coping skills to build on that medications can't.
 

totoro

Mom? What's a difficult child?
Thanks SRL-
Yes we have tried alot of different techniques even our Occupational Therapist (OT) works with us at times. She gets "bored" with the social stories...I still print them and go over them on ocassion.

I have read and been told this a BiPolar (BP) thing but she is so up and down about what freaks her out.... it never really has much consitancy... which makes it hard.

One day it is driving,(traffic etc) the next it is noise, husband leaving, going to school, being away from me, a movie... the next it is something completely different, she is crying because we will never see granparents again, or she can't get dressed, bath... I have also found that something will work for a couple of days and then, nothing... she is done with it... our Occupational Therapist (OT) is having a hard time with that one!!!

Like I honestly think the Kitty going with husband would make her happy because he could send her photos via phone of him and kitty and "talk" to the kitty on the phone and she would love that!!! You Know!!!

I just always have to have a bag of tricks at my ready at all times... she is so inconsistant... that is our biggest struggle I guess mixed with her anxiety it is hard!!!

So I take your suggestions and have them at the ready... thank you
 
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