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Forum Name: Psychiatric Topics

Question: Concerned about my 15 year old daughter.


 sallyanne - Sun Dec 09, 2007 9:25 pm

Hi, I am a 35 year old single Mum to two children. (Although I'd like to say the 'single' part I feel bears no significance in this)
Firstly my Son who is 13 years old and diagnosed with Aspergers Syndrome and various co-morbid conditions. He attends a residential school for children with Autism because his difficulties are very complex & comes home every weekend and every holiday.
My Son despite his difficulties is managing well and getting lots of therapy and help. He has no self esteem issues and is of above average intelligence.

My 15 year old daughter is the one I am concerned about. She is diagnosed with many problems, its complicated so please bear with me. She has Autistic Spectrum Disorder, ADD, Disorganisation Skills, she also has Multi Flexi Joint Syndrome (Fully double jointed) Low Muscle tone, Internally rotated hips, flat feet, Flexed posture, poor balance & co-ordination, Marcus Gunn Jaw-Winking Phenomenon. As a younger child she also suffered from regular bowel & bladder problems. Constipation which was extreme to a point where she once had to have a manual removal, (which she cannot remember) bladder infections which resulted in many anti-biotic courses (she has had ionised radiation scans and has no kidney scarring) She also suffered with Grand Mall Seizures until the age of 4 which began at aged 5 weeks when she stopped breathing for maybe 60 seconds. She then went onto having apnea attacks and needed moniters on her during sleep to alert me when she stopped breathing briefly.
Because of her gait walk and problems with her posture, legs etc she has been looked at in the past for spina bifada and MS but no conclusion has been drawn, she wears splints and is awaiting a knee operation as they turn inwards and cause her lots of pain. She can have the operation once she is turned 16yrs old. Her floppiness (double jointed limbs) causes her to fall over herself often, stumble and bang into people/things.

Of course she has had enough of the medical jargan and no real answers to why she has these problems. I understand sometimes there are no answers. However, at 15yrs old she is now suffering from very low self esteem, she is self harming, not eating, and doesn't understand why she is feeling like this. She has threatened suicide many times and even her friends are now deserting her saying she goes 'over the top'
She gets no help at school despite me banging my head against the wall with them. Instead they place her on behavioural cards for silly things like her leaving her PE kit in another class or her forgetting to hand in her homework sheet. They DO know of her ADD and ASD, but tend to be negative towards her instead of supportive.
My daughter is very clear in stating to me that she has NO issues at home. That she has NO problems with her brother and his complex issues but that she isn't understood at school and she feels frustrated and cannot communicate this properly to the teachers and her peers.

She is a very pale child and always has been. Her skin really is white despite her having the darkest hair and eyes you can imagine. She is a lathargic child, always needing more sleep than she can get despite always having a routine bedtime ranging from 7pm as a baby/toddler to 9.30/10pm now at the age of 15. She has little energy despite having a wide and varied diet, but more recently she choses not to eat. Walking takes her more effort than most, she leaves her PE kit at home so she doesn't have to join in at school because she has no energy for sports, and her legs & joints don't help her with this. Since her being aged just 5 or 6 I have had teachers and friends make comments about how clumsy, pale, tired she is. How she has a one second memory, no concentration & is disorganised beyond belief. How she has a gait walk, funny legs, trips over herself etc.

I understand that by her having all these difficulties she is bound to feel effected by these. I never make an issue out of a 'label' and as far as my daughter is concerned I have always told her she is 'normal' however she gets very cross with me and tells me she isn't normal and that I shouldn't say she is because how would I know when I am not her?

My question is... What should I be doing?

I've tried ignoring.
I've tried speaking with teachers.
Listening to my daughter.
Helping her with timetables, routines & structure to become more organised (with no significant benefits gained from this)
Speaking with my GP.
Just being there, listening, supporting.
Encouraging friends to spend time with her.

She has now got so very down and hurting herself in a whole range of ways that I can no longer go anywhere and leave her for more than a few moments. I will not leave the house unless she comes with me, even if its to the local shop which is just 2 minutes away because the last time I did I came home to find her head cut from her banging it against her bedroom cupboard and chunks of her hair pulled out. She often claws at her own skin and says she is trying to get the skin off herself so she can get the 'bad person out' and that way a new body may come inside of her.
Because she is finding things so hard and her friends can't cope with her behaviours they unintentionally upset her now with the comments they make towards her, so instead of encouraging her friends to be with her I now have to keep her home with me and stop her calling them or speaking with them on her instant messaging programme she uses online as she comes away after speaking to them in exteme destressed states and again begins the self harming behaviours.

Can I just say that I have no history of any depression or mental health illnesses. I am a very stable person & experienced with children. I came from a stable and supportive background, my parents were foster carers and cared for 67 children whilst I were living at home, my Mums now in Child protection & of high status and I have worked in EBD schools on and off over many years.
The only illnesses I can think of in our family history are pernicious anaemia which my Nanna had and she would have B12 injections for this. Both my Mother & fathers sides of the family including themselves have hypertension but there is nothing else at all in our family history that I can think of.

My GP is refering my daughter to a child peadiatrician, I am hoping the appointment won't be too far away, but in the meantime any advice would be most gratefully received.

My daughters problems don't seem to have appeared overnight. They have ALWAYS been there but as she has grown older she has found things more and more difficult especially in school.
 Sandy Tracy RN - Mon Dec 10, 2007 3:32 pm

User avatar Dear Sallyanne

Thanks for writing in, I am sorry to hear your daughter is having problems. At 15 she is noticing her peers more and wanting to fit in. it appears that your daughter is definitley dealing with depression. Although there is no history of depression in your family your daughter is dealing with very unique issues. I encourage you to get your daughter assistance as soon as possible. These are the years that your daughter is the most impressionable and self harming is no way to live.

It is great that your daughter is not having problems at home. Is she open to you? Does she know that she can talk to you without reprecussions? How about a different school one that specializes in special needs. It sounds like your daughter is not receiving the support needed at her current school.

It sounds like you have been very supportive of your daughter and her issues, continue talking with her and reassuring her that you are looking into ways to help her. In the meantime I encourage you to get the appointment with the pediatrician as soon as possible. Your daughter may need medication for depression.

I hope this helps, please do not lose hope and continue to assist her. If you feel she is going to hurt herself or someone I encourage you to take her to the emergency room so she can be evaluated.

Thanks again for writing in and God Bless you.
Sandy RN
 sallyanne - Mon Dec 10, 2007 4:32 pm

Hi Sandy,

Thank you for taking the time to reply to me. I appreciate that very much.

Yes my daughter is very open with me. We are fairly close as far as parents and teenagers can get & I feel most fortunate that she is able to speak with me about 'most' things, although there are times when she does tend to keep things secret.
I have openly asked her about the self harming and she has been very honest & open with me telling me everything she has done, tried or thought of doing and she has also been open about how she feels about food.

Unfortuantely I am unable to change schools for my Daughter. She is now in her final year, taking exams in the months after christmas and due to leave in June of 2008. I did remove her from the school maybe 2-3 years back as things were just as bad back then with the lack of support she receives in school but unfortunately no other local schools would offer her a place as they were full to the brim and are under no obligation to make a place for her. Eventually she had to go back to the school that I had removed her from and she has remained there since.

I have spoken with the school on numerous times, asked for educational psychologist assesments so she can be offered the support in schools in the areas of need and each time I've asked I have been refused. I have made official complaints, had meetings, phone calls. You name it, I've done it with this school but with no beneficial outcome ever produced.

I personally feel that her ASD, ADD, Disorganisational skills are what causes her the main problems in school and because of her literal interpretations, need for structure and routine, lack of communication skills and problems with processing information amongst other things. By not receiving the help in school she has not been able to have the continuity of support that she receives at home. Her peers seriously misunderstand her so she becomes withdrawn, a target for bullying and gets lost in the education system. By receiving such negative comments from teachers such as 'what a surprise' - 'when are you going to start trying' - 'how many more times do I have to tell you' - 'Thats no good do it again' - 'I've seen 7 year olds produce work better than this' its no surprise that her self esteem is now at rock bottom. I am disgusted that she is actually stood at the front of her class infront of her peers and humiliated by the staff when they say these things to her. They often ask her to leave their classrooms saying they don't want her in their class if she just cannot concentrate or try hard and they've even ripped up work and thrown books at her whilst she has been stood in front of her peers.

I was so concerened that some of her issues may have been surrounding her younger brothers behaviours and having to live with him. It wasn't until just four weeks ago that I managed to get the funding from our local education authority for her younger brother to be placed at a residential school for children with Aspergers syndrome, and like I said before her brother is a very complex character. I know its been hard for my daughter to be around him sometimes but its nice to hear her getting angry with proffesionals when she's told 'you have a lot going on at home right now' - OR - 'You must be very angry with how much time and attention your Mum has to give to your brother' - AND - 'I bet you miss out at home with your Mum being a single parent, its no suprise your finding things hard'.
My daughter with NO prompts or persuasion has herself stated that life at home is fine. That she only feels supported at home, that she isn't angry with her brother regarding his needs or with me for the time I have had to spend with her brother. Its very reassuring for me to hear from my daughter that this is NOT a home issue, although I am sure that her brothers complexities must not have been easy for her to have lived with.

I have had a date for an appointment with a psychiatrist & peadiatrician for 2nd January 2008 so at least that isn't too long now to be waiting.

I agree with you that if my daughter gets in a serious state of self harm then I must without hesitation take her to the emergency room. I almost done this once not so long back, but fortunately was able to manage calming her at home although it took effort and time. Its no fun for her though knowing she canot be out of my sight, but she does know that she is my priority and she needs to trust that what I do, say or decide on is for the right reasons and that its for her benefit. Whilst she is in agreement to allow me to 'take control' for her then I know I at least have less of a fight on my hands with helping her to move forwards.
Times in the past I have kept her at home for a few days, or a week knowing that she really is far too sick to manage a day at school. Of course the school have kicked up a huge fuss about this and have involved educational welfare officers saying they are concerened that she isn't attending as often as she should be. This makes me angry as I feel they are the cause of my daughters self esteem/depression and I pride myself in knowing that my priority right now is my daughters emotional and psychological well being and NOT the schools statistics or legalities of her having to be in school. However it IS important she continues her education so I encourage the days she is well enough to cope and so she does attend school regularly, with isolated days off when she is at her worst.

I have also been keeping a diary for the past 12 months or so and have noticed that my daughters moods, anger, tears and self harming is ten fold for maybe two days before she starts her periods and maybe the first three days into it as well. I understand that hormones can play a huge part in a persons behaviours etc although personally I have never suffered with PMT I'm one of the fortunate ones :o)
Would it be a reasonable request to try the pill with my daughter? Is this something that can help lesson mood swings / hormonal changes? Or is it best to wait until she has her assesments on 2nd January and see what suggestions and advice I am given then?

THANK YOU for your time & support, its very valuable to me.

Sallyanne
 Sandy Tracy RN - Mon Dec 10, 2007 6:52 pm

User avatar Dear Sallyanne,

I think it is wonderful that you are such a great advocate for your children. I applaude your efforts with the school district and am truly sorry you have not been able to gain more ground with your daughter. Is there a school board involved already or one that you can report the way your child has been treated?

I think now would be a great time to try the pill. There have been many reports that the pill can help with mood swings. Too bad January is still weeks away. Is your doctor willing to prescribe the pill? Maybe you can take her to an OBGYN. I agree with you that the continuity of care needs to be across the spectrum ( home as well as school). I wish I had more to offer you at this time!

You truly are an amazing person and I wish you the best of luck. Please keep me posted. Sandy RN
 sallyanne - Mon Dec 10, 2007 8:14 pm

Hi Sandy,

Thank you for such kind words.

There is not a school board involved and I feel pretty bad that I have not been able to do enough for my daughter with regards to schools. I have tried so very hard to do what I can with the time I have had available to me. Up until now I really have been a carer for my son 24/7 and as his needs are so extreme and complex its been difficult getting the time and energy I've needed to fight the school as much as I would have liked.
However, theres no point in me feeling bad about it or guilty and now my Son is being cared for during the week at his residential specialist school I can now pour all of my energy resources into my daughter & school. I intend to follow through with a complaints proceedure to ensure that children in the future may be treated a little more considerably.
My daughter very much enjoys art & photography, seems her ASD has gifted her in creativity. School have tried talking into her staying on for two more years to gain further qualifications in these areas but I have made a stand and told her in no certain terms will I allow her to stay in those surroundings for longer than she has to. I have found the courses she would like to do in a local college and hope she now gains the qualifications she needs to get onto them for 2008 when she leaves this last school year. I'll be damned if I allow them to cause negative effects on my daughter any longer. I am hopeing that a change of support with her education will give her more continuity with support across the spectrum and that college will maybe be more understanding than her high school has been.

I am unsure as to whether my doctor would prescribe the pill. Last time I spoke with her was when I asked for the referal to a psychiatrist / peadiatrician. I did ask about the pill at that time and she said she would prefer to wait until she had been assesed before she made a decision on that. Would you advise I push for the pill before the appointment date in January?

Could you tell me what an OBGYN is please? I'm in the UK and have not heard of that term being used before.

Once again, I thank you for your time and support. Speaking on here has helped me get a better perspective of what is happening with my daughter and which areas I need to concentrate on most.

Sallyanne
 Sandy Tracy RN - Mon Dec 10, 2007 10:28 pm

User avatar Dear Sallyanne,

I personally do not feel the pill is going to hurt anything at this point. There maybe another medical reason why your doctor wants to wait although I am unsure of what that may be.

An OBGYN is a Doctor of Obstetrics and Gynecology, specializing in pregnancy and hormones. I am unsure of what they may be called in the UK.

It sounds like you have things in perspective and know what needs to be done to protect your children. Once again I wish you luck and please keep me posted.

Thanks again and your children truly are lucky to have you.
Sandy RN
 sallyanne - Tue Dec 11, 2007 6:55 am

Hi Sandy,

Thank you for everything you've advised me of and once again for such kind words.

I have an appointment today with an educational welfare officer. The school asked them to come and see me because of their concerns with my daughter missing some time from school. She is due to meet with my daughter as well as me this evening after school finishes.
I most certainly will be telling her exactly why my daughter needs some time away from school sometimes and make sure that she is told what negative effect the schools management is having on my daughters education and wellbeing. I am hoping that after today she may have some constructive advise with how to approach the school or she may give the school feedback and advise herself.
I will NOT however condone any negativity from her towards my daughter this evening for any non attendance days in school and hopefully this won't come to that.

I will most certainly report back here to let you know how this appointment went.

You have been VERY helpful Sandy. Thank you.

Sallyanne
 Sandy Tracy RN - Wed Dec 12, 2007 12:17 am

User avatar Hi, Sallyanne,

I hope all went well this evening. Please keep me posted on the results of your meeting.

Hang in there it will work out!

Sandy RN
 sallyanne - Wed Dec 12, 2007 1:16 am

Hi Sandy,

Thank you for your continued support and advice.

I had the meeting with the educational welfare officer (Helen) at my home this evening with my daughter present too.

The meeting began on a very negative note with Helen speaking directly with my daughter and stating that 'she needed to sort herself out otherwise she'd get no-where with her exams'. I couldn't believe it. I instantly interupted calmly stating that I would not allow her to come into my home and be negative towards my daughter in this way whilst she was in such a vulnerable state. She again turned to my daughter saying she had herself to blame because she was not working with the school in their requests and expectations of her and she clearly was no longer 'bothered' about her attendance in school. Once again I calmly interrupted saying 'Helen I don't think you quite listened to me the first time, I will not allow anyone into my home and speak down to my daughter in this manner whilst she is in such a vulnerable state'. This kind of circle continued for a good 20 mins with her directing the conversation and blame at my daughter and me interrupting her again and again and again. Eventually my daughter sat in tears unnoticed by Helen. I actually had to say to her 'would you care to take note of my daughter now?' she turned to her and was unable to grasp any thoughts for a few moments. I asked my daughter if she would like to explain to helen why she was crying, reassured her that it was ok, that I was here and that Helen would listen this time.
My daughter then reeled out a whole lot of reasons why she were crying, saying how the teachers put her down, how she wasn't worth anything, was failing her exams, was rubbish at everything, how she felt un-supported, confused, mixed up, frightened in the school environment etc. Helen then went onto saying 'I can see your very stressed, school mentioned you've been having a very difficult time at home lately with your brother having to go away to a residential school'....!!!!!!!!!! I am pleased to say that I didn't need to interrupt this time as my daughter clearly stated that she had NO issues at home, she was NOT effected by her brothers difficulties because she had always had me help her understand his needs and be there for them both and she explained the only problem she has surrounding her brother is that he seems to get help with his problems and yet she doesn't. She said to Helen, I do have ASD, ADD, Organisational Problems & Dyslexia you know and it effects me massively. Why do I not get any help in my school or support and why am I on a behavioural card when I do not mis-behave? I am totally misunderstood and its not fair and even you don't want to listen to me or my mum.
Well..... helen didn't know what to say. I asked my daughter to give Helen some examples of the negative behaviours that the staff had displayed towards her and Helen was shocked. She went a little quiet when I went onto explain that I AM going to be going down the complaints proceedure with regards to the school and their behaviours and will include all agencies that have been involved and unhelpful.

She quickly changed her tone....

I am NOT a nasty, short tempered or manipulative person. Infact I am very calm, placid and stable so I don't think she was worried about my mannerisms, however I do think she realised just how serious I was about this.

She then began noting down the negative comments that have been made towards my daughter, and agreed without hesitation to take a look at my daughters school work which shows some of her problems with disorganisation, but which also shows her intelligence levels which are actually above average. She did then agree with me that she was confused as to why my daughter seemed to be placed in the bottom work sets and why her dyslexia had clearly been ignored. Her written work shows the problems in that area. I also asked why on any forms that the school had ever completed regarding my daughter did it state that she has no significant medical or special needs, when this clearly isn't the case and listed her problems that are DIAGNOSED in writing....

ASD
ADD
Disorganisational Problems
Dyslexia (I think I have a mild form of this too)
Multi Flexi Joint Syndrome
Splints worn on her legs / awaiting operation on her knees
Poor gross & fine motor skills
Sensory Processing Disorder

How can any school say on any forms that she has NO significant medical or special needs??????

The mood changed, she initially stayed negative for quite some time and insisted that under no circumstances was my daughter to be away from school for any single day until she leaves after her GCSE exams next year.

She ended up being disgusted by the schools behaviours, praising my daughter when she was shown her photography & art work and I must say she was HIGHLY impressed by her creative talents, and agreeing to give her an authorised absence for the 20th december because I TOLD her that my daughter would NOT be in school that day because my Son who was struggling to be away in residential school was playing the guitar in his christmas concert 90 mins drive away and I could either drive over to watch him and bring him home that day OR I could NOT watch him and leave his taxi to fetch him the following day to bring him home. I explained that under no certain terms would I miss his concert because he would be devestated if I wasn't there especially with him being so distressed still in the early days of him being away from home and that if I went and left my daughter at school she would have no one to care for her when she came home. Due to the FACT that she is self harming I am not prepared under any circumstances to leave her to care for herself so she WOULD be coming with me no questions asked.
She smiled sweetly and said 'oh in that case thats absolutely fine, thats a special day and your daughter should be with you so she can be there for her brother, its not a problem her missing a day from school for that'....!!!!!

She is 'apparantly' finding a mentor for my daughter at school who will have weekly sessions with my daughter to talk about anything thats upsetting her in school etc and I've insisted that she calls me by the end of tomorrows school day to let me know that its been sorted out and who the mentor will be. I also said that I would discuss with my daughter who the mentor is as I do not know all the staff in her school and if it was a member of staff that my daughter was uncomfortable with then I would expect the mentor to be changed to someone else without any issues.

She smiled and said thats not a problem.

I KNOW my daughter will be fine because I will make sure she gets better. Unfortunately it looks like she will only have that chance of 'seeing the light at the end of the tunnel' when she is able to leave the school and either go to college or try finding some part time work that she enjoys. June 2008 doesn't sound far away but with my daughter how she is it seems like forever. I CAN see the light though and I will get her there.

I feel very fortunate that my daughter trusts me and is as open and close to me as she has been.

My next plans are to sort the mentor out and to contact the education authority to begin the complaints proceedure. Enjoy christmas and hope the psychiatrist appointment in January proves positive.

My head has been so much clearer since I have had the support and advice from you Sandy. You don't know how much the time you have spent helping me with this means.

Thank you.

Sallyanne
 Sandy Tracy RN - Wed Dec 12, 2007 4:48 pm

User avatar Sallyanne,

You are very welcome. I am very proud of you and your daughter. It sounds like now you will get the help one way or another. Please continue to see the light at the end of the tunnel. May you and your lucky kids have a great Christmas and have fun at the concert. Your children sound amazing.

Please continue to write if you need to talk. You will get your kids through this trying time.

I wish you the best of lick
Sandy RN

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