What does stability look like?
I'm not sure I know what to work toward anymore. It has been so long since we were not needing med changes that I'm not sure we need any. Our daughter has been so "unstable" for so long that I'm not sure anymore what stability would look like. It seems I remember that she used to be more level and in the same mood, for instance, reasonable, cooperative, etc., more of the time. Rather than up and down up and down every week and even daily. She can be foolish or angry or sad or have a panic attack or an irritable attack or sudden axiety or whatever at any time without reason and without warning. Her moods are so changeable and she seems like many different people. I am wondering if this is what we need to learn to live with and handle or should we expect and try for something different or better?
I am not even sure how to report to her doctor anymore. She is not classic depressed and she is not classic manic, but she is moody and unpredictable. I guess that is what I could say. ? I am going to spend some time with hubby trying to put into words what she is like and what it is like living with her so the poor doctor can even guess what to aim for. I know that we live calculating our every move and never knowing shen she is going to spin off in some odd direction and maybe start crying or yelling at us, etc.
Is this how we should expect to live? Or is there better "stability" to be achieved??
Friday she suddenly became angry over ?? and threw the remote, breaking it open, and then punched her punching bag and then fell on the floor and layed there screaming in hurt and anger and then later came down quiet but then threw her expensive headphones on the floor and broke them.
Yesterday she got upset because her snail appears to be dying and I talked about it. Then she started on how we don't love her, and on and on..........
This morning she said she did not want to go out in the crowds to attend church so she stayed home alone for 2 hours and when we got back she saids he had a panic attack while we were gone. I could see her eyes looked red and she had "found" a broken glass in the cupboard.
This is how we live, and I'm not sure if we should expect more or leave things as they are.
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Pilgrim, dd 21 , BP, PDD, PTSD; FASD, different meds being trialed.
Pilgrim, I don't know what to tell you. It seems you have been trying for so long to find the right med combo, and there doesn't seem to be one that actually brings her to a functional stability. But I do think things can be better. Maybe she will never be independent, maybe she will. Only time will tell. She is still actually quite young, and I believe she has had developmental delays? You may find that by age 30 she will start to settle into a more predictable pattern.
You may be right that you need to learn to adjust to how she is now, while continuing to search for ways to improve her condition. Environmental adjustments can make a big impact on her life and yours. Maybe she needs a box of things that it's okay to break--plastic stuff you can buy cheap at Salvation Army or similar place. Maybe you need regular respite so you can have a break from being with her all the time. I'm sure others can think of some more ideas. Also, if you are not receiving any counseling or treamment, you may want to look into it. It would be hard to deal with this for so long without developing anxiety, depression, and/or PTSD.
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Brenda,51, TBMF Parent to Parent Volunteer
Mom to A, 17 1/2, BP, Tourette's, OCD, ADHD: Eskalith CR, Lamictal, Cytomel, Allegra
E, 16, BP,AS: Seroquel, Eskalith CR, inositol, Buspar
B, 14 1/2 & H, 11 1/2
Married 18 years to DH, 51
FROM TBMF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
Brenda,
Pilgrim's daughter has FAS. It's not like she were having "only" bipolar (I don't say that bipolar is easy to manage, but the problem of living independently a day or another has by no way the same perspective than with FAS : with bipolar, we can reasonabily hope that the person can live independently one day or another. It's absolutely not the case with FAS).
People with FAS can't live independently, whatever the age.
I don't want to hurt anyone's feelings, but hoping for Pilgrim's daughter to live independently is not a reasonable goal, and it won't be. It's like if you were hoping for someone with heart failure to go back with a native healthy heart, which is, of course, unrealistic.
Her daughter will need supervision all her life, because her brain damage (due to alcool exposure) makes her unable to put herself limits.
Pilgrim, we can hope stability.
Have you looked at http://www.fasstar.com ? You will find plenty of info on how can you alter your daughter's environment. It may also help her physician.
Regards
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25 yo, ADHD, sensory issues, Maths LD and prelingual Single Sided Deafness.
Preparing myself to go back to university to study Law (hope to become a lawyer).
Interests : languages (I speak French as mother tongue, Italian, English and Modern Greek), medicine, law, computer.
Yes, thank you. I have looked at many online sites for FAS. But I will look again and read some more.
I never quit looking.
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Pilgrim, dd 21 , BP, PDD, PTSD; FASD, different meds being trialed.
Yes, Amber is receiving cbt weekly from an excellent therapist who truly understands and cares and helps.
I myself, after we found her, started going once a month, as she is an excellent sounding board for me.
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Pilgrim, dd 21 , BP, PDD, PTSD; FASD, different meds being trialed.
I am dealing with a 19 year old who also goes through mood swings. She is so hard to talk to. She feels that she is in a "locked cage". I have had to implement restrictions but they were for her safety (I blocked some numbers on her phone) She has been recently diagnosed with depression, but we are seeing a pyschiatrist about Asperger's or other PDD's. How do I cope in the meantime?
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J. Collins
Hello,
Before having an official diagnosis, why don't you read books to know more on how to teach your daughter about social skills ? Even if it's not a PDD or Asperger, it can't harm.
It can give you great tools about how to manage your daughter.
You can also write social stories to her.
You can prepare a written schedule she can refers to at any time she needs.
Look at what she understands better : words ? Pictures ?
Also, have you checked her hearing and her sight ?
Sensorial impairments may look like a PDD or Asperger, whereas the social difficulties directly comes from the sensorial impairment.
It's something we often overlook, but it changes a great deal of stuffs.
Hope it helps
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25 yo, ADHD, sensory issues, Maths LD and prelingual Single Sided Deafness.
Preparing myself to go back to university to study Law (hope to become a lawyer).
Interests : languages (I speak French as mother tongue, Italian, English and Modern Greek), medicine, law, computer.
I've been thinking about your daughter. Are you still taking the EMPowers and Amino Acids? What about an omega-3 mix with both DHA and EPA? How long did you try them? Did you see any improvement?
On the diet, when you say you read all labels, are you eliminating all "natural flavorings" which is a hidden message for Monosodium Glutamate, basically an excitory neurotransmitter. Have your tried moving to a very low glucose diet where her diet is primarily meats, nuts, oils and vegetables? Both to starve any yeasts in the GI tract and to move her into a semi-ketosis diet: Look up the associations between epilepsy and the Atkin's diet.
Have you tried to boost BDNF? Daily exercise is well known. A couple of things I'm not familiar with are Pantethine, curcumin, and acetyl-l-carnitine supplements.
All of these types of things may take months or years for your daughter to show any signs of slight improvement. ---Brain cells grow very slowly.
Lastly, Have you tried neurobiofeedback? If it works, I think improvements can bee seen fairly quickly. I think it is basically teaches the brain how to self regulate with the mechanisms available to it. Others that may be a bit out there are accupuncture or Cranio-Sacral therapy?
I know this is like fishing, but I'm hoping to give you some ideas.
Best of luck.
Brian
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Daughter 7 BP/violent rages. Unsuccessful with multiple meds. Now reasonably stable (now with fewer and less intense regressions) on Risperidone + Restrictive diet + EMPowerPlus + AminoPowerplus + NAC + Q10 + low dose lithium + melatonin + inositol (no more Intuniv)
Son (5) Normal
Wife (CathyK now also on TBMF) BP, & trying to wean off the meds.
Pilgrim,
One more thought to ponder is ketamine. I heard a thing on NPR this morning and went back to the link on this web site. It sounds very promising, and too good to be true, but without a lot of history behind it. That said, I would really hate to even suggest something that could have horrible unknown side effects. So if you think about, please do a lot of research.
http://www.thebalancedmind.org/connect/forums/medications-and-psychotherapy/ketamine.
As difficult as it is, I think you can find a way out of this hard times.
Brian
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Daughter 7 BP/violent rages. Unsuccessful with multiple meds. Now reasonably stable (now with fewer and less intense regressions) on Risperidone + Restrictive diet + EMPowerPlus + AminoPowerplus + NAC + Q10 + low dose lithium + melatonin + inositol (no more Intuniv)
Son (5) Normal
Wife (CathyK now also on TBMF) BP, & trying to wean off the meds.
Thank you for all the input and ideas. I am going to print it out so I can refer to it and research them one by one.
In the meantime, we carry on with hope..............
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Pilgrim, dd 21 , BP, PDD, PTSD; FASD, different meds being trialed.