of all the dx..
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of all the dx..
| Fri, 09-01-2006 - 9:49pm |
Of all the dx that your loved one has been given - which one was the hardest for you to accept? Which one had the most impact on your daily life?
After 7 mos I was almost accepting the asperger dx. In the background other dxs were making noise. But I felt comfortable and accepted at this message board and thought life will be hard but it will be okay. Then the background noises got louder and bp was recognized. I find bp harder to accept.For me it seems scarier.I'm not sure if it is because bp is new or because I had finally was at peace and working on what son needed as an aspie.ADHD also made an appearance. I am not convinced that ADHD is a separate issue from the ASD. Just some thoughts..
After 7 mos I was almost accepting the asperger dx. In the background other dxs were making noise. But I felt comfortable and accepted at this message board and thought life will be hard but it will be okay. Then the background noises got louder and bp was recognized. I find bp harder to accept.For me it seems scarier.I'm not sure if it is because bp is new or because I had finally was at peace and working on what son needed as an aspie.ADHD also made an appearance. I am not convinced that ADHD is a separate issue from the ASD. Just some thoughts..

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We started meds in January. We needed something!Life with son was unbearable.. the violence,anxiety,meltdowns,anger,food issues, clothes issues. It's horrifying to remember.
Prozac took off the edge and allowed us to deal with some problems. We can discuss things
now, talk about correct social behavior(no hitting, breaking..), I can shower without him screaming that he doesn't know where I am. ( yes I would tell him I was going into shower, make him repeat statement, leave bathroom door open, use a clear shower curtain and still he'd melt).He was and still is not tolerant of people who make mistakes. But that is getting slightly better.We had been with this dr about 8mos before we put son on meds.Dr did extensive amount of medical tests. We had tried counselling for 3years before this dr. No one noticed anything except son was intelligent and verbal. His present therapist meets with son alone but he & I talk weekly by phone.He noticed the calming effect of prozac, the ability of son to play games & follow rules, less talltales, being able to discuss problems without anger.
A few mos ago xh started making noises about son being on meds.He see no problems other than I am a bad parent. XH spoke to dr. Dr asked me about taking son off meds. I thought about it and remembered how bad it was.I'm the one who had to deal with the behaviors, the phonecalls from school,etc. So I said keep him on meds.For me & my son medication was the right choice. But I must say when there is a change in meds, I do research and sometimes get frightened by the side effects. I think the 2 hardest things about changing to risperdal was 1) leaving prozac because I knew how it worked and 2) knowing that bipolar was the reason for the change.
When my son was on bipolar meds--he took 2 mg risperdal(and lithium, tegretol)---5yo and 53#. That was his max. All at bedtime.
After the ASD dx--I took him off meds. ABout 3 mo into it---we had to start the risp back. I started slow and did .25mg/day. That held him good until we started strattera. Irriability set in and we increased to .5mg. Pdoc said that his max amount now is 2.3 mg---he is 6.5yo and 60 lbs.
Holly
Well officially we've only had two, and I was kinda prepared for the AS one.
For me, the PDD-NOS is the hardest to accept.
((((Susan))))
I support you on your last paragraph, and the hug is for the rest of it.
I'm very thankful that our Dr does believe in childhood bipolar. Our first one didn't and dx him with anxiety disorder and started prozac. Within 5 days--he was manic. Ever see a manic 4 year old? Not fun!!
Bipolar terrifies me. The unpredictable moods. Will he be in a good mood, bad mood, irritable mood, hyper mood? Will he attack me and choke me again? Will he hit his little sister in the head over and over with his fists---because she is singing in the van? How many holes in the doors will he make. Will he run away and I can't find him? Will he jump out of the van, or climb on top, or find my keys and drive? Is he going to sleep tonight? Get up, bounce off the walls at 4am? Will he whip out his penis and chase the girls or neighbors? Will he pee on the toys?
These were every day events when he wasn't stable, and sometimes---all day. Many days at a time. This is what I can't handle!!
Give me the anxiety and ASD anytime. I can handle the ocd, anxiety issues, and sensory issues. Even meltdowns are fine. But not severe irritability, hour long raging and violence, or mania.
Yup,
anxiety and aspie behavior is a sheer vacation after a manic child has been on the loose.
Things are great now!! He is better now than he was while on lithium/tegretol.
The journey to find Lily's dx has been the hardest thing that I have ever been through. We knew from the time that she was a few months old that she had some type of genetic syndrome, but no one knew which one. She was tested for numerous diseases and syndromes due to her symptoms. At one point, we were led to believe for an entire week that our daughter had a deadly nerve disease like ALS that would eventually rob her of all the skills she had gained and ultimately take her life. Let me tell you, that is the worst week I have ever had. Thankfully, our daughter's geneticist did not believe the nerve biopsy report and insisted on a second opinion. She did not have that disease, but we were back to square one. She did not walk until one month before her 3rd b-day due to her poor muscle tone. She is still delayed in her gross motor skills and speech, but she's getting better all the time. We spent several years thinking that there was a big possibility that she would never walk. Even though the thought of that scared me, I think I can honestly say that her pdd-nos dx scared me more than thinking she might be in a wheelchair. I have seen how society in general treats those who have physical disabilities versus those who have psychological/emotional issues. Part of me would have been able to handle her in a wheelchair better than feeling like I can't quite connect with my own child. I don't know if any of that made sense or not. I think that this is the only place where I would feel comfortable saying any of this. Just a few months ago, Lily finally received a dx of "cranioectodermal dysplasia" (CED) . There are only about 15 cases documented of CED in the world. I have made contact with one of the families, and while this child does have some of the same symptoms as Lily, being on the spectrum is not something they have in common. I always thought that pdd-nos would be one of the symptoms of the sydrome, but apparently she may just be dealing with two separate issues. Her CED dx is a little scary because some of the children who have it have developed renal failure. We're having her renal function checked every 4 months. So, I guess to sum it up, pdd-nos is much harder to deal with, even though the dx did not surprise us.
Amy~mom to Natalie (9 yrs.) and Lily (almost 4 yrs, pdd-nos, CED)
Ya know, I wonder if it comes down to each individual case what affects your child the most. For instance, Dave is likely mood disordered but I believe his would be considered quite mild if he ever is dx'ed. Heard it a bunch of times that he likely is. But we are able to mostly control it with supps (omega's), behavior intervention, etc. So for me a dx for him of BP wouldn't be all that scary. I know with him we can find ways to manage it.
I am in a good place right now so I can't say that any one diagnosis bothers me more than the others. They are just all part of the picture of who my kids are and I know there is alot I need to work on. Whether it is behavior issues, social issues, etc.
I am quite fortunate in that we don't have any serious medical issues. Cait's seizures worried me when I started to see her lose skills but we seem to have a handle on that and the skills have come back. Mike has had a pretty big regression around age 7 and the unknown of why that is scares me but we seem to be back on the upswing so as long as he doesn't have anymore big regressions I will be ok with that one.
Mike doesn't have BP perse. At least I don't accept that he has bipolar, I think his rages are from the autism and the rages are the only real BP symptom he has. But his rages are the hardest thing for me to deal with because they are the scariest for his future. I worry about him not being able to learn to control himself and either being put in jail or a mental hospital. Both places would be devastating for him and the end to him.
Renee
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