What do I do now?

[almostcrazy]

My difficult child had her full physical on the 24th. They did blood work, and the doctor said there was no need for an MRI. I argued the point, saying with the suddeness of all the symtoms, couldn't it have been something medical? No, he says there would be other symtoms. I come home completely discouraged. Monday morning the doctor himself calls and leaves message that the bloodwork was fine and it was time to do an MRI. I found it very strange that he would call, and that he had a complete change of mind in 2 days time. Anyway, we had the appointment with the psychiatrist on the 29th, and that didn't go very well. The doctor a very nice man is from Indonesia, and has a very strong accent. My daughter along with being scared to death, could not understand him, and I had to try an tell her what he was saying.
She wouldn't talk, and he didn't really probe. If I hadn't been in the room she probably wouldn't have talked at all. He prelim diagnosis with Obsessive Compulsive Disorder (OCD), and ACHD. He scheduled her to be tested with a clinical psychologist on Sept 11th, and to see her again on Sept 24th. We had the MRI done on the 30th, and they called the next day to say it was clear. I called the pediatricain and asked if a neurologist had read the film, and they said no. I asked if they didn't think it was a good idea at this point to have a child neurologist take a look, because he might see something some else would miss. The answer was that it is not how we do things around here.

I don't know what to do next. Do I keep the appointments? Do I try to find someone she is more comfortable with? Do I change pediatricains? Do I try the Childrens's Hospitals? I feel so helpless. My daughter is getting worse, and I can't stand just sitting and waiting for something to happen. She has had 3 blood tests for strep, and all have come back normal. I know Obsessive Compulsive Disorder (OCD) and other illneses can come on suddenly, but usually there something that has happened to trigger it. She has so many things that is doing and not doing that are abnormal now, and they seem to change everyday for the worse. She will not talk to us about any of it, and she doesn't care if she gets better or not. She doesn't really seem to care about anything. She can't answer questions, and she can't say so many things now. She can't go to sleep for all of the thoughts in her head. She doesn't want to be touched at all now, and she only tells the bad things.

If anyone has any advice I would really appreciate it.
My best to you all.

 

[smallworld]

I'm sorry you're struggling.

In terms of the MRI, our neurologist told us that the yield is very low. In other words, very few abnormalities are picked up on MRIs, but neurologists recommend the test as a rule-out. Furthermore, neurologists don't generally read the MRIs; neuroradiologists do and then send the neurologist (or pediatrician) a report. I've had two kids go through MRIs, and both times the MRI findings (tiny abnormalities) were not related to their mood disorders.

Since your daughter is getting worse and you don't seem comfortable with the psychiatrist, I think I'd recommend seeking out a child psychiatrist at a children's hospital. I hope you get some answers soon.

 

[TerryJ2]

Sheesh. Sorry I can't help, but just wanted to offer support. It's all so frustrating. Take care.

 

[Hound dog]

Your post brought tears to my eyes. In it I can recognize the frustration and panic I was at right before Travis began getting his dxes. He was 12, and I had been trying for those entire 12 yrs.

The only advice I can give you is what I'd do in the same situation. I'd call up the children's hospital nearest you and get referrals for pediatrician docs and neurologist and neuropsychs.

If you just HAVE to have a refferal to go to a specialist, then you need a new pediatrician doctor. One that will LISTEN to the information you are giving him. If that pediatrician doctor doesn't listen, then find another, and so on til you find one that DOES.

Now if a referral isn't absolutely necessary for insur. Then call your local children's hospital, ask for the Neurology Clinic (hopefully they have one) and schedule an appointment asap.

Finally, DON'T GIVE UP. Someone, somewhere will be able to find the answers.

I'll give you the truth, I went thru too many docs to list, and 3 children's hosps before we finally got all the dxes for Travis.
And when we met his last neurologist I asked the man if I could kiss his feet. It took him less than an hour to diagnosis the boy. Why? Because it was his area of expertise. He happened to also teach neurology at the local medication school, and specialized in tourettes and autistic spectrum disorders.

I don't know whether what you're seeing with your little girl is purely medical, mental, or a combination of both. But you're her only advocate right now, and she needs you to hold it together til you can find the right docs to find the answers. You can do this.

Keeping you and difficult child in my thoughts and prayers. Please keep us updated.

((((hugs))))

 

[BusynMember]

Hon, if it were me, I'd see other doctors, including a psychitrist that your daughter can understand, and I'd go to a university medical center (they are usually on "the cutting edge.") I'd be alarmed too and I wouldn't rest until I had some answers that made sense to me. (((Hugs))). I hope you can get more help.

 

[nvts]

I think you should choose the option of going to a neuropsychologist a the Childrens Hospital. Basically, you're looking for answers, you aren't getting them and you're not going to feel satisfied that you exhausted all of your options until you've exhausted all of your options.

The neuropsychologist will test all aspects to see what may be going on.

Good luck!

Beth

 

[LittleDudesMom]

We so understand that there is nothing so frustrating and scary than watching our children suffer. I think DaisyLover gave you some great advice that others echoed.

Hugs and support,
Sharon

 

[rltoon]

Hi,

I've never posted here before, but I have been reading for a while. My eight year old daughter is exhibiting some of the same symptoms as yours. She has alot of bad thoughts and says things that are hurtful then says, I didn't really mean that or asks, did that hurt your feelings? She has some Obsessive Compulsive Disorder (OCD) symptoms but like you she has other things going on too. I am terrified too and aside from frustrational anger, this all had a sudden onset. She says things like, what if I sleepwalk and kill my whole family? Then she'll say, that won't happen right Mom? Because I don't sleepwalk. She suddenly wants to be a teenager and is trying to act as though she is. She is less affectionate and is hesitant with the affection she does give sometimes and then other times she is quick to say I love you mom, or hug me or her dad. I know some of it is her growing older but she even she knows something else is going on. She is not physically violent for the most part aside from typical swat exchanges with her brothers, but she has a very quick temper and angers immediately for the smallest things. She complains of headaches and stomachaches very frequently. She cries very easily if she is reprimanded for yelling or saying rude things. She is obsessed with getting boobs. She keeps saying, my boobs are getting bigger. They aren't by the way. She has put on alot of weight in the last six months. More than normal and she eats all of the time. I catch her in the refrigerator constantly. I have tried limiting her to only healthy snacks, fruit, yogurt, etc. but she will sneak in the kitchen and eat three yogurts instead of the one I agreed to. She is very wrapped up in fantasy, becoming a witch, wishing on stars to become a witch, etc. She wants to be a witch so she doesn't have to do anything. She can make it happen with magic, cleaning, homework, etc. She, like your daughter has a disaster zone of a room and has become very unorganized at school. Her grades were good at the end of the last school year, and as these symptoms have only presented at the beginning of summer, I don't know how she will fare this year. I am so worried and hate that she is living with tortured thoughts. She even says, I want these thoughts out of my head. She has an appointment. for psychiatric. testing on 9/17 so I hope we find out something then, sorry I don't have any advice for you other than, you are definitely not alone. She has several of the same problems as your daughter and were this not already so long, I would list them too. Please keep us updated and I hope you find the right path soon. My heart aches for you, I know how you feel. I feel like I've lost a child. She just isn't the same little girl she was. I still love her just as much, but I almost feel like I am grieving.

Sorry so long,

Robin