Update on 5 yr old daughter

[almostcrazy]

Hi, remember me (the overnight change). We went for the second blood test for strep, and it was negative. I know the doctor is not up on PANDAS, and I still think he might have missed something. We have an appointment for a full physical next friday, and I am going to ask for a neuro workup, and a multi-disciniplinary evalution. I don't know how receptive the pedoc will be, but I want some answers.

I am going to list the new behaviors, and then the older more unnoticed behaviors. If anyone can give me anymore info I would really appreciate it.

Newest Behaviors:

1. Sudden compulsion to tell everything
2. Sudden refusal to say certain words
3. Sudden repeating of phrases (forget I said that, or I don't
know if I did that on purpose.
4. Suddenly being unsure of everything she says or does.
5. Suddenly withdrawn, and spending time alone alot.
6. Saying it is all my fault, I'm stupid, and feeling uwnworthy
of our love. When we tell her we Love her she says "You do?"
7. Will not hug or kiss or respond to Good Night or Good bye.
8. Threw her 1st full blown tantrum in Walmart, because she could
not say please to get a toy.
9. Telling me she wiped her hands on something. I wiped my hands
on the couch, the curtains, my shirt, etc.
10.Not eating very much. Not sure if she is hungry.
11.No separation anxiety. Totally unlike her.
12.Doesn't seem to like the pets much anymore.
13.Compulsion with cuss words. Not saying, but thinking them.
14.Compulsion with having babies.
15.Compulsion with masturbation. She calls it wiggling, and says
it feels really good, and she needs to do it.
16.She says she only has negative(bad)thoughts, and that she is
never happy.
17.Doesn't want to do the things we used to do: read together,
piano lessons, schoolwork, baths, etc.
18.Doesn't ever want to go to bed.
19.Started snapping her fingers when she is upset.
20.Very angry, and more aggressive. Likes to fight.
21.Seems to enjoy others being upset.
22.Thinking that other people are talking about her or looking
at her.
23.Asking us to do something, and then saying she is not sure if
really want us to do it.
24.Inattentive doesn't seem to listen most of the time.
25.Seems confused as to her sex. Today I am a boy etc.
26.Can't make a decision about anything. She says what if I
realy don't want it, or I really don't want to do it.

Older Behaviors (still there)

1. Very clumbsy
2. Easily distracted
3. Constantly on the go. Never a down time, unless asleep.
4. Seperaton Anxiety (didn't ever want to be without mom)
5. Exteme fear of loud noises. Would put her in a frenzy.
6. Worried alot.
7. Disorganized, would lose everything, and her room is always a
total mess. I would have to help her clean it, because she
would get so overwhelmed, nothing would get done.
8. Compulsive talker, never quiet.
9. Very intelligent, and learns easily.

Older Behaviors (not doing anymore)

1. Very loving, and affectionate.
2. Saying I love you constantly, and asking how much we loved
her.
3. Didn't like to play alone.
4. Helpful, and compassionate.
5. Stubborn, arguementative.
6. Wanted everyone happy.
7. Would go up and started talking to other children. Would
talk to anyone who would listen.
8. Easily frustrated with minor things.
9. Could communicate better with adults.

I am sorry this is so long, but I am desperate for info. I feel like I am losing my mind. What could start all this? We have an appointment with a child psychiatrist on the 29th, abut it seems so far away.

For the last 2 days she says: If I did (whatever it is) on purpose, I won't do it again. i have heard this 1000 times.
I don't know how to help, because I'm not sure what it is. I am reading up on Obsessive Compulsive Disorder (OCD), but I don't think that is the only problem.

Thanks for listening

 

[Hound dog]

I see austic spectrum behaviors and bipolar behaviors there in those lists, both old and new.

Forgive me, but I have to ask especially with the new low self image/esteem issues/sexual behaviors, any possbile chance of sexual abuse? Which could also bring about many of the other behaviors your seeing. I am NOT saying that is what this is by any means. Just tossing it out there.

I don't know anything about PANDAS, though. I think I'll wander off and look at that this evening.

Good that you made a list for the doctor. Keep it for the doctor doing the evaluations too. I know that if I was seeing this in a 5 yr old, if pedoc wouldn't refer I'd find a new one who would.

((hugs))

 

[LittleDudesMom]

Can't offer you any diagnostic suggestions or information. I will say that you are definately on the right path by preparing a list for the doctor.

It matters not whether the pedoc is receptive or not. It is your right to request the tests you want for your child and should not be denied the referral. Additionally, my insurance covered the multidisciplinary evaluation at a local university with just the specialist copay on my part. Look into your insurance for further options.

That's a fabulous list and shows a lot of insight and work on your pat. You are a warrior mom. Please keep us posted.

Sharon

 

[BusynMember]

Although I am really puzzled by such swift changes in behavior, I am wondering if you noticed any tics (eye blinking, finger flicking,mouth noses, sniffing, throat clearing, involuntarily shouting out words (especially cuss words) etc). Tourettes Syndrome comes to mind because Obsessive Compulsive Disorder (OCD) is a classic symptom of Tourettes. Has she seen a Neurologist? Also, bipolar is very common with Tourettes. Here's a "copy and paste" about Tourettes and I think it sounds a bit like your child:


Childbrain.com Pediatric Neurology Site

What Type of Tic Disorders are There?

The most complicated and concerning tic disorder is Tourette's disorder. This disorder requires the presence of tics for at least 1 year. The tics must be motor and vocal in nature. The tics must be frequent, never stopping for a period of longer than 2 months. They also must be causing a significant impairment. Tourette's disorder is a combination of multiple tics, AD/HD like symptoms, and obsessive-compulsive difficulties.

Chronic motor tic disorder:
same as Tourette's except not associated with vocal tics
Chronic vocal tic disorder:
same as Tourette's except consists only of vocal tics (no motor tics)
Acute tic disorder:
a disorder consisting of tics, lasting a short time and resolves when the causative stress factor is eliminated (lasts less than 3 months).
Tic disorder not otherwise specified:
includes all the other disorders that do not meet the criteria for the above-mentioned disorders.

Tourette's Disorder

This is a disorder of a combination of both vocal and motor tics. It should be considered a part of a behavioral disorder spectrum that consists of tics, obsessive-compulsive behavior, and attention deficit hyperactivity disorder. In order to qualify for the diagnosis of Tourette's disorder the tics must be present for over 1 year and never resolve for a period longer than 2 months. The natural course of the disorder is fluctuating. The fluctuations of the symptoms may or may not be related to stress factors.

The origin of the disorder is genetic, believed to be transmitted in an autosominal dominant manner, but other genetic factors may play a role, including gene amplification (worsening with consecutive generations) and genetic imprinting (having a different presentation in inherited from the mother's or father's chromosomes). The usual presentation of Tourette's disorder is with some increasing hyperactivity and irritability. At this time some kids may be diagnosed with AD/HD and started on stimulant medication, to be later discontinued as tics develop. The tics usually evolve initially involving motor tics in the face area, such as eye blinking, facial grimacing, hair fixing, mouth opening, nasal flaring, and neck jerking. The tics then evolve to the shoulders and extremities. Usually the vocal tics develop later and frequently consist of throat clearing. Other vocal tics may consist of humming sounds, grunting, high-pitched noises, yelling, and actual words, usually curses.

The vocal and motor tics may occur concomitantly but don't have to in order to qualify for the diagnosis of Tourette's.

Obsessive-compulsive behavior, anxiety, and depression may be associated with the disorder and usually develop later into the course of the disorder.

The full-blown condition may be extremely disruptive and living with it may be difficult. Treatment may be helpful to various degrees.

What are Some Other Causes for Tics?

Tics may be caused by extreme stress, some medications including Ritalin, Dexedrine, and Adderall (stimulants), or Tegretol may cause them. On rare occasions, some infections that involve the brain (encephalitis) may be associated with tics. Other genetic and metabolic disorders, mostly those that affect the basal ganglia may be associated with tics or with tic-like phenomenon. Also viral infections may rarely cause tics. Streptococcal infections have been associated with the development of tics and obsessive-compulsive behaviors. PANDAS or pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, is a known entity in which the antibodies to the streptococcal bacteria attack the basal ganglia causing the above-mentioned symptoms.

Tics must be differentiated from chorea. Chorea is a movement disorder that unlike tics, cannot be reproduced by an observer, is more difficult to suppress, and is incorporated into voluntary movements. Rarely some seizures may be brief and rapid imitating tic disorders.

Treatment for Tourette's Syndrome

Most children with tics do not require treatment. The fluctuating course of the disorder makes waiting a prudent choice; it also makes it difficult to clearly assess response to the medications, since a regular fluctuation rather than medication effects may cause worsening or improvements. When treatment is considered, different neurologists may have some slightly different approaches.

Clondine (Catapress) may be used as the first line of therapy by some. The advantage is that it is available in a patch form that may be replaced once per week, not requiring a daily ingestion of tablets. Like Guanephezine (Tenex) it is a centrally acting blood pressure medication that may benefit tics and calm down the hyperactive behavior. In some, especially with Tenex, parents report an improvement in attention span and school performance.

Other tic suppressing medications included pimozide, fluphenazine, and haloperidol. These are highly effective, but may be associated with some serious side effects, including liver and blood clot dysfunctions, weight gain, allergic reactions, dystonic reactions, and tardive dyskinesia. Tardive dyskinesia is a potentially irreversible movement disorder that involves the mouth, tongue, and extremities. Other medications helpful in this situation include the SSRI's (selective serotonin reuptake inhibitors); these include Prozac, Zoloft, Paxil, Luvox, and Celexa. These medications may reduce anxiety and improve obsessive-compulsive inclination and behavior. Their primary indication is as antidepressants. Depression plays an active role in late Tourette's disorder patients.

Other treatments include psychological counseling, behavioral modification, support groups, and biofeedback with limited results.

The natural course and outcome of this disorder is variable and in many situations as the individual matures the degree of the tics and the disorder tunes down gradually, regardless to the medications effects.

 

[1 Day At a Time]

I agree with LittleDude'sMom that you have done a wonderful job with this list and you will be well prepared for your appointment with the psychiatrist. It sounds like you are on track and doing what you need to do for your little one.

Another thought is, has she been exposed to any new people - new family friends, new relatives, new people in the home? While new sexual confusion and interest is not unusual developmentally in children the combination of behaviors that you mention make me wonder if she hasn't inadvertently observed something inappropriate for her tender age or if someone (perhaps an older child) has made inappropriate comments to her. Just a thought...