Attn: Evocationer

Here is the answer to your questions about my oldest child. She is in an extreme and ever-worsening state these days and it is taking a tremendous toll on us all. Any help appreciated (she is getting extensive mental health services as well)

Describe each complaint/associated set of symptoms in detail. Please include the following when doing this:

Appearance
2. Sensation or pain
3. Situations/events/triggers for making it worse
4. Situations/events/triggers for making it better
5. Event that seemed to start the complaint
6. Other sensory features – smell, sound, taste, tactile etc

Complaint: Vocal and other tics-does a throat “clicking,” wipes/brushes the outside of her nose repeatedly with her fingers, runs her hands through her hair, wiggles her hands side to side at the wrists (not flapping)

Says that her throat “burns.” Also has post nasal drip (visible mucous flowing down the back of her throat) which may exacerbate the pain/trigger the tic.

Triggers-anxiety/stress, focus being drawn to the ticking (e.g. talk about it, ask about it, watch her while she does it), actual physical sensation that bothers her (e.g. mucous in her throat triggers her to tic); OCD obsession/compulsion (e.g., her OCD “tells” her that she has to kick her throat repeatedly; wiggling her hands calms her down).

Made better-not calling attention to the tics helps minimize them but they do not disappear. We are weaning her off of a particular anxiety medication and this seems to be reducing the tics.

Not sure when they started completely (noticed the throat clicking several months ago, but it was much milder and transient). All of the other tics appeared/got exponentially worse over the past month or so.

We have also been cutting back on her supplement and trying psychotropic anti-anxiety medication in the past 2-3 months and this may be contributing to the increase in symptoms.

Also a theory that strep infections may cause/significantly increase OCD symptoms (Google PANDAS or PANS) Not sure if this is a factor, especially due to the fairly recent and persistent complaint of burning throat.

Complaint: emotional outbursts/tantrums: screams, flails around, invades personal space of others in a threatening manner, cries, writhes around on floor, etc.

No apparent pain involved

Triggered by frustration, stress, unmet expectations/unpleasant surprises, feeling overwhelmed or unprepared for a task, anticipation of failure, feeling uncomfortable (physically or emotionally), transitions, etc.

Made better: if left to her own devices (no schedule, no demands, no expectations, everything that she tries to do/use goes smoothly, etc.) she is generally a pleasant and engaging girl.

Started at birth. Even as a newborn in the hospital she was extremely and intensely reactive to disturbances (e.g. blanket/clothes being removed for a diaper change) and difficult to soothe/settle.

Not aware of other sensory involvement, although she has a history or overall sensory sensitivities (across all domains).

Complaint: Eye pain, odd sensations, visual disturbances/“visions”

Has a history of repeated blinking, staring beyond the object of focus, increased eye pain when she makes eye contact with people, a sensation of “wind” in her eyes, stabbing pain in eyes, objects in her visual field changing size, words jumping around on the page when reading, and difficulty with eye tracking/convergence. Sometimes sees objects out of corner of her eye that aren’t there or fleeting images that are not there (visual hallucinations).

Sometimes this gets worse with strain (e.g. doing work that requires close visual focusing like reading or computer) for extended periods of time especially if she’s not wearing her glasses. Sometimes there is no apparent trigger.

She responds to this at times by blinking, rubbing her eyes, taking a break from visually demanding activities, etc.

Complaint: Neurological pain: Tingling in fingers, pain shooting up arms

This started as intense shooting pains up her arms nearly constant for many months following chicken pox. She says that it still happens occasionally (she had CP 2-3 years ago). She also reports a tingling feeling up and down her fingers (more historically) and at her finger tips (still present) Whenever she extends all 5 fingers on a hand, especially in a grabbing/claw motion she will get tingling in her fingertips that remains for a while after. This is all subsequent to the chicken pox.

Complaint: Gastrointestinal pain: She has has chronic constipation since starting on food (non breast milk) at 7 months of age. This worsened progressively until age 3 when she was only passing stool every 7-10 days. She would resist having bowel movements, and would wake up during naps/the night having painful BMs in her diaper (because that was when her muscles would relax and she wasn’t actively resisting). She had bleeding hemorrhoids, and it was generally awful. Worked with a natropath and used supplements/essential oils/abdominal massage with little improvement. Worked with several gastroenterologists. Was on daily laxative medication for approximately 18 months. with modified diet (no gluten or dairy). Went on supplement program with a lot of probiotics and magnesium. This allowed her to wean off the laxatives and still stool with regularity

Complaint: Food sensitivity. Historically sensitive to gluten, dairy, food dyes, and suspect sugar as well. Historically also seemed sensitive to corn but this seems to have resolved over the years. Responds to consumption of these foods with stomach cramps, constipation, increased emotional lability and acting out behaviors/tantrums.

Complaint: Migraine-like headaches. Started reporting these several years ago after an episode of the flu. At times, have been thought to be related to “growing pains,” blood sugar, eye strain, neck strain, etc. When she has them she is also more sensitive to noise, light, and movement. Feels better when she puts her head down/rests. Would also be accompanied with dizziness/nausea. Hasn’t complained of these much in the past year or so.

Complaint: mood swings. She is incredibly emotionally labile. She can go from 0 to 60 in a flash. Often triggered by criticism/perceived criticism, fear that someone will get upset with her/she won’t be able to meet expectations. Something doesn’t go her way/as expected. As I write this she is escalating/having a tantrum/being oppositional because she cannot find the laptop computer that she wants to use and she is worried that she won’t get a turn before her younger brother so she is losing her mind. There is no apparent pattern to these behaviors, but she seems to be motivated to upset others in these situations (e.g. she won’t go somewhere secluded to calm down; she wants to irritate/bother others when she is upset). She has been intensely reactive, difficult to de-escalate, etc. since birth.

Complaint: Thought “disturbances” She reports an awareness of a “Spirit guide” who protects her and an “Evil Dude” who tries to harm her spirit guide and tell her to do the wrong things. She says that these guides transmit thoughts to her (not that she hears voices, but that she thinks thought of theirs). She also has obsessions/compulsions. She has been reporting the guide for years, but moreso lately. Likewise, she has reported mild obsessions/compulsions on and off for years (e.g. needing to walk down the stairs the “right” way) but the symptoms have exploded over the last 1-2 months.

Complaint: Self Injuring This is a new symptom in just the last week. She is picking off scabs intentionally to hurt herself/make herself bleed. She says that she does this when she is sad (which she says is most of the time). She says that when she bleeds she feels a sense of release, and she is fascinated by watching the blood. She gets upset if she doesn’t bleed enough.

Complaint: hemorrhoids, bleeding with stool. See other areas for gastrointestinal history.

Complaint: Sore throat. She has had a red, raw throat with draining mucous (clear/whitish) at the back of her throat and a swollen gland on the left side of her throat/neck. She periodically wakes in the morning saying that her throat “burns” (see vocal tics above). So far, strep throat culture has been negative. Has reported burning/pain on and off for several weeks. Worst in the mornings. Sometimes limits eating.


Make sure each complaint is done separately. Do not group them together.

MENTAL STATE OF THE CHILD (IMPORTANT)

1. When the physical complaint is active, what is his/her emotional state like? What does he/she do? What does she/he want you to do? She is almost always an emotional mess or on the brink of emotional meltdown at any turn. She wants us to cater to her every demand but those demands tend to change so that there is always some unrealistic demand (i.e., she is committed to being upset and makes it impossible to soothe her).

2. Does he/she describe any unusual sensation or pain in the body, especially when they are complaining of something? I don’t know

3. What fears does he/she have? How does she/he react?

General anxiety but also fear of people being upset/mad/disappointed with her. Reaction is hypersensitivity to criticism or perceived criticism; preemptive meltdowns/tantrums/threats (e.g. if she gets caught snatching a box of cookies from the pantry and eating it all she will yell and shout at us, flail around, hit a sibling, etc. escalating very quickly before we even say or do anything)

Fear of dogs (avoids them); fear of heights (avoids them); fear of being kidnapped (irrational paranoia at times e.g., phone rings and my young son grabs the phone, “don’t answer, it might be a kidnapper!” Sometimes in the car if another driver by us looks at hear “it might be a kidnapper,” etc.) Fear of the car driving over bridges/overpasses, fear of contamination (e.g. won’t drink water at someone else’s house, only ours and my parents’). Irrational obsessions/fears ('bad' colors, numbers, words, fear of harm coming to self/family, etc.)

4. Was there any incident in the past that had a great impact? What happened at the time? Is there any ongoing reaction to this event? How does he/she talk about it?

Has had several incidents of note that she discusses:
At 20 mos. old it was Halloween and she was excited to greet Trick or Teaters at the door and give them candy. A group came by with students with disabilities (cognitive and social delays) and an adolescent boy was dressed as a movie character/monster (Shrek the ogre). After giving him candy, he raised his costumed “Shrek” arm in the air in a mock threatening manner and growled at her. This terrified her and she ran into my arms. She “talked” about it (best she could at 20 months) almost daily for months and it was 5+ years before she would participate in Halloween again. She would refuse to go outside or let us answer the door on Halloween for many years after that incident, and would often hide in her room until children stopped coming by each year.

At age 3 or 4 she was outside playing and the neighbors across the cul de sac had two large dogs who often made their way out of the house unleashed. They were not friendly dogs and would bark in a territorial/threatening manner and would sometimes come toward or over to our yard. On this occasion, one of the dogs began to come over toward my daughter and she became very scared. She ran toward the house as the dog followed. She tripped and fell, scraping up her hands and knees. This factors into her fear of dogs and she will still on occasion refer to that incident.

At around age 7 I told her to explore an area of the forest preserve behind our home because a tree had just been cut down and there was now a large trunk on the ground 5-10’ back from our yard that made for a nice quiet spot for sitting and reading or whatnot. She went back to explore/play while I was in the house for 15-20 minutes). Unbeknownst to me, she misunderstood my instruction about the tree trunk and thought that I told her to go back and explore the woods, which she had done and she had lost sight of the home (the foliage is pretty dense when the trees are leafed out and she quickly lost sight of the house). She ended up walking sideways through the forest toward the main road and popping out by the road a bit past our subdivision, which she recognized. She then walked back to and through the neighborhood about 5 blocks back home. She was very scared to be lost all the while, and her sister called her a “Crybaby” upon her return (a name which she hears often and is a real “Hot button” for her). The experience made a huge impact. In the meantime, she was only gone 15-20 minutes before she showed up at the front door and I had no idea that she had wandered off-I thought that she had been playing back by the tree trunk the whole time.

5. Is there any story (book, fairytale, cartoon, movie etc) that seems to really resonate with her/him? What does he/she say about it?

She tends to relate to books in which the main character(s) struggle with challenges (e.g., personal disabilities/differences, historical or environmental hardships, etc.). Some examples include “The Junkyard Wonders,” “Wonder,” “Mockingbird,” The “Dear America” series, especially “Where Have All the Flowers Gone” and “I thought My Soul Would Rise and Fly.” She also said that she can reread “The Secret Science Alliance” and the Copycat Crook” over and over and never grow tired of it. She also really likes to read books about facts and information e.g., Ripley’s Believe it or Not, World Almanacs, Guinness Book of World Records, National Geographic kids material.

She finds these stories to be touching and relatable. She finds the factual information to be interesting.

6. What kind of fantasies does she/he describe to you? How does this translate down into play, games, toys? Does he/she tend to draw particular things over and over? If so what are they? If you point to these images, what does she/he say about them?

She aspires to be an actress and singer. She likes to dress up even though most of her friends are no longer interested in this type of play. She pretends to be on TV or in a Broadway show and she and her sister put on performances. She and her sister often play that they are orphans and pack up a few belongings and pretend to “live” in the bathroom. They then get jobs and improve their circumstances. They also play “princess/maid” where one in subservient to the other (she often plays the maid). They also play school (she prefers the role of the teacher and feeling “smart”). She likes to draw clothes.

7. Does he/she describe any dreams or nightmares to you, and what are they? How does she/he react on waking from them?

She says that she has a lot of dreams where people get body parts severed and dreams in which everyone dies and she is left alone. She also had a recurring dream in which there was a really big car crash and everyone in the world died in car crashes and there was blood and heads everywhere and cars piled up everywhere. The only survivors were her immediate family and the 8 students in her class (at the time). We had to seek shelter in her bunk bed. Another recurring dream is when her former teacher took her class to the zoo. They were entering and see the giraffes first thing. They walk around the zoo for a bit and end up at the giraffes again. A torrential rain/flash flood start. The teacher tries to get them back to the car. They get in the car but the rain is so bad they see cars sinking down below the water. Their car goes under too but they are able to resurface find a shelter in the rain and then she wakes up (every time). i also have something that i think is meant to be a happy dream but it is kind of scary too. me and my family move into a town that is vary happy and every one except us are clowns it is slitty different every time but basically we are going about our daily lives with clowns .

8. How is he/she when interacting with other children? What about sports or games? How about obeying rules or social conventions? She generally gets along well with other kids. She makes friends easily, although some children tease her or think that she is “weird” or “babyish” in her behaviors and respond to her as such. She is not a fan of sports or games. She generally cannot keep up (has fine/gross motor delays, visual/motor challenges, etc.). She sometimes has trouble remembering all of the rules, and gets “in trouble” for not knowing the rules. She has a very difficult time losing and often goes into a game knowing that she will probably lose and she will not handle that well. (She also does not like when others lose. Basically she empathizes with loser(s) and gets upset on their behalf). She does not like competitive games/situations of any sort. She generally obeys social conventions but has difficulty with impulsivity and her challenges with frustration as she encounters it anywhere.

9. How is she/he when interacting with older people? Is there any difference between family or friends and strangers in terms of reactions and behavior?
She enjoys speaking with adults, but is often shy at first with new adults. She gets overwhelmed/anxious when a lot of adults are in one place (e.g. at a party) even if many of them are well known to her. She is sometimes suspicious of unknown adults, especially complete strangers (e.g. people we don’t know out in public).

10. What kind of activities does he/she enjoy doing? Which of these do she/he spend the most time at?

She likes movement; riding her bike, swinging on the swing. She likes music, singing, acting, and reading. She has recently discovered a website that allows her to learn basic computer programming and she likes to spend time there, “chatting” with other programmers and creating het own work. She has been spending a lot of time there recently.

11. What qualities seem to make your child different from other children?

Very sensitive, empathic, and insightful. She has an intuitiveness that seems to be unique. She has always been an “old soul.” In the same vein, she has trouble letting things “roll off her back” and gets upset easily even in anticipation of possible problems that have not happened. Her anxiety is increasingly setting her apart from her peers as are her learning challenges.

12. How does your child cope with school, school work, study, deadlines, speaking in front of others, following directions etc?

School is a disaster. She has significant and complex learning disabilities, which are often misunderstood/under appreciated because she is very bright, verbal, and an advanced reader so when she has extreme struggles with math, writing, and spelling it is often assumed that it is a reflection of poor effort/behavior rather than a lack of ability. She is angry about not being believed/helped and this is resulting in increased belligerence, resistance, and school avoidance. She has difficulty following directions. Not sure if this is a processing problem, a reflection of impulsivity/inattention, or oppositionality.

13. What kind of questions does he/she tend to ask you or other adults?

She asks me what is wrong with her/why she is not normal. She asks if she will be able to have a job when she grows up; if she will be able to work if she doesn’t go to college. I’m not sure what types of questions she asks adults, but she generally feels comfortable speaking with adults and is a great conversationalist.

14. What makes her/him laugh? What makes him/her cry?

Laugh: Cleverness/wit, goofiness. Cry: people being unkind, anxiety, empathy, sometimes out of nowhere.

15. What makes him/her angry or irritable?

Ugh, seemingly everything; rules, directions, “have to”s, expectations, anxiety, judgment or perceived judgment, feeling misunderstood/unheard, things not going as expected, things not feeling “right,” etc.

16. What does your child do when alone?

read, watch tv, play on computer, sing, eat things she shouldn’t (candy, junk food, etc.,) explore “forbidden” things (e.g. mom’s clothes/makeup, extra tv/computer time, etc.)

17. Is there a particular person or type of person that he/she reacts to, and what kind of reaction? As a young child, was terrified of men with facial hair, especially beards (would cry/avoid). Doesn’t like loud/frenetic/high energy people, even if they are animated in a friendly/happy way. She will shut down, be rude, act annoyed, or avoid these people (is overwhelmed by them). She doesn’t like people who make presumptions about her; gets suspicious/paranoid about people who use “soft sciences”/alternative energies. She likes people who are low key/nurturing/feel safe and predictable. She tends to 'torture' her immediate family members. She will try to push our buttons relentlessly when she is upset.


GENERAL STATE OF YOUR CHILD

1. What position does he/she sleep in? Moves around a lot when sleeping. No specific position. When falling asleep she has her head on her pillow and her hands under her pillow or she can’t sleep. Throughout the night she is all over the place.
2. Is there any position he/she seems unable to sleep in? No
3. Any unusual behavior during sleep? Unusually active (tossing and turning). Sometimes grinds teeth.
4. Any problems with sleep? Sometimes has trouble falling asleep (better lately). Sometimes avoids falling asleep because of fears or desire to prolong time without/avoid school the next day
5. What foods are craved (cravings are strong desires) What foods are hated? gluten, dairy, sugar are craved (and sometimes binged on). Sometimes craves sodas or hamburgers. Hates microwaved broccoli (but likes it in other forms like roasted), peanuts or peanut butter, most any breakfast food, store-bought applesauce (but likes homemade), bananas, frozen blueberries (but likes fresh), oranges.
6. What drinks are craved? What drinks are hated? Generally just drinks ice water and herbal tea (usually the former). Craves sugary drinks (sodas, juice though).
7. How does he/she react when hungry, or hunger is prolonged? She can become voracious, eats, often grabbing sweets/junk vs. more nutritious foods. She gets irritable when hungry. By history she would get headaches/nauseated when blood sugar got low.
8. How does the weather affect?
Sensitive to changes in weather and barometric pressure. Impact sleep (sleeplessness), cause irritability
9. How does the temperature affect?
Same as above, especially more extreme transitions like summer to fall or winter to spring.
10. Are there any other environmental influences negative or positive (season, noise, music, moon, light, dark, day, night, time, smells etc.)
Anxiety builds at night (more time to think/process; reports more “visions” at night). Sensitive to smells in general.
11. Problems with stool or bowel habit?
Problems with urine or bladder habit?
Has been chronically constipated since she started on solid foods at 7 months old (see above). Symptoms generally well controlled with diet, probiotics and magnesium supplements. History of hemorrhoids/bleeding. Still has occasional bright red blood in toilet bowl with stool. Sometimes with pain, sometimes without. By history had difficulty with nocturnal enuresis (was wet every night until age 7 years, after which time was always dry at night; no accidents).
12. Where does he/she sweat most? Does it stain or smell unusual?
Underarms.