MY CHILD'S SYMPTOMS

[Wilma Jenks]

• Doesn’t get what your saying.

• Ticks. Clicks her tongue a lot when agitated.

• Hates her body/herself and people. Scratches off moles.

• Doesn’t like little girls if they are not pretty, and feels very confused about it.

• Everything irritates her. It is like she is in a phone booth with a million flies on her.

• Bumps into everything, like a bull in a china shop.

• Odd sexual behavour. Touching herself and licking fingers

• Firing obsessive thoughts at night (keeps having to say the same thing over and over or she can’t sleep) thoughts come so quickly-that she had to keep saying...I will tell you later….I will tell you later….

• Lots of imaginary friends. Can’t play or talk to other people, because she is so deep with these friends.

• Obsesses about getting old. Gets violent if you tell her she is getting big.

• Worries about parents/herself getting hurt. Won’t try most activities because of this.

• Argues non-stop-can’t take NO for an answer.

• Incredible senses. Can smell her friend down the street. No kidding!

• Gets mean in stores. Confused and agitated.

• Mad when people stare at her. Thinks everyone is looking at her, and hates it.

• Watches TV with door closed, doesn’t want parents or anyone around.

• Sugar level is erratic.

• Can not sit and eat dinner with family…too wiggly.

• HATES change. Won’t even try new movies….most times.

• Doesn’t like grown-ups or teachers.

• Very distorted thinking

• Doesn’t play games

• Can’t do school work

• Teases dog all day. Threw dog down stairs.

• Races all day

• Doubts that we love her.

• Watches TV and colors in shapes on a page with markers. Doing 2 things at once calms her.

• Doesn’t want anyone to know she listen to music. Hides in the closet when she eats.

• Takes hours to get her out of the house

• Bad memory/concentration

• ALL foods make her worse

• Can’t transition. Hates change.

• Switches constantly

• Fine in the morning and then switches and becomes agitated.

• Blurry vision but gone.

• Insomnia. Severe.

• Wet vagina. Constantly wiping. Went away with yeast treatment. OCD or sensory.

• She can eat a grain of sugar (even fruit) and be up all day and night from the high.

• Chemical sensitivities

• at night she always gets worse.

• Early puberty: pubic hair and underarm odor in 1st grade.

• Diagnosed with restless leg syndrome

• Home-schooled because of impulsivity and distorted thinking.

• Dehydrated

• Complained of sore ankles since she could talk.

• Brain won’t stop at night and feels like its on fire she said. (gets to sleep at 1am, most nights)

• Can’t stop washing her hands…. They feel sticky.

• Cutting hair off of legs. Sits home all day and cuts body hair off when not on meds/supplements. Some supplements trigger this off too.

• Attacks me. Spits and scratches.

• Can’t get her off the couch until 5PM.

• She races around the house, breathing heavy and firing off thoughts non-stop..

• Gets all unfocused at ice skating rink if there is too much noise. Same with large groups of children.

• She never ever gets sick. I think she had a cold 2x’s in her life. I was the same way. (her mom). After chelation she started to get sick.

• Can’t shower. Hates feel of water on body.

• Anxiety about horse show. Quits everything she starts if it gets challenging. Anxiety builds.

• Squeezes people.

• Looks for vibrator and is super agitated.

• Screams she is fat, and that moles on her body are ugly.

• Doesn’t follow directions.

• Can’t be looked at.

• Wakes at the drop of a hat.

• Wanted to burn her fingers on the stove

• Feet/toes go a mile a minute

• Looking at her mom irritates her.

•

• Lots of bad thoughts at night.

•

• Wants me to like Demi Lavato, just like she does.

• Can’t touch her yet she likes to play rough.

Edited December 3, 2010 by Wilma Jenks

[butterflymom]

=

Edited February 2, 2016 by tampicc

[PhillyPA]

Your daughter saw Dr. T, right? What did Dr. T think about her symptoms?

[Johnsmom]

Phew! Lots going on here. Two things that jumped out at me. Her sense of smell and chemical sensitivities. My kid can smell things that are sealed in a Tupperware container in another room. This it yeast overgrowth for us. Sounds like you have a lot more than that though. Even though she may not have discharge, the yeast could still be in her system. As soon as I took my son of augmentin his behavior improved dramatically. I think it was causing yeast overgrowth. Other bacterias like clostridia and klebsiellia can cause aggression. Have you done any stool testing recently. It just sounds like she has Sooooo much going on. What is she taking now?

 

Praying for you

 

Johnsmom

[thereishope]

The red ones are the similarities to my son.

 

As for the wet vagina, have you ever had her swabbed down there for vaginal strep when that happens?

 

 

• Doesn’t get what your saying. • Ticks. Clicks her tongue a lot when agitated.

• Hates her body/herself and people. Scratches off moles.

• Doesn’t like little girls if they are not pretty, and feels very confused about it.

• Everything irritates her. It is like she is in a phone booth with a million flies on her. • Bumps into everything, like a bull in a china shop.

• Odd sexual behavour. Touching herself and licking fingers

• Firing obsessive thoughts at night (keeps having to say the same thing over and over or she can’t sleep) thoughts come so quickly-that she had to keep saying...I will tell you later….I will tell you later….

• Lots of imaginary friends. Can’t play or talk to other people, because she is so deep with these friends.

• Obsesses about getting old. Gets violent if you tell her she is getting big.

• Worries about parents/herself getting hurt. Won’t try most activities because of this. • Argues non-stop-can’t take NO for an answer.

• Incredible senses. Can smell her friend down the street. No kidding! • Gets mean in stores. Confused and agitated.

• Mad when people stare at her. Thinks everyone is looking at her, and hates it. • Watches TV with door closed, doesn’t want parents or anyone around.

• Sugar level is erratic.

• Can not sit and eat dinner with family…too wiggly. • HATES change. Won’t even try new movies….most times.

• Doesn’t like grown-ups or teachers. • Very distorted thinking

• Doesn’t play games • Can’t do school work

• Teases dog all day. Threw dog down stairs.

• Races all day

• Doubts that we love her.

• Watches TV and colors in shapes on a page with markers. Doing 2 things at once calms her.

• Doesn’t want anyone to know she listen to music. Hides in the closet when she eats. • Takes hours to get her out of the house

• Bad memory/concentration • ALL foods make her worse

• Can’t transition. Hates change.

• Switches constantly

• Fine in the morning and then switches and becomes agitated.

• Blurry vision but gone.

• Insomnia. Severe.

• Wet vagina. Constantly wiping. Went away with yeast treatment. OCD or sensory.

• She can eat a grain of sugar (even fruit) and be up all day and night from the high.

• Chemical sensitivities

• at night she always gets worse. • Early puberty: pubic hair and underarm odor in 1st grade.

• Diagnosed with restless leg syndrome

• Home-schooled because of impulsivity and distorted thinking.

• Dehydrated

• Complained of sore ankles since she could talk.

• Brain won’t stop at night and feels like its on fire she said. (gets to sleep at 1am, most nights)

• Can’t stop washing her hands…. They feel sticky. • Cutting hair off of legs. Sits home all day and cuts body hair off when not on meds/supplements. Some supplements trigger this off too.

• Attacks me. Spits and scratches.

• Can’t get her off the couch until 5PM.

• She races around the house, breathing heavy and firing off thoughts non-stop..

• Gets all unfocused at ice skating rink if there is too much noise. Same with large groups of children.

• She never ever gets sick. I think she had a cold 2x’s in her life. I was the same way. (her mom). After chelation she started to get sick.

• Can’t shower. Hates feel of water on body.• Anxiety about horse show. Quits everything she starts if it gets challenging. Anxiety builds.

• Squeezes people.• Looks for vibrator and is super agitated.

• Screams she is fat, and that moles on her body are ugly.

• Doesn’t follow directions.

• Can’t be looked at.

• Wakes at the drop of a hat.

• Wanted to burn her fingers on the stove

• Feet/toes go a mile a minute

• Looking at her mom irritates her.

• Stuck at Doe Doe’s and then Gary’s

• Lots of bad thoughts at night.

• Says good night to Hank the same way every night.

• Wants me to like Demi Lavato, just like she does.

• Can’t touch her yet she likes to play rough.

Edited December 3, 2010 by Vickie

[Wilma Jenks]

Sounds like PANDAS to me. Have you discussed with a doctor, preferably one of the PANDAS specialists? Have you tried any treatments yet, supplements or abx? have you tried ibuprofen to see if it helps her?

 

 

Tried motrin and it did not help. Would that mean it is not PANDAS?

[mama2alex]

Welcome to the forum. You will find lots of good information and support here!

 

With this many symptoms, including physical, cognitive, psychological, hormonal, behavioral, digestive, motor/neurological, etc, my recommendation is to have her completely checked for multiple infections. Off the top of my head, I'd say strep, Lyme, Lyme coinfections such as Bartonella/Babesia, Mycoplasma, viruses, plus mold, food allergies, yeast, leaky gut, heavy metal toxicity and whatever else the doctor thinks is warranted. She quite possibly has multiple infections and/or allergies/sensitivities going on, and you will need a doctor experienced in dealing with all of these to help you if that's the case. A good Lyme-literate doctor would be able to test for all of the above and sort out which medications are needed to treat which infections. You can find an experienced, ILADS-trained Lyme-literate doctor by posting on the Latitudes Lyme forum, or emailing ILADS (International Lyme and Associated Diseases Society). Don't let the name fool you - the good ones will look at more than Lyme and will consider everything that's possibly causing her many symptoms. The key here is comprehensive testing, not just going to a doctor who's dealt with one type of illness and having them say "Oh, it looks like X."

[thereishope]

Motrin is one of those things that if it helps, it indicates possible inflammation. If it does not help, it does NOT rule out PANDAS. With my son, it did not help when he was in a full exacerbation, but it did help when he had setbacks with viruses and allergies.

 

Sounds like PANDAS to me. Have you discussed with a doctor, preferably one of the PANDAS specialists? Have you tried any treatments yet, supplements or abx? have you tried ibuprofen to see if it helps her?

 

 

Tried motrin and it did not help. Would that mean it is not PANDAS?

[Wilma Jenks]

Welcome to the forum. You will find lots of good information and support here!

 

With this many symptoms, including physical, cognitive, psychological, hormonal, behavioral, digestive, motor/neurological, etc, my recommendation is to have her completely checked for multiple infections. Off the top of my head, I'd say strep, Lyme, Lyme coinfections such as Bartonella/Babesia, Mycoplasma, viruses, plus mold, food allergies, yeast, leaky gut, heavy metal toxicity and whatever else the doctor thinks is warranted. She quite possibly has multiple infections and/or allergies/sensitivities going on, and you will need a doctor experienced in dealing with all of these to help you if that's the case. A good Lyme-literate doctor would be able to test for all of the above and sort out which medications are needed to treat which infections. You can find an experienced, ILADS-trained Lyme-literate doctor by posting on the Latitudes Lyme forum, or emailing ILADS (International Lyme and Associated Diseases Society). Don't let the name fool you - the good ones will look at more than Lyme and will consider everything that's possibly causing her many symptoms. The key here is comprehensive testing, not just going to a doctor who's dealt with one type of illness and having them say "Oh, it looks like X."

I have tested for heavy metal (hair tests.) Did chelation for awhile with no success. Tested for strep, I think Lyme. Not sure about the bartonella/babesia, mycoplasm allergies. I think I tested for everything.

[EAMom]

What strep test(s) did you do? Titers? Cultures? I agree that vaginal strep is a possibility. Strep can be in non-throat locations (including vagina, sinuses, skin) so a throat culture could be neg . Also lots of PANDAS kids have neg. strep titers (but they can be worth running if you don't have positive cultures). I would also recommend getting throat cultures on family members.

 

I would rec. listening to these podcasts: http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

 

and here is a thread of FAQ's http://www.latitudes.org/forums/index.php?showtopic=6266

 

Is she on antibiotics? Which one and what dose?

 

 

BTW, can you find a temporary (foster) home for your dog until your dd is better? Poor thing.

[Wilma Jenks]

What strep test(s) did you do? Titers? Cultures? I agree that vaginal strep is a possibility. Strep can be in non-throat locations (including vagina, sinuses, skin) so a throat culture could be neg . Also lots of PANDAS kids have neg. strep titers (but they can be worth running if you don't have positive cultures). I would also recommend getting throat cultures on family members.

 

I would rec. listening to these podcasts: http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

 

and here is a thread of FAQ's http://www.latitudes.org/forums/index.php?showtopic=6266

 

Is she on antibiotics? Which one and what dose?

 

 

BTW, can you find a temporary (foster) home for your dog until your dd is better? Poor thing.

Dog is safe now.

[Wilma Jenks]

What strep test(s) did you do? Titers? Cultures? I agree that vaginal strep is a possibility. Strep can be in non-throat locations (including vagina, sinuses, skin) so a throat culture could be neg . Also lots of PANDAS kids have neg. strep titers (but they can be worth running if you don't have positive cultures). I would also recommend getting throat cultures on family members.

 

I would rec. listening to these podcasts: http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

 

and here is a thread of FAQ's http://www.latitudes.org/forums/index.php?showtopic=6266

 

Is she on antibiotics? Which one and what dose?

 

 

BTW, can you find a temporary (foster) home for your dog until your dd is better? Poor thing.

Dog is safe now.

[pathfinder]

Your best bet would be pursuing pandas/pit pathway. IMHO you could always go back to other conventional treatment but pandas have age limitation ( so I was told by very reputable pandas Dr) I see some of my son (9yrs of pandas) in your dd. My ds17 symptoms changed from one to another over the years which made me think at one time and another he had ADHD then Aspergers, bipolar, or TS but one thing and main thing he always had was OCD tendency. His brain got stuck and he suffered. We went through so many different combinations of medications but they did not work for us. Antibiotics and IVIG made a huge differences in my son's life. best wishes.