What do these symptoms sound like to you? - Mothering Forums

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#1 of 8 Old 12-05-2012, 11:46 AM - Thread Starter
 
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My 9 year old has struggled almost her entire life with this "condition, " which started after a vaccine reaction.

She has seen a specialist who helped us pinpoint a good treatment for her heavy-metal toxicity, and the treatment (mainly natural lithium supplementation) has helped considerably.

However, we still see symptoms. She's never seen a developmental ped, mainly because her early pediatricians tried to deny that she had issues and would not refer us. We didn't understand our rights and how to advocate for our child, so we simply left the practice and didn't look back. We no longer seek conventional medical care (and are healthier for it).

Anyway, since mothering parents are so well informed, I wanted to ask here what jumped outat you when you read these symptoms :

- these symptoms cycle in and out. Usually she'll have one or two "good" weeks, followed by one or two "bad" weeks. Typically there is a "calm before the storm," 1 or 2 REALLY good days, followed by a sudden downward spiral.

- good days: level mood, level personality. Reasonable, logical, satisfied, pleasant to be around. Calm, even physical presence. Attentive. Understands and follows conversation. Does well in school. Has excellent handwriting. Seeks out age-appropriate games such as checkers/chess, artwork, hide and seek, etc...and has a good attitude win or lose. Seems happy, but not "too happy," if that makes sense. Just a normal 9 year old kid.

- bad days: we call these her "off" days. She has extreme highs and lows...she can be very happy one minute, and then one little disappointment can set her off, and she crashes. She will suddenly be angry and upset, unreasonable, explosive. Her happy times seem off...like she's hiding her true anxieties with a mask, which she'll drop at any moment. She is sensory seeking...goes out to jump on our trampoline often. Watching her jump, my husband and I can tell if it's a good or bad day. Good day, she jumps like any other kid...face is happy but level, bounces are controlled. Bad day, she looks awkward and strange. She thrashes about. Swinging her head around, jerking and shrugging her shoulders, she just looks so odd. It's not "her," even though we see this behavior about as much as we see "normal" Emma behavior. Walking through the house, she bumps into the walls and furniture frequently. Almost as if she's drunk. She talks to herself. Has facial and verbal tics. Her playing is infantile...she wants to drag out all of her 20 or so "lovies" which she collects, and plays pretend with them in a very baby-ish manner, using obnoxious baby voices which have a distinct anxious tone. School performance is off during this time, her handwriting is poor and her grades suffer. Her grades are ok...nearly makes the A-B honor roll each time, but this is because she has nearly perfect schoolwork for 1 or 2 weeks , followed by a week or 2 of C's and D's...with a couple of F's mixed in.

Teachers don't really seem to understand...probably because we have no formal diagnosis to offer besides lab-confirmed heavy metal toxicity, which they aren't sure what to do with.

What diagnosis would you predict she might be given?

The 1-2 week cycling is pretty constant, and we can't pinpoint any triggers. Occasionally she'll last 3 or 4 weeks before crashing, but that is rare.

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#2 of 8 Old 12-05-2012, 03:45 PM
 
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They kind of sound like bipolar, which I'm sure you already thought of, but they seem off some how.  And I know NOTHING about mental illnesses.  Nothing.

 

The other think I thought of was some sort of parasitic infection and her cycles were somehow following some parasite cycle.  Or maybe some latent toxoplasmosis infection reaction. 

 

I don't know.  Sorry, if anything maybe this will keep your post near the top :)


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#3 of 8 Old 12-05-2012, 04:24 PM
 
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My two, fairly uninformed, thoughts.

 

1. Does she have any digestive problems?  I only ask because Giardia (an intestinal parasite) has a two week cycle.  Might be worth checking out.

 

2.  I'm not well educated about bipolar disorder but what you describe sounds very much like my friend who is also bipolar.  The only thing I can add is that her parents kind of let it slide all the way into adulthood and it was very bad for her.  She eventually dropped out of school and was kind of a mess.  She finally got herself to a therapist and got herself on medication and she is now married and runs the tech division of a fortune 500 company.  I totally understand if you want to avoid traditional medicine, but I would encourage you to at least seek out a developmental ped and try to get a better sense of what is going on.  My friend is also very weary of the medical world but she claims she simply can't function without her medication. 

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#4 of 8 Old 12-05-2012, 04:51 PM - Thread Starter
 
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Quote:
Originally Posted by Ethelpea View Post

They kind of sound like bipolar, which I'm sure you already thought of, but they seem off some how.  And I know NOTHING about mental illnesses.  Nothing.

The other think I thought of was some sort of parasitic infection and her cycles were somehow following some parasite cycle.  Or maybe some latent toxoplasmosis infection reaction. 

I don't know.  Sorry, if anything maybe this will keep your post near the top smile.gif


Thanks!!

You're right about bipolar seeming off in this case...I've had the exact same thought. I think it's because her "on" weeks are normal, while her "off" weeks seem bipolar, with drastic highs and lows. I don't think bipolar patients typically "stop" having symptoms for regular periods of time...but I could be wrong...?

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#5 of 8 Old 12-05-2012, 05:15 PM - Thread Starter
 
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Originally Posted by fizgig View Post

My two, fairly uninformed, thoughts.

1. Does she have any digestive problems?  I only ask because Giardia (an intestinal parasite) has a two week cycle.  Might be worth checking out.

2.  I'm not well educated about bipolar disorder but what you describe sounds very much like my friend who is also bipolar.  The only thing I can add is that her parents kind of let it slide all the way into adulthood and it was very bad for her.  She eventually dropped out of school and was kind of a mess.  She finally got herself to a therapist and got herself on medication and she is now married and runs the tech division of a fortune 500 company.  I totally understand if you want to avoid traditional medicine, but I would encourage you to at least seek out a developmental ped and try to get a better sense of what is going on.  My friend is also very weary of the medical world but she claims she simply can't function without her medication. 

Thank you! She doesn't have digestive problems, but she does wet the bed. My girls also have suffered bouts of pinworms (older 2 girls). But my middle child has never had any of the mood issues that my oldest has had, so I don't feel like pinworms is the likely culprit here- at least not the only one. I'll check into the other parasite you mentioned. I do think her issues resemble bipolar , but the regular cycling in and out, with extreme highs and lows appearing only during her bad weeks, puzzles me.

My thought on the whole thing, honestly, is that she's part-time spectrum. Her bad weeks look very much like aspie/autism...but do spectrum kids ever "turn off"their autism for days or weeks at a time? Our former pediatrician assured us that they do not, and brushed off our concerns altogether. But that was several years ago. This whole cycling in and out started immediately after her 4 month set of shots, at which time her bad days involved prolonged screaming, head-banging, clawing repeatedly, weird eye motions, and what we now know (thanks to youtube) were infantile spasms. She had good days in which she was back to her pleasant, happy, calm self. Eventually her bad days evolved into lining up toys when playing (which she still does to this day on bad days) and losing eye contact, along with explosive tantrums, sensory behavior and extreme highs and lows.

My child has had these issues part time since infancy. What gives?!

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#6 of 8 Old 12-05-2012, 05:43 PM
 
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My 3yo shows some similarities to your DD, bipolar (among other things) has also been suggested for him but just doesn't seem right. We are getting a full neurodevelopmental evaluation done, without our pedi's approval lol... we do NOT have good luck with pediatricians and I understand your frustration!! We finally decided to bypass him and take the advice of DS's therapist & others involved in his life and get the evaluation without the referral. I do believe that mamas know when something isn't quite right, and we just have to keep pushing (or work around) the doctors. So that's my long-winded way of suggesting you take her to a developmental or neurodevelopmental specialist.

The only things I can think of that maybe could cause the variation in symptoms would be seizure activity (probably unlikely but for some reason I feel compelled to mention it), sensory issues, or food intolerances. Have you tried tracking everything for a month or two? I would track symptoms/issues/behaviors alongside what she's eating, how much she's sleeping, any changes in her environment or routines, bowel movements (I notice DS is worse when he hasn't had a bowel movement in a couple days, even though he isn't constipated), changes in school (vacations etc.) and extracurriculars...

And what about hormone levels? Have you had hers tested? I ask because roughly 1-2 week cycles kind of mimic the changes throughout the menstrual cycle (for ex., my doctor is testing me for hormonal issues because I have symptoms of fatigue & pain that get way worse for the first 2 weeks or so of my cycle). I have no idea if something like this would manifest in a 9yo but just thought I'd throw it out there...

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#7 of 8 Old 12-05-2012, 05:46 PM
 
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Also, is she still on the lithium supplements? Did she have the symptom cycling before starting those supplements? I've never heard of lithium *causing* bipolar but I wonder if it's possible, the way some claim Ritalin causes ADHD symptoms if you take it when you don't have ADHD??? (I could be wayyyy off base here...)

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#8 of 8 Old 12-06-2012, 03:51 PM
 
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I would also look into PANDAS/PANS...even if she doesn't have the classic sx (sudden onset; recent strep, etc)...the tics, baby talk, handwriting changes, mood lability are all commonly seen in kids w/ PANS. Lyme also causes many neurological sx in kids...feel free to PM me...my child had many of the same sx (was dx w/ anxiety and as on the spectrum, and I suspected she was bipolar...most of her sx are gone now that we are treating for PANS...)
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