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Old 03-12-2018, 04:46 PM
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I need a life rant....

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Because I feel like bursting into tears but my 9yr old is home and I don't want to upset her. I intended on just ranting but heck, this is the internet! Throw all of your ideas, opinions, Dr. google diagnoses at me! May as well brainstorm while we're at it.

I am a Mum and a wife. I work from home very part time, and have been retraining for my post kid rearing career by working towards my degree from home. My husband is a research engineer and paid well enough. We live in a brilliant small town. The children are at a great school. We are in very blessed circumstances to be facing such a crappy situation.

Miss 9 has always been an intense kid. She had colic for the first 6 months, could write her name ten days before her second birthday, spent the first 6 weeks of her formal schooling refusing to move from under the table, is academically well above her peers, but also very strong socially and athletically. Sounds like a brag session, but to understand the other side of it you need to hear this, too.

Last year, she had a run of the mill, every kids gets it kind of virus. It morphed into a secondary infection, before she was lumped with post-viral fatigue. As a kid, intense as she was, she never got the tonsilitis, ear ache, small child run of normal ailments. This was the first big crash.

Ever since, she's been fighting her body. When she's well she's really, really well and excelling at crazy levels. Then when she's sick, it's often and it's dramatic. She gets horrific headaches, sensitive to light, crazy fatigue etc. Today, she's home because her muscles are inflamed and she just. feels. stiff. Her teachers support the notion that it's health, not social/life issues, and it's for real. Her doctor is great, but her bloods are normal. No vitamin deficiencies, serious illnesses etc.

She needs to learn to pace herself, and she is getting better at it, but it's more than that.

I was thinking about going back to work outside of the home next year, our other child is 7 and I miss it. But I think we're in for the long haul.....

We're off to the Islands for a week soon. I hope she has the strength to handle it.
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Last edited by itchyfeet; 03-12-2018 at 11:31 PM. Reason: Spelling and grammar.
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Old 03-12-2018, 04:55 PM
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Re: I need a life rant....

Wow. I cant even imagine your situation and how concerned you must be for little 9. I think Id tell you the same thing wed all say if this was a fid. Find the human equivalent of a Certified Avian Vet (ie make your regular doc refer her to a specialist) and see if you cant get some answers.

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Old 03-12-2018, 08:18 PM
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Re: I need a life rant....

That’s frightening. Not sure where you are from ...Middle Earth sounds like NZ to me ...do you live, or have you visited, a place that has ticks?

My best friend got a flue one Thanksgiving, that turned into bronchitis, and she never really recovered from it. She finally developed what they called Chronic Fatigue Syndrome, though she didn’t have all the markers. She would go from good to exhaustion, not able to breathe. She tried every treatment she could find including having needles poked into her chest wall muscles to “break up the adhesions”. She always maintained that the flue episode was the start of it all. Finally ... like 15 years later ... she got a new doctor who said, you know, I just read this article about Lymes Disease, that it can mimic other diseases. He sent her for testing and she was loaded with it. Had rounds of heavy duty antibiotics, some as an inpatient. It took a long time but she finally got almost cured. Nowadays we know that Lyme’s Disease is a spirochete that takes refuge inside the cells, and can have different faces depending on the host cell. For example, it can hide in the lungs and mimic a pneumatic illness, or in the nerves and mimic MS. Turns out the first sign of the disease is often a flue like, feverish illness that gets better, and then the real problems can take weeks or days or months to manifest.

Even if there are no ticks in your area, maybe one hitched a ride in fro elsewhere? Even a very young tick can transmit disease. What you describe sounds eerily close to what happened to my best friend.
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Old 03-12-2018, 08:59 PM
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Re: I need a life rant....

Like stated above, really need to push for a specialist. Possible an Immune System Specialist. The rapid ups and downs, kind of indicates that something is either wrong with the Immune system or playing hardball with it.

Today, there is no place that is safe from the ever expanding list of globe trotting virus. Lymes Disease is one, but far from the only virus that is just showing-up where there is no commonly found hosts (carriers).

My heart is with you!

FYI: If you are not keeping a journal (logbook), please start. This will allow connections that one's memory will never be able to make.
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Old 03-12-2018, 11:44 PM
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Re: I need a life rant....

You may have to strongly advocate for her primary doctor to think outside the box and bring specialists into the mix. What you describe may well be Lyme Disease or something exotic, depending on your locale. But today, pathogens and critters are global, so it is necessary to widely cast the net.
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Old 03-13-2018, 07:08 AM
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Re: I need a life rant....

I am sorry your daughter has been unwell. That must be terrible for you as her mother not knowing whats wrong

Off the top of my head, I cannot think of the specific names but there are several autoimmune conditions that can develop after a viral illness where the body begins attacking itself and can produce the symptoms you describe your daughter having. I don't believe standard blood tests would look for that kind of thing either as it's a fairly uncommon thing to develop. Another thought- did your daughter receive a vaccination anytime around when the symptoms started? The viral illness may simply have been a coincidence. I (most likely) had a reaction after getting one of the hepatitis vaccines and I was around your daughters age, maybe a few years older. I was very fatigued and generally unwell for months afterwards. Didn't connect connect that period back to the vaccine (my parents assumed it was some kind of 'growing pains' thing at the time) until years later and people started talking about adverse vaccine reactions publicly and a lightbulb went off. Vaccines are also now thought to trigger an autoimmune response in some people as well.

If it were my kid, I'd be taking her to a new doctor if the current doctor is just writing it off. Trust your instincts as a parent and don't let lazy doctors bully you out of seeking other opinions because they can't be bothered or simply don't have the knowledge to correctly diagnose what is wrong. DO NOT PUT UP WITH BAD DOCTORS. You know more than any doctor if something is well and truly wrong with your own child. The doctors job is to find out what's wrong and if they aren't up to the task, keep looking until you find one who is. I hope you can figure this out soon!

Last edited by Kiwibird; 03-13-2018 at 07:40 AM.
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Old 03-13-2018, 08:05 AM
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Re: I need a life rant....

Good avenues to explore.
Best of good luck to you and yours.
Hang in there!
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Old 03-13-2018, 08:31 AM
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Re: I need a life rant....

Sounds like lyme.

I hope you guys figure it out.
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Old 03-13-2018, 04:06 PM
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Re: I need a life rant....

Thanks heaps everyone. Have my act together today, feel much better about it all.
I think, what gets to me most is that she isn't 'really really' sick, she's not got cancer etc. So I get the guilts for feeling like the world is crumbling a bit. And then, each time a test is negative, I feel a little defeated, like it's all in my head. I guess she's become one of these 'invisible illness' types. Then I feel guilty about that too, because at least she's not suffering from whatever the latest negative was!

I did some more research on Lyme disease. So far, the cases confirmed in NZ (Correct, Kentuckienne ) are all of people who contracted the disease whilst overseas. She's only been to Western Australia once, 4ish years ago. Supposedly whether Lymes is there yet is a controversial topic, but I don't remember anyone getting any kind of bites whilst we were there.

It didn't kick in at the time of an immunisation, but it did with an initial virus so I'm leaning towards an autoimmune response. She really does read like a kid with fibro, and my mother has been diagnosed with it....a genetic connection is unconfirmed.

I only started keeping the diary this year, but next month will mark a year of it, and so I think we'll get our referral soon. The public health system here is of high class, but there will still be a decent wait time with the specialist.

Her doctor is awesome. She's responsive and doing everything in her power. I think it's difficult to really dignose/firm a real pathway moving forward because of the inconsistencies in what is going on, and her age. She's 9...no one wants to diagnose a nine year old kid with CFS/ME/nervous system/autoimmune issues. She's tall and lanky. Her dtr knows her well, she's a parent at the school and so seen her at her best as well as her worst, but I kind of assume a specialist is going to call it growing pains, once we get there. Appointment tomorrow so we'll see how that goes.

Thanks everyone, for letting me process and let of some steam.
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Last edited by itchyfeet; 03-13-2018 at 04:09 PM.
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Old 03-13-2018, 04:46 PM
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Re: I need a life rant....

Quote: Originally Posted by itchyfeet View Post
Thanks heaps everyone. Have my act together today, feel much better about it all.
I think, what gets to me most is that she isn't 'really really' sick, she's not got cancer etc. So I get the guilts for feeling like the world is crumbling a bit. And then, each time a test is negative, I feel a little defeated, like it's all in my head. I guess she's become one of these 'invisible illness' types. Then I feel guilty about that too, because at least she's not suffering from whatever the latest negative was!

I did some more research on Lyme disease. So far, the cases confirmed in NZ (Correct, Kentuckienne ) are all of people who contracted the disease whilst overseas. She's only been to Western Australia once, 4ish years ago. Supposedly whether Lymes is there yet is a controversial topic, but I don't remember anyone getting any kind of bites whilst we were there.

It didn't kick in at the time of an immunisation, but it did with an initial virus so I'm leaning towards an autoimmune response. She really does read like a kid with fibro, and my mother has been diagnosed with it....a genetic connection is unconfirmed.

I only started keeping the diary this year, but next month will mark a year of it, and so I think we'll get our referral soon. The public health system here is of high class, but there will still be a decent wait time with the specialist.

Her doctor is awesome. She's responsive and doing everything in her power. I think it's difficult to really dignose/firm a real pathway moving forward because of the inconsistencies in what is going on, and her age. She's 9...no one wants to diagnose a nine year old kid with CFS/ME/nervous system/autoimmune issues. She's tall and lanky. Her dtr knows her well, she's a parent at the school and so seen her at her best as well as her worst, but I kind of assume a specialist is going to call it growing pains, once we get there. Appointment tomorrow so we'll see how that goes.

Thanks everyone, for letting me process and let of some steam.


Please keep us posted!


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