Would you take this child to a doctor?

[Pamela H in Texas]

And what would you hope to get out of such a doctor visit?

 

Well, I guess she's not so much of a child though. She'll be 18 next month.

 

Anyway, as most of you know, I have some significant health issues and I seem to have passed them on to my kids. Unfortunately, I have many dxes but not THE dx that causes the rest. That is also becoming my children's situation also :::tears:::

 

Anyway, so my 17yo has barely been able to walk across the house the last couple days. Her joints are killing her. Additionally, she's had some feeling like her leg being partially asleep but when it happens, we're talking HOURS, not minutes. These things get considerably worse as the day wears on. The one night, she was scared enough to consider the ER (however, we quit going to the ER for pain many many years ago).

 

So, my hubby wants to take her to the doc. I think it's a great idea. However, I think he believes he's going to go in there and they are going to tell him something and give her relief. Why he would believe this after the last 18 years is beyond me. Does he not remember the doc visits that started when she was ONE? Does he not remember her screaming in pain rolling around on the ground at 3, 5, 6 yrs old? And so on and so on. And the 18 years of all this with ME? And the doc writing off our son too?

 

I want to go to the doc. I want to get answers. But it just seems impossible. I don't want them to get their hopes up that this time will be any different.

 

This post is more of a vent about our stupid situation. We have some great docs who have REALLY cared and felt bad for us. But we still end up with multiple "little" dxes and can't figure out what is causing this or what can be done about it. They all know there is "that" dx out there, but can't figure out what it is.

 

But seeing a new doc means going through the issues of building that rapport. And some docs are just impossible to work with. They see young people and don't even think past that, I guess.

 

Sorry to vent.

 

So I'm thinking of having my daughter call VCU for a PCP referral (since we know nothing here). And she can set up an appt. No harm in trying and maybe they can give her something to help her feel more comfy (though non-narcotic, not prednisone would be nice).

[LizzyBee]

Aren't you in a different city now? I think I'd take her to the dr in hopes that a new dr in a different place would be able to help.

[lisamarie]

I probably would but would go into it knowing that a true diagnosis is unlikely. If your DD wants to go, then definitely. If she's reluctant about turning into a pincushion then I'm not sure I would force it unless it's debilitating. I assume you all have been tested for RA? That's the first thing that came to mind but since it's so obvious I can't imagine you haven't been tested for it yet.

 

In the mean time, I would continue to scour the internet looking for possible diagnoses to bring to the dr to request tests. Since you are in a new location, there is a chance that these new drs could find the problem since they have a different wealth of knowledge. Maybe that's part of why you all packed up and moved East.

[Pamela H in Texas]

Thanks y'all....

 

Lisa, the dx most related to these particular symptoms that she has is "benign" hypermobility syndrome. Our opinion? "benign my behind!" LOL

 

The issue is that we get dxes but they are all unrelated. Docs don't take in acct that there are THREE of us. Few seem to "get" that people don't have multiple different things wrong with them -- that there HAS to be an umbrella dx. The ones that DO get that have been unable to figure it out though they have their pet things of what it will "turn out" to be (Lupus being one thrown around for both dd and me).

 

But, we are in a whole new area. So maybe...In fact, one lady in my congregation said that someone who came here had had a situation like ours (many dxes, no answer) and got an answer and treatment and did well! We can hope :)

 

ETA: The only dx we've found online (and btw, from a couple people HERE, on THIS board!) was that it might be a mitochondrial disease. If I had to choose a problem, I'd choose one with a cure or REALLY good management options though.

Edited August 6, 2010 by 2J5M9K

[Mom0012]

Pamela -

 

I don't know what all your medical issues are, but have you ever seen a lyme literate doctor? There is a documentary about chronic lyme disease called Under Our Skin you might want to watch and see if it rings any bells for you.

 

I have chronic lyme and one of the red flags is joint pain. It often starts in the knees or ankles. That's where it started for me and then it worked its way up my body to my hips, wrists, elbows, shoulders and neck. Also, when I am not being treated, my arms "fall asleep" all night long. All the feeling will leave them and it will wake me up. I think it is because of the swelling in my shoulder joints.

 

Anyway, lyme is one of those things that can take years and years to get diagnosed unless you get lucky and get the right doctor. It can be passed on very easily to your children in utero. I never found a tick on myself and I have many friends with lyme who never did either, so don't let that rule anything out for you.

 

Of course, your daughter's symptoms may not have anything to do with lyme, but it might be worth looking into if you are having trouble getting a diagnosis because there are such a wide variety of symptoms associated with it.

 

Lisa

[Ottakee]

I am not a doctor but much of what you say fits a mitochondrial disorder---and yes, passed from mother to child. THey have ALL sorts of weird symptoms and can have "flares" as well. My daughter's (adopted but same bio parents) have 2 mito disorders and the older one even has a 3rd.

 

We had to do a muscle biopsy for the older one about 6 years ago but I think now they can test for at least some of them by blood work. You need a doctor (ours in a neurologist but some geneticists do it as well) that is very well versed in mito issues.

 

My girls take carnitine, Co Q 10 (600mg/day), a b-100 complex, Vit. E and D3, etc. all to help along with prescription meds.

[Pamela H in Texas]

Ottakee,

 

I tried to take the supplements last year...the WHOLE list from the UMDF website.

 

I don't know why it didn't just work <sigh>

 

But I didn't have scripts with it and I didn't have a doc helping...sooooooooooo

[Ottakee]

Ottakee,

 

I tried to take the supplements last year...the WHOLE list from the UMDF website.

 

I don't know why it didn't just work <sigh>

 

But I didn't have scripts with it and I didn't have a doc helping...sooooooooooo

 

 

Did you have the doses high enough? Did you have blood tests to see if you were at the right levels? Obviously you need a doctor for this.

 

Like the Co-Q-10. My 14dd takes 12 pills of this a day where the bottle might say 1-2 pills.

 

I am still learning about mito issues but it could be that if you have mito issue you need something different. We have POLG-1 and LHON and TK2 here.

[Pamela H in Texas]

Ottakee,

 

No blood tests regarding levels....I used the dosages (like you said, many times higher than what most people take) on the UMDF site. I think the CoQ10 1600 (four 400 pills, I think?). But with so many supplements, any combination of them could have been off and been an issue. I really need a doc.

[Night Elf]

They might not help, but what if they do? I agree with the poster who suggests going in with a realistic point of view. And if she is having bouts of really bad pain, prescription painkillers are nice to have sometimes. Over the counter painkillers don't always work for me. I like having something stronger on hand for when I really need it. The doctor could at least do that, at the very least.

[Starr]

Is she still young enough to take to the ER at a children's hospital when she's in pain crisis?

[Terabith]

Yeah, I'd take her. That sounds pretty debilitating, and maybe there will be someone new. :grouphug: Maybe she could get some medication.

 

Any diagnostic medicine people around? Kinda like House? :D I'm also wondering about mitochrondial or metabolic. Are there no drs around that would help with that? Any chance of you guys getting to Johns Hopkins/ Cinncinati/ Mayo, something like that?

[Supertechmom]

I had all sorts of issues until I went gluten free. They thought I would be in a wheelchair by 25 because the joint pain/swelling was so bad but I kept hobbling along. Fatigued, wiped out, pain, not sleeping....... Then we went gluten/dairy free for my daughter's sake. It took me nearly 8 months before I no longer had joint pain or those roll around on the floor days. But that was 8 months of fruit, plain meat, and plain veggies. No one connected all my various problems until long after I went gluten free. Now, if I cheat, I get the joint pain/swelling for a few days afterward.

 

:grouphug::grouphug: Health is so complicated

[wulfbourne]

I would go. I'm not sure I would hold out too much hope of a diagnosis (though with a different doc it could be different), but I would at least hope for some medication to control the symptoms or ease the pain.

 

I'm sorry you and your family have been going through this and hope that one day you'll find a true diagnosis.

[Cindy in the NH Woods]

Pamela -

 

I don't know what all your medical issues are, but have you ever seen a lyme literate doctor? There is a documentary about chronic lyme disease called Under Our Skin you might want to watch and see if it rings any bells for you.

 

I have chronic lyme and one of the red flags is joint pain. It often starts in the knees or ankles. That's where it started for me and then it worked its way up my body to my hips, wrists, elbows, shoulders and neck. Also, when I am not being treated, my arms "fall asleep" all night long. All the feeling will leave them and it will wake me up. I think it is because of the swelling in my shoulder joints.

 

Anyway, lyme is one of those things that can take years and years to get diagnosed unless you get lucky and get the right doctor. It can be passed on very easily to your children in utero. I never found a tick on myself and I have many friends with lyme who never did either, so don't let that rule anything out for you.

 

Of course, your daughter's symptoms may not have anything to do with lyme, but it might be worth looking into if you are having trouble getting a diagnosis because there are such a wide variety of symptoms associated with it.

 

Lisa

 

I was thinking the same thing, Lisa. Well put.

 

So sorry about your situation, Pamela~ chronic pain/illness is so hard! I pray you get the help your dd needs.

[LibraryLover]

Could she possibly have Lyme disease? Lyme can be difficult to diagnose.

[LibraryLover]

Ok, you've got it covered! Sorry to not have read ahead before posting.

 

Pamela -

 

I don't know what all your medical issues are, but have you ever seen a lyme literate doctor? There is a documentary about chronic lyme disease called Under Our Skin you might want to watch and see if it rings any bells for you.

 

I have chronic lyme and one of the red flags is joint pain. It often starts in the knees or ankles. That's where it started for me and then it worked its way up my body to my hips, wrists, elbows, shoulders and neck. Also, when I am not being treated, my arms "fall asleep" all night long. All the feeling will leave them and it will wake me up. I think it is because of the swelling in my shoulder joints.

 

Anyway, lyme is one of those things that can take years and years to get diagnosed unless you get lucky and get the right doctor. It can be passed on very easily to your children in utero. I never found a tick on myself and I have many friends with lyme who never did either, so don't let that rule anything out for you.

 

Of course, your daughter's symptoms may not have anything to do with lyme, but it might be worth looking into if you are having trouble getting a diagnosis because there are such a wide variety of symptoms associated with it.

 

Lisa