Joint Pains

[Guest guest]

Dear Lorri,

experiences most of his joint pain when he is not on IVIG. Just

recently he had episodes that involved his knee, then his ankle. He was sent

home from school cause he couldn't walk due to the pain. It would last about

an hour than disapear. He had swelling in the knee and ankle also. It was

off and on for about two weeks, we didn't know if today would be the day .

We have not had a problem this lat week. We took him to the ped and he was

baffaled blood work showed no infection, he said it was from the Pid.

When was first being diagnosed at stanford he was tested for Juvenile

Arthrities. As a matter of fact I remember we were at the Immunologist at

LPCH when his elbow began to swell and get hot...........in the doctors

office the doc walked into the clinic next door to see the arthrities

specialist and it was decided that it had to do with the pid

The joint swelling and pain is one of the reason they are putting ryan back

on IVIG.

Have you done your 504 for Jr High?

le I

[Guest guest]

,

Do you know or does anyone else know anything about joint pains. has

started getting pains in her knees and her wrist. They hurt so bad that I

thought she did something to them. The doctors can't find anything and they

set up test to check out different stuff but like always by time we get in

for the test the pain is gone. Does this go with CVID?

Thanks,

Lorri * 12 years old CVID

Re: Back on IVIG

[Guest guest]

I know that Lucas also complains of joint pain. He has not has swelling or

arthritis as far as we know. I know that rate is still a very big issue for

IVIG infusions and when we are having problems that is the first thing we do

for the next infusion. Reduce the rate of increase as well as the maximum

rate. We could not get Lucas over 35cc/hr until we started increasing by 4cc

every 5 minutes over the first 2 hours then up to 60-70 as a top rate. Before

we did this we found that Lucas had headaches, joint pain and was lethargic

after his infusions. The immunologist said that it was related to the rapid

crossing of the gammaglobulin in the brain and individual cells. This cause

more fragments to be assimilated and could cause irritation to the meninges

(menengitis (aseptic) and or headaches as well as joint pain. This was what

our doc told us and as long as Lucas has caffeine and we start very very

slowly we do great. BARBIE Lucas 6, CVID, asthma, sensory integration,

bipolar)

[Guest guest]

HI Lorri,

Yes the joint pain goes with the CVID. Hunter has had joint pain before he

was diagnosed. We were going to test him for Juvenile Arthritis. The joint

pain is a type of arthritis that occurs when the levels get low. Hunter woke up

on Wednesday with a 101.3 temp and such pain in his right knee that he couldn't

walk. He said everything hurt. We went in for his infusion that same day, and

he is doing much better. We don't know if the temp was related to a virus or

from the inflammation in his joints. I wonder if all kids have these symptoms?

I did read it somewhere when I was reading about CVID.

Temme-Dylan 9, Hunter 7 Agamma......

Re: Back on IVIG

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Lorri - two years ago Macey had a juvenile rheumatoid

arthritis workup because her joints ached so bad and

they would swell. She was in PT for it also. The JRA

workup was negative so then they thought it might be

from an enterovirus in her spinal fluid. After a spinal

tap and MRI that was also ruled out. Now we're being

told that CVID patients are just " achey " . When my

husband, Les, was worked up for PID last month he was

told his fatigue and joint aches were attributable to

the PID. Right now he has been told he has a

antibody/IgM deficiency but we also just learned this

week that the specialist said in a letter to the local

doc that he was " going into " CVID.

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

PedPI

D

[Guest guest]

Hi Lorri and ;

My name is Metz. This is my first time on the network. I'm hoping

you can both help me. My son Zachary is 10 1/2. He was diagnosed with PID

at 2 and then miraculously was fine by 2 1/2. He hasn't had problems since

then. Then last September the infections started again. He has been

chronic ears, nose and throat stuff since September. We just had blood

testing done. He is complaining of joint aching when he is really sick. Do

you know if PID comes back when kids hit early puberty? He hasn't been

diagnosed with CVID yet. Do you know if the joint aches go along with other

PID? I'd sure appreciate some pointers. Thanks so much

Metz *Zachary 10 1/2

Re: Back on IVIG

>

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

[Guest guest]

Hi Lorri,

My son, , also suffers with joint pain. It began when he was around 12

years old. He is now 24. The doctors first thought it was lupus or some

type of arthritis, but all of those tests came back negative. He was finally

diagnosed with angioedema. (He also has CVID). not only will have

joint pain and swelling of the joints, but he also swells, for example on the

tops of his hands, forearms, feet, etc., anywhere that there has been

pressure. For example, when writing, he must use a pen that has a special

grip on it that is very soft. Even then, his fingers will swell if he writes

longer than 20-30 minutes. Hope this helps. Take care. Lee

[Guest guest]

Henry - that is certainly what he said - I believe he implication would be that this might go away with time, as the cytokines cease being produced - I'm seeing him on Thursday, I'll ask again -

[Guest guest]

Can I please ask for a bit of clarification .... if I read this

correctly the MA is saying it is the chemicals from the chemo that

is causing the joint problems. Does that mean that with time the

aches will do away?

Thanks for all your support and help.

Henry

>

> Grandpa Henry and others:

>

> A comment from our MA:

>

>

> Chemotherapy, especially a biologic such as Rituximab or

Alemtuzumab,

> activate the immune system and chemicals called cytokines, that

are used by cells to

> communicate. These chemicals are included in what the body uses

to turn on

> fevers. With chemotherapy, these chemicals get released by the

immune system

> nonspecifically. It is these chemicals that cause the symptoms.

>

>

>

>

>

[Guest guest]

Kiara gets joint pains with all her cycles. however she also now gets joint

pain in between, Dr Kastner told us there was no way she had that he

feels she has a rare genetic disease. He once was willing to diagnose her with

traps and familial cold but now he just thinks she is a stumper. He told us to

enjoy her while we have her cause he figured the disease was life threatening

mom to Kiara fevering since 20 months now 8

[Guest guest]

wow....sounds like you need a new doctor. That is horrible that a

doctor would tell you something like that. These joint pains are part

of the illness.

You need to rid your lives of this bad energy doctor and get the help

of someone that cares.

Did he even do the DNA tests? There is treatment for traps and

familial so that one can lead a productive life and not have the life

threatening complications that come in their adult lives. It's life

threatening if it progresses to their organs over time and left untreated.

God Bless

[Guest guest]

--Exactly what does enjoy her while you have her mean?

[Guest guest]

My 7 year old has been complaining about his legs hurting. I just figured that

he was having normal growing pains? Does anyone else have joint aches???

Suzanne dealing with for 1.5 years.

[Guest guest]

My 7 year old has been complaining about his legs hurting. I just figured that

he was having normal growing pains? Does anyone else have joint aches???

Suzanne dealing with for 1.5 years.

[Guest guest]

Dr Kastner and team said that we needed to celebrate her life every day as he

cant diagnose her he cant tell us how long she will have.

[Guest guest]

I don't have any offical diagnosis, but my son has been having

fevers for a year and a half and he almost always complains of his legs

hurting during his fevers. Not when he is not fevering though. He

also complains of headache and stomachache. He has not had any mouth

sores as far as I can tell. He gets a red throat and sometimes tonsil

blisters. But definitely complains of the legs. He is 4 - will be 5

in February.

[Guest guest]

I don't have any offical diagnosis, but my son has been having

fevers for a year and a half and he almost always complains of his legs

hurting during his fevers. Not when he is not fevering though. He

also complains of headache and stomachache. He has not had any mouth

sores as far as I can tell. He gets a red throat and sometimes tonsil

blisters. But definitely complains of the legs. He is 4 - will be 5

in February.

[Guest guest]

so sorry. what is wrong with your little one. they want to send my son to

nih. the dr. cannot find what is wrong with my son either. first then fmf

now something new. i just don't get it. his back bone is getting shorter. his

legs are swelling. his heart slows down to almost a stop. then goes back to

normal for weeks. he is loosing his memory. but still he has all symptoms.

and all this nothing shows in his blood work. it's all scary. good luck

char.

**************

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[Guest guest]

We would use heating pads and bengay when it got really bad...just don't overuse

the bengay, that can be dangerous. Only use it when the pain is really bad.

[Guest guest]

Hi ,

Just wondering ... does your daughter fever regularly that he'd make

such a comment? Just odd he'd say something like this. My son also

sees Dr. Kastner and is still undiagnosed and he never said anything

like this to us though Mason doesn't fever nearly as often now. So I'm

just trying to understand why he'd make such a statement. There is

really no way for him to know how much time your daughter does or does

not have, if he has no idea what she even has ... to make a statement

like that is ridiculous. Maybe he was having a bad day? Not sure, but

I think I really would have questionned such a statement when he

doesn't know what she has.

Heidi

Mommy of Mason

[Guest guest]

Hi Madonna, is it possible that you are retracing? therefore healing?

How long have you being on Bee's program?

here's Bee's article on retracing :

http://www.healingnaturallybybee.com/articles/heal10.php

Hugs and Kisses to your hurting joints

Carmen

>

> Hi

>

> I was wondering if any of the ladies on this program get a bone

density scan done? I had one 3 or so years ago and was told I was at

risk for developing osteoporosis as my bones were starting to thin.

The doctor told me to increase my calcium supplements to 1000-1200 mgs

a day which I did along with what I was getting from my diet. But

since being on this program in June/08 I've decreased it to only 600

mgs which seems quite low to me. I'm postmenopausal and think our

calcium intake should be highter. THe past few weeks I've had joints

pains that kill, they never seem to go away and I was wondering if it

could be something connected to not getting much calcium. I know we

get some calcium from vegetables but we don't have any dairy and that

is most people's main calcium source.

>

> any comments or suggestions

>

> thanks Madonna

>

>

[Guest guest]

Hi

I was wondering if any of the ladies on this program get a bone density scan

done? I had one 3 or so years ago and was told I was at risk for developing

osteoporosis as my bones were starting to thin. The doctor told me to increase

my calcium supplements to 1000-1200 mgs a day which I did along with what I was

getting from my diet. But since being on this program in June/08 I've decreased

it to only 600 mgs which seems quite low to me. I'm postmenopausal and think our

calcium intake should be highter. THe past few weeks I've had joints pains that

kill, they never seem to go away and I was wondering if it could be something

connected to not getting much calcium. I know we get some calcium from

vegetables but we don't have any dairy and that is most people's main calcium

source.

any comments or suggestions

thanks Madonna

[Guest guest]

*** Yes, maybe it is retracing Carmen ... I was thinking it could be I

guess. I started Bee's program in June.

thanks so much

hugs to you too Madonna

> Hi Madonna, is it possible that you are retracing? therefore healing?

> How long have you being on Bee's program?

> here's Bee's article on retracing :

> http://www.healingnaturallybybee.com/articles/heal10.php

>

> Hugs and Kisses to your hurting joints

> Carmen

>

>

[Guest guest]

<<<I know we get some calcium from vegetables but we don't have any dairy and

that is most people's main calcium source.>>>

Madonna,

I'm still learning, but I think bone broths have calcium. You can drink it or

cook with it.

Beth

[Guest guest]

>

> Hi

>

> I was wondering if any of the ladies on this program get a bone

density scan done? I had one 3 or so years ago and was told I was at

risk for developing osteoporosis as my bones were starting to thin.

The doctor told me to increase my calcium supplements to 1000-1200

mgs a day which I did along with what I was getting from my diet. But

since being on this program in June/08 I've decreased it to only 600

mgs which seems quite low to me.

+++Hi Madonna. The difference in amounts recommended is that doctors

do not understand how much of different kinds of calcium supplements

are absorbed, and so they just say 1,000 or 1,500 mg per day, without

qualifying the kind to take. My sister is a nurse and her doctor

told her to take 1,500 mg per day and did not recommend taking

magnesium with it, which would cause anyone problems, including

cramps. Also most of us need more magnesium than calcium, but it is

good to start with equal amounts and increase magnesium first if you

get leg or foot cramps. My sister knew better, so she follows my

recommendations instead.

The amount I recommend is the amount absorbed, called the " elemental

amount. "

However, due to recent information, calcium products in the US must

now put the elemental amount on the label, and not the amount of the

total calcium or mineral content. That is confusing this issue a

lot, since Canada has different regulations.

About 2 months ago I couldn't get Natural Factors with the " elemental

amount " on the label so I bought one without it. " If " it was the

elemental amount because our supplements are according to US rules, I

should still be okay on 1/2 tablet (since I have dairy of course),

but that wasn't enough. The same was true for the Magnesium. So I

have to take double the amount now, making me just as confused as

everyone else. So depending upon your supplement you may need to

take double the amount I recommend.

I'm postmenopausal and think our calcium intake should be highter.

THe past few weeks I've had joints pains that kill, they never seem

to go away and I was wondering if it could be something connected to

not getting much calcium. I know we get some calcium from vegetables

but we don't have any dairy and that is most people's main calcium

source.

+++It isn't likely you'd get joint pain from not enough calcium

anyway. Joint pain is mainly caused by toxins, or they can be

retracing symptoms from you having joint pain in the past.

I had a bone scan where I'd lost 45% bone in my hips - severe

osteoporosis - and within 2 years my bone density increased

dramatically after taking enough cal/mag. Since then I don't worry

about it. My bones are fine when I take cal/mag faithfully along

with red meats - if I don't get enough red meat too my hips can start

to feel stiff.

I think bone scans are much more damaging than osteoporosis anyway,

and bone scans can be very inaccurate. I say, " if it ain't broken

don't fix it! "

Luv, Bee