New Member ---- Daughter Kaylin

[Guest guest]

Well guess it is time to jump in here and get our feet wet, so to speak. My name is and we live in Oklahoma. My oldest son has epilepsy and learning problems, due to the degree of his epilepsy. My daughter, Kaylin, is age 13 (14 end of July) and has the following diagnosis:

IGA deficiency (like she has none and never has had), asthma, Common Variable Immunodeficiency, B-Lymphocyte Deficiency, Haemophilus Influenzae Type B Disease, Streptococcus Pneumoniae Disease, Pneumococcal antibody deficiency, Antibody Polysaccharide, add in some dysphonetic dyslexia (qualifies for books for the blind) and you have my precious 13 year old daughter. Toss in the hormones that make her want to act like a 23 year old and you have a stressed mother.

Kaylin basically has no protection for her mucous membranes. Her body rejects flu shots, pneumonia shots, etc. and she has no antibodies for these things or strep. Due to this she is homeschooled.

So why are we here? I'm searching, I'm trying to learn more. Kaylin has never been what is classified as a graceful child (she inherited that part from me). Injuries are often such as when she was at her dad's house somehow she tripped on the concrete floor and hit her finger on the tractor tire. That lead into three months of swelling for her finger and pain. He did take her for x-rays and they said it wasn't broken.

I have full custody and we seek care here most of the time. Like when she was walking across the floor at a church lock-in and broke her foot. How did she do that? Who knows. Seriously she stood up, walked across the floor, heard a snap and the next thing I knew we were in the emergency room with a broken foot.

This leads us up to our current situation. Both knees are HIGHLY swollen. I feel no heat coming from them and there is no redness, a matter of fact they are discolored, but not red, this is more of a white white to light blue type of discoloration. I find it strange that both knees are affected. This has been bothering her for several months now. The swelling has not gone down. I would offer to take her to the doctor and she would say I think I can handle it. Well last week they swelled to a record high and I said that is it we are going to the doctor, she didn't hesitate as now they were keeping her up at night.

We went in and he twisted, yanked, sat on her foot, etc. Said he didn't see any issues there and took lots of bloodwork, three x-rays of each knee, etc.That was Thursday of last week, we still have no test results. He put her on medication as well: Methylprednisolone 4 mg pack. She started it yet that night and has been sicker than a dog since. The swelling has not gone down, it has gotten worse, she now has the tightness in her back, elbows, neck and all over her body now. She is hardly moving and has been running a slight fever. The fever is 99.5 to 100.

I have called his office on Monday and Tuesday to ask for results of which I'm told, well Monday's are crazy and we may not get around to it. Then yesterday was told the nurse will call you. If they don't have results back then tell me. But I am concerned that he put her on medicine and she has been worse since she started it.

I don't have a clue what to think right now but after looking at various things I'm suspecting possible arthritis and though I would start looking at some to see if these are things that sound familiar to others.

Maternal grandmother has parkinson's disease, fibro, chronic fatigue, rheumatoid and osteo arthritis, diabetes, etc. Oh yes, the doctor is aware that she is worse as I asked the nurse on Monday and she stood right there and asked him if this was normal with the steroid pack. He said no and I've not heard a thing since.

Any ideas??? I'm not asking from a Medical Doctor's standpoint, but as a mother. Looking forward to getting to know you all, sorry it must in this format.

Have an awesome day.

Hugs,

, (17, inoperable epilepsy, learning disabilities), Kaylin (diagnosis above)

[Guest guest]

Hi ,

You certainly have your hands full. I would think that most of the lab results

should be available by now - I would keep calling and bugging them. (the

squeeky wheel gets the grease). Is this Kaylin's regular doctor? Is there

another doctor you can see? He didn't give any idea of what might be going on?

This doesn't sound much like my son's initial symptoms - but as you will find

out here - a lot of these kids aren't " textbook " cases. I think I would be

calling the doctor again and asking why you should continue with the medication

without an idea what he thinks he is treating, and with worsening of her

symptoms. I'm sorry I can't offer more, I hope you find some answers soon and

relief for your daughter.

Val

Rob's Mom (6,systemic)

In a message dated 4/7/2004 9:56:25 AM Eastern Daylight Time, lcanon@...

writes:

> Well guess it is time to jump in here and get our feet wet, so to speak. My

name is and we live in Oklahoma. My oldest son has epilepsy and learning

problems, due to the degree of his epilepsy. My daughter, Kaylin, is age 13 (14

end of July) and has the following diagnosis:

>

> IGA deficiency (like she has none and never has had), asthma, Common Variable

Immunodeficiency, B-Lymphocyte Deficiency, Haemophilus Influenzae Type B

Disease, Streptococcus Pneumoniae Disease, Pneumococcal antibody deficiency,

Antibody Polysaccharide, add in some dysphonetic dyslexia (qualifies for books

for the blind) and you have my precious 13 year old daughter. Toss in the

hormones that make her want to act like a 23 year old and you have a stressed

mother.

>

> Kaylin basically has no protection for her mucous membranes. Her body rejects

flu shots, pneumonia shots, etc. and she has no antibodies for these things or

strep. Due to this she is homeschooled.

>

> So why are we here? I'm searching, I'm trying to learn more. Kaylin has

never been what is classified as a graceful child (she inherited that part from

me). Injuries are often such as when she was at her dad's house somehow she

tripped on the concrete floor and hit her finger on the tractor tire. That lead

into three months of swelling for her finger and pain. He did take her for

x-rays and they said it wasn't broken.

>

> I have full custody and we seek care here most of the time. Like when she was

walking across the floor at a church lock-in and broke her foot. How did she do

that? Who knows. Seriously she stood up, walked across the floor, heard a snap

and the next thing I knew we were in the emergency room with a broken foot.

>

> This leads us up to our current situation. Both knees are HIGHLY swollen. I

feel no heat coming from them and there is no redness, a matter of fact they are

discolored, but not red, this is more of a white white to light blue type of

discoloration. I find it strange that both knees are affected. This has been

bothering her for several months now. The swelling has not gone down. I would

offer to take her to the doctor and she would say I think I can handle it. Well

last week they swelled to a record high and I said that is it we are going to

the doctor, she didn't hesitate as now they were keeping her up at night.

>

> We went in and he twisted, yanked, sat on her foot, etc. Said he didn't see

any issues there and took lots of bloodwork, three x-rays of each knee, etc.That

was Thursday of last week, we still have no test results. He put her on

medication as well: Methylprednisolone 4 mg pack. She started it yet that

night and has been sicker than a dog since. The swelling has not gone down, it

has gotten worse, she now has the tightness in her back, elbows, neck and all

over her body now. She is hardly moving and has been running a slight fever.

The fever is 99.5 to 100.

>

> I have called his office on Monday and Tuesday to ask for results of which I'm

told, well Monday's are crazy and we may not get around to it. Then yesterday

was told the nurse will call you. If they don't have results back then tell me.

But I am concerned that he put her on medicine and she has been worse since she

started it.

>

> I don't have a clue what to think right now but after looking at various

things I'm suspecting possible arthritis and though I would start looking at

some to see if these are things that sound familiar to others.

>

> Maternal grandmother has parkinson's disease, fibro, chronic fatigue,

rheumatoid and osteo arthritis, diabetes, etc. Oh yes, the doctor is aware that

she is worse as I asked the nurse on Monday and she stood right there and asked

him if this was normal with the steroid pack. He said no and I've not heard a

thing since.

>

> Any ideas??? I'm not asking from a Medical Doctor's standpoint, but as a

mother. Looking forward to getting to know you all, sorry it must in this

format.

>

> Have an awesome day.

>

> Hugs,

> , (17, inoperable epilepsy, learning disabilities), Kaylin

(diagnosis above)

>

>

>

[Guest guest]

-Hi ,

Welcome to the group, Im sorry you are dealing with soo much, I hope

you start to get some answers soon. I must say, im not too impressed

with your doctors office. I would keep calling and keep calling until

you get some answers.

I cant help, much, my sons onset didnt sound like what you are

dealing with. But i have found out here that each one is a little

different. Please let us know what you find out, in the meantime I

hope your daughter can find some relief and start to feel better.

Hugs Helen and (6,systemic)

-- In , " Canon " <lcanon@s...> wrote:

> Well guess it is time to jump in here and get our feet wet, so to

speak. My name is and we live in Oklahoma. My oldest son has

epilepsy and learning problems, due to the degree of his epilepsy.

My daughter, Kaylin, is age 13 (14 end of July) and has the following

diagnosis:

>

> IGA deficiency (like she has none and never has had), asthma,

Common Variable Immunodeficiency, B-Lymphocyte Deficiency,

Haemophilus Influenzae Type B Disease, Streptococcus Pneumoniae

Disease, Pneumococcal antibody deficiency, Antibody Polysaccharide,

add in some dysphonetic dyslexia (qualifies for books for the blind)

and you have my precious 13 year old daughter. Toss in the hormones

that make her want to act like a 23 year old and you have a stressed

mother.

>

> Kaylin basically has no protection for her mucous membranes. Her

body rejects flu shots, pneumonia shots, etc. and she has no

antibodies for these things or strep. Due to this she is

homeschooled.

>

> So why are we here? I'm searching, I'm trying to learn more.

Kaylin has never been what is classified as a graceful child (she

inherited that part from me). Injuries are often such as when she

was at her dad's house somehow she tripped on the concrete floor and

hit her finger on the tractor tire. That lead into three months of

swelling for her finger and pain. He did take her for x-rays and

they said it wasn't broken.

>

> I have full custody and we seek care here most of the time. Like

when she was walking across the floor at a church lock-in and broke

her foot. How did she do that? Who knows. Seriously she stood up,

walked across the floor, heard a snap and the next thing I knew we

were in the emergency room with a broken foot.

>

> This leads us up to our current situation. Both knees are HIGHLY

swollen. I feel no heat coming from them and there is no redness, a

matter of fact they are discolored, but not red, this is more of a

white white to light blue type of discoloration. I find it strange

that both knees are affected. This has been bothering her for

several months now. The swelling has not gone down. I would offer

to take her to the doctor and she would say I think I can handle it.

Well last week they swelled to a record high and I said that is it we

are going to the doctor, she didn't hesitate as now they were keeping

her up at night.

>

> We went in and he twisted, yanked, sat on her foot, etc. Said he

didn't see any issues there and took lots of bloodwork, three x-rays

of each knee, etc.That was Thursday of last week, we still have no

test results. He put her on medication as well: Methylprednisolone

4 mg pack. She started it yet that night and has been sicker than a

dog since. The swelling has not gone down, it has gotten worse, she

now has the tightness in her back, elbows, neck and all over her body

now. She is hardly moving and has been running a slight fever. The

fever is 99.5 to 100.

>

> I have called his office on Monday and Tuesday to ask for results

of which I'm told, well Monday's are crazy and we may not get around

to it. Then yesterday was told the nurse will call you. If they

don't have results back then tell me. But I am concerned that he put

her on medicine and she has been worse since she started it.

>

> I don't have a clue what to think right now but after looking at

various things I'm suspecting possible arthritis and though I would

start looking at some to see if these are things that

sound familiar to others.

>

> Maternal grandmother has parkinson's disease, fibro, chronic

fatigue, rheumatoid and osteo arthritis, diabetes, etc. Oh yes, the

doctor is aware that she is worse as I asked the nurse on Monday and

she stood right there and asked him if this was normal with the

steroid pack. He said no and I've not heard a thing since.

>

> Any ideas??? I'm not asking from a Medical Doctor's standpoint,

but as a mother. Looking forward to getting to know you all, sorry

it must in this format.

>

> Have an awesome day.

>

> Hugs,

> , (17, inoperable epilepsy, learning disabilities),

Kaylin (diagnosis above)

>

[Guest guest]

Thank you Helen and . We finally ended up spending six hours in the ER after talking to her immunologist and he was livid with the general practitioner.

After six hours of being in the er they gave her a shot of MORPHINE (that nearly floored me), a shot of ativan and then had her take some lortab on top of that and gave her a prescription for it.

The er doc told me right then, I don't have all the test results back so right now all I can say is this is not going to be a short thing. Get yourself a doc you feel comfortable with honey, you are in for the long haul. He gave me a hug and scooted us out of there so we could all get some sleep.

This afternoon I learned her ANA and ENA's were positive. The hospital refuses to send me the results, they would only fax to the doctor. So I'm waiting till that shift is over and I'm calling again. By golly we pay for these tests and I want the results.

I'm a naturopathic with a masters in herbalism and I can read the darn thing myself. I can't imagine waiting till Monday to learn more. I've looked at the symptoms, the results that I do know and I've narrowed it down to eight different things, I know that sounds pitiful. But after researching those eight I pretty much have it down to two or three.

I appreciate your answers. Also Val & Rob, thank you for taking the time to answer me. It is so darn hard to sit back and watch our children be so helpless. Bless her heart she got up to go to the bathroom earlier and was determined to do it on her own. She ended up in the floor, her knees simply gave out.

You all have a blessed holiday weekend.

Hugs,

, & Kaylin

Re: New Member ---- Daughter Kaylin

-Hi ,Welcome to the group, Im sorry you are dealing with soo much, I hope you start to get some answers soon. I must say, im not too impressed with your doctors office. I would keep calling and keep calling until you get some answers.I cant help, much, my sons onset didnt sound like what you are dealing with. But i have found out here that each one is a little different. Please let us know what you find out, in the meantime I hope your daughter can find some relief and start to feel better.Hugs Helen and (6,systemic)-- In , " Canon" <lcanon@s...> wrote:> Well guess it is time to jump in here and get our feet wet, so to speak. My name is and we live in Oklahoma. My oldest son has epilepsy and learning problems, due to the degree of his epilepsy. My daughter, Kaylin, is age 13 (14 end of July) and has the following diagnosis:> > IGA deficiency (like she has none and never has had), asthma, Common Variable Immunodeficiency, B-Lymphocyte Deficiency, Haemophilus Influenzae Type B Disease, Streptococcus Pneumoniae Disease, Pneumococcal antibody deficiency, Antibody Polysaccharide, add in some dysphonetic dyslexia (qualifies for books for the blind) and you have my precious 13 year old daughter. Toss in the hormones that make her want to act like a 23 year old and you have a stressed mother.> > Kaylin basically has no protection for her mucous membranes. Her body rejects flu shots, pneumonia shots, etc. and she has no antibodies for these things or strep. Due to this she is homeschooled.> > So why are we here? I'm searching, I'm trying to learn more. Kaylin has never been what is classified as a graceful child (she inherited that part from me). Injuries are often such as when she was at her dad's house somehow she tripped on the concrete floor and hit her finger on the tractor tire. That lead into three months of swelling for her finger and pain. He did take her for x-rays and they said it wasn't broken. > > I have full custody and we seek care here most of the time. Like when she was walking across the floor at a church lock-in and broke her foot. How did she do that? Who knows. Seriously she stood up, walked across the floor, heard a snap and the next thing I knew we were in the emergency room with a broken foot.> > This leads us up to our current situation. Both knees are HIGHLY swollen. I feel no heat coming from them and there is no redness, a matter of fact they are discolored, but not red, this is more of a white white to light blue type of discoloration. I find it strange that both knees are affected. This has been bothering her for several months now. The swelling has not gone down. I would offer to take her to the doctor and she would say I think I can handle it. Well last week they swelled to a record high and I said that is it we are going to the doctor, she didn't hesitate as now they were keeping her up at night.> > We went in and he twisted, yanked, sat on her foot, etc. Said he didn't see any issues there and took lots of bloodwork, three x-rays of each knee, etc.That was Thursday of last week, we still have no test results. He put her on medication as well: Methylprednisolone 4 mg pack. She started it yet that night and has been sicker than a dog since. The swelling has not gone down, it has gotten worse, she now has the tightness in her back, elbows, neck and all over her body now. She is hardly moving and has been running a slight fever. The fever is 99.5 to 100. > > I have called his office on Monday and Tuesday to ask for results of which I'm told, well Monday's are crazy and we may not get around to it. Then yesterday was told the nurse will call you. If they don't have results back then tell me. But I am concerned that he put her on medicine and she has been worse since she started it. > > I don't have a clue what to think right now but after looking at various things I'm suspecting possible arthritis and though I would start looking at some to see if these are things that sound familiar to others.> > Maternal grandmother has parkinson's disease, fibro, chronic fatigue, rheumatoid and osteo arthritis, diabetes, etc. Oh yes, the doctor is aware that she is worse as I asked the nurse on Monday and she stood right there and asked him if this was normal with the steroid pack. He said no and I've not heard a thing since.> > Any ideas??? I'm not asking from a Medical Doctor's standpoint, but as a mother. Looking forward to getting to know you all, sorry it must in this format.> > Have an awesome day.> > Hugs,> , (17, inoperable epilepsy, learning disabilities), Kaylin (diagnosis above)>