Update on my daughter

[Guest guest]

Hi Holly,

Your email brought me back 8 years to when my son was in preschool. He

is 12 and just diagnosed with CVID. Finally we have a reason for all of

the sickness, infections, illnesses, asthma ...

I don't want to add to your stress level, but one thing that made our

life a lot easier -- and I wish I had considered years ago -- was home

schooling. We've been doing it for two years now. My son still has lots

of contact with other kids (through clubs, etc.). But he's able to get a

lot more sleep, rest when he's tired, and doesn't get exposed to the

disease pit of kids sneezing on him all day long. For me, it's taken the

stress off of constantly dealing with the school (who really had a hard

time believing that any kid could be sick that much), sending him to

school when I knew he shouldn't go, and waiting for " the phone call "

from the nurse.

My son just started sub-q treatments two weeks ago, but the improvement

in his health once we started homeschooling -- plus my decrease in

stress -- was enormous.

Good luck to you. If there's any consolation in your life right now,

you're finding out what's going on at an early age.

Sue in Phoenix

Mom to (12, asthma, CVID, celiac disease) and daughter 9 (also celiac)

" Education is not the filling of a pail, but the lighting of a fire. " --

Yeats

Holly wrote:

>

> I have only posted once or twice since I joined. I have a 4 year old

> that will be getting blood work done soon to find out if she has an

> immune deficiency.

> The last week has been rough. Two weeks ago, I had to pick her up at

> preschool because they thought she had pink eye. When I seen her, I

> knew it was a sinus infection. I decided to take her to a new doctor

> as the doctor she had been seeing was doing nothing to find the cause

> of the chronic sinus infections.

> The new doctor was great. He suggested blood work be done to test for

> an immune deficiency as soon as she was feeling better.

> So she went for a follow-up last Monday. The sinus infection was gone

> but she had an ear infection. She also started coughing but the doctor

> didn't hear anything.

> By Thursday, she was back at the doctors with coughing that wouldn't

> stop. He felt that it was her asthma acting up but had x-rays done. He

> also put her on the Z-pac just incase it was pneumonia. She went for a

> follow-up on Monday and it was confirmed pneumonia in the lower left

> lobe.

> She went back again today and her chest is still congested. So she is

> back on antibiotics. She is also getting breathing treatments every

> 4-6 hours. She has another follow-up with the doctor on Tuesday.

> Her doctor did consult with my daughters asthma doctor and they both

> agree that she needs the work up done to find out of she does have an

> immune deficiency. Since she was on steroids for 5 days, the lab work

> won't be done until after Tuesday's follow-up visit.

> I am so exhausted from all these doctor visits. I am upset that my

> daughter is not getting better and I can't make her healthier. And I

> am beating myself up because I had no idea she was so sick. If you

> were to look at her, she doesn't act sick. I would have swore all this

> week that she was 100% better. I never imagined that her asthma is

> acting up so much.

> I just want my daughter to get healthy. I am sick of the doctors, the

> antibiotics, the side effects of the medication and constant worry.

> How do you all deal with it?

>

>

[Guest guest]

Oh my, Tiarra and the rest of your family will be in my prayers. Please let

us know how everything goes..

Toni

update on my daughter

>I took my daughter Tiarra to the eye dr yet again. This makes twice in

> the last two weeks. She has severe problems now with one of her eyes

> and has to go in for a lot of testing and eventually chemotherapy to

> repair what is wrong. Please keep us in our prayers as it means a lot

> of traveling for us. Thanks Nikole Benson

>

>

>

>

>

[Guest guest]

Good Luck I hope everything go well. I will definitely say a prayer for your daughter.nikole <eleteach03@...> wrote: I took my daughter Tiarra to the eye dr yet again. This makes twice inthe last two weeks. She has severe problems now with one of her eyesand has to go in for a lot of testing and eventually chemotherapy torepair what is wrong. Please keep us in our prayers as it means a lotof traveling for us. Thanks Nikole BensonAlly

Expecting? Get great news right away with email Auto-Check.Try the Beta.

[Guest guest]

HI MADALYN, SO THE DR. DOESN'T THINK SHE HAS RA.BUT HER LUPUS IS A FACTOR. ALL I

CAN TELL U IS GET A SECOND OPINION &

FIND OUT WHAT IS WRONG W/YOUR DAUGHTER. SHE'S THE ONE WITH THE PAIN & ONLY SHE

KNOWS WHAT SHE FEELS.

GOOD LUCK,GOD BLESS,MELYNDAGAMEZ 9/3/08 8:55P.M.CENTRAL

[ ] Update on my Daughter

HI everyone...as i had posted a couple weeks ago, My 17 yr old daughter

was told by our Dr she has RA...Well we seen the specialist today for

the first time...he don't think she has it, even tho she is having

joint pain...he also said her lupus levels were a concern, tho she may

only carry the antibodies but not the disease itself...he is doing more

detailed blood work to find more answers as to why she is having this

joint pain...we next appt is in 2 weeks...i told my daughter i will

also get her a second opinion...the Dr i wanted to go to was not in my

insuranse network...so we picked a doctor that we really didnt know

much about....any thoughts on this is appreciated.

thanks! Madalyn

------------------------------------

[Guest guest]

Diagnosing RA or any autoimmune disease can be time consuming and seem almost

like guesswork.  I had a positive rheumatoid factor and they still weren't

sure.  My primary said " this could be one of many things " and sent me to a

rheumatologist.  The first rheumatologist I saw put me on Plaquenil right away

and then said come back in three months and we'll see what's going on.  He

wasn't sure then either.  I had x-rays and more bloodwork.  I saw a naturopath

and then finally a different rheumatologist who confirmed the diagnosis.  In any

case,  it has taken a while for a diagnosis.  Sorry, I'm sure that's not what

you wanted to hear but I think it's what a lot of people go through.  There's

just not one definitive test that tells you what it is or isn't. 

 

Good luck,

 

[ ] Update on my Daughter

HI everyone...as i had posted a couple weeks ago, My 17 yr old daughter

was told by our Dr she has RA...Well we seen the specialist today for

the first time...he don't think she has it, even tho she is having

joint pain...he also said her lupus levels were a concern, tho she may

only carry the antibodies but not the disease itself...he is doing more

detailed blood work to find more answers as to why she is having this

joint pain...we next appt is in 2 weeks...i told my daughter i will

also get her a second opinion...the Dr i wanted to go to was not in my

insuranse network...so we picked a doctor that we really didnt know

much about....any thoughts on this is appreciated.

thanks! Madalyn

------------ --------- --------- ------

[Guest guest]

Madalyn,

I have been tested for Lupus severl times b/c my sister has it.  They will test

me and it will be positive and then retest me and it will be negative.  My

doctor basically said the same thing...I have the antibodies but not the

disease.  During this time frame, I had alot of weird things happen...I

miscarried, had an immediate Gallbladder removed (no history of problems or in

family).  I had knee problem and they had scoped it and found basically nothing

wrong.  Weirdest thing though was I tested positive for a std.  Turned out

NEGATIVE after all. (that was hard to explain to the hubby!) That was about 13

years ago.  I just turned 37 in Aug.  I woke up just over 4 months ago and was

hurting in every single joint.  All blood work came back negative.  My point is

that this is a weird disease and doctors don't know everything about it.  Don't

get me wrong....my dad was a doctor, and I respect (most) doctors but each case

is unique.  You are

doing the right thing  by researching and doing a 2nd opinion.  If she does

have RA, treat is aggressively and less damage and remission is possible.  I

still have bad days but not anything like 4 months ago.  Good Luck!!  Paris

[ ] Update on my Daughter

HI everyone...as i had posted a couple weeks ago, My 17 yr old daughter

was told by our Dr she has RA...Well we seen the specialist today for

the first time...he don't think she has it, even tho she is having

joint pain...he also said her lupus levels were a concern, tho she may

only carry the antibodies but not the disease itself...he is doing more

detailed blood work to find more answers as to why she is having this

joint pain...we next appt is in 2 weeks...i told my daughter i will

also get her a second opinion...the Dr i wanted to go to was not in my

insuranse network...so we picked a doctor that we really didnt know

much about....any thoughts on this is appreciated.

thanks! Madalyn

------------ --------- --------- ------

[Guest guest]

Hi Madalyn - my only thoughts on this come in the form of prayer that

you are able to get to the bottom of your daughter's pain soon. She is

so young to have to deal with all of this stuff - although age is no

concern for this disease. You're a good mom, your daughter is

blessed..........Doreen

>

> HI everyone...as i had posted a couple weeks ago, My 17 yr old

> daughter was told by our Dr she has RA...Well we seen the specialist

> today for the first time...he don't think she has it, even tho she is

> having joint pain...he also said her lupus levels were a concern, tho

> she may only carry the antibodies but not the disease itself...he is

> doing more detailed blood work to find more answers as to why she is

> having this joint pain...we next appt is in 2 weeks...i told my

> daughter i will also get her a second opinion...the Dr i wanted to go

> to was not in my insuranse network...so we picked a doctor that we

> really didnt know much about....any thoughts on this is appreciated.

> thanks! Madalyn

>

[Guest guest]

Thank you all for your feedback. My daughter is still in the hospital and

started having more depressing feelings after the Dr increased the dosage of

Elavil to 25mg. She also started having panic attacks. We did however learn

that a major contributor to her anxiousness and tremors was Benadryl that they

were giving her to help calm her down. Apparently with her and her father it

makes them extremely panicked and wired.

So today they are lowering the dosage of Elavil and are going to start her on

Cymbalta. I have concerns about this increasing her suicidal thoughts but at

least she will be somewhere safe. I'm just wondering if it is common among those

with CMT to not have the expected result when it comes to medications. Her

father can't take Smbien because it makes him wired and not tired.

I really wish I could find some feedback from teens with regards to medications

that have worked. It seems like they react differently to antidepressants.

Thanks again in advance,

Barb

[Guest guest]

Barb,

Thanks for the update. My entire life many medications had the reverse effect on

me, including Benadryl and something for sleep - think it was Temezepam kept me

wide awake all night. The two meds normally given to many with CMT who have

tremors, Inderal and Mysoline made me feel like my heart was going to jump out

of my skin. Doc C saved the day with Symmetryl.

Your daughter is on a very small amount of Elavil. 75 mg is the 'normal' adult

dose. I hope the Cymbalta helps her too.

Gretchen

[Guest guest]

i am currently on cymbalta. not much problem getting used to being on it except

very thirsty. found i did better taking it at night.

the biggest issue is skipping doses. if i forget one day it is ok, but 2 days

and i feel dizzy and extremely tired.

corrects itself as soon as i take the medication. It definately helped lift me

out of depression. I was suffering from situational depression, but since CMT

and life is always throwing new situations at us, i have decided to stay on it

this time and i couldn't be happier or more level.

jackie