Arthritis, breathing problems and headaches; related???

[Guest guest]

There has been way too much excitement at my house. First off, I was in and out

of the hospital with the baby, had a csection for her safety, and exactly one

week after she was born, I had Christiaan in the dr/Er because the breathing

issues started back up again. Not only that, but DH had taken her the night

before, and went to work on no sleep. They had already given him a full week off

because of my surgery, he couldn't call in again.

So, as I suspected, she absolutely does NOT have asthma. The meds were actually

causing her to have anaphalaxis reactions, and when I took her into the dr, they

tried to give her allergy meds, and as that didn't work, they gave her an epi

breathing treatment. She was still working so hard, and they had made a same day

appt with the allergist, but instead sent us to the ER, because she was just

working too hard to breathe. She couldn't talk during any of this, and that was

what sent us in to start with. She could breathe well enough though, as her o2

sats and HR weren't too terrible, for a good while anyway.

So, we get to the ER, and they give her an IV, they give her epi, then on

oxygen, and as that wasn't enough, they put her on Heliox. The dr said that he

was going to stabilize her, and send her to the city. Which meant Children's. I

asked if we could go to STL, because they don't like me much at the KCMO one.

The rheumy there wrote on the report that she was making it up or having

sympathy pains for her brother, if anyone remembers. And, I figured they would

say the same thing. He said he didn't have transport to STL (where our family is

too), but that once we got to the city, we could go whereever we wanted. And, if

I wanted to go to STL, I could take her myself. Of course, in the state that she

gets in (and she needed o2 on the way over as well), I would not risk it.

I wasn't even suppose to be driving at 1 wk post csection, but what can I do?

So, I sign the paper, get my kids where they could stay overnight (again), and

head to the city.

The first thing that they jump to is that she is having VCD, which they say is

stress induced. They look at my 1 wk old baby and say that it has to be stress.

I think that is somewhat crazy, because we had a baby 2 yrs ago, and she never

had any issues. We've had the child with med issues, and she started the

arthritis when he was stable for so long. They said it is common for a person

with athralagia to also have this VCD. They taught her some breathing exercises,

that haven't done anything but keep her somewhat calmer when she has the

episodes, but they don't reduce the severity. They also said that if they don't

work, we can always come back.

Oh, and this is the kicker. They give me NOTHING to help her if she can't get

her breathing under control herself. I beg them for something that I can help

her with, even if it were to be a placebo. She has had some of the episodes go

away on our way to the ER, at the ER, and at the dr's office. But, it isn't

because of meds that she has cleared up, or that she felt someone was doing

something, therefore she could calm down.

They said to do the exercises, and if she passes out because of an episode, she

will relax and start breathing on her own. They even said they would back me up

if anyone were to call DFS because we didn't have her on any real treatment.

They say it isn't necassary.

I wasn't overly surprised this is the " help " we got. I am surprised that they

would assert we should just let her go like that, because she may just breathe

normally if she passes out. Or she could die of cardiac arrest. !!!??? I am not

taking that gamble. But, I am also unsure where we are suppose to go from here.

At any rate, there ARE organic causes to this VCD; bad reflux and extreme

allergies that stop at the throat instead of the lungs with asthma. I asked them

if a sulfate allergy could be causing this (because of the terrible reactions to

the asthma meds) and if I should try to eliminate them, and they said to not

bother. They already put her on Zantac, but it doesn't seem to be of any help. I

thought the use of Ibuprofen over this past year may have caused reflux, but the

episodes shouldn't last so long since she is on Zantac, or even if she wasn't on

it.

One thing that has helped, the only help, is that she takes a bath, and it

clears up. I am not sure if this is because she relaxes in there, the humidity,

and it is also washing off any allergen that is on her body, and she changes

clothes. This morning, I don't think she changed her clothes, and she started

back up again, having to take a second bath. After that, she was fine.

I am not too sure about the diagnosis, but it does seem to fit. I don't think it

is just stress, because since we got home, the stress level has gone down. The

baby is healthy, I am healthy, and life is getting back to normal. I figured

once we got home, and everything calmed, she might not even have them anymore,

if they are right and it is stress related. If she can just calm herself, then

it should go away. But, she is not my high strung child, so I wouldn't expect

that kind of thing from her.

So, is there any way that breathing episodes that is NOT asthma, can be related

to arthritis?? She has also had a couple of pounding headaches with these. And,

she almost ALWAYS has arthritis either when she has an episode or shortly

before.

She is a driven ambitious girl, but not overly so, that they said goes with

this; type A personalities. (but VCD usually affects women 20-40) She doesn't

sweat the small stuff though. I think she is probably one of the most balanced

children I have, and even her counselor (that released her several months ago,

not for her when we started, but part of family counseling for her brother) says

she is.

The children that I would expect to act out from the new baby stress have been

acting like normal 2, 4, and 6 yos, under the circumstances, but not terrible.

My high strung child is doing well. And, Christiaan says that she doesn't

understand how she could be having a stress induced ailment since she doesn't

feel stressed at all. I don't think she acts stressed either. It can start when

she is sleeping and wakes, or laying down to fall asleep, or from chasing the

baby, or crossing the street. There are no consistancies.

They said they would have the pulmonologist and allergist come in to figure this

out, but since they all jumped on the VCD wagon, that never happened. What a

waste of a lot of money to have her ambulanced and kept overnight to not have

anything ruled out. They did say she doesn't have any mass in her neck to

explain it. And, her lungs were clear on both xrays. But, my son's " clear " xray

had significant haziness and was actual pneumonia, comes to find out, at that

same hospital that tried to make me out to be a hysterical mother. So, who

knows?

I do think that I would like to get those records, and I wanted to get mine too,

from my stay and csection.

I won't deny the stress. I can see how stress can make ppl have worsened

conditions; like asthma, JRA, GERD, fibro, and many other ailments can be

worsened by stress. But, it doesn't negate that there really is an organic cause

to the person's illness, and therefore some kind of treatment or way to HELP

that person.

I feel so helpless and at a loss. She is still having these episodes. The

breathing exercises do nothing. I do think that she is trying. Who doesn't want

to breathe and talk comfortably?? We went for her check up with our dr on

Monday. He asked me what Children's did for us. When I said they said it was

stress, he actually looked amused. I don't know if he thought it was ridiculus,

or if he knew that I wouldn't be very happy about it. He has other large

families in the practice.

I get frustrated with her one second , and I am crying the next, because I want

to be able to take it away. I would like to believe them that she could control

some of it, therefore, if she could just relax and " believe she can breathe " ,

then we won't have to be in and out of the ER or hope that it goes away wtih a

bath.

Do I just take her to University, episode or not, and beg them to help us? Do I

put her back into counseling?? I don't believe this is normal even for a large

family, to have a child have things like this, because she is stressed out?????

I think my children are pretty normal, happy, and well balanced. They let me

know when they don't think something is fair, and we try to work it out. I don't

run things with an iron fist over here, and neither does their father when he is

home. DH has the best schedule that he has had in most of our marriage. So, work

shouldn't be an issue. Financially, we are also better off then we have been

since the beginning of our marriage.

Any ideas?? Any advice? TIA, Kymberli