Re: disturbing endo appt.

[Guest guest]

Hi Debbi

It's Debby (with the y)...we've corresponded before. I hope, at this

moment, you can hear the sincerity in my voice (fingers??) when I say " you

are the best mom!! "

I have honestly lost track of the number of doctors I have had Adam at. I

had one endo. tell me I was a neurotic mother because I had typed out all of

Adam's dates and milestones etc. I mean how many appts. have you been at

where the same questions come up " how old when he walked? " ; problems in

pregnancy etc. So I took the time and went through my journals I kept when I

was pregnant and when Adam was little (first 3 years) and typed up

EVERYTHING. I mean who knows maybe something that I did or experienced

during the pregnancy is a contributing factor. Little did I know when I was

writing these journals how important they would become!

As far as doctors writing notes in files don't think you are joking!!

Personally, I went to see an endo re: a suspected problem with my own

thyroid (ironic eh?). This man wrote one of those " thank you for referring

this 'interesting' patient " letters to my GP and, well, one day she kept me

waiting too long so I decided to read my file. Low and behold here is the

report. Now I had been told that I had an iodine difficiency that lead to a

goiter (swelling of the thyroid). This report on the other hand told my GP

that he " made up " the iodine story because he could tell that between my

son's health concerns and my marriage was just breaking up at that point

(and I had lost over 60 pounds in one year) he suspected I was on the verge

of a mental breakdown (ha! I have survived fine!!!) and that his news that I

could be looking at possible more serious problems (he didn't exactly say

cancer but it sure sounded like it) and he recommended my GP slyly monitor

this situation and see how it progresses!!

So don't count out the weird notations docs make to one another.

One thing I have learned is that NO ONE, including those in professions we

should trust, are truly looking out for our own best interests. If you get a

bad feeling from one doc..........go to another!!! Don't feel guilty, (I

know it's easier to say........I'm the same way........I have seen countless

dentists the past two weeks for Adam to get 2 cavities filled........as if

the kid hasn't got enough on his plate. But when one holds him down, and

another screams at him to stop screaming and wiggling....I loose

it!!!!!!!!!!)

Your child will thank you some day. Jake will come to realize that no matter

what you never gave up. Look at the success you have had so far. Mother's do

know best when it comes to their child. You KNEW there was something in the

gastro area and YOU WERE RIGHT!!

Celebrate!! Pat yourself on the back. Know that if it wasn't for you (and

only YOU) Jake would and could have been suffering for years. He may not

come with open arms and thanks in the near future...but I'm sure you

realized when you had him......that we see our own parents in a different

light when we have our own kids. We suddenly appreciate what they did for us

and how hard it must have been (and that is without medical nightmares like

we live with daily).

You are the only one who can help Jake. Don't give up!! Stand up to the

doctors (take an advocate with you if you can to bolster your strength) and

always remember if Jake didn't have you.......he'd be a lot worse off.

I hope I've helped some what. So many times I have been down this

road........I can't begin to tell you. Hug Jake, tell him you love him and

then get back to those referrals.

I can't really help you with recommendations as I am up here in Canada. But

if you ever find a way to get funding to get up here...we have some top

notch endos at Sick Kids in Toronto.

Way to go Debbi.......keep up the extra human efforts. Don't loose faith.

Jake is worth it all!!

Debby

mother of Adam--7.9 years old--34 lbs, RSS; and mother of Colette 11 years

old

debbi schaffer wrote:

> Hi, everyone!!

>

> Hope you're all having a great weekend!

>

> I took Jake to his 4-mo follow-up endo appt on Thurs.

> The endo asked what dr's we've seen since the last

> endo appt. I told him G.I. per his suggestion and

> gave him the whole G.I. story. I then mentioned that

> Jake also got another bone-age x-ray. He asked me who

> ordered it and I told him I did --he said, " that's

> illegal. " So, I said, " the Pediatrician did. " I also

> mentioned that the G.I. prescribed periactin, even tho

> he (the endo) told me no before---that it's exp that

> it doesn't work--I told him that it's her (G.I.'s)

> exp, she said, that it does work, but that I'm waiting

> till we see if the Zantac works.

>

> Then, I mentioned that the Pediatrician suggested that

> we get a 2nd opinion on the RSS. The endo said, " I

> thought I was your 2nd, or 3rd opinion. " I said, " 2nd

> opinion from a Geneticist. " He made a comment about

> our seeing too many doctors (just like the last

> Pediatrician we had)--so then I started doubting

> myself--but also, defending myself (all to myself, of

> course)--For example--the last pedi didn't want me to

> take Jake to the G.I., but lo and behold--he has

> gastritis--maybe more.

>

> The rest of the endo appt, went as follows: he's

> growing well. " His height is fine and his weight

> could be better--but it could be that he just needs

> the Zantac --maybe this has been the problem all

> along. "

>

> OK, you want profanity??????------What the

> f$%^)(* & %$##^ is that??????

>

> I left there so not knowing how to feel!

>

> So, someone, please interpret, make me feel like I'm

> doing the right thing, aside from the obvious---find a

> new endo!! If I were going to get paranoid, I'd think

> that (from another Seinfeld episode) the doctors are

> telling all the other doctors about us and writing

> mysterious messages in the file!!!! Hahahahaha.

>

> But, seriously, I don't like this endo (besides the

> fact that he never smiles--I don't associate well with

> people who never smile--), I didn't care for Dr. H.

> nor did I like Dr. Moshang at CHOP----however, I did

> like the very first endo we ever saw (when first

> presented with a growth problem)--Dr. Schwartz,

> at Jersey Shore Medical Ctr., Neptune. However, she

> has stopped practicing to concentrate on her family.

> I'd heard that she was back in East Brunswick--but

> haven't been able to track her down.

>

> Has anyone (in Jersey) heard of her or her

> whereabouts?

>

> Well, that's all. Except, that I asked the endo about

> the fact that Jake's bone age x-ray shows only two

> bones in his wrist --I wanted to know if that could

> have anything to do with difficulty writing--he told

> me no. He also kept the x-ray and said he'd send it

> back to the lab--I told him I could keep it--he then

> showed me the little sticker that reads " Property of

> ...Lab " --what's with such secrecy and lack of parental

> rights ----where x-rays and files are concerned? I

> don't get it! I'm just venting, sorry!

>

> Thanks!

>

> Debbi, Jake's mom (5 1/2 yrs., 30 lbs., 29 1/4 " ,

> RSS-wrking dx, 2nd Genetics opinion Sept 19th, Zantac)

>

> __________________________________________________

>

[Guest guest]

Debbi,

That endo sounds like a total jerk. You need a new one. You don't have to

pay someone money to make you feel like you don't know what's going on. You

can sit at home and feel that way for free. Get a new one and another and

another til you find one that you can work with.

Also, it is my opinion that you have the right to see as many doctors as you

want--and to ask as many questions as you want. It's not an engine problem

and they're not mechanics--something's wrong with your child that just

buying things to fix it WON'T fix, therefore you have the right to

understand what's going on.

Besides which, it's your money. You wouldn't serve food you didn't recognize

so why on earth should you be expected to use medications and treatments you

don't understand?

That's my two cents.

[Guest guest]

I am glad you felt comfortable about venting. Lord knows I have done it enough.

Bottom line - you are right. You need another endo. I think all of us RSS

parents, even those of us with mild kids who may not have some of the problems

that others have, still usually have a Pediatrician for regular/sick check-ups,

a Geneticist (annual visits once diagnosis is ascertained), a GI (regular if

problems, every 6 months for check-ups), an Endo (quarterly vists from what I

hear from most people, or every 6months), and an Orthopedist (again, annual if

no problems other than monitor asymmetry, more often if treatment is needed).

So phooey on him!!! Go with your gut instinct!

jennifer