Dr. Lowe

[Guest guest]

jmfritze wrote:

> So, if the IDF recommends a doctor does that mean he is usually pretty

> reliable? They recommended Dr. Lowe in Rochester in addition to Dr.

> Shappiro so I called and Dr. Lowe can see Ana tomorrow! So I have the

> appointment....any input? Do you think this is ok?

>

>

> Ana14 mo

>

>

A recommendation from IDF simply means that that doctor receives their

information -- doesn't mean that he follows it. But, it certainly would

be a step in the right direction. Why don't you hang on to your current

appointment with Dr. Shappiro and see whether this doctor tomorrow is

one that you feel you can work with? You can always cancel Dr.

Shappiro's after you check this doctor out. I would love for somebody

to see Ana sooner rather than later -- especially if she's currently

sick!!!!!

Remember the questions to ask: are you a clinical immunologist or an

allergist? how many PID patients do you currently see? And be on the

lookout for a doctor who 1) cares about Ana 2) listens and will work

well with you and 3) knows his stuff without being a bully! But also

remember that all " relationships " take time to grow. So, you'll just

have to look carefully for the " possibilities " that it will work.

Hear what he has to say. I think that you have enough of an education

now to know when something doesn't sound right.

I'll be praying!

In His service,

dale

[Guest guest]

>

> A recommendation from IDF simply means that that doctor receives

their >info

I am going to keep the one with Dr. Shapiro for now, we'll see. The

woman who called me back from the IDF did say he sees quite a few of

the patients she has talked to, and they have been happy with him...so

we'll see! If it does work out I will feel so hopeful that we will

get some answers! Thanks..

Ana 14 mo

[Guest guest]

" Dr. Lowe can see Ana tomorrow! "

and Parents -

Does anyone see Dr. Lowe?

I don't know anything about Dr. Lowe -- but I am not on top of the field

anymore. - I would post an inquiry to our parents, just on this doc, and

see what they say. After what you have been through, I hope that you get an

immuno you can count on -- not another vague situation. It is nice that they

are trying to work you in early, though.

It probably would not hurt to call Dr. Shapiro to see if there might be an

earlier opening. You never know when there is a cancelation... Also, you could

ask them if the docs would like Ana to get started on any new blood work (again)

while you are waiting for the appointment. There is no reason why a

phlebotomist (sp?) would be too busy. Just thinking...

In preparation for the appointment, I would suggest that you put together

objective information and keep your personal notes in front of you. Be really

cautious when passing along opinions or subjective notes from other doctors.

Personally, I would not do it. Doctors are very much influenced by anything in

black and white (even if there is an error) regardless of what the evidence may

show. There is a sort of " group think " mentality that sometimes occurs when one

dominant doc says one thing and the rest of the specialists follow -- regardless

of what is really going on. This happened with our first immuno's practice and

my husband (a professor of psychology) was horrified. I would stick with

compiling the most objective information possible.

As an aside, we one had a nurse that said that our daughter responded to

Prevnar when she did nothing of the sort. Stupid me (this was before I found

this group) told our new consulting immuno that she responded to her

immunizations! I was such a dope for telling our new immuno what the last nurse

said. Fortunately, the consulting immuno ordered repeat studies of everything

and did not trust any of the results from the previous lab. Whewww.... Of

course, for the second time in a row, the results showed that she did not

respond to prevnar. Yikes! Please don't walk in my shoes --be careful not to

give the new consulting immuno any possible misinterpretations from the previous

docs.

A good doctor can easily draw from objective information, evaluate Ana, and

come to their own conclusions. I would strongly suggest writing a " problem

list " (all the things that you observe are issues -- including the pain!).

Bring this and any other objective information -- such as blood studies,

imaging, laboratory studies (urine, stool, cultures, etc.) -- to the

appointment. Don't do what I did and say, " the last immune said this or

that... " . = ) Let the good doctor put the right pieces of the puzzle together

systematically -- he/she will not need input from the last doc and and

particularly not from one that you don't trust.

With regard to Ana's pain at night. Most children do NOT pretend to be in

pain. Pain is considered a 5th vital sign! Just as blood pressure, pulse,

temp, etc. are vital signs. Pain should not be ignored and from what you

describe, Ana is not pretending to be in pain. When my daughter wakes up with

pain (she has some autoimmune stuff going on) I rank the pain on a scale of 1 to

10. Over time, I can see if she is getting better or worse -- and, in her case,

she is getting better due to IgG therapy! Yea.

The point is this: if you think Ana is in pain, SHE IS IN PAIN and this needs

to be addressed. Pain meds such as Motrin are only a temporary solution -- the

underlying issue should be determined and I understand that you are working hard

to do this. Trust your instinct and keep using common sense, mom.

Hope your appointment goes well.

mom CVIDer

[Guest guest]

In a message dated 4/5/2006 9:07:26 PM Central Standard Time,

jmfritze@... writes:

> Thank you for the advice for tomorrow. Hopefully I will not be an

> emotional wreck for it.

>

:

I don't know if everybody would agree with this. But it has been my

unfortunate experience that the more emotion you express, the less seriously

they take

you. When you present facts -- # of infections, time or treatment to cure,

severity of illnesses, comparison of her illness with others with the same

illness, # of times on abx and why, any " proof " of infections such as x-rays, CT

scans, cultures, etc., clinical signs and symptoms... most of the docs we've

seen

have responded better to that type of information than a mother expressing

pain over seeing her baby sick. Maybe I had a string of uncaring, unfeeling

docs, but they just seemed to shut down when emotion was expressed. When I used

their terminology, seemed more detached and just presented facts, I was taken

more seriously. You can SAY you are concerned about quality of life, pain, etc.,

but Keep It Together, whatever you do.

I'm not saying you wouldn't keep it together, but who could blame any mother

if they fell weeping at this man's feet, begging for his help?!! But really

don't do that.

That being said, a GOOD doctor would " feel your pain " and realize help was

needed based on your level of feeling. Unfortunately, they are not all good

doctors. Or over time they have had to turn off the feeling in order to deal

with

all the sadly sick kids (and hurting parents) they see.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

>>

> The point is this: if you think Ana is in pain, SHE IS IN PAIN

and this needs to be addressed. Pain meds such as Motrin are only a

temporary solution -- the underlying issue should be determined and I

understand that you are working hard to do this. Trust your instinct

and keep using common sense, mom.

>

>

and everyone...

Thank you for the advice for tomorrow. Hopefully I will not be an

emotional wreck for it.

How do I find out waht is causing her pain? I don't even know where

to start. I just want to make it better.

[Guest guest]

To further your reading and maybe answer a few things that may seem puzzling, this is from Dr.Lowe's website:

http://www.drlowe.com/index.htm#Latest%20Updates%20to%20drlowe.com

Please can I remind everyone to delete all but a few lines of the message you are replying to when replying to messages.

Lilian

Moderator