Stopping Periactin

[Guest guest]

When we stopped Periactin I was scared to death to tell Dr.

Harbison. I told myself that I would not lie to her but I would also

not offer any information that would cause her to yell at me. THis

is a very difficult situation because I'm not sure why she is so

intimidating. When she finally asked me about the periactin (6

months after I had stopped it) I told her the truth. She did not

yell and she agreed with me. One reason I did not want to tell her

was because I feel like she uses her observation to get you to do

what she wants. If she knew that he was off of it, she would comment

about how small and feeble he was looking. So I wanted to hear her

say he looked great before I told her he was not taking it. Please

do not get me wrong, I am also a Dr. H fan but I know that she is

pushy and she believes that her way is the best and only way! When

Jon was first diagnosed with RSS we spent 3 weeks in the hospital

with Dr. Harbison, I know her pretty well. I saw the irritating,

pushy side of her but I also saw her feed Jon his dinner and play

with him until 8:30 p.m. because I had a headache and needed to get

rest. She put on a blindfold and took Theresa out for an exploration

of the city after Theresa went blind from her Kidney problems. She

truly goes beyond the call of duty for the kids but she needs to

learn to take our opinions and observations into account.

I do not know if She is publishing information about these kids but

she really has mellowed over the past 3 years (imagine that) and

seems to accept different treatments. I think if you have a good

defense for stopping the periactin and your childs heigth growth is

not affected by stopping it, she may agree with you. I noticed on

Jonathon's chart she wrote PERIACTIN NON-COMPLIANCE, I insisted that

she change it to DISCONTINUEd PERIACTIN because I did not like the

implications that I was doing something harmful to Jon by not

complying to her wishes. She agreed and we have not had a problem

since. Dr. H does respond to well thought out, intelligent

arguments. Sometimes I just find it hard to come across intelligent

when I'm scared to death of her! Hope this gives you some hope!

Pattie

[Guest guest]

Wow! Pattie! What a great story! I really, really needed to hear this

because I, too, am scared of Dr. H. getting mad at me. We have an ongoing

argument about our use of Tylenol 3 for Max when he is in extreme pain and

she has voiced her strong concerns about our using it. (Three other

doctors, ones she has pleaded with us to take him to, have told us to use

the T3.) I am so afraid that she will someday really let me have it and I

feel so silly because I am 44 years old and should not feel this way

anymore! I am supposed to take Max to her on August 28 - and my husband

better go with me or I will be shaking in my shoes!

But, in defense of Dr. Harbison, we have been through an awful lot together

in the 11 years we have known her. She has ALWAYS been an advocate for Max

and has pushed and pushed until we have had some answers for his complicated

problems that have arisen. I would not even consider any other

endocrinologist.

If it helps, we, too, are " periactin non-compliant " but I don't care. Max

does not need it, so we don't use it. And Dr. H. doesn't even ask us

anymore. All she does is recommend that we restart it if she is not happy

with his weight gain. I truly respect her, even if we do not always agree.

She does seem more accepting of our opinions now. I wonder why?

Jodi

Stopping Periactin

> When we stopped Periactin I was scared to death to tell Dr.

> Harbison. I told myself that I would not lie to her but I would also

> not offer any information that would cause her to yell at me. THis

> is a very difficult situation because I'm not sure why she is so

> intimidating. When she finally asked me about the periactin (6

> months after I had stopped it) I told her the truth. She did not

> yell and she agreed with me. One reason I did not want to tell her

> was because I feel like she uses her observation to get you to do

> what she wants. If she knew that he was off of it, she would comment

> about how small and feeble he was looking. So I wanted to hear her

> say he looked great before I told her he was not taking it. Please

> do not get me wrong, I am also a Dr. H fan but I know that she is

> pushy and she believes that her way is the best and only way! When

> Jon was first diagnosed with RSS we spent 3 weeks in the hospital

> with Dr. Harbison, I know her pretty well. I saw the irritating,

> pushy side of her but I also saw her feed Jon his dinner and play

> with him until 8:30 p.m. because I had a headache and needed to get

> rest. She put on a blindfold and took Theresa out for an exploration

> of the city after Theresa went blind from her Kidney problems. She

> truly goes beyond the call of duty for the kids but she needs to

> learn to take our opinions and observations into account.

>

> I do not know if She is publishing information about these kids but

> she really has mellowed over the past 3 years (imagine that) and

> seems to accept different treatments. I think if you have a good

> defense for stopping the periactin and your childs heigth growth is

> not affected by stopping it, she may agree with you. I noticed on

> Jonathon's chart she wrote PERIACTIN NON-COMPLIANCE, I insisted that

> she change it to DISCONTINUEd PERIACTIN because I did not like the

> implications that I was doing something harmful to Jon by not

> complying to her wishes. She agreed and we have not had a problem

> since. Dr. H does respond to well thought out, intelligent

> arguments. Sometimes I just find it hard to come across intelligent

> when I'm scared to death of her! Hope this gives you some hope!

>

> Pattie

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