appt. with dr cohen

[Guest guest]

Anne,

Hi, I just wanted to let you know that we made it to Cleveland and

back in one piece! I was very impressed with Dr. Cohen and I am grateful

to all who recommended him to us. He had many suggestions for optimizing

's care, some of which our doc might even use! lol I have an

appointment request in to our doctor, she needs to understand that she

needs to either step up and become an active and useful resource for

Matt, or she needs to step down as Matt's case manager and I will find

someone who has both the time and the initiative to be an advocate for

.

Surprise of all surprises, Dr. Cohen is recommending chelation therapy

for Matt. So now, can you or someone else tell me what this entails?? He

also said that Matt should be seeing, in addition to his hematologist, a

neurologist, a cardiologist, a pulmonary doc, an endocrinologist, a

metabolic doc, and a GI doc. None of which he has seen on any kind of

ongoing basis. Also, he recommended that Matt be fed through a g-tube

instead of his tpn, which he has been on for 12 to 16 hours everyday for

9 months now. So I will speak with our heme, and see if she can handle

everything that Matt's care entails, or I will be on the great doctor

hunt to find someone who can.

Thanks for letting me share.

, mommy to

Adrienne 7, Grace 2, and 11mos. (Pearson's Syndrome)

[Guest guest]

In a message dated 12/14/99 12:11:25 PM Eastern Standard Time,

whyten@... writes:

<< Surprise of all surprises, Dr. Cohen is recommending chelation therapy

for Matt. So now, can you or someone else tell me what this entails?? He

also said that Matt should be seeing, in addition to his hematologist, a

neurologist, a cardiologist, a pulmonary doc, an endocrinologist, a

metabolic doc, and a GI doc. None of which he has seen on any kind of

ongoing basis. Also, he recommended that Matt be fed through a g-tube

instead of his tpn, which he has been on for 12 to 16 hours everyday for

9 months now. So I will speak with our heme, and see if she can handle

everything that Matt's care entails, or I will be on the great doctor

hunt to find someone who can.

Thanks for letting me share. >>

-

Sounds like you have your work cut out for you . . . . glad that you got good

information and something to support your concerns for Matt's care. That is

VERY exciting about g-tube rather than TPN!!!!

Hang in there . . . and keep on sharing!

Kathy C

mom to and (Mitochondrial Encephalomyopathy, Complex I and III

defects)

[Guest guest]

,

I am so glad your appointment with Dr. Cohen went so well (although I am not in

the least surprised!). And it sounds like you came home with wonderful

information. I'm so glad they had had a cancellation and you could get in so

quickly.

Keep us updated!

Featherstone (Mommy to , 12, Complex I)

In a message dated Tue, 14 Dec 1999 12:11:14 PM Eastern Standard Time,

Hyten writes:

>

>

> Anne,

> Hi, I just wanted to let you know that we made it to Cleveland and

> back in one piece! I was very impressed with Dr. Cohen and I am grateful

> to all who recommended him to us. He had many suggestions for optimizing

> 's care, some of which our doc might even use! lol I have an

> appointment request in to our doctor, she needs to understand that she

> needs to either step up and become an active and useful resource for

> Matt, or she needs to step down as Matt's case manager and I will find

> someone who has both the time and the initiative to be an advocate for

> .

> Surprise of all surprises, Dr. Cohen is recommending chelation therapy

> for Matt. So now, can you or someone else tell me what this entails?? He

> also said that Matt should be seeing, in addition to his hematologist, a

> neurologist, a cardiologist, a pulmonary doc, an endocrinologist, a

> metabolic doc, and a GI doc. None of which he has seen on any kind of

> ongoing basis. Also, he recommended that Matt be fed through a g-tube

> instead of his tpn, which he has been on for 12 to 16 hours everyday for

> 9 months now. So I will speak with our heme, and see if she can handle

> everything that Matt's care entails, or I will be on the great doctor

> hunt to find someone who can.

> Thanks for letting me share.

>

> , mommy to

> Adrienne 7, Grace 2, and 11mos. (Pearson's Syndrome)

>

> > Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

,

Thanks, and I will!! We were very lucky that Dr. Cohen could see us so

quickly, and that he has agreed to see on a regular basis (every 3

months). At last, something to work with.

, mommy to

Adrienne 7, Grace 2, and 11mos (Pearson's Syndrome)

KnoxVolNut@... wrote:

> From: KnoxVolNut@...

>

> ,

>

> I am so glad your appointment with Dr. Cohen went so well (although I am not

in the least surprised!). And it sounds like you came home with wonderful

information. I'm so glad they had had a cancellation and you could get in so

quickly.

>

> Keep us updated!

>

> Featherstone (Mommy to , 12, Complex I)

>

> In a message dated Tue, 14 Dec 1999 12:11:14 PM Eastern Standard Time,

Hyten writes:

>

> >

> >

> > Anne,

> > Hi, I just wanted to let you know that we made it to Cleveland and

> > back in one piece! I was very impressed with Dr. Cohen and I am grateful

> > to all who recommended him to us. He had many suggestions for optimizing

> > 's care, some of which our doc might even use! lol I have an

> > appointment request in to our doctor, she needs to understand that she

> > needs to either step up and become an active and useful resource for

> > Matt, or she needs to step down as Matt's case manager and I will find

> > someone who has both the time and the initiative to be an advocate for

> > .

> > Surprise of all surprises, Dr. Cohen is recommending chelation therapy

> > for Matt. So now, can you or someone else tell me what this entails?? He

> > also said that Matt should be seeing, in addition to his hematologist, a

> > neurologist, a cardiologist, a pulmonary doc, an endocrinologist, a

> > metabolic doc, and a GI doc. None of which he has seen on any kind of

> > ongoing basis. Also, he recommended that Matt be fed through a g-tube

> > instead of his tpn, which he has been on for 12 to 16 hours everyday for

> > 9 months now. So I will speak with our heme, and see if she can handle

> > everything that Matt's care entails, or I will be on the great doctor

> > hunt to find someone who can.

> > Thanks for letting me share.

> >

> > , mommy to

> > Adrienne 7, Grace 2, and 11mos. (Pearson's Syndrome)

> >

> > > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

> > Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

Hi ,

I'm sorry to not have answered you but Zach was admitted Monday for r/o

sepsis. For the first time in history he did not have anything grow on

cultures -we are so relieved!!!! he came home Wed and that day Sam was

admitted for his IVIg infusions. At least both got their much needed blood

and will have energy to enjoy Christmas. Sammy is still in, (my husband is

up there tonight) but will be home by Mon night at the latest.

I am thrilled about your appt with Dr. Cohen although I knew he would be a

wonderful source of help to you. Will you be returning to see him in the

near future? have you been able to discuss any of this with the

hematologist?????

I am interested about the tube feedings - for what reason has your doctor

never wanted Matt to be tube fed?

Today we had a long meeting at the hospital about exactly your issue - who

is going to be the captain of the team. We have been round and round with

this issue for months. A few weeks ago I went to the VP of medical

Affairs, who I know from working on a project with, and asked for his

input. We finally have a clear plan with a nurse as a case manager and 2

attending who will share the responsibility. One is our surgeon, who has

always been there for us but lacks some of the medical expertise. the

other is our infectious disease/critical care doctor. . They spoke with

Dr. Cohen today and we will continue to follow with him and they will look

to him as their expert. For the first time I feel like we have a clear

plan .

I hope that you will be able to come up with a plan as well. I have been

literally sick with frustration and worry and for the first time in months

I feel some peace.

Anne

[Guest guest]

In a message dated 12/17/99 11:18:20 PM Eastern Standard Time,

juhlmann@... writes:

<< hope that you will be able to come up with a plan as well. I have been

literally sick with frustration and worry and for the first time in months

I feel some peace.

>>

This is worth its weight in gold. I am so very happy for you and relieved!

Kathy C

[Guest guest]

Anne,

I'm so glad to hear that you have finally got a plan to work with. I know that

we are just beginning

that struggle, and I too have been sick and so very tired of going round and

round trying to find a good

team for . Now, not only do the doctors at our hospital not want to be

responsible for Matt, some

of them are refusing to consult as well. The entire metabolic team at our

hospital refuse to even see

. They say it is because they don't know anything about how to take care

of Matt, and I appreciate

their honesty and willingness to say so. But if they think they can't take care

of him, since it is

honestly a metabolic disorder, who in the world do they think can care for him

any better???? I keep

trying to explain to them that we will continue to see Dr. Cohen, and probably

Dr. Boles as well, but we

need someone here to manage Matt from day to day. It's just so frustrating

because while everyone is

arguing about whether they should take care of Matt or not, his health is

declining slowly but steadily.

To answer your question about g-tube/tpn, our doctor feels that it is better

for to use tpn

because we can control how much he absorbs, whereas with a g-tube, that would be

hard to do because

's malabsorption is so bad. So it does make sense, but even knowing all

that, every other doc we've

talked to still says Matt should be fed into his stomach. I'm pretty confused

about the whole issue, to

tell you the truth. It seems that no one can agree on anything about Matt,

everyone just bickers back and

forth, and so nothing ends up getting done at all. It's all so confusing and

frustrating. Our hematologist

actually suggested to me yesterday that I consider moving to another area of the

US to be closer to

doctors for Matt. I just don't know what to do.

Well, good luck to you and yours over the holidays. I hope everything goes

well for you all. I'm holding

out for Matt to be home on his birthday (the 23rd) and Christmas, and then we go

to L.A. to see Dr. Boles

on January 24, so keep your fingers crossed for us!

Juhlmann wrote:

>

>

> Hi ,

> I'm sorry to not have answered you but Zach was admitted Monday for r/o

> sepsis. For the first time in history he did not have anything grow on

> cultures -we are so relieved!!!! he came home Wed and that day Sam was

> admitted for his IVIg infusions. At least both got their much needed blood

> and will have energy to enjoy Christmas. Sammy is still in, (my husband is

> up there tonight) but will be home by Mon night at the latest.

>

> I am thrilled about your appt with Dr. Cohen although I knew he would be a

> wonderful source of help to you. Will you be returning to see him in the

> near future? have you been able to discuss any of this with the

> hematologist?????

>

> I am interested about the tube feedings - for what reason has your doctor

> never wanted Matt to be tube fed?

>

> Today we had a long meeting at the hospital about exactly your issue - who

> is going to be the captain of the team. We have been round and round with

> this issue for months. A few weeks ago I went to the VP of medical

> Affairs, who I know from working on a project with, and asked for his

> input. We finally have a clear plan with a nurse as a case manager and 2

> attending who will share the responsibility. One is our surgeon, who has

> always been there for us but lacks some of the medical expertise. the

> other is our infectious disease/critical care doctor. . They spoke with

> Dr. Cohen today and we will continue to follow with him and they will look

> to him as their expert. For the first time I feel like we have a clear

> plan .

>

> I hope that you will be able to come up with a plan as well. I have been

> literally sick with frustration and worry and for the first time in months

> I feel some peace.

>

> Anne

>

> > Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

,

I just finished reading some of the old email from this week and wanted to

say that my heart just breaks for you. maybe because I can imagine some of

what you are feeling although I know that none of us can ever truly know

exactly what it is like to walk in another's shoes.

I want to tell you not to give up even though I know that is easy for me to

say and not so easy for you to do. I felt the fatigue you describe so much

of this past year - especially this fall. I just did not know how much

more I could fight when it seemed like all was hopeless. I don't have any

answers for you with the sleepless nights and the emotional drain of

wanting to meet 's needs and your girls' needs as well. I feel as

if I have missed huge chunks of each of my children's lives while attending

to one boy or another at the hospital. I try to take one day at a time .

It's all I know to do. It's not the way I would choose to be a parent -

constantly feeling like someone has been shafted. but , I do know

that my girls are learning other lessons that I could never set out to

teach them - about love and giving and acceptance and joy in the every day

things of life. Trust that your girls are as well.

I am saddened and angered by your doctors responses. I want to say take

him for another opinion but in essence that is no different than them

saying take him to another hospital. There is no reason why can

not get the care he deserves at his home hospital. I am holding out hope

that the metabolic doctors will see him again and be willing to share the

responsibility with Dr. Cohen and Dr. Boles guiding them.

Does your hospital state that they deliver family centered care? if they

do you might try going to the VP of medical affairs or the chief of

pediatrics and diplomatically explaining your situation and that you feel

that the lack of coordination of care for Matty is not family centered and

is directly affecting the efficacy of his care. You are so eloquent and

expressive when you write and I know you could say or write something that

would prompt some help for you. I know you feel that this requires energy

you don't have right now. if I can help you write anything let me know. I

just wish I could do more.

As for the G tube versus central line what we have been told is that even

if the kids do not absorb anything that feeding some into their GI tract

offers benefits to them. It prevent their GI tract from atrophying and as

well it stimulates the production of certain enzymes which protect the

liver. Also it prevents bacterial over growth which comes from nothing

going through the gut. My kids have a habit of translocating that bacteria

out of their gut and into their blood - aka sepsis and the feedings

minimize this.

Zachary receives about 25% of his calories from jejunal feeds. Sam used

to receive about 5% of his feeds this way. his jejunostomy has to be

revised so currently he receives all IV nutrition but we do plan to attempt

surgery in Feb. Even if only an ounce a day our surgeon and GI are

convinced this is a benefit for them.

had a naso jejunal tube at 8 months until 12 months to make sue he

could tolerate tube feedings. At 12 months we did the surgery.

Did Dr. Cohen suggest growth hormone stim testing to be repeated?

One final thing with the chelation - our hematologist is not going to

chelate Sam right now because he measured his iron binding, (I think this

was the test) and this was not 100% saturated. has this test been done on

Matt? I wonder if you could show that he is 100% saturated if she would be

swayed to chelate. Also would she be willing to call or email dr. Cohen

and perhaps hear his reasons for feeling so strongly???

I agree with the others who have said to just honestly speak to the

doctors and tell them you understand the risk but you are willing to take

it. I think this was what finally got our doctors to behave better. I

explained to them that I was not in denial - I understood that there was

nothing that could make my children healthy again. And I understood their

prognosis was terminal. But, I said that I believed firmly that they had

hope if we micro managed them - hope to live long enough for better

treatments and perhaps a cure. But if we did not get on top of things we

may as well just stop the treatments we are doing now because all hope

would be lost.

Sorry so long - I only wish I could offer more than words right now.

Anne