funny

[Guest guest]

Hello everyone!

Ever had one of those moments when you just laugh? My son tells us at 8 tonight

that he feels like crap and NEEDS his SubQ. (He is 14 and does NOT ever ask for

them.) We talk him into letting us stick him w/o Emla to cut the time down. How

to warm the Gamma quickly? My smart self says, " I can put it under my boob to

warm it. Thank goodness I'm in the middle of a hot flash-it'll do the job

quickly. " You could have heard a pin drop with the jaws of my husband and son.

I thought it was hilarious after I realized I had said it out loud.

From: sudubo@...

Date: Thu, 12 Aug 2010 17:29:30 -0700

Subject: Re: Cincinnati Children's, jamie

I agree ....with all their complex cases, it's time they get some

mitochondrial specialists. In April when we were there, they were thinking

about sending e to Cleveland Clinic, apparently they have a mito clinic.

But we saw Dr Koenig in Houston after we came home....but yes I do think it's

time Cincinnati Children's develop a mito clinic....especially since the doctors

of the other specialties are aware of the disorders and would probably have

plenty referrals. Sue

From: Jefferson <jamie@...>

Subject: RE: Cincinnati Children's

Date: Thursday, August 12, 2010, 4:13 AM

I'm wondering if it's a worth a trip to a place like Cincinnati children's

for someone like us. My son is a mystery. He is constantly fatigued (without

doing anything, walking), has muscle weakness, low tone, poor coordination,

asthma, GERD, inflammatory bowel and arthritis. He has low normal IgG but

defective antibody formation from multiple vaccines - tetanus, pnumococal.

Dr suggested IVIG last year but insurance denied claim. He is constantly

sick with upper respiratory infections since he was 18 months. He is also

developmentally delayed. There is one other thing - he's always been very

small, petite, and same weight for years now.

The doctors we've been to run some tests and then send us away usually

saying they found something unusual, different, etc but he is always sub

clinical for a dx. I leave feeling ok initially but then why is he

constantly sick? we're always back again. From last September through June,

he was healthy for three days. I'm not sure if there really is something

global that is wrong that can tie everything together and whether I should

pursue it or just give up on it? Would the doctors at Cincinnati shoe us

out? After the thread recently about MITO - I'm just wondering. Has anyone

had to search hard to get a diagnosis or figure out what was really going

on? Thanks in advance.

_____

From: [mailto: ] On Behalf Of

Murrell

Sent: Wednesday, August 11, 2010 7:56 AM

Subject: Re: Cincinnati Children's

We will be there definetly on August the 23rd and also on September 13th and

14th. During those visits we will arrive on the 12th. I know we will also be

back November 8-10 and one group of appointments in October but I am not

sure

dates on those yet.

We really like Dr Bleesing. He immediately said I think your daughter is

aspirating because her infections are limited mainly to respiratory and he

also

wanted us to reconsider the possibility of Cystic Fibrosis despite the

negative

sweat tests. Our nurse coordinator in immunology says he likes to take

things

piece by piece and that is definetly what he is doing with us. He did one

set of

testing but she said he would actually do further testing. Her immune

responses

to vaccines were not what he wanted to see so he suggested getting her

revaccinated and then retesting in 4-6 weeks. However, Lillian will be on

Methotrexate starting on Friday so it would actually not do any good to go

that

route. When he found this out, he said he was going to have to get with some

others and talk and get back with us. I liked that though. I like a doctor

willing to say I am not sure what to do but I will figure it out.

We were told that Dr is semi-retired so we were really thrilled that

he

even accepted Lillian as a patient of his. We are hoping he can piece some

things together for us. What kinds of things does he want to know in the

appointment though?

Who do you use in Rheumatology? We were told by a doctor locally that if we

have

to use Pulmonology that Dr Cotten is amazing! My daughter has definite

airway

issues that has shown up on bronchoscopy. She continues to get frequent

respiratory illnesses and just can't get rid of them once she does get them!

We are just starting our journey at Cincinnati Children's and learning

quickly

how little our doctors here knows and how mismanaged her care has really

been

from the beginning. We are loving the hospital there!!!

Does anyone have experience with the Mc House there? Hotels are

getting EXPENSIVE!

________________________________

From: kristinz4 <kristin-smith@...

<mailto:kristin-smith%40comcast.net> >

<mailto:%40>

Sent: Wed, August 11, 2010 8:26:20 AM

Subject: Cincinnati Children's

I thought I'd highjack the posts regarding Cincinnati Children's hospital, I

wanted to chime in and say that we are there regularly, so let me know if

any of

you are heading that way! We will actually be there tomorrow.

We also see Dr. Bleesing for immunology and he was our primary transplant

doctor. We think he's a genius and don't believe Conner would have been

diagnosed with NEMO if not for him. Cincinnati has the ability to do

extensive

immune testing and I highly recommend going there for parents who are

searching

for a more precise diagnosis. Bleesing was the one who finally diagnosed the

complement deficiency in my husband and children. None of the other

immunologists tested for it, either due to lack of testing availability or

lack

of knowledge. My family also has some other irregularities in immune

function,

but thankfully nothing too serious and everyone has been quite healthy in

recent

years thanks to some of the environmental changes Bleesing suggested.

We don't see Dr. , but he is a national legend when it comes to bone

marrow failure issues. People come from all over to see him. He did Conner's

bone marrow biopsy before transplant and is the sweetest guy (although

semi-retired now).

The other specialty we love there is Pulmonology, I highly recommend Dr.

Wood.

Thankfully we haven't needed too many other specialties, other than urology,

dermatology and rheumatology. I can recommend names in those departments, if

needed.

Hope to catch up with some of you there!

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids