Re: What hospital?

[Guest guest]

Have

you given any thought to Baylor in Dallas or their sister hospital (that is

staffed with doctors from Baylor Dallas) All Saints in Fort Worth?

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

-----Original Message-----

My question to you all is this: Cooks Children's Hospital here in

Fort Worth is a great hospital. It has kept my son alive for almost 21 years

and he wasn't expected to make it past 13. I do wonder now if we shouldn't try

to consult with another institution such as Hopkins, Mayo? What are your

thoughts? I assume we should probably ask his primary doctor as we would dare

not do anything without his advice or blessing.

[Guest guest]

Have

you given any thought to Baylor in Dallas or their sister hospital (that is

staffed with doctors from Baylor Dallas) All Saints in Fort Worth?

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

-----Original Message-----

My question to you all is this: Cooks Children's Hospital here in

Fort Worth is a great hospital. It has kept my son alive for almost 21 years

and he wasn't expected to make it past 13. I do wonder now if we shouldn't try

to consult with another institution such as Hopkins, Mayo? What are your

thoughts? I assume we should probably ask his primary doctor as we would dare

not do anything without his advice or blessing.

[Guest guest]

Have

you given any thought to Baylor in Dallas or their sister hospital (that is

staffed with doctors from Baylor Dallas) All Saints in Fort Worth?

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

-----Original Message-----

My question to you all is this: Cooks Children's Hospital here in

Fort Worth is a great hospital. It has kept my son alive for almost 21 years

and he wasn't expected to make it past 13. I do wonder now if we shouldn't try

to consult with another institution such as Hopkins, Mayo? What are your

thoughts? I assume we should probably ask his primary doctor as we would dare

not do anything without his advice or blessing.

[Guest guest]

Hi Stacey;

If your son has hyper-IgM syndrome (normal or elevated IgM, but

absence of IgA and IgG), then I'd be most concerned about sclerosing

cholangitis caused by the microscopic protozoan parasite

Cryptosporidium. There are several reports of patients with hyper-IgM

who have sclerosing cholangitis due to Cryptopsoridium infection of

the bile. Here are some reports:

Wolska-Kusnierz B, Bajer A, Caccio S, Heropolitanska-Pliszka E,

Bernatowska E, Socha P, van Dongen J, Bednarska M, Paziewska A,

Sinski E. Cryptosporidium infection in patients with primary

immunodeficiencies. J Pediatr Gastroenterol Nutr. 2007 Oct;45(4):458-

64.

http://www.ncbi.nlm.nih.gov/pubmed/18030213

Winkelstein JA, Marino MC, Ochs H, Fuleihan R, Scholl PR, Geha R,

Stiehm ER, Conley ME. The X-linked hyper-IgM syndrome: clinical and

immunologic features of 79 patients. Medicine (Baltimore). 2003 Nov;82

(6):373-84.

http://www.ncbi.nlm.nih.gov/pubmed/14663287

Dimicoli S, Bensoussan D, Latger-Cannard V, Straczek J, Antunes L,

Mainard L, Dao A, Barbe F, Araujo C, Clément L, Feugier P, Lecompte

T, Stoltz JF, Bordigoni P. Complete recovery from Cryptosporidium

parvum infection with gastroenteritis and sclerosing cholangitis

after successful bone marrow transplantation in two brothers with X-

linked hyper-IgM syndrome. Bone Marrow Transplant. 2003 Oct;32(7):733-

7.

http://www.ncbi.nlm.nih.gov/pubmed/13130323

Levy J, Espanol-Boren T, C, Fischer A, Tovo P, Bordigoni P,

Resnick I, Fasth A, Baer M, Gomez L, EA, Tabone MD, Plantaz

D, Etzioni A, Monafo V, Abinun M, Hammarstrom L, Abrahamsen T,

A, Finn A, Klemola T, DeVries E, Sanal O, Peitsch MC, Notarangelo LD.

Clinical spectrum of X-linked hyper-IgM syndrome. J Pediatr. 1997

Jul;131(1 Pt 1):47-54.

http://www.ncbi.nlm.nih.gov/pubmed/9255191

JJ, Heyman MB, Ferrell L, Kerner J, Kerlan R Jr, Thaler MM.

Sclerosing cholangitis associated with chronic cryptosporidiosis in a

child with a congenital immunodeficiency disorder. Am J

Gastroenterol. 1987 Nov;82(11):1196-202.

http://www.ncbi.nlm.nih.gov/pubmed/3674002

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

>

> That sounds exactly like what he has. The doctor has referred to

it as agammaglobulinemia to us, but he has said several times that he

is deficient in IGG, IGA, IGE.... and he does have IGM..

[Guest guest]

http://geo.yahoo.com/serv?s=97359714/grpId=1243731/grpspId=1705094696/msgId=101\

822/stime=1211227470/nc1=5191951/nc2=5191945/nc3=3848640>

I should say that does have something like the X-linked type,

HIGM1 however it mutates differently because a bone marrow transplant would NOT

help our son. The doctor's aren't sure of the mutation and we deal with the

complications on an as needed situation.

I do ponder if the treatment for PSC is the same at any doctor/hospital? Some

have said that treatment is different at Mayo or Hopkins? Any advice would

be appreciated.

Thanks

[Guest guest]

My only experience of Mayo is the feedback from this group - which overall has been very supportive of the value of getting a second opinion from Mayo. I did hear first hand that if you have PSC, it is worth the time to get your appointment at Mayo in Rochester and if possible with Dr Lindor or Dr Gores directly. If Hopkins specializes in immune deficiencies, then that would be another good second/third opinion. With the rare and unusual, if you have the resources, I would go directly to those with the most specialized experience. From this group and others, the Mayo experience seems to be worth every bit of energy and resources.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06)

-----Original Message-----From: Simpson, Stacey [mailto: ]On Behalf Of Simpson, StaceySent: Tuesday, May 20, 2008 7:15 AMTo: Subject: RE: Re: What hospital?

I do ponder if the treatment for PSC is the same at any doctor/hospital? Some have said that treatment is different at Mayo or Hopkins? Any advice would be appreciated.Thanks

..

[Guest guest]

http://geo.yahoo.com/serv?s=97359714/grpId=1243731/grpspId=1705094696/msgId=101\

827/stime=1211238011/nc1=5191951/nc2=5191949/nc3=3848644>

Thanks for the hope. Yes, at one time my son's high school gave us a lot of

problems because he was never immunized. They actually asked for his medical

records (harassment). My doctor told them he would be happy to send them his

records. It would be a $1 a page and at over 8000 pages he'd need at least two

days to prepare to send the package plus shipping/handling. They decided they

didn't need his records that bad. My daughter volunteered at the hospital Chris

frequents. She was amazed to find that the file room had not just a chart... but

drawers full of medical information re her brother.

The information from this support group is absolutely wonderful.

Stacey (Chris' mom)

Fort Worth, TX