OT - LUPUS and ITP in CHILDREN - Page 1

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by Dawnmarie on 02 November 2004 - 06:11

Hi everyone.. i know this is a GSD Board but i am desperate to help my cousins little boy and since this board goes all over the World, thought I would give it a shot. Without out getting into the graphic horrible details, my cousins little boy Joshua is 4. He has I.T.P and now diagnosed with LUPUS. Normally these two disorders can be treated typically without problem, however, there has been only one known case of these two diseases together and its making the little boy throw blood clots and he presently has 2 untreated in his little groin, thigh area. this can be very deadly and its very painful for him all over his little body. My cousin lives in FL and presently treating at the Miami Childrens Hospital. I personally think they should be in CT like at Newington, or St Judes or the hospital in Boston, but i dont know their insurance. Does anyone know of a child that has ever had the two of these diseases together? We are looking for support groups and direction. Last i heard there was a Reumatoid Dr in Canada that was the only one who ever treated one case where the child had this. Lupus is not usually a childhood disease but can happen, but usually in young girls, not in small boys. you can email me at vonwymargsd@optonline.net I sincerely appreciate prayers and or direction Regards, Dawnmarie

by elizabeth on 02 November 2004 - 06:11

Dawnmarie, my best wishes for your dedication and I will "light a candle" as no child should suffer because of any disease.Sincerely my prayers, Peace.

by Amaras on 02 November 2004 - 07:11

Dawnmarie, I would also like to send you my best wishes for your cousin's little boy...I am a nurse and know that Miami's Children's hospital is an excellent facility. I'm sure the doctors there can speak to other specialists @ St. Judes or another hospital for a consultation...I will keep him in my prayers.....

by Dawnmarie on 02 November 2004 - 07:11

thank you both very very much. i sincerely do appreciate the thoughts and candle. Amaras, i was losing a little faith in Miami because although i am retired from Emergency Medical Field... and i know how things can get... but ya know how sometimes Drs you know... think they are doing all they can but feel maybe the path isnt worth going down.. i dont know.. i know my cousin has faith in them... but part of me wants to grab them and get them up here to YALE or somewhere!!! i couldnt take it anymore and just started emailing my whole address book and came here, figured maybe someone somewhere might know something.. it hit me just a little while ago, while i was writing to the other post and my aunt had emailed and told me how bad it is getting... if you could see this little boy he is soooo cute, all kids are cute... but this little boy looked like a little cherub when he was an infant... big chubby face and smile that would melt your heart. Kids and dogs are my weakness... they are soooo innocent in this world. thanks again! Dawnmarie

by Amaras on 02 November 2004 - 08:11

Dawnmarie, I know how you feel. Kids and dog are my weakness also...My mother's double 1st cousin (only in N.C.) the absolute picture of health until recently diagnosed with a brain tumor. She's only in her 50's and never been hospitalized, suddenly started having HA's, & the Dr's. @ a small rural hospital treating her for migraines... I told my mom she needed a CT *& MRI right away but....Finally they take her to Baptist Hospital in Winston Salem , N.C. and they diagnose her with brain tumor....and she has weeks to live. Her family sent her to a specialist in Houston for a 2nd opinion and there's nothing that can be done. She's had radiation tx.'s and they aren't working. She has weeks to live....Please keep her in your prayers too.I know we are off the subject of GSD'S but Doris always asked about my dogs and Simon the cat....So I'm sure God will have a place for her....By all means if you think it will help the little boy, urge the parents to seek a 2nd opinion for a World Renowned Hospital...

by Amaras on 02 November 2004 - 08:11

Sorry I meant to say from instead of for... Anyway you understand....God Bless You....

ZVZW

by ZVZW on 02 November 2004 - 08:11

Hello Dawn, I wouldnt say that Ct would be best for the child , 2nd cousins child has ITP, and she was sent to some of the very best in the US. Tulane University Hospital in New Orlens , and then Washington University in St Louis have some of the best doctors in Rheumatoid medicene today. He is currently doing the DHEA treatments and responding in a wonderful manner. I agree with you halfpart on St Judes,but they are cancer Specialist. Jenn took her son there but they couldnt do too much but the labwork for him, and a final diagnosis. Does the child have Diabetes as well by chance? I will put some prayers into the bIG man for you and yours. Regards, Jerry Hicklen

ZVZW

by ZVZW on 02 November 2004 - 08:11

Sheesh the spelling!

by Dawnmarie on 02 November 2004 - 14:11

jerry, at one time his suger was off, but ya know i am not sure how it is now. I dont know where is the best.. i always think of CT because of Yale, i think Shelly would go anywhere to find treatment. someone emailed me about St Lukes in KC... i didnt know about that hospital. the thing is because he has both going on and typically by themselves, basically treatable... but cant figure out how to treat it successfully yet. those damn hurricanes didnt help either... my cousins house was so flooded and so bad, they didnt get help for weeks, and there was grose bacteries and junk all over and the poor thing got sick from that too.. now they are living in a tiny popup camper.. just one thing after another.. i know there are worse off in this world and Shelly being a woman of GOD she knows this.. but she just is getting so very very desperate to save her boy.... thanks for prayers very much. amaris i said prayers for your aunt and we appreciate the thoughts and post just awful all this illness.. Dawnmarie

ZVZW

by ZVZW on 02 November 2004 - 14:11

Dawn St Lukes is a good one too, but St Louis has aa few Docs whom are known far and wide, as well on an International realm. The same Rheumatologist that took care of the mother in the Country Group " The Judds " and her Hepatitis is there and she has done well, as well I know of four other people from Texas that have went there. If you need me to I can his direct name and all from my cousin?





 


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