hi to all,
just wanted to give you an updat on Lauryn. we did find out that she IS thal major. one of her drs said they determined this because of the 100% hbf. he only did the hemo. electrophoresis, NOT the dna. he wants an electrophoresis done on my husband and i to see exactly what mutation we have.I THINK THEY SHOULD DO THE DNA TEST ON HER, RIGHT?
when i asked the md to do the dna test on her, he said it would not be necessary, because it doesnt change the fact she has thal major?!
needless to say i called eva chin at caf,and im getting a referral to phx childrens hopital for a second opinion. NOT TO MENTION LAURYN WILL BE THE ONLY THAL MAJOR KID AT HER DRS OFFICE.
the thing that puzzles me about the fourmds at this office is, they all trained in michigan (where thomas cooley) trained and they seem to be so ignorant. when iasked one of the drs about wheatgrass, he said"what is wheatgrass?".. ummm shouldnt he know that? also i asked if i can give lauryn formula with iron..( i cannot breastfeed anymore because of medication i am on) and he said..."that is a very good question, i dont know".
i also am going to try to go to oakland to meet with dr vinchinski, and get his opinion. im convinced she has thal major, dont misunderstand, but i want a professional who knows EXACTLY how to treat Lauryn and i need someone whos knowledgeable about ALL options.
the drs keep talking about bmt, but i know my husband and i will not concieve again,plus.....we wouldnt take the risk. i have so many questions, still... maybe you guys can answer.
if we are NOT doing the bmt, then why cant our family members donate blood? i understand why not in conjuction with the bmt, but why not otherwise??
the direct donor program... i heard statistically its not safer getting blood from someone u know (B/c of the person possibly hiding their business/truth, in fear of denying your child blood in other words GUILT) BUT>>> dont they screen the blood anyway? what if ur family member/friend doesnt know if they have a disease?
![Huh? ???](http://www.thalassemiapatientsandfriends.com/Smileys/classic/huh.gif)
the dr also said that there is a 1:1000 chance that my husband and i were misdiagnosed and that lauryn can have a "lesser severe form of major". ISNT IT BLACK/WHITE???whats with this new possibility?
![Huh? ???](http://www.thalassemiapatientsandfriends.com/Smileys/classic/huh.gif)
funny thing is that i am RELIEVED that i know what she has and we dont have to wait/wonder anymore.
i know now, what needs to be done and it is what it is. THERES NO CHANGING IT,JUST DEALING WITH IT.everyone has a purpose, and maybe lauryns purpose is to pave the way for a cure... who knows?? but i will be an advocate for this condition any way possible.
take care
![:heartred](http://www.thalassemiapatientsandfriends.com/Smileys/classic/heartred.gif)
christine