Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 , , Sorry that I have been out of touch so much lately....I am swamped with all that is going on. I will email you privately as I feel that is the best scenario..... I second what has said....A second opinion never hurts...go with your gut.... Re: *LINDA S* - I know you are probably swamped but I wanted to make sure that you had a moment to consider 's situation -- she seems to have overlapping experiences with you guys. You have had such good luck with . Perhaps you have something to share about dealing with a difficult health care professional/situation? Any tips about advocating for your child? You may have even seen the same doc. jessica Dani's mom CVID sarah larson <mom2gwynn@...> wrote: Hello - When her doc first diagnosed her as immune deficient he said he thought she may need IVIG. However on her third set of labs 1 year later it appeared that she was starting to build titers after her last round of innoculations so we were hoping things were getting better. I no longer think this is the case and would like further blood work as we are obviously not controlling it if she is in the hospital 3 times in 8 weeks. We live in MN and her doc is well known and frequently speaks at the IDF functions. So I never have second guessed him, and I am not neccesarily now but I don't feel comfortable just waiting to see what happens next! He is out of town and so I have not been able to talk to him but I think I am going to voice my concerns as soon as possible. What would you do? Any one else in MN that can suggest a doc. Gwynn sees Dr. Shapiro. He is well known isn't he? Anyone had any problems with him? Thanks, Schulman <dietdoc@...> wrote: " ...does anyone else have a little one whose white blood cell count does not go above normal limits even when they have an infection? " - I am finally getting through all of the messages and finally read your entire post. The answer is, yes, many PIDers have irregular levels of WBCs -- some spike too high for too long (lymph nodes are swollen much of the time) and others run low all of the time. In our case, my daughter will only get to " normal " range with a serious infection. She can't mount a " normal " response. Also, I am really fuzzy about your daughter's history and don't understand why she is not on IVIG or SCIG. What state do you live in? Maybe there are some mom's in this group that can support you in getting answers -- or at least getting your daughter the best possible care. mom to CVIDer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 Thanks , I really look forward to hearing from you!!! ~~ <lmschatz@...> wrote: , , Sorry that I have been out of touch so much lately....I am swamped with all that is going on. I will email you privately as I feel that is the best scenario..... I second what has said....A second opinion never hurts...go with your gut.... Re: *LINDA S* - I know you are probably swamped but I wanted to make sure that you had a moment to consider 's situation -- she seems to have overlapping experiences with you guys. You have had such good luck with . Perhaps you have something to share about dealing with a difficult health care professional/situation? Any tips about advocating for your child? You may have even seen the same doc. jessica Dani's mom CVID sarah larson <mom2gwynn@...> wrote: Hello - When her doc first diagnosed her as immune deficient he said he thought she may need IVIG. However on her third set of labs 1 year later it appeared that she was starting to build titers after her last round of innoculations so we were hoping things were getting better. I no longer think this is the case and would like further blood work as we are obviously not controlling it if she is in the hospital 3 times in 8 weeks. We live in MN and her doc is well known and frequently speaks at the IDF functions. So I never have second guessed him, and I am not neccesarily now but I don't feel comfortable just waiting to see what happens next! He is out of town and so I have not been able to talk to him but I think I am going to voice my concerns as soon as possible. What would you do? Any one else in MN that can suggest a doc. Gwynn sees Dr. Shapiro. He is well known isn't he? Anyone had any problems with him? Thanks, Schulman <dietdoc@...> wrote: " ...does anyone else have a little one whose white blood cell count does not go above normal limits even when they have an infection? " - I am finally getting through all of the messages and finally read your entire post. The answer is, yes, many PIDers have irregular levels of WBCs -- some spike too high for too long (lymph nodes are swollen much of the time) and others run low all of the time. In our case, my daughter will only get to " normal " range with a serious infection. She can't mount a " normal " response. Also, I am really fuzzy about your daughter's history and don't understand why she is not on IVIG or SCIG. What state do you live in? Maybe there are some mom's in this group that can support you in getting answers -- or at least getting your daughter the best possible care. mom to CVIDer Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.