Guest guest Posted May 20, 2012 Report Share Posted May 20, 2012 Does anyone else have a child who is ID as well as having autoimmunity to thyroid and/or adrenals (perhaps more, still testing)? I am wondering who becomes the head doctor in these cases, the Immuno or the Endo? Also, for kids with unexplained eosinophilia, should the adrenals have been checked right away? I'm wondering why our immuno did not know to refer to endocrinology years ago. Thx, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 , my son was diagnosed in February with auto-immune adrenal insufficiency ...'s Disease. He also has auto-immune antibodies to his platelets, auto-immune thrombocytopenia.....He was on IVIG for several years, now on Hizentra....He also has Severe Chronic Neutropenia and is on Neupogen injections 3x/week. The hematologist and immunologist both told me that it's not infrequent for people with immune deficiencies to develop antibodies against their own cells and organs, it's easier on the body to fight its own tissue than to fight invading organisms. He is now under the care of a Pediatric Endocrinologist. This adrenal insufficiency has been very serious for him. He was having intense salt craving for about a year, and fainting episodes with very low blood pressure and slow heart rates (he was even scheduled for  a pacemaker)  Then when he was in the hospital for a bad case of c-diff, he was craving salt, I asked that a cortisol level be done and the 8 a.m. cortisol level was very low. Then after his routine bone marrow biopsy, his blood pressure dropped dangerously low, even after 2 liters of Normal Saline bolus IV fluids, it was terrifying!....also with any cold or sore throat, his blood pressure would drop he would faint, become very very ill and weak. The geneticist referred him to the per endocrinologist, the cortisol level was low as well as his ACTH level was very high....His renin activity was way too high, that's why he was craving salt. .....his body was losing too much salt from his kidneys...Now he is treated for the 's Disease and is doing much better with that....He has to take religiously, Hydrocortisone 3x a day plus with any stress, minor illness, cold, sore throat, any fever, twisted ankle etc.....then he has to take triple dose for diarrhea, higher fever etc.....If he vomits, he has to go to the ER for IV Solu Cortef and IV fluids fast.....and with any emergency he has to receive STAT injection of 100mg Solu-Cortef.....We have instructions to call 911 for any fainting...I'm glad he has a port. He has to have a cavity filled soon....just for that, the hematologist wants him to receive IV Clindamycin before during and after the filling and cleaning is done (he has had sepsis in the past after dental cleaning)....then the endocrinologist wants him to have IV Solu Cortef during the dental work and after...oh also the hematologist wants him to have Neupogen for 7 days straight....and the geneticist said he needs IV fluids the night before and 24 hours after!  So he'll be in the hospital 2 days for a filling and cleaning!....I guess they are being cautious since he's so fragile....But wow this adrenal insufficiency is very potentially serious.....Check out the website for the NADF, lots of good info.....National Adrenal Diseases Foundation. If you suspect an adrenal problem please see the ped endocrinologist......There are Emergency Protocols that need to be followed. Sue From: S <RobRose@...> Subject: Endocrine Auto-immunity Date: Monday, May 21, 2012, 3:19 AM  Does anyone else have a child who is ID as well as having autoimmunity to thyroid and/or adrenals (perhaps more, still testing)? I am wondering who becomes the head doctor in these cases, the Immuno or the Endo? Also, for kids with unexplained eosinophilia, should the adrenals have been checked right away? I'm wondering why our immuno did not know to refer to endocrinology years ago. Thx, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2012 Report Share Posted May 22, 2012 Thanks Sue, I thought that we were going to be referred to the endo, but then his labs came in yesterday and they showed that it could actually be a kidney disorder, because he is wasting potassium as well as sodium. I am hoping that a kidney specialist can also run some of the more advanced tests for adrenals since they will do a 24 hour urine collection either way. I am personally being worked up for addisons, so I assumed that my son and daughter were looking at something similar, maybe they are. The potassium wasting was unexpected! All 3 of us have had problems with vomiting and diarrhea. My son's vomiting is on the increase, so cortisol was the first thought. He also had very slightly elevated blood sugar. We don't know for sure what we are dealing with at this point. > > From: S <RobRose@...> > Subject: Endocrine Auto-immunity > > Date: Monday, May 21, 2012, 3:19 AM > > > > > > > > > > > > > > > > > Â > > > > > > > > > > Does anyone else have a child who is ID as well as having autoimmunity to thyroid and/or adrenals (perhaps more, still testing)? I am wondering who becomes the head doctor in these cases, the Immuno or the Endo? Also, for kids with unexplained eosinophilia, should the adrenals have been checked right away? I'm wondering why our immuno did not know to refer to endocrinology years ago. > > > > Thx, > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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