Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Dear Ursula: Sorry to hear about Macey's extra iron in the fire. Will she be insulin dependant or tablet insulin replacement? boy and I thought we had a balancing act to follow. She is lucky she has such a well informed mom to deal with all the extras. I will keep you in our prayers and hope the murmur is benign to deal with. God Bless and try and have a Happy Fourth of July! Thanks for the advice on the tylenol and atarax. I wish I knew where the dizzyiness is coming from when she is infused. God Bless and a hug to Macey, annette mom to Alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: " the call " >Date: Wed, 30 Jun 1999 23:41:58 -0400 > > > >Today we received a phone message from Macey's pediatric Endocrinologist, >she said that Macey does have Diabetes Insipidus and that she would > " benefit " from taking DDAVP. She asked that we return her call and also >let her secretary know the phone number of our pharmacy so that a DDAVP >prescription could be called in. > >I have put some DI links on Macey's links page if anyone wants to read >alittle more about it. > >Antidiuretic hormone (vasopressin) is a hormone that is normally produced >in >the hypothalamus of the brain. It controls the way the kidneys remove, >filter, and reabsorb fluids into the blood stream. When there is a lack of >this hormone (or when the kidneys cannot respond to the hormone), fluids >pass through the kidneys and are lost through urination. Therefore, a >person >with diabetes insipidus must drink large quantities of water in response to >extreme thirst, to compensate for the water loss. > >I'm not sure yet how or if this will complicate her PID. We have infusion >next week and I'll discuss it all with her immuno then. For now we're glad >to get her on medication and keep her from the potty every hour or every >other hour. Plus we hope this will help with the constipation and >headaches. > >Macey's chest has cleared. After several days of frequent Albuterol and >heavy medication. I believe it was inflammation of her lung tissue from >exposure (the theatre trip) and makes me wonder how damaged her lungs are. >Egleston did not like what they heard when they listened but there are two >thoughts to that 1) it obviously wasn't too bad because they proceeded with >the testing and 2) she never coughed up anything or had other signs of >infection. > >I mentioned the murmur to the ped secretary when I called to let them know >about the DI diagnosis. Told her that if the ped wanted to check it out >herself then just let us know. No call from the ped so no news is good >news. > >Sue - I'm glad to hear Chris' surgery went well. Hopefully this will be >all >he needs for a while. Macey also takes several combinations of sedation >and >anesthesia to go under. We've had a bad experience with liquid Versed so >we >stick with IV Versed for pre-sedation from now on. When she got liquid >Versed for pretreatment before her port was pulled it took her 1 1/2 hrs >longer than they thought to bring her around. Meanwhile me and her dad are >upstairs pacing and all they say is " well we can't wake her up yet " . Then >when she had the MRI and was having general anesthesia for it we mentioned >it to anesthesia. They said they've had several children react to the >liquid Versed that way. So now we're told to use IV Versed. Something >about the body not metabolizing the liquid as quickly so it's harder to >come >out of. Her wake up from the MRI was much smoother and much quicker. With >very little grogginess and irritability. > >Helen - still praying and thinking about you. Good luck with the scans >this >week and let us know how you're doing. > > - sorry to hear the infusion went so bad. I'm a big port advocate. >Even though Macey lost hers to staph we still believe it was because she >was >off IVIG and the staph was opportunistic. If they could ever guarantee me >that she wouldn't be trialed off again I'd have another put it. But while >she's still young and while we're still trialing her off every other year >she'll have to stick it out with the peripherals. all I can say about >putting in a port is that I would recommend a pediatric surgeon who does >alot on chemo kids and that it's given about 2 weeks after put in before >it's accessed for the first time. Good luck and let us know what you >decide. > > - hope things are looking better tomorrow and the ped has good >news. The protocol letter sounds like a good idea. Especially since there >are other people covering for your ped. Might be worth discussing. > >Annette - I know this sounds probably useless now but we use Tylenol and >Atarax. Maybe it's that it's acetaminophen and not ibuprofen and maybe >it's >that Atarax is alittle stronger than Benadryl I've heard but they've seemed >to work for almost 2 yrs now. Just a thought and alittle info from the >IVIG >infusion journal. > >Well I'm off to search for more info on the DDAVP. Night folks. Love to >all and hugs and kisses to the pumpkins. > >Ursula Holleman >Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left >kidney reflux, Sensory Integration Disorder) >ICQ # 28592349 >http://www.icq.com > >PedPID email list archives >http://www.netpage.org/PedPID/_PedPID/ > >PedPID email list introductions >http://www.netpage.org/PedPID/_PedPID/introduction.htm > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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