Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 Hi and , We got back from vacation last night. Spent a week at the lake in Minnesota.....the weather was pretty good, 70's most days, the water temp was in the 70's. Took the kids out on a pontoon and couldn't pull in the fish fast enough.....caught a lot of blue gills, perch and some rock bass. enough for about two more meals. there was a family that had rented 5 of the other cabins and they caught tons of northerns and gave us a bunch of them, so have 5 meals of that...It's not quite as good as walleye, but they fillet so there is no bones and we all love fish so it will be nice. As for , he had a sinus infection that cleared with Zithromax. We did notice some fine red rash while at the lake, but it went away, so don't know if it was the lake or the med. Dr. B has been emailing me also, stated he is less concerned about now, but still awaiting the CD 40 ligand. Unsure if the NK cell function will stay normal. This is the time of year that this all started, so I am waiting for it to all start over again. Can't seem to get the fear out of my system. As for labs, his IGG was down to 389 and his igm was also low, so I don't know if that means the hyper igm is ruled out or not......I was hoping to have a message from Dr. B when we got back, but nothing. I leave monday evening for Grand forks (250 mi) for igh to see the neuropsych and do all the cognitive testing. School starts on the 30th. I need to get all of Kaitlyn's band stuff on the computer calendar and get things sorted out. I picked up shifts here in town, so won't need to go to fargo until October to work. Will probably pick up one w/e a month in Fargo, just to keep my foot in the door..... Thanks for the thoughts and concerns. We are still having major issues with my in-laws in understanding anything about .....basically my mil is mad at me for putting through all of this and because of that, spends less time with our family. I thought the issues were more about the Lutheran/Catholic thing, but she denies that.....Warren hasn't been real forth coming in explaining things to people and tends to greatly minimize what has gone on and how potentially serious this could be, so it is no wonder that they feel all I do is over react. , I am emailing your comments about being neurotic to warren. As for dealing with the family stress, I have decided I am not going home for Christmas. We have school until the 23rd anyway, and am inviting my family to our house for Christmas. It would be our year to spend Christmas Day with my inlaws, and I am not about to do that this year after the fiasco last year. I told Warren I am tempted to write a letter to his mom explaining jacob's situation etc and why we have made the choices that we have, but doubt that it would do any good. Anyway, thanks for listening, I know that here, people do understand and I have friends, just wish you were close enough for lunch or something. Quoting S <tripletsand1@...>: > > > > > , I hope you figure out the stomach pain soon, we've been going > > through this lately with Conner too. One time was pancreatitis, that was > > pretty obvious, but we almost took him to the ER again last week for > > abdominal pain, thankfully it went away fairly quickly. Did you ever get > > la's blood drawn for Dr. Bleesing? I've been corresponding with him > > recently and he is worried about Conner's swollen lymph nodes. Conner is > > going to see the hem/onc again a week from tomorrow and will be getting a CT > > scan that day too. Dr. B said we would talk again once we get all of the > > results back (our ped suspects Conner has lymphoma, but the hem/onc wasn't > > so sure). Basically, I get the impression that Dr. B is very puzzled by > > Conner's medical issues, this is nothing new, every immunologist or other > > specialist has been puzzled too. > > > > , did you hear back from Cincy yet? > > > > > > Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD, > > immunodeficiency-SCIG, and now adrenal insufficiency), > > Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided), > > Evan (11, asthma and mild hearing loss/unaided), > > and Kelsey - (9 going on 19!) > > www.caringbridge.org/in/connersmith > > > > > > > > > > > > > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole responsibility of the poster and should not be taken as professional > advice. > > > > To unsubscribe -unsubscribegroups (DOT) > > To search group archives go to: > /messages > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 , I took a peek too. What a cutie--love the pig tales!...and , now I know why you were so anxious to get back to work. How I wish my job was that rewarding! Best, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 ---Ann, Yes, I am very lucky to have a job like mine...those little people are a gift from God. They make you smile when you think your entire world is falling apart!!!,PA In , " ae_mcd2003 " <ae_mcd2003@...> wrote: > > , I took a peek too. What a cutie--love the pig tales!...and , > now I know why you were so anxious to get back to work. How I wish my > job was that rewarding! Best, Ann > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 In response to Dale... (glad you are around!) For and - You may want review the following article (by Gelfand et. al.). It reviews the various brands of IVIG and their characteristics (e.g., sugar content) in a nice table. Also, it describes signs of PID in the most up to date synopsis that I have seen to date. - you might be interested in reviewing that part. = ) http://www.medscape.com/viewarticle/474408 mom to CVIDer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Ann, Thank you so much for your well wishes! Did you see my post from Saturday (saying that I got new info from Nat'l Institute of Health)? They kind of summarized what I've seen from different souces about DES, including treatment. Well, the e mail I got said that with DES, sometimes the treatments of drugs and even surgery aren't successful (they said " moderate failure rate " or something like that), but stress reduction techniques and psychotherapy help in some cases. So, you may REALLY be on to something here! He has also been seeing a psychologist recommended by one of our friends and they seem to be working on his dealing with job stress. I'm hoping this means I'm sending him in the right direction for help. So far, he is just a little less stressed, more energetic, and still having spasms, but I'll have to keep you posted on whether or not the spasms start to subside over time (let's hope!). Have a great day! (well, I can only cross 2 toes on each foot...and only when my shoes are off...LOL) > > said: > have some encouraging news to report about . He has been > having accupuncture treatments, 5 of them so far. On the fifth one, > they changed the position of the needles to his right side (they were > on the left). They said that the first 4 treatments were for general > de-stressing and now they can work on his E spasms. The good part is > that he HAS seemed less stressed and depressed, and has a little more > energy! We're crossing our fingers and toes hoping he'll keep feeling > improvement! > Thank you very much for your good wishes . Report to follow. > > I am very interested in what you said about the acupuncture. I personally have come to the conclusion that it does not help per se with either A or DES, but from the reports on this Board, notably from Quincia, who I respect should know a lot more about it than most of us, it does seems to work with tension difficulties. Do you remember telling us how improved was when you were in Las Vegas i.e. away from the pressure of work? This has got to be the same thing, don't you think? His condition HAS to be greatly exacerbated by anxiety. I feel you and he will benefit greatly by continuing down this path you are on. > Good Luck. We all want to see your beloved husband do well. > With love and hope from Ann XX > PS You are very clever to be able to cross your toes !!! > > > --------------------------------- > Try the all-new . " The New Version is radically easier to use " – The Wall Street Journal > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Kim, Your on the list, I'll let you know who your " mentor " will be. > > Hi all, > > Recently a member reminded me of what a roller coaster of emotions my > > journal was. I reread it and it is so true. I think (please no > > offense meant) I really felt a total lack of emotional support after > > I got home from the hospital, not to mean I didn't get a few phone > > calls or some support through this website. To get to the point. When > > Sharon was going to go through her surgery and immediate recovery, I > > decided I would call her everyday come hell or high water and give > > her the chance to vent, cry, show her concern or just say hi. I did > > not have the benefit of having someone who had been " there " before me > > and I was going to make sure she did not suffer what I did. I made a > > commitment to myself to call her everyday, more or less, for 4 to 6 > > weeks. I think Sharon will agree that this made a difference in her > > recovery. I truly think, had I had this type of contact with a post > > revision person, my stress and emotions would not have been so > > terrible. I am offering to be a go between to make arrangements for > > someone who is actively scheduled for surgery and any post > > revisionist willing to make the commitment to call, as close to daily > > as possible for one months time after the dismissal from the hospital > > but including rehab. If you want this type of support send me an > > email. If you are willing to give it, send me an email. I know it is > > a tough commitment to make but it can make all the difference in the > > world. > > > > > > > > > > > > > > --------------------------------- > > Bored stiff? Loosen up... > > Download and play hundreds of games for free on Games. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2009 Report Share Posted October 24, 2009 Phil, How long do you think it would take to feel androgel working? Im thinking it may take a month or so.. ________________________________ From: philip georgian <pmgamer18@...> Sent: Sat, October 24, 2009 9:50:25 AM Subject: Re: Re: Androgel amounts Ade did they up your dose so you can start feeling better. I feel bad you guys have to go through this crap I am not a Dr. and figured this out yrs ago. Co-Moderator Phil > From: Ade <spadeboy@btinternet .com> > Subject: Re: Androgel amounts > > Date: Friday, October 23, 2009, 11:42 PM > Hey there Phil > > Just to let you know - I had to go and see my GP today, as > he was sorting out the Cabergoline and Testogel on a repeat > prescription for me (the endo is still looking after me in > terms of testing and regular assessments) . > > I had my first blood test a couple of weeks ago so he had a > quick scan through the results. Exactly as you > predicted, the testosterone level is now low - in fact, > lower than it was when I first started taking one sachet of > Testogel per day. For the other lads here - Phil did > go through this under the thread " Testogel or Andropatch. " > > I am not sure how this happened, but the prolactin check > was missed off. I have to be re-tested on > Monday. There were other tests done but because the > results were FAO the endo I do not think he bothered looking > through those. > > I will keep you guys posted. I believe it is actually > a week on Monday (not on this coming Monday as I thought) > that I see the endo. > > Take care > ade > > > > > > Helllo all. I am curious to know the mg amounts of > androgel everyone > > was prescribe. I feel like I need more. Any feedback > is appreciated. > > > > > > > ------------ --------- --------- ------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 Wish I'd be able to watch it on the 14th. Looks like it might be good. With the right supports, if they need them, I say go for it. I know of a lady with disabilities who got married to a guy with disabilities. It wasn't a good situation, as they lived with her mother who is more meddling than I am (I admit I'm bad) & he was also very volitule. They were only married about a year, before they got divorced. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 Makes me want to subscribe to HBO to see it, I think it's great and if the family support is there to help them start out way to go and !! H. and http://www.hbo.com/documentaries/monica-and-david/index.html I was wondering what you all thought about this? llen llen Garber Bronfeld gskb@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2011 Report Share Posted May 21, 2011 Great to hear s healing went well! Fingers crossed June 10th will be an uneventful expansion of the longer rod. Is there any expectation of when the replacement will have to be performed? Or, I bet you'll know more on this after he goes in....I'll be thinkin of you guys on the 10th. Keep us posted plzzzz.. (hugs) HRH > Both were seen by Orthopaedics this week. > > to have his cast removed today. Turns out he did break the growth > plate in his wrist. It healed well, and he got a note from the Dr for Tae > Kwon Do " No sparring or push ups for 2 weeks. " The instructors use push > ups as a discipline method in class - and while needs to follow > the rules and be disciplined, the push ups are not the way to go right > now. > > had her pre-op for her up coming VEPTR surgery on June 10. Her new > surgeon is talking about possibly replacing the hook at the bottom with > screws, but we will see. He is anticipating that he can get one more > lengthening out of her long rod and will leave the shorter rod alone. At > her next surgery, he will replace everything with the VEPTR II. Of course, > nothing is set in stone until you actually get in there, so we shall see. > > I asked him about 's neck as I have been noticing she is tipping it > more than she has been lately. He is thinking about having a CT Scan done > of it after the surgery. Her last one was 2005. (He asked me if she had > ever had one and I said " I believe it was 2005 or possibly 2004 " I > remembered pretty well!) > > The funny thing was, for both kids, we were put in the same exam room. I > commented on it and the nurse said they would name it " The Kimball Room. " > I said " Ok, now when do I get my parking spot? " > > Such is my life... > > Quote Link to comment Share on other sites More sharing options...
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