Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 > > My worry is having to fight him every single time we would do IVIG > or every time we need to update his lab work with a blood draw. Any > of you got any tricks? Do they ever have to sedate kids for IVIG? > I hope not, that just sounds awful! Rogena, I fear the same things with Ana. We had a blood draw the other day and even the nurses were close to tears at the end, she fights so hard and is such a bad draw. It was the same nurse who always draws her and this was the first time she kept saying she was sorry, even though she did a good job. I feel your pain, the thought of an IV every time is awaful, but sedation isn't a good option either! Double edged sword. Ana 14mo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 We used to use " Magic Cream " ....Emla cream numbs the area so they don't feel the stick. Sometimes it can make it a little harder to get in, but for the most part, we had no problems. He used it faithfully for every blood draw and IVIG from 4 yrs old until he was 9. Then he decided he didn't need it anymore and we have been good since. It's worth a try...and play up the " magic cream " , that what worked for us. (Although the real little ones one understand...) Good luck Kim, Mom to 9 1/2 - CVID Re: Tricks for Pokes? >> >> My worry is having to fight him every single time we would do IVIG >> or every time we need to update his lab work with a blood draw. Any >> of you got any tricks? Do they ever have to sedate kids for IVIG? >> I hope not, that just sounds awful! > > > > Rogena, > I fear the same things with Ana. We had a blood draw the other day > and even the nurses were close to tears at the end, she fights so hard > and is such a bad draw. It was the same nurse who always draws her > and this was the first time she kept saying she was sorry, even though > she did a good job. I feel your pain, the thought of an IV every time > is awaful, but sedation isn't a good option either! Double edged > sword. > > > Ana 14mo > > > > > > 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 March 24, 2006 Report Share Posted March 24, 2006 the end of that one was suppose the say the little ones " don't " understand the magic cream....sorry Kim, Mom to 9 1/2 - CVID Re: Tricks for Pokes? > > >>> >>> My worry is having to fight him every single time we would do IVIG >>> or every time we need to update his lab work with a blood draw. Any >>> of you got any tricks? Do they ever have to sedate kids for IVIG? >>> I hope not, that just sounds awful! >> >> >> >> Rogena, >> I fear the same things with Ana. We had a blood draw the other day >> and even the nurses were close to tears at the end, she fights so hard >> and is such a bad draw. It was the same nurse who always draws her >> and this was the first time she kept saying she was sorry, even though >> she did a good job. I feel your pain, the thought of an IV every time >> is awaful, but sedation isn't a good option either! Double edged >> sword. >> >> >> Ana 14mo >> >> >> >> >> >> 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 March 24, 2006 Report Share Posted March 24, 2006 nogirlsallboys wrote: > I took Cole to the lab today to get his blood work done for our > immuno appt coming up. He had to have the full workup - 5 viles > worth to be exact. I know that s Hopkins hospital has child life pscyhologists who work with your child to help them relax, etc. I can't remember how old Cole is, but I would definitely talk with your doctor about your concerns. I know some adults who always take a " sedation " or " tranquilizer " before IVIG just because the needle scares them to death. But I also know 3 year olds that watch and yell yippee when the nurse gets the blood return. Katy decided she hated the Emla (numbing cream) because it made her veins more likely to blow -- so she just would brace herself and tell them to get it over with as soon as possible. Once it is in -- it shouldn't hurt -- although sometimes Katy would complain that her arm ached a little -- usually when the IVIG bottle was too cold. The advantage of IVIG is that the kids soon learn because you are doing this every month -- that it will hurt for a minute and then won't hurt and you get to have Mom's undivided attention for a couple of hours and nurses loving on you and giving you toys, etc. and special treats and snacks, etc. With a blood draw it's usually random time frame -- and usually when they don't feel good and I think hurts much more than an IV because it's a much larger needle. If after 6 months of IV and you are still struggling, I would suggest looking into either Sub-Q or a port. But a port is a very serious decision and should not be rushed into. Make sure that your child is with you any time YOU have a blood draw so that they can get used to seeing a good role model!!!! In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 What about using EMLA to numb the area(s) prior to the blood draws? The only problem would be if he was not a good stick. Veins do blow when kids freak out and get upset--- EMLA helps with that-but EMLA is a vasoconstrictor and on kids like my ph can make it more difficult to get a line in. ph is not a calm child when it comes to IVs. I once had to chase him down the hall because he was trying to get to the elevator to escape. He would pretend to be a rock, etc.IVIG is possible. You've just got to figure something out that works for you guys. There is an over the counter cream like EMLA called ElaMax (LMX4) it is NOT a vasoconstrictor, so you could buy some of that if he has good veins (i.e. the reason for the blowing and not getting a line is not him being upset.) This is a weird thing that just happened with us.ph was freaking out at one IVIG after the previous one took 11 sticks and a NICU nurse to get the line in.. To distract him, I pretended my cell phone was a camera and he started saying, " Cheese " and we distracted him by saying he had to smile for his picture. Anyway-that is how it came to pass that he now has to have his picture taken every time he gets a pokie. Ask the NuFactor folks! Ha HA-- if you go to our family website www.shwachman.50megs.com <http://www.shwachman.50megs.com/> you can see pictures they took of each other and then a picture ph took of me two inches from my face while I was TRYING to get hooked up. gotta have a sense of humor. We have years worth of pictures of this child. 2 years ago he asked me to take pictures of him while he was a sleep and then he wanted a picture of the doctor performing his bone marrow biopsy. I took a pic of him sleeping, but not of the BMB. We had two hems in the room and one of them was telling me to do it. LOL Well, J woke up and immediately asked where the picture was. So last year when we went in before he went to sleep he looked at me and said, " Take a picture of my bone marrow biopsy, I want to see what it looks like. You said you were going to take one last year and you didn't!!! " Peace Be With You, Pattie Don't let your past dictate who you are now, but let it be a part of who you will become. _____ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 PS-another thing that has helped my boys over the years with all of their procedures and pokes-(been doing this since they were babies !) We got one of those Fisher Price Medical play kits-and then the nurses were nice and let us keep splints and the boys would put an IV in their bears and use tape to tape the arm board on.. They would draw blood with the thermometer-not sure what the new ones are like, but ours was neat-you twisted it and a red line came up - the boys used it to draw blood. It may sound crazy-but by doing this (and they still do they are 8 & 9) it has helped them. The anesthesiologists have given them the masks and they have a collection. It helps for them to act it out and pretend. OTOH ph will be the first to tell you that he does not want to be a doctor-he says, " because doctors are around sick people and I don't want to get sick. " Peace Be With You, Pattie Don't let your past dictate who you are now, but let it be a part of who you will become. _____ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Dale, What is Sub-Q? I am sure we will get Cole past this phase should he need IVIG. I do not want to have to do a port. The lab techs actually mentioned the option of it to me today, but it is not something I think one should rush into. -Rogena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Looks like EMLA cream might be the way to go. Cole has good veins - he just blows because he gets so worked up, holds his breath, stiffens, screams, jerks, squirms...you name it, he does it!! LOL Thanks for the input. -Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def, GERD, possible Celiac) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Rogena, SubQ is working out great for us. If you go to our family website www.shwachman.50megs.com <http://www.shwachman.50megs.com/> and click on the IVIG/SCIG link, you can see pictures of my boys. You don't need a port or and IV-you infuse into the subcutaneous fat small doses each week-no vein access needed. This was great for my ph! Peace Be With You, Pattie Don't let your past dictate who you are now, but let it be a part of who you will become. _____ From: [mailto: ] On Behalf Of nogirlsallboys Sent: Friday, March 24, 2006 11:51 PM Subject: Re: Tricks for Pokes? Dale, What is Sub-Q? I am sure we will get Cole past this phase should he need IVIG. I do not want to have to do a port. The lab techs actually mentioned the option of it to me today, but it is not something I think one should rush into. -Rogena _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 nogirlsallboys wrote: > Dale, What is Sub-Q? Sub-Q refers to subcutaneous injections. The method has been used for years for diabetics and has been used in Europe for years for PID, but only became popular in the US about 3 or 4 years ago. Many doctors are not familiar with it -- but the PID population in general is going crazy over it and many doctors just start with Sub-Q instead of ever using IVIG. It's the same medication -- just infused differently. It has several advantages (and a few disadvantages). The advantages that I've heard are: the parents or patient does it at home I think Patty does it just before the boys go to sleep you don't have to find a vein it's a quick stick like a pin pricking there's fewer side effects because it goes into the blood stream gradually and the kids learn to do it themselves before they leave for college! It made Katy feel less " sicky " socially. It was more " okay " with her to have to do a procedure every Wednesday evening rather than having to meet and schedule a nurse to sit with her for 2 or 3 hours once a month. She really hated having to schedule the nurse and then the nurse would be late, etc. She would start her infusion and then walk to Burger King and treat herself with a sandwich each Wednesday night while she was infusing! The pump fits into a fanny pack and no one notices the tubes running into her belly! She would go to movies (but she said it was obnoxious if it started beeping (I guess when the pump finished). She would go back to the art studio -- whatever she needed to do while infusing. The disadvantages that I've heard are: really, really muscular kids that don't have body fat sometimes find it difficult. It's okay to be small (they use it for newborns) but not muscular! The reason being that they don't have enough body fat and the injection goes into the muscle and it HURTS! it's done every week and sometimes twice a week depending on the dosage it's done by the parents and some parents don't want that Hope that helps. In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 He should be ok once they have established the line and as far as blood work they can draw that once the line is inserted and not have to poke twice for the same visit. That is what the did with jeremiah when he got his first infusion. Cassie nogirlsallboys wrote: > I took Cole to the lab today to get his blood work done for our > immuno appt coming up. He had to have the full workup - 5 viles > worth to be exact. I took him to the same lab we always use, it is > part of DeVos Children's Hospital here in GR and the lab techs are > super with the kids. Well, we had hardly set foot in the door and > Cole was wise to what was coming. I warned the gals that we were > due to have a fight on our hands, and boy was I right! It took us > 15 min. to draw the necessary amount of blood with only a drop to > spare. He had to have 3 pokes to get it all because he kept blowing > the line he was stiffening up and fighting so hard. > > He of course is a little gun shy since having his surgery on Monday, > but he has always fought the needle. When I mentioned that this > blood draw would help us determine his need for IVIG the one lab guy > laughed. He said, " There's no way this little guy will be able to > do IVIG! " . The other lab tech chimed in, " No! Certainly not > without sedation. " > > Now, I must say I really know nothing about how the IVIG thing > works, other than some things you guys have said, but I am pretty > sure once you get the IV in the kid he'd be fine. Am I wrong? > > My worry is having to fight him every single time we would do IVIG > or every time we need to update his lab work with a blood draw. Any > of you got any tricks? Do they ever have to sedate kids for IVIG? > I hope not, that just sounds awful! > > -Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def, > GERD, possible Celiac) > > > > > > > > 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 March 25, 2006 Report Share Posted March 25, 2006 You have a wonderful looking family there Pattie. Cassie Pattie Curran wrote: > What about using EMLA to numb the area(s) prior to the blood draws? The > only problem would be if he was not a good stick. Veins do blow when kids > freak out and get upset--- EMLA helps with that-but EMLA is a > vasoconstrictor and on kids like my ph can make it more difficult > to get > a line in. ph is not a calm child when it comes to IVs. I once had > to chase him down the hall because he was trying to get to the elevator to > escape. He would pretend to be a rock, etc.IVIG is possible. You've just > got to figure something out that works for you guys. There is an over the > counter cream like EMLA called ElaMax (LMX4) it is NOT a > vasoconstrictor, so > you could buy some of that if he has good veins (i.e. the reason for the > blowing and not getting a line is not him being upset.) > > > > This is a weird thing that just happened with us.ph was freaking > out at > one IVIG after the previous one took 11 sticks and a NICU nurse to get the > line in.. To distract him, I pretended my cell phone was a camera and he > started saying, " Cheese " and we distracted him by saying he had to > smile for > his picture. Anyway-that is how it came to pass that he now has to > have his > picture taken every time he gets a pokie. Ask the NuFactor folks! Ha > HA-- > if you go to our family website www.shwachman.50megs.com > <http://www.shwachman.50megs.com/> you can see pictures they took of each > other and then a picture ph took of me two inches from my face while I > was TRYING to get hooked up. gotta have a sense of humor. We have > years worth of pictures of this child. 2 years ago he asked me to take > pictures of him while he was a sleep and then he wanted a picture of the > doctor performing his bone marrow biopsy. I took a pic of him > sleeping, but > not of the BMB. We had two hems in the room and one of them was > telling me > to do it. LOL Well, J woke up and immediately asked where the > picture was. > So last year when we went in before he went to sleep he looked at me and > said, " Take a picture of my bone marrow biopsy, I want to see what it > looks > like. You said you were going to take one last year and you didn't!!! " > > > > Peace Be With You, > > > > Pattie > > Don't let your past dictate who you are now, but let it be a part of > who you > will become. > > _____ > > _____ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 In a message dated 3/24/2006 8:26:00 PM Pacific Standard Time, catholicmomof3@... writes: There is an over the counter cream like EMLA called ElaMax (LMX4) it is NOT a vasoconstrictor, so you could buy some of that if he has good veins (i.e. the reason for the blowing and not getting a line is not him being upset.) _________________________________________________________________________ I would like to add my two centc about LMX cream. Bri had three blown veins when we used it. He has never, ever had a blown vein any other time. Obviously, I can't talk him into even trying it again. Sandi, Mom to --age 13--CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 I remember all too well multiple nurses and me holding down while she screamed for big blood draws. The only thing I could do was tell her when it was coming, be honest that it Would hurt, but only for a second, then tell her how great she did, even if she bloodied somebody's nose in the process. Afterward, we would ALWAYS go to a certain special bakery for an unbelievably awesome thick-frosting-ed cookie. After a " stick " was the only time we ever went there. After many experiences with this, at some point it kicked in that " this IS going to hurt, but only for a second, and HEY, do I get a bakery cookie??? " and it got easier. We also got a play doctor's kit and she could torture me to her heart's content with it, and a really helpful thing was to try to attend as many sticks of other people as we could. So she always got to see me get sticks, we went with Grandma when her CAT needed a blood test, we watched Uncle Dave test his blood sugar as often as we could. When she was around 2 we discovered EMLA cream. We only used it a couple times but I do recommend it because it helped in a roundabout way. First, it numbed so she didn't feel the pain, and that took some of the fear away. No pain, no fear. BUT, she did not like the feel of the cream, the weird, cold feeling that lasted for hours. She realized that the quick poke was not so bad, it was better than hours of this weird cold feeling. So she decided on her own not to do EMLA. But it made her realize the quick poke was not so bad. After the initial endless testing for the dx, the sticks usually encompassed getting Rocephin shots, which are terribly painful. But at least she made the association that at some point after that shot she would start to get better (less sick). So finally the association became #1 I get an awesome cookie and #2 (because of all the Rocephin shots) this will help me get better. She had enough Rocephin that she can still mistakenly make that second association, even if it's a diagnostic something. She stopped crying for sticks by age 3. For years now, she has held out her arm willingly, not shed a single tear and then said " Thank you " to the person taking the blood. They are always stunned. In a way it's sad that she's so " good " at getting sticks, but I try to see the good side, she's become tough about it, realized sometimes you have to put up with that kind of thing for your own good, and it truly doesn't bother her. The really amazingly hysterical thing is, her little sister Kate has seen her get so many shots without crying, that roughly 50% of the shots Kate has gotten in her life, she has NOT cried for, either!! She just doesn't know you are supposed to!! (mom to , age 7, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!) 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.