Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 I understand your frustration. Zipporrah and Asenath seem to have difficulty any time viruses hit the home. If one person sneezes or has a runny nose, they both get hit much harder and then of course have some sort of regression, fatigue/weakness, or stroke activity. Currently both girls are struggling with a cold that had just hit me hard today as well. Asenath said her head has been hurting and she has been coughing a bunch and having diarrhea and getting dehydrated with low blood pressures. We have been giving her lots of pedialite to get her through the virus at home and hoping no stroke activity happens. Zipporrah has been hit harder with fatigue issues and is walking around like a drunk would; falling, unable to control her momentum and going straight forward when trying to turn (once resulting in her ending up in the Christmas tree and another time running right into the wall), being very wobbly and getting frustrated big time. I think most of it is fatigue related, but her right side is weaker than before, so not sure what all is going on. Her viral symptoms aren't too bad yet though and I am hoping they don't get worse since the little viral attacks cause so many issues as it is. Concerning aspiration, the only 100% way to avoid it from happening is to not do any oral feedings, but if this isn't needed just yet, then you will want to watch him to see how he is doing each day. On the days he is more fatigued or gaggy, either thicken the food/drinks, or avoid oral feedings. Maybe I should ask if he has a G-tube yet? Without the g-tube you wouldn't be able to NOT feed orally. Either that or maybe you could use a NG-tube for those days where he is struggling more. Has he had a swallow study or an OT evaluation to help with these issues? What do the doctors say about it? See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) crashes > > > I am wondering what you all do to cope w/ crashes. I know that kids get > sick a lot and its just part of life, but they hit zach so hard. I am > starting to agree w/ the allergists assumption of aspiration pneumonias. > He doesn't have it now, but he kind a choked /coughed on a couple drinks > this week and now hes hanging 99.6 temp and not being the boy he was last > week. He was really grumpy and wanting to go to bed . I know being hyped > up about christmas doesn't help either. > > That can wear a kid down. I can tell hes crashing though and I just dont > know how to relax about it because I figure its just in time for christmas > and yet another one he cant participate in w/ the extended family. > > I am going to tell them this time though if he is sick , they are welcome > to visit for desert if infact he does get sick. I just know by his eyes, > hes crashing, call it paranoid, i call it a mothers instinct. I just wish > i knew what to do for him > > What do they do for aspirating? Is there a way to control it? I am sure > we're going to bring it up to the dr. Plus each time he gets sick he loses > so much weight and we lose what hes gained back in the short time he is > healthy. He asks me if he can go outside and play and i try not to let him > around the holidays because hes sick so easy. I hear him say but i'm all > better, see? > > I am just so sad about how sick he gets, it could be worse and i'm glad > its not but He is supposed to be getting a stronger immune system/stamina, > not weaker. > > mom to zach 4 ga2 alexis 5 > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Dear - I haven't had much experience in this department as many have. has had 3 crashes in the past 4 1/2 months and know we are on a verge of another one.... has a suppressed immune system and so getting sick means going to the ER. We try to handle it as best we can, pray alot and lean on others for support. Praying for you.... Annsarah wrote: I am wondering what you all do to cope w/ crashes. I know that kids get sick a lot and its just part of life, but they hit zach so hard. I am starting to agree w/ the allergists assumption of aspiration pneumonias. He doesn't have it now, but he kind a choked /coughed on a couple drinks this week and now hes hanging 99.6 temp and not being the boy he was last week. He was really grumpy and wanting to go to bed . I know being hyped up about christmas doesn't help either. That can wear a kid down. I can tell hes crashing though and I just dont know how to relax about it because I figure its just in time for christmas and yet another one he cant participate in w/ the extended family. I am going to tell them this time though if he is sick , they are welcome to visit for desert if infact he does get sick. I just know by his eyes, hes crashing, call it paranoid, i call it a mothers instinct. I just wish i knew what to do for him What do they do for aspirating? Is there a way to control it? I am sure we're going to bring it up to the dr. Plus each time he gets sick he loses so much weight and we lose what hes gained back in the short time he is healthy. He asks me if he can go outside and play and i try not to let him around the holidays because hes sick so easy. I hear him say but i'm all better, see? I am just so sad about how sick he gets, it could be worse and i'm glad its not but He is supposed to be getting a stronger immune system/stamina, not weaker. mom to zach 4 ga2 alexis 5 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 I agree with Darla...they only way to avoid aspiration pneumonia is the feeding tube....same question have you done an ot swallow study?....they have wanted to do a feeding tube for Max off and on...we simply feel because it is intermittent at best, that can wait until it is really neccessary. Abou tthe family....any chance you can get a little pediatric face mask to wear when company comes to the house? when we recently had to travel with Max, the pulmo gave us disposable masks. ...it is not perfect protection, certainly some...also, in our house a bottle of purell is now placed in many places...it has become second nature before we touch toys and kids etc etc, to 'purell' our hands....the same goes for visitors...first thing they have to do once entering the house...is purell.... maybe it is overkill...yet we cannot take any chances and anything that can help a little provides a little comfort hang in there, you know him best.. happy holidays, rosy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 I agree with Darla...they only way to avoid aspiration pneumonia is the feeding tube....same question have you done an ot swallow study?....they have wanted to do a feeding tube for Max off and on...we simply feel because it is intermittent at best, that can wait until it is really neccessary. Abou tthe family....any chance you can get a little pediatric face mask to wear when company comes to the house? when we recently had to travel with Max, the pulmo gave us disposable masks. ...it is not perfect protection, certainly some...also, in our house a bottle of purell is now placed in many places...it has become second nature before we touch toys and kids etc etc, to 'purell' our hands....the same goes for visitors...first thing they have to do once entering the house...is purell.... maybe it is overkill...yet we cannot take any chances and anything that can help a little provides a little comfort hang in there, you know him best.. happy holidays, rosy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 I understand the moms intuition.. i have alwasy been right when ive 'called' a crash up to a week ahead of time... were just hyperaware of whats 'normal' for our kids... I know if it is aspiration, there are ways of preventing it, the doc may reccomend giving him 'thickeners' in his drinks, I know alot of kids here use them, but i dont know alot about them myself, so i hope someone has some suggestions... I really hope he surprises you and bounces back from this quick this time! > > > I am wondering what you all do to cope w/ crashes. I know that kids get sick a lot and its just part of life, but they hit zach so hard. I am starting to agree w/ the allergists assumption of aspiration pneumonias. He doesn't have it now, but he kind a choked /coughed on a couple drinks this week and now hes hanging 99.6 temp and not being the boy he was last week. He was really grumpy and wanting to go to bed . I know being hyped up about christmas doesn't help either. > > That can wear a kid down. I can tell hes crashing though and I just dont know how to relax about it because I figure its just in time for christmas and yet another one he cant participate in w/ the extended family. > > I am going to tell them this time though if he is sick , they are welcome to visit for desert if infact he does get sick. I just know by his eyes, hes crashing, call it paranoid, i call it a mothers instinct. I just wish i knew what to do for him > > What do they do for aspirating? Is there a way to control it? I am sure we're going to bring it up to the dr. Plus each time he gets sick he loses so much weight and we lose what hes gained back in the short time he is healthy. He asks me if he can go outside and play and i try not to let him around the holidays because hes sick so easy. I hear him say but i'm all better, see? > > I am just so sad about how sick he gets, it could be worse and i'm glad its not but He is supposed to be getting a stronger immune system/stamina, not weaker. > > mom to zach 4 ga2 alexis 5 > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 I understand the moms intuition.. i have alwasy been right when ive 'called' a crash up to a week ahead of time... were just hyperaware of whats 'normal' for our kids... I know if it is aspiration, there are ways of preventing it, the doc may reccomend giving him 'thickeners' in his drinks, I know alot of kids here use them, but i dont know alot about them myself, so i hope someone has some suggestions... I really hope he surprises you and bounces back from this quick this time! > > > I am wondering what you all do to cope w/ crashes. I know that kids get sick a lot and its just part of life, but they hit zach so hard. I am starting to agree w/ the allergists assumption of aspiration pneumonias. He doesn't have it now, but he kind a choked /coughed on a couple drinks this week and now hes hanging 99.6 temp and not being the boy he was last week. He was really grumpy and wanting to go to bed . I know being hyped up about christmas doesn't help either. > > That can wear a kid down. I can tell hes crashing though and I just dont know how to relax about it because I figure its just in time for christmas and yet another one he cant participate in w/ the extended family. > > I am going to tell them this time though if he is sick , they are welcome to visit for desert if infact he does get sick. I just know by his eyes, hes crashing, call it paranoid, i call it a mothers instinct. I just wish i knew what to do for him > > What do they do for aspirating? Is there a way to control it? I am sure we're going to bring it up to the dr. Plus each time he gets sick he loses so much weight and we lose what hes gained back in the short time he is healthy. He asks me if he can go outside and play and i try not to let him around the holidays because hes sick so easy. I hear him say but i'm all better, see? > > I am just so sad about how sick he gets, it could be worse and i'm glad its not but He is supposed to be getting a stronger immune system/stamina, not weaker. > > mom to zach 4 ga2 alexis 5 > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 : Don't feel bad if you can only have the relatives in for dessert. Your child is fragile right now. Even if my able bodied "average" child was sick I wouldn't have the relatives over for the holidays in thinking not to get them sick. I think we set ourselves up for what the holdays should be all about. This year our family won't be going anywhere and not having anyone come to our house either. And in a way I'm looking forward to our time by ourselves as a family. Yes I will miss the hustle and bustle and loudness of laughter with my family. But I'm looking forward to a quiet time with the kids and really reflect on our year. You can also plan another time for a get together when Zach is hopefully better. I hope that Zach gets better and you can figure out what to do for him and for youself. Stay on top of issues is the best way. I hope that he really gets better and that the holidays will be ok for you and your family. Nerenhausen mom to Leah sarah wrote: I am wondering what you all do to cope w/ crashes. I know that kids get sick a lot and its just part of life, but they hit zach so hard. I am starting to agree w/ the allergists assumption of aspiration pneumonias. He doesn't have it now, but he kind a choked /coughed on a couple drinks this week and now hes hanging 99.6 temp and not being the boy he was last week. He was really grumpy and wanting to go to bed . I know being hyped up about christmas doesn't help either. That can wear a kid down. I can tell hes crashing though and I just dont know how to relax about it because I figure its just in time for christmas and yet another one he cant participate in w/ the extended family. I am going to tell them this time though if he is sick , they are welcome to visit for desert if infact he does get sick. I just know by his eyes, hes crashing, call it paranoid, i call it a mothers instinct. I just wish i knew what to do for him What do they do for aspirating? Is there a way to control it? I am sure we're going to bring it up to the dr. Plus each time he gets sick he loses so much weight and we lose what hes gained back in the short time he is healthy. He asks me if he can go outside and play and i try not to let him around the holidays because hes sick so easy. I hear him say but i'm all better, see? I am just so sad about how sick he gets, it could be worse and i'm glad its not but He is supposed to be getting a stronger immune system/stamina, not weaker. mom to zach 4 ga2 alexis 5 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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