Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Marcel, I'm so glad that things are working out so well! And GREAT that she is actually getting excited herself about how well she's doing and looking forward to showing the therapist!!! And I'm glad you can get some rest now too! > I wanted to give an update of what happened sins last week. We were having a > hard time with our oldest daughter bedtime routine. She thinks that she > urinate on everything. So at bed time it gets even worse. We had a few night > that we were up pretty much all night, and we were very tired during the > day. So we talked on Monday with the therapist and she said that we need to > hang in there. As long we are consistent with the plan this all will get > better in a few weeks. The therapist also told our daughter that getting > angry at us was not going to help her. To make a long story short, That > night our daughter went to sleep without our help, she slept through the > night and the next day she started to keep track of how she was doing She > went to the bathroom without wiping herself, she started to do her exercises > or homework. Last night she woke up at 2:00 o' clock, she got angry yelled a > while but calmed down after about 30 minutes. The next 30 min she made some > more charts and went to bed. So we are very excited, because she is taking > charge here to help her self. I know we still have to go a long hard way, > but it feels good to see glimpses of improvement. Last night she went even > to bed without wiping, what is very hard for her to do especially at > bedtime. Today she is going to see her therapist again and she is excited to > show her all her charts. What seems like hell a week ago is now clearing up > slowly. So I thank you for all the help and support you have given us and I > thank the people who have talked to my wife to comfort her, but most of all > I thank GOD for giving us strength, patience, and endurance through these > hard times. So for the people who are just starting the therapy, hang in > there follow the plan and pray a lot. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Marcel--Wow-what progress in such a short time-- Suzy- WI Marcel Rutten wrote: > I wanted to give an update of what happened sins last week. We were > having a > hard time with our oldest daughter bedtime routine. She thinks that > she > urinate on everything. So at bed time it gets even worse. We had a few > night > that we were up pretty much all night, and we were very tired during > the > day. So we talked on Monday with the therapist and she said that we > need to > hang in there. As long we are consistent with the plan this all will > get > better in a few weeks. The therapist also told our daughter that > getting > angry at us was not going to help her. To make a long story short, > That > night our daughter went to sleep without our help, she slept through > the > night and the next day she started to keep track of how she was doing > She > went to the bathroom without wiping herself, she started to do her > exercises > or homework. Last night she woke up at 2:00 o' clock, she got angry > yelled a > while but calmed down after about 30 minutes. The next 30 min she made > some > more charts and went to bed. So we are very excited, because she is > taking > charge here to help her self. I know we still have to go a long hard > way, > but it feels good to see glimpses of improvement. Last night she went > even > to bed without wiping, what is very hard for her to do especially at > bedtime. Today she is going to see her therapist again and she is > excited to > show her all her charts. What seems like hell a week ago is now > clearing up > slowly. So I thank you for all the help and support you have given us > and I > thank the people who have talked to my wife to comfort her, but most > of all > I thank GOD for giving us strength, patience, and endurance through > these > hard times. So for the people who are just starting the therapy, hang > in > there follow the plan and pray a lot. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Marcel--Wow-what progress in such a short time-- Suzy- WI Marcel Rutten wrote: > I wanted to give an update of what happened sins last week. We were > having a > hard time with our oldest daughter bedtime routine. She thinks that > she > urinate on everything. So at bed time it gets even worse. We had a few > night > that we were up pretty much all night, and we were very tired during > the > day. So we talked on Monday with the therapist and she said that we > need to > hang in there. As long we are consistent with the plan this all will > get > better in a few weeks. The therapist also told our daughter that > getting > angry at us was not going to help her. To make a long story short, > That > night our daughter went to sleep without our help, she slept through > the > night and the next day she started to keep track of how she was doing > She > went to the bathroom without wiping herself, she started to do her > exercises > or homework. Last night she woke up at 2:00 o' clock, she got angry > yelled a > while but calmed down after about 30 minutes. The next 30 min she made > some > more charts and went to bed. So we are very excited, because she is > taking > charge here to help her self. I know we still have to go a long hard > way, > but it feels good to see glimpses of improvement. Last night she went > even > to bed without wiping, what is very hard for her to do especially at > bedtime. Today she is going to see her therapist again and she is > excited to > show her all her charts. What seems like hell a week ago is now > clearing up > slowly. So I thank you for all the help and support you have given us > and I > thank the people who have talked to my wife to comfort her, but most > of all > I thank GOD for giving us strength, patience, and endurance through > these > hard times. So for the people who are just starting the therapy, hang > in > there follow the plan and pray a lot. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 You wrote: Today she is going to see her therapist again and she is excited to show her all her charts. What seems like hell a week ago is now clearing up slowly. This update is great! Your daughter is taking charge and though it is not easy she is proving it can be done. I think she is so mature to 'get' that being mad at her parents isn't going to help. Sounds like you all have a great working relationship with your therapist. Vivian __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 You wrote: Today she is going to see her therapist again and she is excited to show her all her charts. What seems like hell a week ago is now clearing up slowly. This update is great! Your daughter is taking charge and though it is not easy she is proving it can be done. I think she is so mature to 'get' that being mad at her parents isn't going to help. Sounds like you all have a great working relationship with your therapist. Vivian __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Yes we had a good start there, but that only worked for 2 to 3 days. We are still having problems with the night time to get here to calm down and to put herself to sleep. And during the day she is constantly telling us her worries. We ignore her when she is telling her worries, but because we are not saying anything, she finds still comfort just telling us her worries eventhough we do not answer her. She has been making progress with going to the bathroom and brushing her teeth. She does not wipe at all after going potty, and she is fine with that, but she is still worried that she is going potty on everything. The interesting thing is also, that sins we started therapy, her worries increased tremendous. She has so many different worries and they are so bizarre, it is hard to believe that your mind can come up with such bizarre worries. So we are going up and down and making slowly progress. How long does CBT therapy takes before you see that your child is enjoying the day again being able to manage the worries ???? > Re: Update > > You wrote: Today she is going to see her therapist > again and she is excited to > show her all her charts. What seems like hell a week > ago is now clearing up > slowly. > > This update is great! Your daughter is taking charge > and though it is not easy she is proving it can be > done. > I think she is so mature to 'get' that being mad at > her parents isn't going to help. Sounds like you all > have a great working relationship with your therapist. > Vivian > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Yes we had a good start there, but that only worked for 2 to 3 days. We are still having problems with the night time to get here to calm down and to put herself to sleep. And during the day she is constantly telling us her worries. We ignore her when she is telling her worries, but because we are not saying anything, she finds still comfort just telling us her worries eventhough we do not answer her. She has been making progress with going to the bathroom and brushing her teeth. She does not wipe at all after going potty, and she is fine with that, but she is still worried that she is going potty on everything. The interesting thing is also, that sins we started therapy, her worries increased tremendous. She has so many different worries and they are so bizarre, it is hard to believe that your mind can come up with such bizarre worries. So we are going up and down and making slowly progress. How long does CBT therapy takes before you see that your child is enjoying the day again being able to manage the worries ???? > Re: Update > > You wrote: Today she is going to see her therapist > again and she is excited to > show her all her charts. What seems like hell a week > ago is now clearing up > slowly. > > This update is great! Your daughter is taking charge > and though it is not easy she is proving it can be > done. > I think she is so mature to 'get' that being mad at > her parents isn't going to help. Sounds like you all > have a great working relationship with your therapist. > Vivian > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Dear Marcel, Two steps forward and one step back. It sounds like things are challenging at your house. Keep communicating with the therapist. Don't give up. Night time can be rough when everyone is so tired anyway and then you have to be patient at bedtime hoping and praying for a quick settled down period. How do you ignore her worries? I would talk to the therapist about that and come up with a plan. Good to see she is making progress on the bathroom/teeth brushing. It is always great to see some progress! I was reading Aureens post to you about how CBT is 80% effctive in helping with OCD. Isn't that amazing. What a great tool to give your child. Hang in there. Vivian --- Marcel Rutten wrote: > Yes we had a good start there, but that only worked > for 2 to 3 days. We are > still having problems with the night time to get > here to calm down and to > put herself to sleep. And during the day she is > constantly telling us her > worries. We ignore her when she is telling her > worries, but because we are > not saying anything, she finds still comfort just > telling us her worries > eventhough we do not answer her. She has been making > progress with going to > the bathroom and brushing her teeth. She does not > wipe at all after going > potty, and she is fine with that, but she is still > worried that she is going > potty on everything. The interesting thing is also, > that sins we started > therapy, her worries increased tremendous. She has > so many different worries > and they are so bizarre, it is hard to believe that > your mind can come up > with such bizarre worries. So we are going up and > down and making slowly > progress. How long does CBT therapy takes before you > see that your child is > enjoying the day again being able to manage the > worries ???? > > > Re: Update > > > > You wrote: Today she is going to see her therapist > > again and she is excited to > > show her all her charts. What seems like hell a > week > > ago is now clearing up > > slowly. > > > > This update is great! Your daughter is taking > charge > > and though it is not easy she is proving it can be > > done. > > I think she is so mature to 'get' that being mad > at > > her parents isn't going to help. Sounds like you > all > > have a great working relationship with your > therapist. > > Vivian > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Dear Marcel, Two steps forward and one step back. It sounds like things are challenging at your house. Keep communicating with the therapist. Don't give up. Night time can be rough when everyone is so tired anyway and then you have to be patient at bedtime hoping and praying for a quick settled down period. How do you ignore her worries? I would talk to the therapist about that and come up with a plan. Good to see she is making progress on the bathroom/teeth brushing. It is always great to see some progress! I was reading Aureens post to you about how CBT is 80% effctive in helping with OCD. Isn't that amazing. What a great tool to give your child. Hang in there. Vivian --- Marcel Rutten wrote: > Yes we had a good start there, but that only worked > for 2 to 3 days. We are > still having problems with the night time to get > here to calm down and to > put herself to sleep. And during the day she is > constantly telling us her > worries. We ignore her when she is telling her > worries, but because we are > not saying anything, she finds still comfort just > telling us her worries > eventhough we do not answer her. She has been making > progress with going to > the bathroom and brushing her teeth. She does not > wipe at all after going > potty, and she is fine with that, but she is still > worried that she is going > potty on everything. The interesting thing is also, > that sins we started > therapy, her worries increased tremendous. She has > so many different worries > and they are so bizarre, it is hard to believe that > your mind can come up > with such bizarre worries. So we are going up and > down and making slowly > progress. How long does CBT therapy takes before you > see that your child is > enjoying the day again being able to manage the > worries ???? > > > Re: Update > > > > You wrote: Today she is going to see her therapist > > again and she is excited to > > show her all her charts. What seems like hell a > week > > ago is now clearing up > > slowly. > > > > This update is great! Your daughter is taking > charge > > and though it is not easy she is proving it can be > > done. > > I think she is so mature to 'get' that being mad > at > > her parents isn't going to help. Sounds like you > all > > have a great working relationship with your > therapist. > > Vivian > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Thanks Ray! Fortunately, can take pills, so we're avoiding that horrible smell! Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Hi Ursula, We have not tested 's levels yet. His Ped has been thinking that will hopefully grow out of his PID. But lately, I have had some concerns about that. is out of antibiotics, except for Clindomycin--he has grown a resistance to everything else. The next step up (in antibiotic therapy) is only approved for children over the age of twelve. So, I have been thinking about having Bri see an Immunologist and asking about IVIG. Even if we put in ear tubes, we will still be dealing with his chronic sinus infections. I know he already has severe scarring in his sinuses, and I am wondering if it is time to put an end to all of this, if possible?? Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Hi Ursula, We have not tested 's levels yet. His Ped has been thinking that will hopefully grow out of his PID. But lately, I have had some concerns about that. is out of antibiotics, except for Clindomycin--he has grown a resistance to everything else. The next step up (in antibiotic therapy) is only approved for children over the age of twelve. So, I have been thinking about having Bri see an Immunologist and asking about IVIG. Even if we put in ear tubes, we will still be dealing with his chronic sinus infections. I know he already has severe scarring in his sinuses, and I am wondering if it is time to put an end to all of this, if possible?? Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Ursula, Thanks for the heads up regarding the sinus infections and IVIG. has never had his levels done--I am going to push for this before his heart surgery. I do not want him going in there with unspecified PID--I think it is too dangerous. The ear tubes will help, if only we can get this set to stay in longer. Do you know anything about the Titanium ear tubes? Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Poor having to take Clindymicin. I know the smell was horrible when Autumn took it. She was a real trooper & drank it right down--but I wanted to gag every time I opened the bottle. Hope he gets better soon! Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (10 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Poor having to take Clindymicin. I know the smell was horrible when Autumn took it. She was a real trooper & drank it right down--but I wanted to gag every time I opened the bottle. Hope he gets better soon! Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (10 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Sandi - I'm curious, it says in your signature that has a suspected IgG deficiency. Has he had levels done recently? Generally a deficiency has to be confirmed with non-responding antibodies before they'll consider IVIG. These days they're not even infusing based soley on low IgG. The antibody response is driving many immunologists to dose IVIG. I would think about testing 's antibody function also. -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ PedPI D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Sandi - I'm curious, it says in your signature that has a suspected IgG deficiency. Has he had levels done recently? Generally a deficiency has to be confirmed with non-responding antibodies before they'll consider IVIG. These days they're not even infusing based soley on low IgG. The antibody response is driving many immunologists to dose IVIG. I would think about testing 's antibody function also. -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ PedPI D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 I wish I could tell you that IVIG would put an end to his sinus problems but with so little IgA in IVIG and the sinuses being lined with it then I would be misleading you. Macey's sinuses have stayed a point of contention with us. Les also has serious sinus issues and last week was told that his starting IVIG would not help that area. Has had levels taken in the past? How old was he and what were they? The immunology consult sounds like a good thing and the ear tubes should help. -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ PedPI D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 I wish I could tell you that IVIG would put an end to his sinus problems but with so little IgA in IVIG and the sinuses being lined with it then I would be misleading you. Macey's sinuses have stayed a point of contention with us. Les also has serious sinus issues and last week was told that his starting IVIG would not help that area. Has had levels taken in the past? How old was he and what were they? The immunology consult sounds like a good thing and the ear tubes should help. -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ PedPI D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Ray, The Clindamycin pills are actually quite small--did you ever read my post (quite a while ago) about putting the pills under the child's tongue? Dale suggested practicing with small candy, like the miniature M & Ms. Bri has been taking pills with this method since he was at least 4. It might be a good project for you guys (like you don't have enough other things to do . Seriously, it makes life easier for us. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Sandi, Has tried nasal washes to help relieve some of the sinus problems. We do those for Autumn & she hasn't had a sinus infection since! We've been doing them since the fall of 2000. She used to get a sinus infection every 14-20 days & we'd end up on tons of antibiotics & sometimes even in the hospital. Her sinus scarring was not as severe, but it was starting. We're still dealing with the constant ear infections, but hoping that this round of antibiotics will help kick it. We're on bactrim for another 14 days & it seems to be doing great. If it doesn't work, we're having titanium tubes put in. Maybe then her poor body will get a break. Good luck with . . .I know how tough these decisions can get. Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (10 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 You're so lucky! Autumn still can't take pills. . .I told the ped last time no Clindimycin. . .he laughed & agreed with me! Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (10 months) > Thanks Ray! Fortunately, can take pills, so we're avoiding that > horrible smell! > Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 I don't remember about putting pills under the tongue. . .so far, the ped has been reluctant to prescribe pills. He has for Tabitha (age 6.5), but feels Autumn's too young. I'll think about the mini-m & m's. Maybe that'll be a good starting point for us. Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (10 months) > The Clindamycin pills are actually quite small--did you ever read my post > (quite a while ago) about putting the pills under the child's tongue? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Annette, {HUGS}} I don;t know what to say. You will all be in our prayers pattie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 ! I am so glad that the doctors are finally getting there act together for ! Praying for him, I can't even imagine how painful his ear must be. Poor kid. Kody has gotten yeast infections in his ear before, it was a long time ago, and I can't remember but it seems to me that we used ear drops instead of antibiotics. Kody has also gotten strep infections in his ears, those were hard to get rid of. I think soon they are going to culture his sinus' to find out exactly what it is in there too. Hugs to , and one to mommy too! Diane, Mom to Kody Quote Link to comment Share on other sites More sharing options...
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