Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 Welcome Amber. You'll find plenty of company here, and most of us are more than familiar (sigh) with difficult behavior in our children, and very supportive and helpful. You aren't alone. Love, Francine p.s. and if it's any consolation right now, You will love the person You are becoming through all these trials. Our love for our children carries us. Speak with Him Thou for He hearest. Spirit with Spirit can speak. Closer is Love than breathing, Nearer than hands and feet. (with appreciation for Tennyson) Introduction Hi, My name is Amber and I just wanted to take the time to introduce myself. I am a single mom of 3 boys who are 8, 5 and 2 years old. My oldest son was diagnosed with Aspergers when he was 5 years old. After trying to resist medications I gave in because he was becoming very violent towards me and other people, his anxiety was causing him to act out and withdraw from everything. We have tried many different meds and finally getting some sort of balance but still things don't always work like it should. Joined the group to talk with others like me as I don't have any friends that really understand what my life is like daily facing the challenges with my son. Thank you for reading this I look forward to reading posts from others and learning new ways to help my son. Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 Thank you, yes I have become a stronger person since my divorce and then the diagnosis. My exhusband couldn't handle our son :-( but we have pushed through. Moved to a different city just to get him better help and found a public school willing to take on the challenges of helping him grow socially. His outburst physically are the worst as I often fear what he may do to me or his younger brothers but we are working through it. Therapy once a week and meetings with the psychiatrist that is well experienced with Aspergers takes place once a month. He got Cat Scratch Fever in August which made him very ill so the hospital stay at childrens was a nightmare for him being stuck in that bed with all those Dr's and nurses touching him. So hard to watch my son struggle. He use to talk of dreams of being in the airforce and joining the police force and fire department then all of a sudden now he says he can't do those things and spends more time being frustrated and angry about everything. > > Welcome Amber. You'll find plenty of company here, and most of us are more than familiar (sigh) with difficult behavior in our children, and very supportive and helpful. You aren't alone. >  > Love, > Francine >  > p.s. and if it's any consolation right now, You will love the person You are becoming through all these trials. Our love for our children carries us. > > > Speak with Him Thou for He hearest. > Spirit with Spirit can speak. > Closer is Love than breathing, > Nearer than hands and feet. > > (with appreciation for Tennyson) > > > Introduction > >  Hi, > > My name is Amber and I just wanted to take the time to introduce myself. I am a single mom of 3 boys who are 8, 5 and 2 years old. My oldest son was diagnosed with Aspergers when he was 5 years old. After trying to resist medications I gave in because he was becoming very violent towards me and other people, his anxiety was causing him to act out and withdraw from everything. We have tried many different meds and finally getting some sort of balance but still things don't always work like it should. Joined the group to talk with others like me as I don't have any friends that really understand what my life is like daily facing the challenges with my son. > > Thank you for reading this I look forward to reading posts from others and learning new ways to help my son. > > Amber > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 Welcome to the group Amber. You're right, people, including family think you're making a big thing out of nothing. Talking to others in the group does help. From: AG <mom2cyandmark@...>Autism and Aspergers Treatment Sent: Sun, November 28, 2010 6:04:48 PMSubject: Introduction Hi, My name is Amber and I just wanted to take the time to introduce myself. I am a single mom of 3 boys who are 8, 5 and 2 years old. My oldest son was diagnosed with Aspergers when he was 5 years old. After trying to resist medications I gave in because he was becoming very violent towards me and other people, his anxiety was causing him to act out and withdraw from everything. We have tried many different meds and finally getting some sort of balance but still things don't always work like it should. Joined the group to talk with others like me as I don't have any friends that really understand what my life is like daily facing the challenges with my son. Thank you for reading this I look forward to reading posts from others and learning new ways to help my son. Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 I hope the G-word doesn't offend You, (if it does, please skip this paragraph!) and for a little boy, God can be tremendous help, just knowing that He has this super Help beyond what he thinks he can do. You don't mention his reading, and the American Bible Society has (or had) some nice easy read childsize books. Whatever religion one is or chooses, there is always a good example of one triumphing over great odds, whether Moses, Elijah, Jesus ... each religion has people who heard a different drum and were blessed. *~*~* Any time he is able not to be violent or have a scene, You can commend his courage in taking charge of his behavior. If he hasn't yet done that, he can be encouraged and will. From my own experience, I just know the right ideas will come to You for your family. Love, Francine Speak with Him Thou for He hearest. Spirit with Spirit can speak. Closer is Love than breathing, Nearer than hands and feet. (with appreciation for Tennyson) Introduction > > Â Hi, > > My name is Amber and I just wanted to take the time to introduce myself. I am a single mom of 3 boys who are 8, 5 and 2 years old. My oldest son was diagnosed with Aspergers when he was 5 years old. After trying to resist medications I gave in because he was becoming very violent towards me and other people, his anxiety was causing him to act out and withdraw from everything. We have tried many different meds and finally getting some sort of balance but still things don't always work like it should. Joined the group to talk with others like me as I don't have any friends that really understand what my life is like daily facing the challenges with my son. > > Thank you for reading this I look forward to reading posts from others and learning new ways to help my son. > > Amber > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2011 Report Share Posted July 18, 2011 Welcome to the group! From the x-rays did they give you a degree that the curve is at? I am sorry about your experience with the x-rays, not fun! Our son started out the exact same way with the torticolis and then PT, Xray, wait and see for 3 months and then referral to an Orthopedist, 2 MRI's, a CT scan, another Xray which showed a progression of his curve from 23 degrees to 50. Finally Children's in Seattle advised us to brace which we almost did until we found this group. I found a local Shriner's Hospital that did the Mehta casting and we feel so fortunate that we did. Hang in there, the anxiety and stress is completely normal. Just know that you are at the right resource for infantile scoliosis with this group and be the best advocate that you can be for your child. Where are you located? Best of luck to you and your family! SonjaFrom: messyyesi <yespick >@gmail.cominfantile scoliosis treatment Sent: Sat, July 16, 2011 8:21:40 PMSubject: Introduction Hello Everyone! I'm new to the group and wanted to introduce myself. I'm a first time mother to a beautiful 3-month old named Ximena. Immediately from birth I noticed she had a head tilt. She was diagnosed with torticollis right away (a shortening of a neck muscle making the baby tilt their head in one direction and only able to fully turn in another). We started physical therapy right away and it began to help. But during her physical therapy sessions, her therapist and I noticed that she slouched quite a bit. As a first time mom, I just figured it was because she was so little and couldn't hold herself up straight. After a few weeks an no improvement, the therapist suggested that I bring it up to her pediatrician. So the a few weeks ago I did just that. Our pediatrician sent us to get X-Rays twice. The first time was horrible. They held my baby girl down tight, and used these sponge clamps to hold her head straight, all while she was screaming her little lungs out. After getting those x-rays, the pediatrician sent us to get another set (I went to a different place and this time it was so easy). Anyways, the doctor said that it looks like she has scoliosis and referred us to Children's Hospital nearby. Unfortunately we couldn't get our appointment until October. So here we are... 3 months away from our appointment and I have no idea what to expect or how bad the curve is. I'm super careful of how I hold and position Ximena because I don't want to make it worse. (I won't let her use her Bumbo seat because I'm afraid it'll strain her back and make the curve worse). Since I'm so far away from the appointment, I've been having extreme anxiety and don't know what to expect. Does anyone have any advice or let me know what I should expect from my first few doctor's visits? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2011 Report Share Posted July 18, 2011 Hey and welcome! TUMMY TIME, TUMMY TIME, TUMMY TIME! That is going to help her the most with not letting her curve progress as fast. Gravity is going to be her enemy. Logan's mama (45 down to 9 out of cast, 9th cast, 2 years old) From: messyyesi <yespick@...>infantile scoliosis treatment Sent: Sat, July 16, 2011 11:21:40 PMSubject: Introduction Hello Everyone!I'm new to the group and wanted to introduce myself. I'm a first time mother to a beautiful 3-month old named Ximena. Immediately from birth I noticed she had a head tilt. She was diagnosed with torticollis right away (a shortening of a neck muscle making the baby tilt their head in one direction and only able to fully turn in another). We started physical therapy right away and it began to help. But during her physical therapy sessions, her therapist and I noticed that she slouched quite a bit. As a first time mom, I just figured it was because she was so little and couldn't hold herself up straight. After a few weeks an no improvement, the therapist suggested that I bring it up to her pediatrician. So the a few weeks ago I did just that. Our pediatrician sent us to get X-Rays twice. The first time was horrible. They held my baby girl down tight, and used these sponge clamps to hold her head straight, all while she was screaming her little lungs out. After getting those x-rays, the pediatrician sent us to get another set (I went to a different place and this time it was so easy). Anyways, the doctor said that it looks like she has scoliosis and referred us to Children's Hospital nearby. Unfortunately we couldn't get our appointment until October. So here we are... 3 months away from our appointment and I have no idea what to expect or how bad the curve is. I'm super careful of how I hold and position Ximena because I don't want to make it worse. (I won't let her use her Bumbo seat because I'm afraid it'll strain her back and make the curve worse).Since I'm so far away from the appointment, I've been having extreme anxiety and don't know what to expect. Does anyone have any advice or let me know what I should expect from my first few doctor's visits? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2011 Report Share Posted July 19, 2011 Welcome to Cast. May I recommend a few things to get you started? Pls read Growth as a corrective force in the Early Treatment of progressive infantile scoliosis,” by Mehta and view A New Direction DVD….The dvd can be found on the youtube section of www.infantilescoliosis.org and can be viewed in 3 parts. It will give you great direction in holding your daughter as to try and avoid further progression while you wait….ISOP can also send you a New Direction DVD, if you like. These 2 items will help you to better understand the necessity of getting your daughter treated early w/ EDF/Mehta casting if she has a progressive case of infantile scoliosis. Did the ortho or radiological tech happen to give you and measurement #’s like a Cobb angle or RVAD to help determine and/or appreciate the pattern of progression?HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of messyyesiSent: Saturday, July 16, 2011 9:22 PMinfantile scoliosis treatment Subject: Introduction Hello Everyone!I'm new to the group and wanted to introduce myself. I'm a first time mother to a beautiful 3-month old named Ximena. Immediately from birth I noticed she had a head tilt. She was diagnosed with torticollis right away (a shortening of a neck muscle making the baby tilt their head in one direction and only able to fully turn in another). We started physical therapy right away and it began to help. But during her physical therapy sessions, her therapist and I noticed that she slouched quite a bit. As a first time mom, I just figured it was because she was so little and couldn't hold herself up straight. After a few weeks an no improvement, the therapist suggested that I bring it up to her pediatrician. So the a few weeks ago I did just that. Our pediatrician sent us to get X-Rays twice. The first time was horrible. They held my baby girl down tight, and used these sponge clamps to hold her head straight, all while she was screaming her little lungs out. After getting those x-rays, the pediatrician sent us to get another set (I went to a different place and this time it was so easy). Anyways, the doctor said that it looks like she has scoliosis and referred us to Children's Hospital nearby. Unfortunately we couldn't get our appointment until October. So here we are... 3 months away from our appointment and I have no idea what to expect or how bad the curve is. I'm super careful of how I hold and position Ximena because I don't want to make it worse. (I won't let her use her Bumbo seat because I'm afraid it'll strain her back and make the curve worse).Since I'm so far away from the appointment, I've been having extreme anxiety and don't know what to expect. Does anyone have any advice or let me know what I should expect from my first few doctor's visits? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2011 Report Share Posted July 21, 2011 Thanks. I read the article, but have not yet watched the video. We haven't seen the ortho yet, and the xrays tech didn't give us any info yet. Luckily Though, we got our ortho appt move to august so we don't have to wait until October anymore. > > Welcome to Cast. May I recommend a few things to get you started? Pls read > Growth as a corrective force in the Early Treatment of progressive infantile > scoliosis, " by Mehta and view A New Direction DVD..The dvd can be found on > the youtube section of www.infantilescoliosis.org and can be viewed in 3 > parts. It will give you great direction in holding your daughter as to try > and avoid further progression while you wait..ISOP can also send you a New > Direction DVD, if you like. These 2 items will help you to better > understand the necessity of getting your daughter treated early w/ EDF/Mehta > casting if she has a progressive case of infantile scoliosis. Did the ortho > or radiological tech happen to give you and measurement #'s like a Cobb > angle or RVAD to help determine and/or appreciate the pattern of > progression? > > HRH > > > > From: infantile scoliosis treatment > [mailto:infantile scoliosis treatment ] On Behalf Of messyyesi > Sent: Saturday, July 16, 2011 9:22 PM > infantile scoliosis treatment > Subject: Introduction > > > > > > Hello Everyone! > > I'm new to the group and wanted to introduce myself. I'm a first time mother > to a beautiful 3-month old named Ximena. Immediately from birth I noticed > she had a head tilt. She was diagnosed with torticollis right away (a > shortening of a neck muscle making the baby tilt their head in one direction > and only able to fully turn in another). We started physical therapy right > away and it began to help. But during her physical therapy sessions, her > therapist and I noticed that she slouched quite a bit. As a first time mom, > I just figured it was because she was so little and couldn't hold herself up > straight. After a few weeks an no improvement, the therapist suggested that > I bring it up to her pediatrician. So the a few weeks ago I did just that. > Our pediatrician sent us to get X-Rays twice. The first time was horrible. > They held my baby girl down tight, and used these sponge clamps to hold her > head straight, all while she was screaming her little lungs out. After > getting those x-rays, the pediatrician sent us to get another set (I went to > a different place and this time it was so easy). > > Anyways, the doctor said that it looks like she has scoliosis and referred > us to Children's Hospital nearby. Unfortunately we couldn't get our > appointment until October. So here we are... 3 months away from our > appointment and I have no idea what to expect or how bad the curve is. I'm > super careful of how I hold and position Ximena because I don't want to make > it worse. (I won't let her use her Bumbo seat because I'm afraid it'll > strain her back and make the curve worse). > > Since I'm so far away from the appointment, I've been having extreme anxiety > and don't know what to expect. Does anyone have any advice or let me know > what I should expect from my first few doctor's visits? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 The wait and watch approach is not the best plan for PIS. Excellent news on getting the appt. moved up to August! Please keep us posted.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of messyyesiSent: Thursday, July 21, 2011 10:41 AMinfantile scoliosis treatment Subject: Re: Introduction Thanks. I read the article, but have not yet watched the video. We haven't seen the ortho yet, and the xrays tech didn't give us any info yet. LuckilyThough, we got our ortho appt move to august so we don't have to wait until October anymore. >> Welcome to Cast. May I recommend a few things to get you started? Pls read> Growth as a corrective force in the Early Treatment of progressive infantile> scoliosis, " by Mehta and view A New Direction DVD..The dvd can be found on> the youtube section of www.infantilescoliosis.org and can be viewed in 3> parts. It will give you great direction in holding your daughter as to try> and avoid further progression while you wait..ISOP can also send you a New> Direction DVD, if you like. These 2 items will help you to better> understand the necessity of getting your daughter treated early w/ EDF/Mehta> casting if she has a progressive case of infantile scoliosis. Did the ortho> or radiological tech happen to give you and measurement #'s like a Cobb> angle or RVAD to help determine and/or appreciate the pattern of> progression?> > HRH> > > > From: infantile scoliosis treatment > [mailto:infantile scoliosis treatment ] On Behalf Of messyyesi> Sent: Saturday, July 16, 2011 9:22 PM> infantile scoliosis treatment > Subject: Introduction> > > > > > Hello Everyone!> > I'm new to the group and wanted to introduce myself. I'm a first time mother> to a beautiful 3-month old named Ximena. Immediately from birth I noticed> she had a head tilt. She was diagnosed with torticollis right away (a> shortening of a neck muscle making the baby tilt their head in one direction> and only able to fully turn in another). We started physical therapy right> away and it began to help. But during her physical therapy sessions, her> therapist and I noticed that she slouched quite a bit. As a first time mom,> I just figured it was because she was so little and couldn't hold herself up> straight. After a few weeks an no improvement, the therapist suggested that> I bring it up to her pediatrician. So the a few weeks ago I did just that.> Our pediatrician sent us to get X-Rays twice. The first time was horrible.> They held my baby girl down tight, and used these sponge clamps to hold her> head straight, all while she was screaming her little lungs out. After> getting those x-rays, the pediatrician sent us to get another set (I went to> a different place and this time it was so easy). > > Anyways, the doctor said that it looks like she has scoliosis and referred> us to Children's Hospital nearby. Unfortunately we couldn't get our> appointment until October. So here we are... 3 months away from our> appointment and I have no idea what to expect or how bad the curve is. I'm> super careful of how I hold and position Ximena because I don't want to make> it worse. (I won't let her use her Bumbo seat because I'm afraid it'll> strain her back and make the curve worse).> > Since I'm so far away from the appointment, I've been having extreme anxiety> and don't know what to expect. Does anyone have any advice or let me know> what I should expect from my first few doctor's visits?> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 Our daughter was diagnosed at 2. Has been trialed off twice. The last time was 2001. She failed both times. She is 16 (17 in April). She's making more decisions each appt so my job is about over. She also has lung problems and an endocrine disorder. She will be a Junior and starts school Monday. She likes drama and show choir. Ursula Mom to Macey (16,CVID) On Jul 29, 2011, at 7:45 AM, " Molly " <sds44001@...> wrote: > Good morning, at least in Ohio it's morning. > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > Thank you for everything!!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 Our daughter was diagnosed at 2. Has been trialed off twice. The last time was 2001. She failed both times. She is 16 (17 in April). She's making more decisions each appt so my job is about over. She also has lung problems and an endocrine disorder. She will be a Junior and starts school Monday. She likes drama and show choir. Ursula Mom to Macey (16,CVID) On Jul 29, 2011, at 7:45 AM, " Molly " <sds44001@...> wrote: > Good morning, at least in Ohio it's morning. > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > Thank you for everything!!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 The dicision making has been making it tough on me. I'm a nurse and I know what's best for him, but he IS old enough to make his own medical decisions. When I told him about the potential of starting the IVIG again, he said NO. There really isn't much I can do right now... > > > Good morning, at least in Ohio it's morning. > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > Thank you for everything!!! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 The dicision making has been making it tough on me. I'm a nurse and I know what's best for him, but he IS old enough to make his own medical decisions. When I told him about the potential of starting the IVIG again, he said NO. There really isn't much I can do right now... > > > Good morning, at least in Ohio it's morning. > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > Thank you for everything!!! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 I just had to add, that it brings me to tears that my son is making these decisions without really understanding the consequences. But honestly, what makes me even more sad, is that he wants so bad to enter the military and with this diagnosis, he won't be permitted to unless he doesn't tell the truth. I feel overwhelmed, one day I think he's outgrown this, then next thing I know, I'm told he needs IVIG again....sometimes it's just too much. > > > > > Good morning, at least in Ohio it's morning. > > > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > > > Thank you for everything!!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 He'll go for it when he feels cruddy enough. Thankfully his deficiency is not so pronounced to likely give him time to figure that out. Ursula On Jul 29, 2011, at 9:46 AM, " Molly " <sds44001@...> wrote: > > The dicision making has been making it tough on me. I'm a nurse and I know what's best for him, but he IS old enough to make his own medical decisions. When I told him about the potential of starting the IVIG again, he said NO. There really isn't much I can do right now... > > > > > > > Good morning, at least in Ohio it's morning. > > > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > > > Thank you for everything!!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 He'll go for it when he feels cruddy enough. Thankfully his deficiency is not so pronounced to likely give him time to figure that out. Ursula On Jul 29, 2011, at 9:46 AM, " Molly " <sds44001@...> wrote: > > The dicision making has been making it tough on me. I'm a nurse and I know what's best for him, but he IS old enough to make his own medical decisions. When I told him about the potential of starting the IVIG again, he said NO. There really isn't much I can do right now... > > > > > > > Good morning, at least in Ohio it's morning. > > > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > > > Thank you for everything!!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 Hello, My son is 15 almost 16 and he too had dreamed of a career in the military. But.... that will not be the case. He will not be able to lie about it because they will get his records.My son is on Sub Q after being on IVIg from the age of 3 and then trialing off at 10 that was a fail. I am thinking the 2 number was atleast a 2 fold response to the antibodies. I am worried about them trialing off my son again that he will REFUSE treatment. We have battled for years about doing the infusions although Sub Q is simple in comparison with WAY fewer side effects and better maintenance of the levels. I was going to say that maybe helping your son look at being an Engineer and working towards being a contractor with the military would be a good alternative since they make even MORE money. Oh I am also an RN. It is tough to watch these kids dreams being squashed but reality sets in for all of us and we need to work towards more reasonable opportunities. Feel free if you want to contact me directly if you just want to talk. I am in WA state. Â BARBIEÂ Â >________________________________ >From: Ursula Holleman <uahollem@...> > " " < > >Sent: Friday, July 29, 2011 7:22 AM >Subject: Re: Re: introduction > > >Â >He'll go for it when he feels cruddy enough. Thankfully his deficiency is not so pronounced to likely give him time to figure that out. > >Ursula > >On Jul 29, 2011, at 9:46 AM, " Molly " <sds44001@...> wrote: > >> >> The dicision making has been making it tough on me. I'm a nurse and I know what's best for him, but he IS old enough to make his own medical decisions. When I told him about the potential of starting the IVIG again, he said NO. There really isn't much I can do right now... >> >> >> > >> > > Good morning, at least in Ohio it's morning. >> > > >> > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL >> > > >> > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. >> > > >> > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... >> > > >> > > Thank you for everything!!! >> > > >> > > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 Molly, My son just turned 4 and was diagnosed with Brutons agamma about a year and a half ago. I do not have any immune issues and I could not understand what he was going through. This Ped group has been great, full of information and support. In addition, I have been in contact with the immune deficience foundation and they send me the below e-mail - (I copied the e-mail below for contact information). You might want to consider contacting her for additional contacts for your son. I was contacted by 2 adult men and 1 mother that have lived with agamma all their lives... they have been so helpful filling in some of the missing pieces for me. There is also a PID that maybe your son would like to subscribe - there are many people on there willing to give lots of support. All these groups have been wonderful & full of information. I lived all my life in Ohio (Elyria/Grafton area) and now for the past 4 years in Northern Indiana. You mentioned the PID in August at the Cleveland Zoo - can you give me the date? I happen to be visiting my family right now in Ohio and we talked about going to the zoo, how ironic! My mom has CVID. Here is the e-mail: Dear Terri, Thank you for contacting the Immune Deficiency Foundation. Since XLA is rare, there isn’t an in-person support group in your area. However, IDF does have wonderful volunteers who are parents of children with XLA or adults living with XLA to contact you via email or phone. Please let me know if you would like to hear from them. I’ve attached an invitation to an IDF Family Conference Day scheduled in East Lansing, MI on April 30th. If you are available, I hope you can join us. I look forward to hearing from you and introducing you to others. Sincerely, Kathy Antilla, MAEd Director of Education & Volunteer Development Immune Deficiency Foundation 40 W. Chesapeake Ave., Suite 308 Towson, MD 21204 763.444.6840 (direct) 763.444.6897 (fax) 443.939.9438 (mobile) 800-296-4433 (toll free) www.primaryimmune.org From: sds44001@... Date: Fri, 29 Jul 2011 13:54:43 +0000 Subject: Re: introduction I just had to add, that it brings me to tears that my son is making these decisions without really understanding the consequences. But honestly, what makes me even more sad, is that he wants so bad to enter the military and with this diagnosis, he won't be permitted to unless he doesn't tell the truth. I feel overwhelmed, one day I think he's outgrown this, then next thing I know, I'm told he needs IVIG again....sometimes it's just too much. > > > > > Good morning, at least in Ohio it's morning. > > > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > > > Thank you for everything!!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 Terri, The zoo date is Aug 21. We went a couple of years ago and had a lot of fun. I personally don't care for zoos but had fun and that's all that counts. > > > > > > > Good morning, at least in Ohio it's morning. > > > > > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > > > > > Thank you for everything!!! > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 Terri, The zoo date is Aug 21. We went a couple of years ago and had a lot of fun. I personally don't care for zoos but had fun and that's all that counts. > > > > > > > Good morning, at least in Ohio it's morning. > > > > > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > > > > > Thank you for everything!!! > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 I can relate. My kids are 9 and 10 and 5 but some days I just feel that this is so hard and feel so sad...u just wonder when the problems are going to end with these kids.. And what there out come will be . but we just cant give up hope on them your this illness. Just keep praying and the good lord will take charge.. kim From: [mailto: ] On Behalf Of Molly Sent: Friday, July 29, 2011 8:55 AM Subject: Re: introduction I just had to add, that it brings me to tears that my son is making these decisions without really understanding the consequences. But honestly, what makes me even more sad, is that he wants so bad to enter the military and with this diagnosis, he won't be permitted to unless he doesn't tell the truth. I feel overwhelmed, one day I think he's outgrown this, then next thing I know, I'm told he needs IVIG again....sometimes it's just too much. > > > > > Good morning, at least in Ohio it's morning. > > > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mounted an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > > > Thank you for everything!!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 Maybe u could get him to do the sub q its so much easyer and hes a lot more free to do things with it.maybe that would help his thinking.. From: [mailto: ] On Behalf Of Molly Sent: Friday, July 29, 2011 8:47 AM Subject: Re: introduction The dicision making has been making it tough on me. I'm a nurse and I know what's best for him, but he IS old enough to make his own medical decisions. When I told him about the potential of starting the IVIG again, he said NO. There really isn't much I can do right now... > > > Good morning, at least in Ohio it's morning. > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mount ed an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > Thank you for everything!!! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 Maybe u could get him to do the sub q its so much easyer and hes a lot more free to do things with it.maybe that would help his thinking.. From: [mailto: ] On Behalf Of Molly Sent: Friday, July 29, 2011 8:47 AM Subject: Re: introduction The dicision making has been making it tough on me. I'm a nurse and I know what's best for him, but he IS old enough to make his own medical decisions. When I told him about the potential of starting the IVIG again, he said NO. There really isn't much I can do right now... > > > Good morning, at least in Ohio it's morning. > > > > My name is and my 17 year old son was diagnosed with Hypogam when he was 6 years old. He recieved IVIG every three weeks until he was about 10 when we 'trialed' him off, unsuccessfully. He then continued the IVIG again until March of 2010 when he was again 'trialed' off. This year, he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG level was about 573, I'm using memory on this one. His post injection IGG level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if that's what it's called. Since his last IVIG, he has had one pneumonia and one sinus infection both being treated successfully with one round of antibiotics. Now, his immunologist would like to initiate IVIG again but I'm against it. So, we decided to wait to reasses his levels in two months. It's very confusing because his immunologist initialled diagnosed him with Hypogamm and when he was assessed this year, she said he would be labeled CVID if he hadn't mount ed an immunity to any or less than 2 of the pneumococcals....confusing....LOL > > > > He wants to enter the military and with this diagnosis, his dreams are forever squashed. > > > > On a side note, are there any other almost adults with Hypogamm? I think it would help my son a TON to speak with someone. He's really having a tough time with this. We thought he had a kidney disease but it appears as though that isn't the case. If there's an almost adult who would be willing to talk/ text another almost adult, please let me know... > > > > Thank you for everything!!! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2011 Report Share Posted July 30, 2011 Kim, We did try the subq route; however, my son is tall and thin and unfortunately doesn't have a whole lot of fat tissue so it was really uncomfortable for him. He's 5'11 " and weighs all of #138. We used two sites but they got uncomfortably large. He was a trooper and tried it for about 2 months. He actually prefers IVIG: he used Emla and his nurse was AMAZING. He was usually done within 1 1/2 hours. He was just diagnosed with a sinus infection so I'm curious to see where this goes. > > > > > Good morning, at least in Ohio it's morning. > > > > > > My name is and my 17 year old son was diagnosed with Hypogam > when he was 6 years old. He recieved IVIG every three weeks until he was > about 10 when we 'trialed' him off, unsuccessfully. He then continued the > IVIG again until March of 2010 when he was again 'trialed' off. This year, > he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG > level was about 573, I'm using memory on this one. His post injection IGG > level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if > that's what it's called. Since his last IVIG, he has had one pneumonia and > one sinus infection both being treated successfully with one round of > antibiotics. Now, his immunologist would like to initiate IVIG again but I'm > against it. So, we decided to wait to reasses his levels in two months. It's > very confusing because his immunologist initialled diagnosed him with > Hypogamm and when he was assessed this year, she said he would be labeled > CVID if he hadn't mount ed an immunity to any or less than 2 of the > pneumococcals....confusing....LOL > > > > > > He wants to enter the military and with this diagnosis, his dreams are > forever squashed. > > > > > > On a side note, are there any other almost adults with Hypogamm? I think > it would help my son a TON to speak with someone. He's really having a tough > time with this. We thought he had a kidney disease but it appears as though > that isn't the case. If there's an almost adult who would be willing to > talk/ text another almost adult, please let me know... > > > > > > Thank you for everything!!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2011 Report Share Posted July 30, 2011 Does he keep go trough levels on the IV route? Ursula On Jul 30, 2011, at 10:04 AM, " Molly " <sds44001@...> wrote: > Kim, > We did try the subq route; however, my son is tall and thin and unfortunately doesn't have a whole lot of fat tissue so it was really uncomfortable for him. He's 5'11 " and weighs all of #138. We used two sites but they got uncomfortably large. He was a trooper and tried it for about 2 months. He actually prefers IVIG: he used Emla and his nurse was AMAZING. He was usually done within 1 1/2 hours. > > He was just diagnosed with a sinus infection so I'm curious to see where this goes. > > > > > > > > > Good morning, at least in Ohio it's morning. > > > > > > > > My name is and my 17 year old son was diagnosed with Hypogam > > when he was 6 years old. He recieved IVIG every three weeks until he was > > about 10 when we 'trialed' him off, unsuccessfully. He then continued the > > IVIG again until March of 2010 when he was again 'trialed' off. This year, > > he had pre and post Pnuemo-titers and IGG levels. His pre injection IGG > > level was about 573, I'm using memory on this one. His post injection IGG > > level dropped to 472 and he mounted an immunity to 9 of 23 Pneumococcals, if > > that's what it's called. Since his last IVIG, he has had one pneumonia and > > one sinus infection both being treated successfully with one round of > > antibiotics. Now, his immunologist would like to initiate IVIG again but I'm > > against it. So, we decided to wait to reasses his levels in two months. It's > > very confusing because his immunologist initialled diagnosed him with > > Hypogamm and when he was assessed this year, she said he would be labeled > > CVID if he hadn't mount ed an immunity to any or less than 2 of the > > pneumococcals....confusing....LOL > > > > > > > > He wants to enter the military and with this diagnosis, his dreams are > > forever squashed. > > > > > > > > On a side note, are there any other almost adults with Hypogamm? I think > > it would help my son a TON to speak with someone. He's really having a tough > > time with this. We thought he had a kidney disease but it appears as though > > that isn't the case. If there's an almost adult who would be willing to > > talk/ text another almost adult, please let me know... > > > > > > > > Thank you for everything!!! > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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