Guest guest Posted December 11, 2009 Report Share Posted December 11, 2009 This is all also common with kids with PID, my son has never attended schoool and we actually isolate for 6 months of the year.. no activitiy. Constipation... was horrible and I know alot of other moms on this board struggle with this issue as well. We have been officially dx for a number of years with Mito ( complex 1, LCHAD, and CPEO another variant of Mito.... The issues with fatigue for the first few years were horrible with trying to get the right product, dosing, and let his body rest and restore..all immune related.. Mito was dx after our PID, which was dx at 18 months .... 3 organ systems are a indication..as well as a zillion other things.. It is a dx,, that another doctor will suspect.. and then do some metabolic studies.. skin biopsy sometimes.. EMG.. It is a lOOONNG process.. best of luck.. hope you do not have to go down that road. Kathleen > > > > > > > > > Hi all, > > > > > > > > > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, > > just started on Vivaglobin. He has suffered from chronic infections, chronic > > fatigue, and recurrent GI issues including nausea, constipation, and severe > > food intolerance. We did IVIG for 1 year, and he did well on Privigen, not > > well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days > > afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month > > where he was fully functional. > > > > > > We've done Viva for 1 month now. He has 1-2 days of fatigue right after > > his infusion. Is this typical? He still is by no means able to live a > > " normal " life- he does not have the energy to attend school and activities > > regularly due to some issue or other-his gut, feeling tired/lousy, headache. > > Between the time we were switching from IVIG to Viva he got an infection- in > > the 1 week he was off therapy. Then he had to go on antibiotics, and he > > hasn't been doing well since. He's been tired and had nausea on and off > > since he got off the antibiotics. > > > > > > The best 2 months we had were when he was on Privigen and Miralax- he made > > it through that whole time with high energy and few gut problems. > > > > > > We switched to Viva because Dr suggested it to help with fatigue. I also > > was excited about doing it because of what I heard from other parents about > > it helping fatigue. I have been told that his initial dose is low- 6g weekly > > for 120lb. > > > Could that be a reason he doesn't seem to be responding well? Or does it > > take a while to get up to speed with the Viva? > > > > > > I have wondered about Mito issues due to his chronic fatigue- he does not > > have seizures and I am unsure if it would be helpful to have to travel to > > Cleveland Clinic to get screened for mito. > > > > > > > > > Does anyone have thoughts on this? > > > > > > Thanks, > > > Cyndi > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Good Morning Cyndi, I wanted to let you know about our experieince at Cleveland Clinic for a workup for mito disease with both of our daughters. We saw Dr. Cohen's Clinic. First, they do not believe in subclass or specific antibody disorder as a form of PIDD. Once in the clinic, they wanted us to see their ID docs and Immunologists. They also explained to us that ALL kids with PIDD likely have mito " dysfunction " . Fatigue tends to be a big part of PIDD. Speaking from experience, it is VERY difficult to be in the position of not have what we feel is an acceptable explanation for the many thing that plague our PIDD kiddos. The result of our visit to Cleveland Clinic was the general concensus that the girls were falling through the cracks for a diagnosis of cystic fibrosis. It seems that the issue of whether or not your child has seizures is the predominent factor in diagnosing them with Mito disease. I have read that not all mito kids have seizures, but they dismissed the possibility once they found that the girls do not have them. I have to agree that PIDD kids likely have mito dysfinction. Not sure that helps at all. Also, wanted to mention a couple of other things. You mentioned that your son has IgA deficiency? Viva has a VERY high IgA content. They usually do not put kids with true IgA deficiency on IgA products as it can cause many side effects or serious problems. Additionally, we had the kids on Miralaz and they experienced terrible headaches and nausea. We recently learned that, while this is not a typical side effect of miralax (it is not usually absored), many kids with PIDD do not have normal gut activity and absorb things they should not and do not absorb things they should. THe GI doc said that it was apparent the kids were actually absorbing the miralax systemmically, thereby it was causing headaches and nausea. Terri > > > Hi all, > > > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just started on Vivaglobin. He has suffered from chronic infections, chronic fatigue, and recurrent GI issues including nausea, constipation, and severe food intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where he was fully functional. > > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his infusion. Is this typical? He still is by no means able to live a " normal " life- he does not have the energy to attend school and activities regularly due to some issue or other-his gut, feeling tired/lousy, headache. Between the time we were switching from IVIG to Viva he got an infection- in the 1 week he was off therapy. Then he had to go on antibiotics, and he hasn't been doing well since. He's been tired and had nausea on and off since he got off the antibiotics. > > The best 2 months we had were when he was on Privigen and Miralax- he made it through that whole time with high energy and few gut problems. > > We switched to Viva because Dr suggested it to help with fatigue. I also was excited about doing it because of what I heard from other parents about it helping fatigue. I have been told that his initial dose is low- 6g weekly for 120lb. > Could that be a reason he doesn't seem to be responding well? Or does it take a while to get up to speed with the Viva? > > I have wondered about Mito issues due to his chronic fatigue- he does not have seizures and I am unsure if it would be helpful to have to travel to Cleveland Clinic to get screened for mito. > > > Does anyone have thoughts on this? > > Thanks, > Cyndi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Just a quick comment - seizures can be very difficult to identify and diagnose. Our son had brain function testing for ADD/auditory processing and we were surprised to find a seizure focal site on the testing. I'm not sure I would rule-out mito disease due to the absence of seizures. EEGs often miss seizures too. ________________________________ From: cerdaclan <tcerda@...> Sent: Mon, December 14, 2009 10:28:00 AM Subject: Re: Feedback on current status/ mito issues?  Good Morning Cyndi, I wanted to let you know about our experieince at Cleveland Clinic for a workup for mito disease with both of our daughters. We saw Dr. Cohen's Clinic. First, they do not believe in subclass or specific antibody disorder as a form of PIDD. Once in the clinic, they wanted us to see their ID docs and Immunologists. They also explained to us that ALL kids with PIDD likely have mito " dysfunction " . Fatigue tends to be a big part of PIDD. Speaking from experience, it is VERY difficult to be in the position of not have what we feel is an acceptable explanation for the many thing that plague our PIDD kiddos. The result of our visit to Cleveland Clinic was the general concensus that the girls were falling through the cracks for a diagnosis of cystic fibrosis. It seems that the issue of whether or not your child has seizures is the predominent factor in diagnosing them with Mito disease. I have read that not all mito kids have seizures, but they dismissed the possibility once they found that the girls do not have them. I have to agree that PIDD kids likely have mito dysfinction. Not sure that helps at all. Also, wanted to mention a couple of other things. You mentioned that your son has IgA deficiency? Viva has a VERY high IgA content. They usually do not put kids with true IgA deficiency on IgA products as it can cause many side effects or serious problems. Additionally, we had the kids on Miralaz and they experienced terrible headaches and nausea. We recently learned that, while this is not a typical side effect of miralax (it is not usually absored), many kids with PIDD do not have normal gut activity and absorb things they should not and do not absorb things they should. THe GI doc said that it was apparent the kids were actually absorbing the miralax systemmically, thereby it was causing headaches and nausea. Terri > > > Hi all, > > > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just started on Vivaglobin. He has suffered from chronic infections, chronic fatigue, and recurrent GI issues including nausea, constipation, and severe food intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where he was fully functional. > > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his infusion. Is this typical? He still is by no means able to live a " normal " life- he does not have the energy to attend school and activities regularly due to some issue or other-his gut, feeling tired/lousy, headache. Between the time we were switching from IVIG to Viva he got an infection- in the 1 week he was off therapy. Then he had to go on antibiotics, and he hasn't been doing well since. He's been tired and had nausea on and off since he got off the antibiotics. > > The best 2 months we had were when he was on Privigen and Miralax- he made it through that whole time with high energy and few gut problems. > > We switched to Viva because Dr suggested it to help with fatigue. I also was excited about doing it because of what I heard from other parents about it helping fatigue. I have been told that his initial dose is low- 6g weekly for 120lb. > Could that be a reason he doesn't seem to be responding well? Or does it take a while to get up to speed with the Viva? > > I have wondered about Mito issues due to his chronic fatigue- he does not have seizures and I am unsure if it would be helpful to have to travel to Cleveland Clinic to get screened for mito. > > > Does anyone have thoughts on this? > > Thanks, > Cyndi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 I agree with you! Molly as DEFINATELY having seizures when she was at Cleveland Clinic. I do not believe they were mito caused. Rather, she had gotten extremely ill with a GI infection while we were camping and got very dehydrated and had severe blood sugar issues. I beleive that these two things caused seizures and it took several months for them to resolve....they got fewer and fewer between seizures....starting with little focal seizures (where her eyes would roll) several times a minutes. Over six months, it occurred less and less frequently til they were gone. They did not occur DURING her EEG and it was completely ruled out that she was having any type of seizure because she did not have them during the 30 minute EEG. She still has them very seldomly when she is not well. She tends to have terrible problems controlling her blood sugar when she is sick (very much like a child with CF). Terri ---- <stacy171@...> wrote: Just a quick comment - seizures can be very difficult to identify and diagnose. Our son had brain function testing for ADD/auditory processing and we were surprised to find a seizure focal site on the testing. I'm not sure I would rule-out mito disease due to the absence of seizures. EEGs often miss seizures too. ________________________________ From: cerdaclan <tcerda@...> Sent: Mon, December 14, 2009 10:28:00 AM Subject: Re: Feedback on current status/ mito issues?  Good Morning Cyndi, I wanted to let you know about our experieince at Cleveland Clinic for a workup for mito disease with both of our daughters. We saw Dr. Cohen's Clinic. First, they do not believe in subclass or specific antibody disorder as a form of PIDD. Once in the clinic, they wanted us to see their ID docs and Immunologists. They also explained to us that ALL kids with PIDD likely have mito " dysfunction " . Fatigue tends to be a big part of PIDD. Speaking from experience, it is VERY difficult to be in the position of not have what we feel is an acceptable explanation for the many thing that plague our PIDD kiddos. The result of our visit to Cleveland Clinic was the general concensus that the girls were falling through the cracks for a diagnosis of cystic fibrosis. It seems that the issue of whether or not your child has seizures is the predominent factor in diagnosing them with Mito disease. I have read that not all mito kids have seizures, but they dismissed the possibility once they found that the girls do not have them. I have to agree that PIDD kids likely have mito dysfinction. Not sure that helps at all. Also, wanted to mention a couple of other things. You mentioned that your son has IgA deficiency? Viva has a VERY high IgA content. They usually do not put kids with true IgA deficiency on IgA products as it can cause many side effects or serious problems. Additionally, we had the kids on Miralaz and they experienced terrible headaches and nausea. We recently learned that, while this is not a typical side effect of miralax (it is not usually absored), many kids with PIDD do not have normal gut activity and absorb things they should not and do not absorb things they should. THe GI doc said that it was apparent the kids were actually absorbing the miralax systemmically, thereby it was causing headaches and nausea. Terri > > > Hi all, > > > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just started on Vivaglobin. He has suffered from chronic infections, chronic fatigue, and recurrent GI issues including nausea, constipation, and severe food intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where he was fully functional. > > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his infusion. Is this typical? He still is by no means able to live a " normal " life- he does not have the energy to attend school and activities regularly due to some issue or other-his gut, feeling tired/lousy, headache. Between the time we were switching from IVIG to Viva he got an infection- in the 1 week he was off therapy. Then he had to go on antibiotics, and he hasn't been doing well since. He's been tired and had nausea on and off since he got off the antibiotics. > > The best 2 months we had were when he was on Privigen and Miralax- he made it through that whole time with high energy and few gut problems. > > We switched to Viva because Dr suggested it to help with fatigue. I also was excited about doing it because of what I heard from other parents about it helping fatigue. I have been told that his initial dose is low- 6g weekly for 120lb. > Could that be a reason he doesn't seem to be responding well? Or does it take a while to get up to speed with the Viva? > > I have wondered about Mito issues due to his chronic fatigue- he does not have seizures and I am unsure if it would be helpful to have to travel to Cleveland Clinic to get screened for mito. > > > Does anyone have thoughts on this? > > Thanks, > Cyndi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Cyndi, What docs do you see in the Seattle area? We understand there are no good immunos in the Portland area and we will need to travel to Seattle. I have family in Bothell. We know some great immunos in Seattle, but are worried about getting lost in the shuffle of a teaching hospital. Just wonder if you have someone you love? We are also looking for a great new pulmonologist to deal with Molly's lung issues. Our ability to continue traveling to UCLA now from Oregon is going to be tough for us financially now that we have moved. Thanks! Terri > > > > Hi Cyndi, Sounds like this has been a tough road. My son is 14 and is about 150lbs and is doing 6gms per week. He is not on Viva but Gammagard SubQ. He is DOING GREAT! But he has been on infusions since he was 3. First IV then 4 years ago he started SubQ. It takes a little while to build up in the system but for > > > > us SubQ is fantastic. You do not have the peaks and troughs meaning the fatigue because his level stays constant rather than fluctuating with the Gamma globulin running out in 23days. I would say you need to give it at least 6 months to get him stable. How old is your son? My son has had a few breakthrough infections including pneumonia once but overall his gut issues have subsided, along with his chronic infections and severe allergy issues. I would just stay with it and give it a chance to readjust his system. I know it is hard to see your son so sick but it takes time for it to settle things down. > > BARBIE > > > > > > > > > > ________________________________ > > From: CYNDITK <cyndi@> > > > > Sent: Tue, December 8, 2009 2:34:49 PM > > Subject: Feedback on current status/ mito issues? > > > > > > > > Hi all, > > > > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just started on Vivaglobin. He has suffered from chronic infections, chronic fatigue, and recurrent GI issues including nausea, constipation, and severe food intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where he was fully functional. > > > > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his infusion. Is this typical? He still is by no means able to live a " normal " life- he does not have the energy to attend school and activities regularly due to some issue or other-his gut, feeling tired/lousy, headache. Between the time we were switching from IVIG to Viva he got an infection- in the 1 week he was off therapy. Then he had to go on antibiotics, and he hasn't been doing well since. He's been tired and had nausea on and off since he got off the antibiotics. > > > > The best 2 months we had were when he was on Privigen and Miralax- he made it through that whole time with high energy and few gut problems. > > > > We switched to Viva because Dr suggested it to help with fatigue. I also was excited about doing it because of what I heard from other parents about it helping fatigue. I have been told that his initial dose is low- 6g weekly for 120lb. > > Could that be a reason he doesn't seem to be responding well? Or does it take a while to get up to speed with the Viva? > > > > I have wondered about Mito issues due to his chronic fatigue- he does not have seizures and I am unsure if it would be helpful to have to travel to Cleveland Clinic to get screened for mito. > > > > Does anyone have thoughts on this? > > > > Thanks, > > Cyndi > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Cyndi, What docs do you see in the Seattle area? We understand there are no good immunos in the Portland area and we will need to travel to Seattle. I have family in Bothell. We know some great immunos in Seattle, but are worried about getting lost in the shuffle of a teaching hospital. Just wonder if you have someone you love? We are also looking for a great new pulmonologist to deal with Molly's lung issues. Our ability to continue traveling to UCLA now from Oregon is going to be tough for us financially now that we have moved. Thanks! Terri > > > > Hi Cyndi, Sounds like this has been a tough road. My son is 14 and is about 150lbs and is doing 6gms per week. He is not on Viva but Gammagard SubQ. He is DOING GREAT! But he has been on infusions since he was 3. First IV then 4 years ago he started SubQ. It takes a little while to build up in the system but for > > > > us SubQ is fantastic. You do not have the peaks and troughs meaning the fatigue because his level stays constant rather than fluctuating with the Gamma globulin running out in 23days. I would say you need to give it at least 6 months to get him stable. How old is your son? My son has had a few breakthrough infections including pneumonia once but overall his gut issues have subsided, along with his chronic infections and severe allergy issues. I would just stay with it and give it a chance to readjust his system. I know it is hard to see your son so sick but it takes time for it to settle things down. > > BARBIE > > > > > > > > > > ________________________________ > > From: CYNDITK <cyndi@> > > > > Sent: Tue, December 8, 2009 2:34:49 PM > > Subject: Feedback on current status/ mito issues? > > > > > > > > Hi all, > > > > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just started on Vivaglobin. He has suffered from chronic infections, chronic fatigue, and recurrent GI issues including nausea, constipation, and severe food intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where he was fully functional. > > > > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his infusion. Is this typical? He still is by no means able to live a " normal " life- he does not have the energy to attend school and activities regularly due to some issue or other-his gut, feeling tired/lousy, headache. Between the time we were switching from IVIG to Viva he got an infection- in the 1 week he was off therapy. Then he had to go on antibiotics, and he hasn't been doing well since. He's been tired and had nausea on and off since he got off the antibiotics. > > > > The best 2 months we had were when he was on Privigen and Miralax- he made it through that whole time with high energy and few gut problems. > > > > We switched to Viva because Dr suggested it to help with fatigue. I also was excited about doing it because of what I heard from other parents about it helping fatigue. I have been told that his initial dose is low- 6g weekly for 120lb. > > Could that be a reason he doesn't seem to be responding well? Or does it take a while to get up to speed with the Viva? > > > > I have wondered about Mito issues due to his chronic fatigue- he does not have seizures and I am unsure if it would be helpful to have to travel to Cleveland Clinic to get screened for mito. > > > > Does anyone have thoughts on this? > > > > Thanks, > > Cyndi > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Mito dysfunction is very common with alot of disease process.. Diabetes, Parkinsons,,,etc.. Mitochondrial disease, affects your whole body... including but not always immune issues.. a zillion other disease processess could be contributing factors... autoimmune, neurological, muscular, etc.. Mito kids are typically , and constantly struggling with many many body system issues at once.. it is not uncommon for a child with mito to have 10+_specialists..to help manage their care..We do not have seizures, and that was never a dx factor ,,,,but our care was in Pittsuburgh and Boston.. HTH Kathleen > > > > > > Hi all, > > > > > > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just started on Vivaglobin. He has suffered from chronic infections, chronic fatigue, and recurrent GI issues including nausea, constipation, and severe food intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where he was fully functional. > > > > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his infusion. Is this typical? He still is by no means able to live a " normal " life- he does not have the energy to attend school and activities regularly due to some issue or other-his gut, feeling tired/lousy, headache. Between the time we were switching from IVIG to Viva he got an infection- in the 1 week he was off therapy. Then he had to go on antibiotics, and he hasn't been doing well since. He's been tired and had nausea on and off since he got off the antibiotics. > > > > The best 2 months we had were when he was on Privigen and Miralax- he made it through that whole time with high energy and few gut problems. > > > > We switched to Viva because Dr suggested it to help with fatigue. I also was excited about doing it because of what I heard from other parents about it helping fatigue. I have been told that his initial dose is low- 6g weekly for 120lb. > > Could that be a reason he doesn't seem to be responding well? Or does it take a while to get up to speed with the Viva? > > > > I have wondered about Mito issues due to his chronic fatigue- he does not have seizures and I am unsure if it would be helpful to have to travel to Cleveland Clinic to get screened for mito. > > > > > > Does anyone have thoughts on this? > > > > Thanks, > > Cyndi > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Mito dysfunction is very common with alot of disease process.. Diabetes, Parkinsons,,,etc.. Mitochondrial disease, affects your whole body... including but not always immune issues.. a zillion other disease processess could be contributing factors... autoimmune, neurological, muscular, etc.. Mito kids are typically , and constantly struggling with many many body system issues at once.. it is not uncommon for a child with mito to have 10+_specialists..to help manage their care..We do not have seizures, and that was never a dx factor ,,,,but our care was in Pittsuburgh and Boston.. HTH Kathleen > > > > > > Hi all, > > > > > > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just started on Vivaglobin. He has suffered from chronic infections, chronic fatigue, and recurrent GI issues including nausea, constipation, and severe food intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where he was fully functional. > > > > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his infusion. Is this typical? He still is by no means able to live a " normal " life- he does not have the energy to attend school and activities regularly due to some issue or other-his gut, feeling tired/lousy, headache. Between the time we were switching from IVIG to Viva he got an infection- in the 1 week he was off therapy. Then he had to go on antibiotics, and he hasn't been doing well since. He's been tired and had nausea on and off since he got off the antibiotics. > > > > The best 2 months we had were when he was on Privigen and Miralax- he made it through that whole time with high energy and few gut problems. > > > > We switched to Viva because Dr suggested it to help with fatigue. I also was excited about doing it because of what I heard from other parents about it helping fatigue. I have been told that his initial dose is low- 6g weekly for 120lb. > > Could that be a reason he doesn't seem to be responding well? Or does it take a while to get up to speed with the Viva? > > > > I have wondered about Mito issues due to his chronic fatigue- he does not have seizures and I am unsure if it would be helpful to have to travel to Cleveland Clinic to get screened for mito. > > > > > > Does anyone have thoughts on this? > > > > Thanks, > > Cyndi > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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