Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 Hi, No specific experience, but I have the doctors suggested NOT to vaccinate until they get to the bottom of your baby's illness? If not, you may want to bring up the subject. If I had known better, my baby wouldn't have been vaccinated until we knew what we were up against. I'm not anti-vaccine but I think if a child is ill already, the vaccines (with their possible injury to a sick child) muddy the water sometimes when trying to sort out symptoms. Vaccines can certaintly wait a few months - it may already be too late as some are administered before the baby comes home after birth (which I did NOT know when my son was born!). My thoughts will be with you as I know how hard this is with a new baby! H new baby > Hello. I am new here. I have a two month old daughter. She was sent > to the Mayo Clinic due to excessive vomiting, question as to how well > she can see, and failure to thrive. During the course of the testing, > excess amounts of pyruvate and lactic acid were found in her blood > (three times, venous as well as arterial). We are still waiting to go > back to see the geneticist to get more answers. Right now all I know > is that they suspect that it is metabolic/mitochondrial, but they have > given us nothing other than that. At this time, her brain, kidneys and > liver all seem to be fine. I am desparate to find out more about what > is wrong with my baby and if there is any chance that this may not be > as bad as it seems right now. Have any of you had similar experiences > to this? > > Angie > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 Thanks for your reply. Unfortunatly, it is too late. Gracie got her shots on Thursday. I did bring the issue up with the pediatrician and he said at this time there were no contraindications to the vaccines. Even so, I did worry about it. Despite a little fussiness, she seemed to handle them well. Angie -- In Mito@y..., " Hunt " <Please_Help@m...> wrote: > Hi, > > No specific experience, but I have the doctors suggested NOT to vaccinate > until they get to the bottom of your baby's illness? If not, you may want > to bring up the subject. If I had known better, my baby wouldn't have been > vaccinated until we knew what we were up against. > > I'm not anti-vaccine but I think if a child is ill already, the vaccines > (with their possible injury to a sick child) muddy the water sometimes when > trying to sort out symptoms. Vaccines can certaintly wait a few months - it > may already be too late as some are administered before the baby comes home > after birth (which I did NOT know when my son was born!). > > My thoughts will be with you as I know how hard this is with a new baby! > > H > new baby > > > > Hello. I am new here. I have a two month old daughter. She was sent > > to the Mayo Clinic due to excessive vomiting, question as to how well > > she can see, and failure to thrive. During the course of the testing, > > excess amounts of pyruvate and lactic acid were found in her blood > > (three times, venous as well as arterial). We are still waiting to go > > back to see the geneticist to get more answers. Right now all I know > > is that they suspect that it is metabolic/mitochondrial, but they have > > given us nothing other than that. At this time, her brain, kidneys and > > liver all seem to be fine. I am desparate to find out more about what > > is wrong with my baby and if there is any chance that this may not be > > as bad as it seems right now. Have any of you had similar experiences > > to this? > > > > Angie > > > > > > > > > > > > Please contact mito-owner@y... with any problems or questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Angie, welcome aboard. You are fortunate in that the physicians discovered this early on. When it came to our daughter, the pediatrician simply summed up her problems as unusual but not alarming behavior, saying that her low muscle tone would allow her to work in the circus. He meant it harmlessly -- of course, he never suspected anything metabolic. You can imagine the size of the package of info from the UMDF that I sent him once we knew!! Our experience is that we had to follow our instincts. Our daughter's FTT (fail. to thrive) led us to seek other opinions, and we weren't afraid to be pushy or ask many Qs. We had to reopen our biology textbooks again, and did a lot of research on the web (i.e., emedicine.com, umdf.org, britannica.com, etc.). Also we spoke with other parents in on the scene. Diagnosis is usually long, and requires several tests, some of which can be invasive, such as a muscle biopsy. During the diagnosis time period, we found ourselves sometimes doing so much research that in fact we didn't spend as much quality time with our daughter; we quickly got out of that cycle. Don't forget to enjoy your daughter. Initially the prognosis was murky, at best. They suspected a form of Pyruvate Dehydrogenase Deficiency, which differs from child to child, but they also suspected a host of other disorders. They've finally settled on "Congenital Lactic Acidosis of unknown etiology"... another bio-geneticist we consulted overseas disagrees with our physician here in that there is ALWAYS a way of discerning where the roots of the lactic acidosis start. Hence, we've reignited the dx. This said, our daughter is now 2 years old and doing "fine". She is speech and possibly cognitively delayed, she is still somewhat hypotonic, she fatigues very easily, and has episodes of zoning out (although not strokes or seizures) completely, but so far we do not see anything that will compromise her life. Her laugh and smiles and happiness are contagious. Learn as much as you can. Give yourself and your husband breaks. Consult the United Mitochondrial Disease Foundation (which you probably already have done), too. And don't forget that you have got some great contacts and friends here with whom you can vent. I don't post often, but keep up with the others. I also have tried to become active in promoting awareness of the disease, via articles and such... it's my way of dealing with it and helping others. Warmly, Suz premedangie@... wrote: Hello. I am new here. I have a two month old daughter. She was sent to the Mayo Clinic due to excessive vomiting, question as to how well she can see, and failure to thrive. During the course of the testing, excess amounts of pyruvate and lactic acid were found in her blood (three times, venous as well as arterial). We are still waiting to go back to see the geneticist to get more answers. Right now all I know is that they suspect that it is metabolic/mitochondrial, but they have given us nothing other than that. At this time, her brain, kidneys and liver all seem to be fine. I am desparate to find out more about what is wrong with my baby and if there is any chance that this may not be as bad as it seems right now. Have any of you had similar experiences to this?AngiePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Hi Angie, Wow. I was in your shoes 3 yrs ago. Same issue, but my son stopped breathing and was severely dehydrated. They told us the same thing. To this day he still does not have a diagnosis. He has had many medical problems. None of which have been life threatening other than his ability to dehydrate in a very short time during times of phsyiological stress. He was developmentally delayed, but is now considered caught up. He is emotionally immature, but that isn't surprising considering what he has been through. He isn't doing very well in preschool. He goes to a private nursery school and is in a normally developing classroom. All in all my husband and I are thrilled with his development considering the number of horrible things we were told during his infancy. My advice to you. (This will be difficult.) Don't take all the doctors tell you to heart. They are not God. Get in touch with your early intervention services. They are a source of support and information. They also can help your daughter stay on target if she falls behind or even if she doesn't. They will let you know if they have concerns about her development. My son started therapy at 5 mths old. He still gets speech therapy and is going to a clinic for evaluation on friday. Hopefully he will get services through the county school system. Corbins lactate and pyruvate levels where high up until last year. His last two tests have been within normal limits. He was also carnitine dificent when he was born. He had severe reflux(GERD) as an infant and still has issues where that is concerned. I think I have told you everything, but if you have any questions I would be happy to answer them. So ask away. Love your baby and try to enjoy this time. She will grow up so quickly and everything you are dealing with right now can keep you from that. That's what happened to me. I wish I could prevent it from happening to anyone else going through this. It must be so hard for a parent to deal with their baby having something wrong, but it is worse,I think, to deal with something being wrong, but not knowing what it is. It is the not knowing that makes it so hard. Joining this group is a great start. There are many knowledgable people here. Hang in there. I'll be thinking of you. Barbara mom to Corbin 3, probable mito/metabolic disorder, reflux, oral motor and motor planning dyspraxia, encephalopathy and expressive speech disorder. > Hello. I am new here. I have a two month old daughter. She was sent > to the Mayo Clinic due to excessive vomiting, question as to how well > she can see, and failure to thrive. During the course of the testing, > excess amounts of pyruvate and lactic acid were found in her blood > (three times, venous as well as arterial). We are still waiting to go > back to see the geneticist to get more answers. Right now all I know > is that they suspect that it is metabolic/mitochondrial, but they have > given us nothing other than that. At this time, her brain, kidneys and > liver all seem to be fine. I am desparate to find out more about what > is wrong with my baby and if there is any chance that this may not be > as bad as it seems right now. Have any of you had similar experiences > to this? > > Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Hello and Welcome. I think the best advice I can give you, is that while you lnever quit looking for that final diagnosis, contiune to treat the symptoms that are before you. The vomitting and failure to thrive is a big one. Make sure they test your little one for GERD (gastro-esophageal reflux ) Many of the mito kids have this. Besides causing vomitting it is also very painful. As well, our son had dysphagia (trouble swallowing) and this was also a factor in his failure to thrive. They can do a swallow study to access the swallowing, and if she is having difficulty often thickening her formula will help a great deal. Good luck, try not to get too overwhelmed and remember we are always here at this group for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Angie, Consistent elevated levels of lactate and Pyruvate certainly point one in the direction of a metabolic/mito type problem, but until you have more professional info,my suggestion to you is to treat the issues as they arise, especially the vomiting/FTT bit. Gastro oesophageal reflux is common amongst our mito kids, and it really needs treating appropriately for the child to grow and thrive. Of course children can Fail to thrive for other reasons too, and I am sure your Drs will be addressing these issues. Early intervention services will assist in gross motor development and can be a great source of community support. I can feel your agony and frustration right now Angie..we too have followed this path. Some children here on the list are doing great, whilst others struggle. No one has the magic wand for you to answer your question, but we are certainly here to help support you on your journey, ne (in Australia). Mum to Gaby 6 years, mito disorder(Pyruvate Dehydrogenase deficiency), ketogenic diet, G Tube, microcephaly, global delays, and the prettiest smile. -Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Hi everyone, it has been such a long time since I posted anything as I have been offline for weeks and recovering from a caesarean, now 11 weeks ago. Anyway, here is a photo of my little darling, after 4 1/2 years of trying and losing 2 little angels by miscarriage we finally got there. Stay positive. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Dawn, Thanks for sharing your beauty!! S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 Dawn, Your baby is just beautiful! Congratulations, and thank you so much for sharing. Enjoy! Lori Quote Link to comment Share on other sites More sharing options...
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