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lisamac

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  1. We are in BC, but I am willing to go anywhere in Canada to see a doctor. I would go to the States but it is very hard to get the medication they use and for our peds doctor to work with them.
  2. Hello, I was wondering if anyone knows of a good doctor in Canada for a child who is 12. I believe my son my have POTS and NCS. My son starting having abnormal breath holding spells at 7 months old and when he was 2 1/2 he received a pacemaker for the spells as his heart was pausing from 7 to 15 seconds with each spell. He was having up to 10 spells a day, for those 2 years. Not only did he have the breath holding spells, he had episodes of vision loss , central apnea ,stomach issues , heart rate going for 80 beats to 170 beats when he went from sitting to standing and low blood pressure. He complained of gallops in his heart, dizziness and chest pains. He also had learning difficulties and delays. He also has issues taking meds and be under anaesthesia. As he has gotten older he now complains of shortness of breath, tingling in his legs, dizziness, exercise intolerance, his body doesn’t regulate to heat very well especially when playing sports on a warm day. I have not checked his heart rate in the last couple of years as the cardio doctors said he was fine and it would cause any problems. I don’t really believe him, but I stopped checking it because it scared me. I kind have had my head buried in the sand the last few years as I knew he had is pacemaker and a least his heart would be okay and I he never really complained much about is symptoms as he has had them since he was a baby. Last week we went for a pacemaker check up and we were told the pacemaker battery is dead and that they where finish with seeing him, we are more then welcome to come back if the spells returned. My husband and I are scared to think what may happen now if he ever gets hurts, as we have seen our son start to have a spell and the pacemaker kick in. I am angry that the doctors made this decision with out even knowing how many spells he had through the last 2 year. I am also concerned that he will be hitting puberty soon and who know what changes his body will go through. We can only hope that maybe he will out grow this medical problem, but if he doesn’t we need to find a doctor who will understand what he is going through. I am so sorry for rambling on. Lisa
  3. hello , i spoke to my son cardio doctor this morning . he wasn't to worried about his heart rate 190-195. he said that he is a kid and not to worry. he will call when he gets the results faxed to him if there is anything wrong . that could take up to ten days. our family doctor was concerned on friday when the hospital call her with the verbal results. we were not supposed to let him get to execited until we find out what is going on . we have taken him out school this week to rest . i really wish these doctor could get together and figure out what is going on. thanks lisa
  4. hello , i just wanted to tell you guys jay's holter test came back yesterday . he has been having a heart rate of 190-195 when he sitting and playing . our cardio doctor is away until the 23rd of june so we are not sure if it is vent/aturial tachy. anyways i will keep you posted on any other updates we get . thanks lisa&jay
  5. hello , i took jay to the doctors today . our family doctor had a 24hour holter monitor put on him right away,he wasn't very happy about that. so hopefully we hear something in the next few days . i spoke to his ped doctor today as well . we live a 1hour 35min ferry ride on top of a 2hour drive a way from him . he said if this doesn't get better over the weekend we will have to go to the mainland to see him ,cardio and our nero doctors next week . i sure hope it doesn't come to that .that will be our 4th trip there in 6months . anyways i will keep you guys posted on jay's updates. thanks again for the support. lisa & jay
  6. I would just like to says thank-you for your replys. My son has not been diagnosed by our doctors in canada yet , but i have talked to a wonderful doctor from texas . My son has had on going health problems from 6 months of age . he recieved a pacemaker when he was 3 years old for abnormal breath-holding spells .The doctors here just keep fixing symptoms or say it's symptoms of something.anyways I will touch base with his family doctor tommorrow. thanks you lisa&jay
  7. hello , I was just wonder if anyone could help me out . My son who is 6 has been complaining about his hands and feet this week. Last sunday he woke up and could barely walk and was very pale and grey . He said that he had the wiggles in his hands and feet . He couldn't even squeeze my fingers. That day he slept on and off all day, then began to vomitt .So we thought maybe he just had the flu. Yesterday morning he woke up with the wiggles again . His colour was not to bad and he felt better within a few hours . Now today he came home from school and said that he has the wiggles in his hands again. I'm thinking that the wiggles are pin and needles and muscle weakness . He also told us on thursday that he was feeling like he was going to faint when he was playing soccer. I not sure if the wiggles has anything to do with ncs & pots. thanks lisa
  8. hello , i was just wondering how they are getting your b/p from the loop recorder?my son had one implanted about 4 years ago for breatholding spells. every time he had a spell we pushed a button and it would record his heart rate .it would record 15 seconds befor the spell and 45 seconds during and after ward . i should add he did pass out anywhere for 30 sec to 1min with each spell . we found out after they down load the machine his heart was pausing 7 to 15 sec each spell.shortly after he had a pacemaker implanted . i was just wonder if they can record the b/p since we are having a hard time recording it with the 24 hour b/p test .they always seem to give him test on good days ! lisa
  9. hello my son does not do well with any type of anestesia . he went to the dentist and became very ill for about 12 hours . when he had his pacemaker put in it took him 6 hours to come out of recovery and had respiratory problems.he is going to have his tonsil and adenoids removed on nov 15. he will be sent to children's hospital for that .we do not have the resources for him at our hospital . it is really scary not knowing how he will this time lisa
  10. hi , i was going to take my son to a chinese doctor . i had a friend tell me that they are very good . i figure natural stuff would be better than all the meds doctors would try . i'm waiting though for him to be able to explain more to me before take him to one . he still doesn't tell me lots unless i ask him how he feels . i can tell by looking at him what is going on to some extent . lisa
  11. thank you for all the replies . this chiropractor is great ! i seen him after a car accident and he was the only one who helped me . he wants to see jonathan in a week to check his alignment . thanks again for the replies . lisa
  12. hello again , i should let you know that i had very rough pregnancy with him . i had a uterus that was smaller on my left side and a septum in the middle of it . he grew on the small side . the doctor told me if i ever carried a child on that side the baby would not make past 5 or 6 months along , but he did . he was also breech so his head was in my ribs the last 4 months of my pregnancy . he has had health problems for the day he was born. i just though i should give a history on my pregnancy . thanks again lisa
  13. hello , jonathan has had a bad few weeks . for the last 10 days his neck and lower back have been sore along with his normal problems. i took him to our family doctor and she said it was growning pain ,but if it didn't get better to come back and see her . (her famous last words. )anyways i took him to the chiropractor today and found out that his 1&2 vertebra where pushed to the left . this would cause pulling to the right of his neck . his left leg was half inch out and many other things as well where out of alignment .this doctor was quite surprised at how bad he was . i was wonder if anyone else has gone to a chiropractor and if it helped . thanks lisa
  14. thank you for the replies , we now have some good doctor who are doing some more reseach to help us with treatment or help us pay the medical expenses . we live on the west coast so to have to travel to dr.grubb is going to be a long haul . where is dr.stewart ? maybe she/he is closer to us. i don't know but do you have periods of diffrent symptoms that come and go ? right now jonathan has no appetite, tired ,some vision loss ( only in the morning when he wakes up . this last maybe a minute or two ), bad stomache pains ,blood pressure and heart rate all over the place .the older he gets the more he can explain his symptoms . i really would like to get help befor september, he will be starting grade 1. right now he has a hard time just making 2 half hours of kindergarten . thanks again lisa
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