Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 Elaine, The day after Josh was born we found out that he had TOF. The doctor told us that if Josh was blue and his gums were blue and he was crying and like this for 5-10 min., without calming down, then we should rush him to the nearest emergency room because he would probably be having a " tet spell " . While we were in the Cardiologists office Josh started to cry, turned extremely blue, held his breath and then calmed right down and his color came rushing back (I think he was actually passing out). The cardiologist saw him do this and said that it was not a " tet spell " because his gums were not blue. Josh did this for six weeks and the whole time we would tell doctors and nurses that he was fine and the cardiologist had seen this and said it was okay. He was very blue but we could always calm him down and his color would always come back. I guess when kids are older they will squat down if they are having a tet spell because it helps to break it. We would hold Josh with his knees up into his chest and that would help calm him down. When he was six weeks old we found out that this was NOT okay and that is when they did the BT shunt. He spent 10 days in the PICU while they tried to figure out what was causing his " frightningly severe blue spells " I think they finally just decided that since they couldn't find anything else then mabye it was his heart and so they did the shunt. They thought that mabye he was having atypical " tet spells " Nobody really claims to know what was going on with him. But the shunt fixed the problem and so obviously it was his heart!! He doens't do that anymore. Two times he has cried really hard and I can not calm him down! I was really worried that he may precipitate a " tet spell " but he wasn't really blue during these crying spells. I don't think he's ever had a true " tet spell " at least not what they would call one. Another thing the cardiologist told me was that Josh would turn blue when he cryed and as long as his sats went right back up then this was okay. I don't really like to see him turn blue when he cries. If he stayed blue and they were not coming up on their own then that may be a " tet spell " . Apparantly, if it truly is a " tet spell " then they can't hear the murmur anymore. Sorry this is so long. Hope it helps. Do Jack's blue spells last very long? JMurraybel@... wrote: > From: JMurraybel@... > > Hi all, > I thought I'd give you an update on the saga of Jack's kidney stones. As I > was getting fed up waiting to hear from the hospital I decided to phone them > myself yesterday and see if I could find out what was happening with Jack's > treatment. I spoke to the surgeon's secretary and she was very helpful. The > surgeon is on holiday until the end of September and is hoping to operate on > Jack in early October. He is still liaising with paediatric anaethsetists and > cardiologists as Jack is to have Percutaneous Nephrostomy under general > anaesthetic. He should be in hospital for 4-5 days depending on how well > things go. I must admit I did feel very upset yesterday as I had hoped that > they could remove the stones by lithotripsy and that he wouldn't need to have > this operation. The kidney stones are very large and I presume that this is > the safest way to remove them. > I really just want to get it over with now as it is 7 months since they first > discovered the stones and it's like living with a ticking timebomb. Also, I'm > worried because he has been having a few " blue spells " lately and I don't > know if it's because of his heart or cos of colic caused by the stones. > Jack's heart problems present like TOF. What exactly does a " tet spell " look > like? > > Elaine mum to Elise(7yrs) & Jack(26mths) CHaRGE > Dumfries,Scotland > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 , Kennedy never had TOF, but she still turns blue, and I mean BLUE when she gets mad and really cries. Mom to Kennedy 19 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >Elaine, >The day after Josh was born we found out that he had TOF. The doctor told us that if Josh was blue and his gums were >blue and he was crying and like this for 5-10 min., without calming down, then we should rush him to the nearest >emergency room because he would probably be having a " tet spell " . > While we were in the Cardiologists office Josh started to cry, turned extremely blue, held his breath and then >calmed right down and his color came rushing back (I think he was actually passing out). The cardiologist saw him do >this and said that it was not a " tet spell " because his gums were not blue. > Josh did this for six weeks and the whole time we would tell doctors and nurses that he was fine and the >cardiologist had seen this and said it was okay. He was very blue but we could always calm him down and his color would >always come back. I guess when kids are older they will squat down if they are having a tet spell because it helps to >break it. We would hold Josh with his knees up into his chest and that would help calm him down. > When he was six weeks old we found out that this was NOT okay and that is when they did the BT shunt. He spent 10 >days in the PICU while they tried to figure out what was causing his " frightningly severe blue spells " I think they >finally just decided that since they couldn't find anything else then mabye it was his heart and so they did the shunt. >They thought that mabye he was having atypical " tet spells " Nobody really claims to know what was going on with him. >But the shunt fixed the problem and so obviously it was his heart!! He doens't do that anymore. > Two times he has cried really hard and I can not calm him down! I was really worried that he may precipitate a > " tet spell " but he wasn't really blue during these crying spells. I don't think he's ever had a true " tet spell " at >least not what they would call one. > Another thing the cardiologist told me was that Josh would turn blue when he cryed and as long as his sats went >right back up then this was okay. I don't really like to see him turn blue when he cries. If he stayed blue and they >were not coming up on their own then that may be a " tet spell " . Apparantly, if it truly is a " tet spell " then they >can't hear the murmur anymore. Sorry this is so long. Hope it helps. > Do Jack's blue spells last very long? > > > >JMurraybel@... wrote: > >> From: JMurraybel@... >> >> Hi all, >> I thought I'd give you an update on the saga of Jack's kidney stones. As I >> was getting fed up waiting to hear from the hospital I decided to phone them >> myself yesterday and see if I could find out what was happening with Jack's >> treatment. I spoke to the surgeon's secretary and she was very helpful. The >> surgeon is on holiday until the end of September and is hoping to operate on >> Jack in early October. He is still liaising with paediatric anaethsetists and >> cardiologists as Jack is to have Percutaneous Nephrostomy under general >> anaesthetic. He should be in hospital for 4-5 days depending on how well >> things go. I must admit I did feel very upset yesterday as I had hoped that >> they could remove the stones by lithotripsy and that he wouldn't need to have >> this operation. The kidney stones are very large and I presume that this is >> the safest way to remove them. >> I really just want to get it over with now as it is 7 months since they first >> discovered the stones and it's like living with a ticking timebomb. Also, I'm >> worried because he has been having a few " blue spells " lately and I don't >> know if it's because of his heart or cos of colic caused by the stones. >> Jack's heart problems present like TOF. What exactly does a " tet spell " look >> like? >> >> Elaine mum to Elise(7yrs) & Jack(26mths) CHaRGE >> Dumfries,Scotland >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 , Thanks for the explanation of " tet spells " . I don't think it can be these that Jack is having as his gums don't go blue. The spells only last for a couple of minutes and then pass. The thing that bothers me is that it can happen when he is not upset or crying. He becomes blue around his ,mouth and nose and his fingers and toes go blue. When he is upset or angry he does go blue but it usually stops as soon as he calms down!!! Elaine Quote Link to comment Share on other sites More sharing options...
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