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Toddler Acrocyanosis

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My son is 15 months old. He has been having period of blue/purple extremities. This started about 2 or 3 months ago. He does not have difficulty breathing during these periods. A chest xray was done in december and all looked "normal" then. He went for an ekg on saturday and some blood work. The blood work was not completed because his veins kept "blowing". I am waiting to hear about what the next step will be. The doctors seem to feel all is okay but seem baffled as to why he is turning shades of purple in his hands/feet/ and at times around the mouth. His tongue and gums remain pink. It seems to worsen when he sits for long periods of time. His pulses are good. The doctor had written on the lab order the diagnosis of peripheral vascular disease, but everything i've read about that seems to be for overweight, over 50, and smokers.... I just feel like if it was truly "okay" then they would be able to tell me why this is happening. The blood work was for rheumatological stuff. He also turns bright pink sometimes in his face and extremeties.....Very baffling. First they thought it was viral. They had me record his episodes. The doctors have been very kind and seem genuinely concerned about the why of all of this. I just want to know the why so that I can believe them when they say all is well........
Thanks for any input. '
sincerely, tyler's mom!!!
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First Helper RandaM74
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replied March 19th, 2008
toddler with acrocynosis
Hi I just wanted to know if you received any reply about your son. My son has the same condition and he is 16months. No one can give me answers. Please let me know if you have any new information. Thanks
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replied January 15th, 2009
baby/toddler with acrocynosis
I also am wondering if there were any replies concerning this condition. My son is 8.5 months and has noticeably had it since 2.5 months, beginning in his legs/feet, but increasing in frequency and severity, spreading to his arms and hands. He's also had a spot show up on his shoulder, but not sure that is related.
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replied April 28th, 2009
baby with (acrocyanosis)?
Did you ever find anything out about your son?
i was wondering because i am having this problem with my 14month old daughter and the doctor said is was acrocyanosis and to come back in a year but i cant keep myself content with just that. my daughter's symptoms are very slightly different than your sons in the sense that her tongue and cheeks turn blue-ish also and its her legs, feet, arms, and hands and it is only seeming to get more progressive. please reply if you ever found out what is wrong with your son. you can write me. THANK YOU!
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replied January 4th, 2010
Blue hands
My daughter (32 months) suddenly had the same condition of bluish extremities (mainly on the hands). Lips/Tongue is fine and not bluish. Our paediatrician had earlier told us (for an unrelated reason) to watch out if tongue gets bluish to take her to ER immediately. Still looking for an answer for this new development. she has never had it before.
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replied April 27th, 2010
Acrocyanosis, purple/blue extremities
My son Hunter, who is 11 mos old, was diagnosed with this last night after being rushed to the hospital for dark purple/black fingers and toes. Sometimes it''s the whole foot/ both feet or both of the hands. The Doctor also said it''s called Hunters'' Syndrome. Looking up Hunters'' Syndrome I was shocked by what I found. His pediatrician referred him to a cardiologist today to see if there are any problems with his heart. His pulses are also good, but the doctors are baffled. It''s not from being cold and as of yet his lips have not yet turned purple and it has not affected his breathing, alothough they did tell me to keep an eye on it. If anyone does have information on this, I would be grateful. I''m very worried about my baby and I feel the same way in that if it''s ok then why don''t the medical professionals know what''s going on?! It''s very scary as a mother to not understand what is wrong with your child when clearly something''s not right! And his pediatrician is worried too, telling me to keep a close eye on him and to rush him back if it seems to get darker or stay longer. What do I do???
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replied April 30th, 2010
Acrocyanosis
My 23 month old daughter was diagnosed with acrocyanosis today. I have always noticed her hands and feet were cold & turned blue since she was born, but she was never in any pain. The doctors ran a lot of tests on her heart and everything came back OK. My doctor stated that she could experience problems into adulthood, but many children outgrow this! My advice is to keep asking and demanding that someone check things out. Nothing is worse than not knowing!
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replied May 21st, 2010
My 21 month old daughter was diagnosed with acrocyanosis about 3 months ago. We went to a cardiologist, as well, and were told it was not unusual. She might outgrow it or not. She doesn't have trouble breathing; her cardio tests came back normal; her lips and hands turn blue or purple but her torso, gums, and tongue are healthy toddler pink. Our ped. told us to be concerned if those areas turn blue or if she was having trouble breathing.

She doesn't seem to have any discomfort in the blue areas, either. If your child is going through more color changes - red after purple / blue - or complains of pain or numbness in her fingers and toes ask your doctor about Raynaud's. It's another vascular phenomenon - not very serious, but uncomfortable (it seems to "run" in our family). Hope this helps.
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replied June 22nd, 2010
Acrocyanosis or Asthma?
Wow, glad to know I am not alone. My 19th month old daughter was diagnosed by a cardiologist with Acrocyanosis in March after having cyanotic episodes for three months following a hospital stay for RSV in January. I have since taken her to a pulmonologist. We have done a CT scan, chest xray, abdominal ultrasound, cystic fibrosis test, acid reflux test, and a sleep study. So far they have been normal results. We are seeing a second cardiologist this week per the pulmonologist. We have her on Flovent and Zantac to rule out asthma and reflux. They seem to help, but we are all still baffled. I hope we recieve an answer soon. It is so hard to know what to do, and even harder to see her put through all these tests! My gut feeling tells me this is a precursor to Asthma, but the pulmonologist said we may not know until next year!
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replied October 1st, 2011
Experienced User
Of my 8 children, all but 2 of them have taken to getting blue/purple hands and feet over the course of childhood/teen years. My 3rd child had cold extremities even when she was born! My mother-in-law was diagnosed with acrocyanosis or raynauds many years ago and even wore gloves in Arizona when they moved there to improve her health. Her brother was sent there in his early 20s on the doctor's recommendation because it appears to be in the family. In all my life I have usually never had cold hands/feet, but since the Carpal Tunnel problems, one of my granddaughters tells me to go put gloves on because of my cold hands. My eldest daughter (An RN in a large Portland Hospital) says the only patients that appreciate her cold hands are those with fevers!
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replied January 12th, 2012
I am so thankful to know my daughter is not some superhuman. I have always noticed her hands turned purplishblue. But it seemed it never lasted long. Then last year her legs up to her knees were blue. We rushed her to ER w no answers. Then 3 months,ago I got a frantic call from daycare saying she was blue. I get there and her mouth,hands and feet were blue. Did the capillary test and was at 4 secs. Rushed her to ER. Nothing again. Took her to cardio..said her right side of her heart was slightly enlarged but he was not concerned w it. She also turns bright red at times. Her cheeks and fingertips are fire red sometimes. She never feels cold. And now a new thing has started...when she is blue she trembles alot and seems very disorientated.These episodes only last bout 15 mins. But very scary!
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replied February 13th, 2013
Has anyone ever got an answer or a diagnosis for this my 13 month old is the same
We are 7 months into testing at the hospital and they still have no clue I'm desperate for
An answer?? Please email me if any of you ever had a diagnosis
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replied February 25th, 2013
acrocynasis
hi all,I'm a mum of two and my little girl,evie(3) has acrocyanosis.
she was diagnosed with this weeks after birth but i was told its not life threatening and she can grow out of it..
now 3,she definitely hasn't grown out of it in fact she has it worse now than before.
we went yesterday for a long walk and after a couple hrs she was in tears and had to be picked up by my partner as she was crying she was in pain,even on her dads shoulders she was in pain,it was awful to see.
once we arrived home she was put down and she could barely stand up and i held her and she was shaking,at this point i wrapped her in a blanket and made a hot water bottle and hugged her on my settee but she cried for quite a while and i also noticed her lips were blue which Ive never seen before.
after roughly 30 Min's she calmed down but her hands and feet were still very purple/bluish.
i think i'm now going to go back to my doctor and see what they say.
this condition may not be life threatening but when a 3yr old cannot go for a walk without being in agony there's something not right..
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replied February 25th, 2013
acrocynasis
hi all,I'm a mum of two and my little girl,evie(3) has acrocyanosis.
she was diagnosed with this weeks after birth but i was told its not life threatening and she can grow out of it..
now 3,she definitely hasn't grown out of it in fact she has it worse now than before.
we went yesterday for a long walk and after a couple hrs she was in tears and had to be picked up by my partner as she was crying she was in pain,even on her dads shoulders she was in pain,it was awful to see.
once we arrived home she was put down and she could barely stand up and i held her and she was shaking,at this point i wrapped her in a blanket and made a hot water bottle and hugged her on my settee but she cried for quite a while and i also noticed her lips were blue which Ive never seen before.
after roughly 30 Min's she calmed down but her hands and feet were still very purple/bluish.
i think i'm now going to go back to my doctor and see what they say.
this condition may not be life threatening but when a 3yr old cannot go for a walk without being in agony there's something not right..
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