My daughter was born with a small ASD and a large VSD. She has had a problem with peripheral cyanosis for quite some time now, but it actually didn't start until she was almost 4 months old. I know that it can be common in newborns and very young babies, but my daughter is almost 8 months old, and she has SEVERE cyanosis. It affects her hands and feet severely, several times a day they turn dark purple/blue, and the darkness/mottling extends up her arms and legs. Sometimes they're cool to touch, sometimes not. Now, her cardiologist (without see it) said that it's just normal infant peripheral cyanosis - what I'm wondering is when should she outgrow this if she's going to, and does this extreme of it sound normal, or should we be looking into other options (rheumatoligcal etc...)..
Hello and welcome to our site. You should have your pediatric cardiologist evaluate your daughter. It would also be helpful if you took photos of this cyanosis if you can. I am curious why you refer to this as mottling as well. Can you explain why? It is hard to understand your description of SEVERE; if you look at this from a doctor's point of view. A mother whose child has a cold, can easily say her child is close to dying, that is one reason so many children are seen in emergency rooms for colds. I'm not saying you are exaggerating this, I'm just saying your cardiologist may be thinking that you are and that is why it is important that she be reevaluated. Sometimes it is the nurse that takes your message to the doctor and things get twisted around although i don't know if that is what happened in your case.Is your daughter having any other health issues which could be signs there is a problem? Is she growing normally and hitting her milestones on time? What have the doctors told you about the VSD? Has her murmur changed at all? You would probably be wasting your time with a Rhuematologist at this point in time unless she is having joint problems and you haven't mentioned anything like that in your post. Go back and see the cardiologist. take care
Severe again, as I mentioned above since her hands and feet go DARK purple/blue. Mottling, because when these spells happen, her arms and legs get very mottled. Two cardiologists have told us it is not heart related because it is not central cynaosis - the inside of her mouth does not change color. So they've said that it's just "normal" infant acrocyanosis. However, I've had several nurses tell me that they've never seen acrocyanosis like my daughter's before.
I would disagree about the rheumatologist, as they deal with connective tissue disorders, auto-immune disorders, diseases like Lupus, not just "joints".
Hello again. One of the first things that a doctor considers when dealing with cyanosis is whether or not the inside of the mouth is blue; a child who is having this problem will have the inside of the mouth turning this blue coloring. Usually 'true' mottling is caused by blood pooling in a certain area and is usually seen 24-48 hours before death takes place; something to consider. I understand why you are thinking about the rhuematologist, but usually your child will have other symptoms of these diseases. I dealt with rhuematologists for years; not only did my daughter suffer a terminal form of heart disease, but also from Juvenile Rhuematoid Arthritis, we have had to deal with the majority of issues you are bring up in your post. Your baby will more than likely outgrow this problem; she certainly is not the only baby to have gone through this. The very best thing for you to do is to take her directly to her PC when she is actually having this problem. If your daughter has a large VSD, have they talked about closing the hole? Even having this problem, it would not be a reason for her to be having this discoloration on the skin. have you considered seeing a dermatologist with her. is she hitting her milestones on time? take care
Hi, mshanson! I know it has been a while since this started, but I was curious to see how your daughter is doing and if anyone figured anything out. My son and I are going through the same thing. The doctors are calling him a puzzle baby. For what it's worth, if she didn't grow out of it, I think you were on the right path. My son has an ASD also with the Dark mottling, (hands, arms, feet, legs, face) and he just turned 8 months old. We've been seeing specialists since around 5 1/2 months with no luck, but I think maybe we're getting there. He has circulatory/vascular problems too, and we just saw the Cardiologist also. She said she wasn't the right one to see, but she did give us a referral to a rheumatologist to get vascular ultrasounds and blood work done and a hematologist, because he also has some swelling in his extremities. Ours seems to lean in the autoimmune direction with hematological issues. Do you have any autoimmune or blood disorder/clotting issues in the family? MTHFR, Celiac, mixed connective tissue disease, Raynaud's? Anything like that? We've just started the process that you were going though, and it is a pain! I'm sorry you had to go through that. I just wish we could have answers. If someone could Actually tell me they knew For Sure what it was, and it wasn't serious or a problem, I wouldn't worry about it anymore!
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