AOSupport

JC was recently diagnosed with AOS. I've only had a few days to process, but I am completely terrified at what it means for my son.

I am saddened by the stories I have read here. You are all incredibly strong people to be dealing with such health issues. I am truly grateful that my son doesn't seem to be affected by many of the issues others have, but I am scared that maybe I am missing something?

He is being sent for a heart ECHO. I'm not sure when that will be. My husband and I are also being sent for x-rays of the hands and feet to see if we are at risk of having another child with AOS. We were told that JC would need a head scan only if he stopped growing or developing in someway.

My husband is somewhat in denial about the diagnosis, so I don't feel like I have anyone to talk to. I've done as much research on the internet as I can, but there isn't a lot of information about AOS. Does anyone have any personal advice? What tests did you get done and why? Are your doctors helpful? Do I need to insist on seeing specialists? How are your children now? Are they growing physically and developmentally? Have you decided to have more children? What is involved in the AOS studies? Which ones have you done?

I must be suffering from anxiety because the thought of not being able to help my son is killing me. I appreciate everyone's response, no matter how big or small. It makes me feel a little better knowing there is someone I can reach out to for advice. Thank-you so very much.

I am so glad that you found our forum! How exciting to have a new little one. How is he doing? Developing as expected? From the sounds of it he is doing great minus a few minor cosmetic abnormalities. AOS can have such a range from very minor complications to very serious life threatening conditions which does indeed make it very scary. Especially when it is sometimes hard to find a doctor who validates your concerns and is willing to take you seriously! I am so happy to see that you are having an ECHO done on his heart. I do think that is the most important thing even if all seems well. Most other abnormalities can be noticed but heart conditions, not always.

My son is 2 1/2 and doing great! He was born with an open ACC wound that took 8 1/2 months to close up and a closed ACC mark as well. He has a heart murmur that his cardiologist keeps a close eye on. He has small toes and some underdeveloped toe nails. He had some delays and started working with an early intervention program when he was one. He has his next eval next week and we expect him to be all caught up! He is our third child and the only one with AOS. We are expecting baby #4 soon who so far looks to be AOS free.

When my son was first born we did an ECHO on his heart, worked with a dermatologist with his open wound, had an MRI on his brain because his wound was taking so long to heal they were afraid there may be some more problems (we know now that his mottled skin is a sign of his poor ciruclation and so everything is slow to heal). I also have had 2 kidney ultrasounds for him (the first just because I was worried. They looked small but good. The second was to make sure they were not getting any smaller and were growing proportionally). I also took him in for an eye exam because of his vascular problems which also came out normal. He has had tubes put in after having chronic fluid in his ears for a year and adenoids taken out because of sleep apnea and many blood tests here and there and some random problems that haven't been very serious or necessarily linked to AOS. He is growing well, very small but so is his sister so we will see as he gets older whether it is AOS related or not. He does have very tiny and thick feet. But other than that he is a very normal 2 year old kid. At this point you would never see him as being different then kids his age which is great.

I think the most important thing is to trust your gut. Find a good doctor who you can trust and together make decisions about how to help your child. I think the ECHO is important. I think by way of any other tests and screenings, do what you feel you should. If you are concerned about something, look into it! AOS can pretty much affect anything (or so it seems) so sometimes it is more important to jump the gun then wait for things to get worse. What is normal for most kids can be more serious for AOS kids. For example, my son has a very common heart murmur that is very normal but because of the AOS the doctors are much more concerned about as it can cause more serious problems and may not clear up as quickly as expected with other children. Become familiar with differenet signs and symptoms and when you find something that troubles you, just follow your mommy gut and take him in.

We have participated in several AOS studies. They are very easy and just involved spitting in a tube and sending it back. I am very excited to here the results back from the study in Canada- I think they are on to something!

If you have any specific questions or need any advice just ask. We may not have all the answers but I feel like the best advice I have gotten has come from other families who have children with AOS so hopefully everyone can throw out their two cents too!

Oh thank-you so much for your reply! I am so happy to hear your son is doing well! He is adorable. And you're preggers – congratulations!

JC is doing well. His ACC healed quite quickly. I hope that is a good sign. At first it was flat, but now it's getting to be rough and bumpy. One of the bumps is a bit larger than the others. The Dr. that diagnosed his AOS also said he had a heart murmur, which is why they are doing the ECHO. On growth charts he is in the 90 to 95th percentile for height, a little lower for weight and his head is growing too (it was in the 50th percentile at birth). Hopefully he continues this curve.

You mentioned your son was working with an early intervention program. What was he behind in at one year of age? Was it more of a proactive decision? You also mentioned your son has vascular issues. What does that mean and what is likely to be affected? Do you have any information on symptoms or what to look out for?

One thing that has been bothering me lately, which I have mentioned to our family doctor (before the AOS diagnosis mind you), is that he is a really sleepy baby. Even in the hospital right after birth he had put himself on a 4 hour schedule. He was sleeping through the night at 2 months. And now at 5.5 months, he still can't stay awake for more than an hour and 45 minutes. I realize every baby is different, but I only have his older brother to compare to. He was a sleepy baby too, but not to this degree. What are your thoughts?

I have also read Shannon's blog about her son Isaiah. Has anyone been in touch with her recently? She sounds like a busy mom. I'm really interested in her son's surgery. The last she blogged, his hair was falling out She referred to Isaiah as having "AOS skin". Do you have any idea what she means? The reason I ask, is there have been a handful of times now where JC has woken up with a very small amount of dried blood where his ACC has healed. I thought maybe that he had scratched himself, but then it happened once or twice when he had a good cry. I've never been told how to care for his ACC, but I have started to put Vaseline on it after baths, which makes his hair greasy, thinking maybe it was just dry. Is AOS skin more delicate? How do you care for your son's ACC?

I am excited that you mentioned the study in Canada is onto something! When do you expect to hear something? Do you know if the study is still open?

Oh boy. I feel like a neurotic first-time mom. I'm worried about the littlest things. It's sort of funny, because with JC's older brother I was a very confident mom. I knew how to take care of him. If he falls, you put a band-aid on, bumps his head, you put ice on it. With JC, it just seems like he's made of glass. I'm worried about everything. It's a personality quirk I guess.

I appreciate your response. It's a bit of a relief to know that AOS can be managed with a little extra attention and TLC.

Sorry for the slow response...

My son will be three this year and his scar from his acc is still very bumpy. It is scar tissue which is not as strong as real skin so it does tear easily but it always heals quickly. He does have very dry skin but so do his sisters so I don't know that his skin in general is anything but normal (besides the ACC obviously).

When my son turned 1 I was a little concerned because he just barely started crawling. He seemed to be behind in fine and gross motor skills. In my opinion. When I took him in for his checkup I didn't mention anything but the doctor was concerned about his speech because he wasn't saying any words yet. That surprised me as I wasn't too worried about it but when they did the initial evaluation he had severe delays in both cognitive and express speech and only minor delays in fine and gross motor. He didn't walk until he was almost 20 months but that never worried them. Honestly I can't say his delays are a result of AOS. He had fluid in his ears for a whole year and failed hearing tests which could be why the delays. His ENT said the fluid in his ears could be a result of his poor circulation though so perhaps it is all related and maybe not.

When I mention his vascular issues... honestly I don't know what all that means other than he just doesn't have good blood flow. He has mottled skin and his wounds generally take longer to heal. That is another reason we did a follow up ultrasound on his kidneys- to make sure they were getting good blood flow and were growing.

Sleepy baby? What did your doctor say about that? When is your ECHO scheduled? It seems like whenever I go to the cardiologist they ask if he is sleepy a lot. It could be nothing however it could be more. Each kid is different so maybe your baby likes to sleep. It is great that you already have an ECHO scheduled so you can rule that out. And I will say they fact that your baby seems to be doing so well on the growth charts is a good sign. If he drops in growth- that is another concern.

I think Isaiah has some complications that are very unique to him. I will e-mail Shannon and tell her  you are on here looking for advice and let her answer you

I believe the study in Canada is still accepting samples. You can e-mail Dr. Patel and ask (mpatel@cw.bc.ca). I am not sure when they expect to get the results back.

Feel free to ask away. I know what it is like think you have all the answers and then have a child where you just don't know what to do for them. Like I said, follow your gut and get a good doc. Best of luck and keep us posted!

Thanks for the reply!

Sorry for the 100 questions....they just keep coming!

The scar tissue your little man has, is it weak everywhere, or just where the ACC is? So if the ACC was surgically removed would the skin of the new scar be weak as well? I guess that is a question for Shannon. I'm really interested in learning more about the surgery. I read somewhere that people with scalp ACC need to be concerned with skin cancer, so I'd rather be safe than sorry.

Mottled skin....I've seen pictures on the internet of deep red, purpley looking blotchy skin i guess you can say. Does it always present like that? Does it stay like that? Right after birth my son's leg would turn greyish, but I though I must be holding him awkwardly. I would adjust him and the colour would come back. I haven't noticed it in a while though. Does that sound like the same thing as mottled skin?

As for the ECHO, we still haven't heard back about an appointment yet. We're in Canada and everything seems to move in slow motion with our health care system. Wait times tend to be long when things are not considered urgent. There's a shortage of doctors in our area, so finding a new doc is not impossible, but can be very difficult. I'll stick with the one I have, but in the past things had a tendency to be swept under the rug. Now with JC, things might be different, but I think the best thing that I can do for us is learn as much as I can and be as prepared as I can be for whatever might come our way. Kacee said in another post that she likes things that are concrete, and I definately know where she is coming from. I like to have a plan, but if I don't know what I'm planning for....let's just say it's easier to have a plan!

I will be looking into the study with Dr. Patel later today. Thank-you so much.

May I ask you how you deal with people when they ask about your son? Do people ask about your son? I'm not sure what to tell people, because we live in a small town and I don't want JC being known as the (insert some nasty name here) kid. I don't know whether I should try to hide it, or whether I should be open and honest with people. Kids can be so nasty.

I hope everything is going well for you. Are you due soon? You must have your hands full! Take care and best wishes.