AOSupport

Hi everyone.  I am wondering if anyone can help with some specific advice on how you treated/or are treating your little ones cuits aplasia. Sophia's acc (it is on the top and centre of her head) was reasonably small, (compared to her fathers), about 3/4 of a playing card. She is now 11 months old and we have it down to two small wounds the largest being about the size of your pinky fingernail.

From the beginning all that we have put on it is pure paraffin, to keep the wound moist...no dressing , as she has no good surrounding skin that would cope with anything being stuck to it. We did try, very early on, a dressing infused with paraffin just sitting there on top of the wound and not held in place by anything. But of course as she moved her head in her sleep it would just rub off, often doing more damage to the fragile skin around the wound.

Our problem is that now she is frequently getting her hands up there and re-injuring herself, before we can stop her. At night we have her in mittens  and wrap her up tight in a muslin wrap. We have also had to take her out of her cot and sleep her on the floor as she was doing so much damage even on the soft bumpers. She sleeps on a thin piece of foam  which i have surrounded with little bells...so i know when she is on the move :). When she bumps or injures herself she bleeds profusely, so i am desperate to provide some better protection for the wound. We have exhausted all our options for advice from health proffessionals ( including well qualified burns specialists, dermatologists etc). If you are willing to share I would love to hear how you all have dealt with this ..... many thanks sheree

We have the same problem here.

Here wound was closed when she was +/-8 months but last month it did open again and I think she did it to herself. But i also heard from other parents that it depends on the weather, in the summer it will close and in the Autumn and winter It will open again.

Luckily it doesn’t bleed. Its just a red spot.

I couldn't figure out how to upload pictures to this post so I added a picture to Kyle's story that you can see of him sleeping.

Our pediatric dermatologist was very familiar with ACC and had written an article in a medical journal in reference to it so I trusted her completely on the subject. She gave us some antibacterial ointment to put on the wound every day and we covered it with a dressing called duaderm, which had the resemblence of oily synthetic skin. It is often used for burns and such, we even had an ER doc who questioned why we would be using it as he has never seen it used this way (I am sure he has never seen a baby born without skin before either).  I was always impressed with the duaderm, it did a really good job. There was only one medical supply store in our area that carried it and depending on how large the wound is it can be very expensive, but you can cut it to size. You have to change the dressing daily and I liked it because it wasn'y sticky and wouldn't pull on the surrounding hair and fragile skin. Some how it just stuck. I was afraid at first to take it off because I thought it would hurt him but it didn't at all. He actually had a huge scab at first and it just saturated the scab so that when I changed the dressing, the scab slib right off and didn't even hurt. I couldn't believe it.

When the bleeding became a serious problem we had to do something so you can see in the picture of him sleeping that we first wrapped up his head with a gauze wrap, and then held everything in place with that crazy tape. I am not sure what it is called, but it isn't sticky, it just sticks to itself and is stretchy. You can find it at any pharmacy. That helped keep pressure on the wound so it wouldn't bleed which was important since he had an exposed artery. As he got older and the wound became smaller and bleeding was less of an issue we continued wrapping it at night while he slept to keep him from rubbing or pulling at it.

This won't help much at Sophia's age but when Kyle was little we tied two towels together to make him sleep on hisside so he didn't rub his head. Eventually a friend of mine saw that they sold a wedge like thing similiar to our homemade contraption and bought one for Kyle.

I think that last tiny bit took the longest to heal. It would often get worse before it got better and stayed about the size of a penny or smaller FOREVER. Finally it all healed though, but we always kept it covered up and the dermatologist told us to never let it dry out (even though our first pediatrician told us to).

I sure hope it heals soon!

Hi everybody. I'm new to the forum. As I wrote in the "About me" section, my 8-month son has ACC -but no AOS- and we're still dressing his wound. Since he was born he's wearing cotton bonnets with strings under his chin to hold the dressing in place.  At the moment this is how we dress it: we cleanse the wound every day with physiological solution, then apply a dressing infused with tricum vulgaris and cover it with sterile gauzes. On top of it all we put the bonnet. So far, it has worked even if he often tries to scratch his head, of course.

In hospital we were also given special wrist straps that you can tie to the crib bars to immobilize the baby during sleep (http://www.coremec.it/Linea-specialistici---Comfort_3/Ausili%20di%20contenzione_16/Attacchi-per-arti-con-velcro---pediatrici_26.asp) but we haven't used them... he's already prisoner of his bonnet 24/7. I really hope we can share other experiences.

Welcome Sara. I am glad you found us. Although Kyle does have AOS so far his biggest challenge has just been the ACC- we know how stressful that can be. Your little one was born with quite a large scalp defect. Kyle's was about 8x4 so not nearly as large but it still took 8 months to heal. How big is it now? There are several others here who have skull defects as well so if you ever have any questions there are lots of listening ears.

I can see why you never used those wrist straps. Poor babies. I can't imagine they would get much sleep when everytime they try to move they can't, especially as they get older. That is a good idea to use the bonnet. We tried hats but they always came off, I never thought to get one that ties under the chin.

This has been a 5 year long struggle for us too.  Depending on the situation we've done gauze wraps, tube guaze, cotton hats, etc.  I've had hats knitted and sewn for him from cotton and wool.  We've done helmets with stratigically placed padding, a quilted helmet, and just ointment with no covering several times a day.  Even though the original scar tissue is gone, he does still have about 16 inches of scars on his head, and it's still fragile.  I have a feeling this will be a life long issue, but hopefully some day he'll realize he can't scratch and dig at the scars. 

Thanks! Now Ariele's scalp defect is approx 7x1 cm and is located horizontally in the vertex area. Three weeks ago it was much smaller (only a scab the size of a fingernail) and the plastic surgeon who is following him suggested using another ointment (a very mild one, boric vaseline) to allow the scab to fall more quickly. Unfortunately, we found out he is allergic to it and part of the wound reopened. Now we're trying to make up for it and are using triticum vulgaris once again.

I hope I have time to write a proper introduction one of these days to explain Ariele's case.

Hello Everyone:  Only here could you find a plethera of information on how to cover a head wound that won't stop bleeding!  It is the biggest problem for us too.  Gabe now has a skin graft about the size of a deck of cards up there and it's just not healing.  We put vaseline soaked wraps over it.  We used to get them from our medical supply place and I'm blanking on name.  The ones from the supply center were yellow and had a medical term, but I've just found the same thing at CVS.  Just look for vaseline covered bandages.  We then cover it with a thick gauze pad, but still have trouble taping it down.  When he was an infant, we used to wrap his head in gauze pretty tight and tape it.  For some reason he never pulled it off.  Hope that helps. 

Jenn

Thankyou everyone. We are currently fighting our way through yet another infection using SSD cream daily. So once thats under control I'm thinking I'll give the duaderm a go as I am familiar with that name and know i can source it here. Our summer is just starting here on the east coast of Australia and at present I still can't even put a hat on Sophi, so I am really grateful for all the idea's you've shared....I'll let you know if i have any success. Thanks again, sheree

Hi again. Unfortunately,my son's wound keeps on reopening in some spots, especially near the hairline. Every time skin seems to be healing well, then fibrin comes out again in the shape of yellowish surface. When I remove it, bright red tissue is exposed once again . Last week we went to see the dermatologist as the ulcerated part became quite large this time. She suggested that we use a different type of dressing. So far, we’ve been applying gauzes imbued with Triticum vulgare extract. Now we’re trying Aquacel, a  hydrofiber dressing. It is made of hydrocolloid fibers but, unlike Duoderm, it doesn’t stick to the skin and, by coming into contact with the wound, it should become sort of “jelly”. The dressing should be changed every other day, but it can stay even longer when the wound becomes drier. Today we changed the first dressing. The wound was quite clean, as the pad absorbed the exudate. There was a problem, though: the fiber failed to adher to some parts of the sore. We’ll see what happens next time… I read some of you used/was going to use Duoderm. Has any of you used this kind of dressing as well? Do you have any suggestions?Thanks!

Sara

I have not used that kind of dressing before. It seems like this is a common problem, where the wound gets better only to reopen again. We had this problem for a long time before it finally completely healed. But it is finally healed (hooray!). We also had the same problem with the yellowish stuff on the wound. The dermatologist told us it wasn't healthy and kept the wound from healing. The duaderm normally cleans that out and keeps the wound red and 'healthy' looking but for some reason it didn't work that way with Kyle. We always had that yellow gunk and were never able to get rid of it. I hope this new dressing works for you!

21st January update

I'm a bit frightened even to write it... but the new dressing has worked VERY well and the wound has almost healed! There are only 4 small sores left near the hairline. Now our next, big challenge is to see whether the newly formed skin is going to resist without ulcerating again.

I'll keep my fingers crossed for you! I hope it STAYS closed this time!!!

We have found that Collin gets ulcers much more frequently if his scalp is exposed to sun. Even if it's a cloudy day, if he's out he tends to get ulceration. We have invested in several SPF hats and though he isn't a fan of wearing hats all the time, we force the issue. His ulcers are usually smaller now, but he still gets them frequently and we just put on anti-bacterial ointment and dressings.

We were having difficulty b/c he was scratching them at night when he was under 1, so have cotton hats with straps around the chin which he also hated wearing, but helped.

Hang in there!

Becca

Hi can someone please explain why they get head ulcers, and what to look for, the only ulcer i know is in your mouth, and im not sure what there look like but they hurt!!, thanks, think we will be on the ulcer path, seems the way forward... hope your all well, we found different dressings suited different stages, we are using duoderm. We was told the gunk(yellow) was sluff, basically new skin, but somtimes when it smells a bit, and seems gunkier its infection,theres a fine line,i beleave,between the two.x

Funny, we were told the yellow gunk was impeding healing (though not infection) and the doctor always tried to clean it all off. Perhaps we had different yellow gunk.

As far as ulcers...? I am sure someone else can give a better answer. I have read they are common though not neccessarily just on the scalp. I believe it has to do with poor circulation/slow healing. Personally we have not had to deal with this problem. After his ACC healed we have not had any other ulcer type issues, just slow to heal sores and what not. We also didn't have to do a helmet either though.

I would agree with your concern though that the friction from the helmet may cause such problems. I am not sure how you can avoid them if it does cause problems. Perhaps not wearing it 24/7 and allowing breaks if that is possible and also making sure there is good protection between the helmet and the skin- something soft but something that can't move back and forth to irritate the skin (I'm thinking along the lines of blisters on your feet- loose socks that can move a lot will be irritating but something soft and tight fiting offers more protection). Sorry this is probably not at all helpful just thought I would throw it out there.

By the way, it the helmet for skull defect? I assume so? Any plans for surgery on that or what is the latest? Good luck as always!

hi all. in reply to kys mum, yes surgery is going to happen, once the skull has fully grown. They will then ct scan again to see what need patching up!.. just controling infection still at the mo, its healing really slowly now..i think it hurts her also, but shes happy ,general. i do personally agree the gunk isnt good, to be honest i see so many various doctors, that all have different opinions on the healing process,and dressing. im just thankfull for this site, as ive got many tips from here,. i spoke to someone else on fb today, i'll give her site details i dont think shes joined here. there must me some lonly familys out there,thats a horrid time. thanks all for being here, hope your all well xx