Update/ Sad news? Is this right?

[Tessamarie]

We just got back from our daughter's specialist appointment with a dermatologist in our area and we were told the following:

1. Due to the fact she has more than one facial H, with one looking compound, it is possible that she has internal H which are very serious
2. Her H will NOT fade on it's own until at least the age of 7, but most likely until the age of 9. She said it would NOT go away when she was 1 or 2 like we were hoping it might
3. Since steroid cream did not work, the only thing they can do now is refer us to Sick Kids Hospital where they can see if there are any other measures or just the wait and see approach
4. Her optic nerve could potentially be damaged because her H is above her eye and that needs to be looked into to make sure her vision is not impaired in any way.
5. If she bumps her head, we must put pressure on it and immediately take her to sick kids and get it seen. The derm. said that any bleed is a serious bleed and that it opens up the blood vessels and she can very quickly lose a lot of blood. She said we must be very cautious of her not bumping her head (we have been very careful but she is also learning to walk right now and it is almost impossible to avoid all bumps on the head or spills..but we will continue to be cautious)

Has anyone else been given this information? We are awaiting the call with the actual referral date.

[nickbar]

1) it is a common practice to have MRI to rule out internal h. if a child has more than 3 external. Internal lesions are rare, and though some can be serious..not all are, sometime just requiring close monitoring.
2) H. do all seem to respond differently and involution has a general pattern, but all cases are different even when two a very similar. Compound h. tend to be more stubborn in the involution phase and I agree it may never completely be gone...but there is a large spectrum of end results of involution.
3) How old is your baby? It is imporant to continue searching for medical care that fits your instincts on what is best for your baby. You'll receive many different perspectives on treating/not treating h. and how...but it is your baby and you need to be comfortable with the route.
4)I would highly recommend you seek the opinion of a pediatric ophthalmologist in person and as well email Dr. Aaron Fay from the ask the expert page with photos and details of your baby's lesions. If you have any trouble, let me know
5) It is nearly impossible to avoid all bumps. They happen especially at the early walking stages. The emergency physicians should be able to apply a clotting agent to stop the bleeding.

Corinne

[Tessamarie]

Corinne,

Thanks so much for your reply...She is 10.5 months old now. I do think that I was comfortable with not treating it at first but if they think that it really is not going to go away now (except by treatment) then I am wanting whatever treatment is right for her.
Thanks for the idea to email Dr.Aaron Fay!!!

[nickbar]

If the h. has stopped growing, no medical risks (including her eye)...then surgery or other treatment could wait. I know the "unknown" is the hardest part... if only we had a cyrstal ball with each hemangioma. There are pro and cons to any route. I would make a list of your pros vs. cons and see where you are leaning. Doubt is always going to be there, but don't let it consume you. No matter what you decide, you've done the best you can for your child. You've researched, you've asked questions, you have seen or talked with doctors. Trust yourself.

Corinne

[nickbar]

I should have added. One of the benefits to having treatment early is the child will not remember much if any of the steps taken to get rid of the h. This is not the only reason we treated my son early..more critical issues were there, but one of the benefits we realized later, he has no memory (only pictures) of all trips to the hospital, being put under g.a, waking up from g.a. healing...etc.