Motoher with concerns in South FL (long story)

illianasmommy · #1 06-17-2009, 02:09 AM

Okay long story .....
Illiana was born with a stark white patch on each side of her face right in front of both ears. By 2 weeks old they looked like a weird rash and the pedi assumed that she has allergic dermatitis like my ot her 2 daughters. (although to what since everything in my house is fragrance and dye free for 2 yrs now) tried hydrocortisone cream to no avail, except to agrivate it. Sent her to a dermatologist in the cow town that I live in (not a pediatric) very stupid doctor said it was dermatitis and to use precription hydrocortiosone cream. By this time I was angry and my mother who is an RN suggested that it may be a spread out hemangioma (smart woman). After another unsucssefully visit to the stupid derm. The pedi agreed to send me to Miami to see a pediatric dermo. God send. We saw the physcians assitant on June 2nd and see Dr. duarte herself on thursday the 18th (would have been last week but I was sick) Now we are in the process of a full work up for PHACES since she has beard distrbution. She has segmental hemangoiomas around each ear, and inside her cheek, the problem now is that in the last month they have invade her ear canals and spread to her tonsils. She is 7 months old all the info says it should be starting to slow down not spreading even faster than before. I am so scared.

nickbar · #2 06-17-2009, 03:37 AM

I know this is very scary. My son had a large segmental h. as well on the right side of his face and into his eye. You are doing the right thing... keep being your child's advocate. I am glad your seeing Dr. Duarte.

There are options to consider for treatment and controling the growth of this h.

A) Propranonol
B) Oral Steroids
C) Laser

Corinne

illianasmommy · #3 06-17-2009, 01:34 PM

to even try the propranonol I would have to take her to miami once a week per Dr Duarte's protocol for the med. I live 3 hrs away and am low income. there is absolutely no way i could do this. as for the steriods she is chunky enough as it is. Dr Duarte did mention laser treatment when she peaked in on the case when we saw the PA

illianasmommy · #4 06-20-2009, 10:01 PM

well Illiana saw Dr Duarte thursday, (sort of) they had resceduled me to an apt with the PA again instead of her so didn't get to ask all my questions. She was rushed over to the ENT dept for an Emergency visit since her Pedi had seen hemangiomas on her tonsils. Turns out they are on the back of her tongue, and none down to the point of her vocal cords and they are in both ear canals for sure. We well most likely have some laser treatment on her facial H's in July after all of her screening is done for PHACES. so now we just wait and get tests done.

CarrieChris · #5 06-22-2009, 03:24 AM

Hello there! I am so sorry that you are going through all of this! Your poor little baby! I just wanted to offer some suggestions to you. Since you said that you are low income I would just guess that your child may have or possibly be able to get Medicaid. If she does have it you should contact your case worker to find out their policy for medical transportation and transportation reimbursement. If it is a financial issue and also a transportation issue the department of public welfare does usually offer an assistance program to ensure that your child gets the medical care that she needs. I would call them to see what your options are.

Also, I have no experience with propranolol, but I have heard all good things about it's effectiveness. If it's the best option I would do whatever I had to do to make it happen.

My daughter was on steroids and she really didn't gain weight. She looked extremely chubby due to the moon face but she wasn't even on the growth curve for her weight. She is only now at 25% in her weight compared to all other 30 month old children. I would definitely not worry about her getting chunky. If the hemangiomas are near her airway they would be MUCH more of a problem than weight gain.

Best of luck to you. I hope things get situated soon!

Carrie, mom to Isabella

illianasmommy · #6 06-22-2009, 04:17 AM

i do have medicaid and can get medicaid transport, but my older 2 daughters have speech therapy and ocupational therapy and behavorial therapy. Only one of their therapists come to the house.
I just don't understand why they won't work with me since I live so far away and allow her pedi to do some of the monitoring and put her on the propranolol. It's not like it is a half hour drive I am complaing about. It is literally over three hours with traffice in a vehicle that doesn't have a/c in the middle of a south florida summer.

kaleigh71 · #7 07-02-2009, 03:02 AM

Hi! I, too, have taken my daughter to Miami to see Dr. Duarte. I am on the Space Coast, so almost 3 hours away as well. You need to explain the situation to Dr. Duarte herself. I found that after waiting in a treatment room for almost 2 hours (yeah, I was pretty patient I guess) that Dr. Duarte wants out-of-town patients to remind the staff that you are out-of-town. I can't say whether she would be able to work with you on the appointments, but I do know that she is very understanding of those who have to travel to see her, but SHE is the one that you need to speak with about it. Also, I do know that if you e-mail them, they print and keep them in the patient files, so instead of talking on the phone to the staff regarding appointments I always e-mail so that it is perfectly clear what I need, and the dr. or PA can see it in the file. Make it clear you want to see Dr. Duarte when you take her for her next appointment.

I wish you luck in your daughter's treatment. You are in good hands!

illianasmommy · #8 07-02-2009, 11:34 PM

[quote=kaleigh71;17044]Hi! I, too, have taken my daughter to Miami to see Dr. Duarte. I am on the Space Coast, so almost 3 hours away as well. You need to explain the situation to Dr. Duarte herself. I found that after waiting in a treatment room for almost 2 hours (yeah, I was pretty patient I guess) that Dr. Duarte wants out-of-town patients to remind the staff that you are out-of-town. I can't say whether she would be able to work with you on the appointments, but I do know that she is very understanding of those who have to travel to see her, but SHE is the one that you need to speak with about it. Also, I do know that if you e-mail them, they print and keep them in the patient files, so instead of talking on the phone to the staff regarding appointments I always e-mail so that it is perfectly clear what I need, and the dr. or PA can see it in the file. Make it clear you want to see Dr. Duarte when you take her for her next appointment.

I wish you luck in your daughter's treatment. You are in good hands![/QUOTE

I already had to call and make it clear that i was to see Dr duarte on our next visit which is the 16th. I have seen her briefly on each of my previous appts as well and she knows how far away I am. That is why she said she said that Illiana wasn't a candidate for propranolol ( I think) but I just met the cardiologist up here today and she is perfectly willing to monitor her weekly if that is what is takes and is calling Dr. Duarte to tell her that.
On the cardiologist visit front: Illiana does have a atrial septal defect and a murmur in her head which places her square in the diagnosis for PHACE syndrome. Just have to wait for official confirmation on the 16th of this month. I'll find out the results of her MRI and such then.