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Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

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  #21  
Old 01-05-2011, 02:47 AM
smurph smurph is offline
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Yeah, I agree with Missy....originally we had to wait about a month for our first appt. with our specialist. But when my daughter developed an ulceration, I called and they told us to come in that very day! So hopefully you will be able to get something much sooner! Poor baby! What's up with all the g/g twins with hemangiomas!!! Man! We are having a convention here!!!

Shannon
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  #22  
Old 01-05-2011, 02:20 PM
KsMOM KsMOM is offline
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gilana- I am in a similar boat right now. My daughter's hairline Hemangioma started to ulcerate about month ago and last week at one of her doctor's appointments a small bit of the scab came off and it bled a tiny bit. My ped and her neonatologists (she's a preemie, so we have lots of different docs) both said it was involuting and said not to do anything about it unless it becomes an issue. Her Ped did refer us to a pediatric derm just so that we have another opinion. Hers is about the size of a quarter above her left eye on the hairline and is quite raised.
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  #23  
Old 01-05-2011, 02:22 PM
KsMOM KsMOM is offline
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Quote:
Originally Posted by gilana View Post
thanks guys! yes missy, we are using a prescription formula called elecare that has everything broken down to the individual amino acids.. it costs us about $60/day for the two kids.. it is out of control...
My daughter's on Elecare too! The stuff is crazy expensive...I can't imagine having to get it for two babies!!
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  #24  
Old 01-06-2011, 01:00 AM
gilana gilana is offline
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ksmom- yeah not sure what to do... now everytime she goes down for a nap or bed we put a bandaid over it.. or several bc she rubs her forehead like crazy n the crib

and the formula is def burning a hole in our pockets
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  #25  
Old 01-06-2011, 10:48 AM
missy missy is offline
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Get back in touch when things calm down a little and they are weaned. Because my kids are gluten, dairy, and soy free, I have a TON of recipes and product recommendations if you need help after they start eating food.

Heck, I can make mac and cheese with no mac and no cheese!! And it's delicious!

Missy

PS... the product name I was trying to remember was Neocate. Would Neocate be less expensive and appropriate for your daughters?
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  #26  
Old 01-07-2011, 12:02 AM
gilana gilana is offline
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missy.. neocate and elecare are the same thing.. just different brand... i would love any recipes you have!! what did you feed them at this stage? (9 months?)
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  #27  
Old 01-07-2011, 11:27 AM
missy missy is offline
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LOL We fed them chicken nuggets and pizza!! We didn't know at that stage. We actually only changed their diets because gluten free and dairy free is sometimes helpful for kids with autism (the younger child is autistic). It was only after we saw how helpful it was that we began investigating and found that both children had real problems with it.

Most parents on this diet that are at your stage, though, use rice cereal and puree their own fruits and veggies. You really have to be vigilant about reading labels ... I've found whey as an ingredient in canned chicken broth and applesauce!!

When they're ready for cheese, try this: http://www.daiyafoods.com/ It is, without a doubt the best non dairy cheese.

Missy
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  #28  
Old 01-07-2011, 03:34 PM
blessedmom10 blessedmom10 is offline
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We are dairy free also with my 3 yr old. It's been hard but I have learn how to cope better. ALWAYS looking for resources for food. Cant imagine paying for formula at that price. I breastfeed and just changed my diet (great wt loss plan . Now doing dairy, egg, nut and some soy free to see if it will help DS. He is not sleeping and has trouble nursing (seems uncomfortable-even on prevacid). I dont know if its food or meds (propananol) or airway hemangioma causing his problem (see my post).

Glad to hear your stories. God bless you with twins, I am just surviving one at a time, LOL.

BlessedMom10
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  #29  
Old 01-08-2011, 08:25 AM
gilana gilana is offline
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missy thanks for the tip on daiya i have never seen a soy free non dairy cheese before.. awesome!

blessed mom-- have u seen a pediatric GI?
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  #30  
Old 01-08-2011, 10:45 AM
blessedmom10 blessedmom10 is offline
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I have seen a pedi gi with my dd, but not with my ds. My pedi has started him on the prevacid and it helped. He is eating better and less green poop, but now he doesn't sleep. Up about every 1-2 hours tonight (and for about the last month) fussy and I have to rock/pat him back to sleep--during that time he wiggles/twist then passes gas over and over. I even gave him Tylenol tonight just in case it was teething-no luck. Guess I will try the total elimination diet to see if that helps (hate that, it is very hard).

Thanks about the cheese tip, we has used the Galaxy Vegan slices, but will look for that brand to try.

Blessed Mom 10
DS 7/29/10
Subglottic, lower lip, lower inner gumline, tongue, and parotid gland hemangioma
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