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Search: Posts Made By: spaatz1329
Forum: Help and Resources for Hemangiomas 05-03-2012, 11:42 AM
Replies: 11
Views: 1,072
Posted By spaatz1329
we have had issues with this off and on and tried...

we have had issues with this off and on and tried a variety of things. When ellie had her first admission for chemo a month ago they gave her sensi-care. Works like a charm. It is very thick and...
Forum: Help and Resources for Hemangiomas 05-01-2012, 11:31 PM
Replies: 15
Views: 16
Posted By spaatz1329
My daughter is using vincristine as part of her...

My daughter is using vincristine as part of her chemotherapy cocktail. It's shrunk her hemangioma so much we are weaning off the propranolol, but the side effects are intense!
Forum: Help and Resources for Hemangiomas 03-28-2012, 05:28 PM
Replies: 19
Views: 20
Posted By spaatz1329
My daughter has been on Propanolol for 8 months....

My daughter has been on Propanolol for 8 months. We have not seen any side effects and it has done wonders for her hemangioma. She will be on it into the summer, then hoping to wean off.
Forum: Help and Resources for Hemangiomas 03-04-2012, 01:38 PM
Replies: 21
Views: 22
Posted By spaatz1329
My daughter has PELVIS Syndrome and we really...

My daughter has PELVIS Syndrome and we really struggle to keep the hemangioma around her anus from tearing open. We have both metrogel and desonide to help and she takes miralax every day to keep her...
Forum: Help and Resources for Hemangiomas 12-01-2011, 11:32 AM
Replies: 12
Views: 13
Posted By spaatz1329
Sorry that you are going through all this! The...

Sorry that you are going through all this! The insurance struggles on top of it just make it worse! The hospital part stinks, but don't be afraid of using the med. It sounds scary, but most of the...
Forum: Help and Resources for Hemangiomas 11-29-2011, 01:40 PM
Replies: 12
Views: 13
Posted By spaatz1329
I hope your appointment went well! The thing...

I hope your appointment went well! The thing about these perineal hemagiomas is that they can be more complicated than they seem from the outside. My DD has had full body MRIs and ultrasounds and a...
Forum: Help and Resources for Hemangiomas 11-27-2011, 09:12 PM
Replies: 3
Views: 4
Posted By spaatz1329
It took about 8 weeks to really start to notice a...

It took about 8 weeks to really start to notice a difference, but then it really changed fast. Hang in there!
Forum: Help and Resources for Hemangiomas 11-13-2011, 10:30 PM
Replies: 15
Views: 16
Posted By spaatz1329
Send me a message if you need any more info. Good...

Send me a message if you need any more info. Good luck!
Forum: Help and Resources for Hemangiomas 11-10-2011, 11:29 PM
Replies: 15
Views: 16
Posted By spaatz1329
Dr. Turchin is an awesome Ped Derm. Dr. Haggstrom...

Dr. Turchin is an awesome Ped Derm. Dr. Haggstrom is a specialist in Hemangiomas.
Forum: Help and Resources for Hemangiomas 11-10-2011, 11:27 PM
Replies: 15
Views: 16
Posted By spaatz1329
If you are in Indianapolis you want to see Dr....

If you are in Indianapolis you want to see Dr. Anita Haggstrom and Dr. Kiersten Turchin with IU Health. They are the best Ped Derms in the city. We see them for my daughter's PELVIS syndrome. They...
Forum: Help and Resources for Hemangiomas 11-08-2011, 12:07 AM
Replies: 5
Views: 6
Posted By spaatz1329
Hi! My daughter has been on propranolol since...

Hi!
My daughter has been on propranolol since August. I have not ever noticed sleep disturbances, although my derm said it can cause night terrors!

Jamie
Forum: Help and Resources for Hemangiomas 09-16-2011, 11:55 AM
Replies: 9
Views: 10
Posted By spaatz1329
We also noticed a change right away, then...

We also noticed a change right away, then nothing. Then it started to regrow-turns out her dose needed to be adjusted for weight gain. It's a slow process I think! Hang in there!
Forum: Help and Resources for Hemangiomas 09-16-2011, 11:51 AM
Replies: 2
Views: 3
Posted By spaatz1329
It is very hard at first. There are so many...

It is very hard at first. There are so many questions! It doesn't really get easier, but at least you start to have answers and a plan. Find a good dermatologist, and come back here to read other...
Forum: Help and Resources for Hemangiomas 09-12-2011, 11:25 AM
Replies: 5
Views: 6
Posted By spaatz1329
Good luck! Hope it goes well!

Good luck! Hope it goes well!
Forum: Help and Resources for Hemangiomas 09-11-2011, 10:04 PM
Replies: 2
Views: 3
Posted By spaatz1329
She is four months on tuesday and has been on it...

She is four months on tuesday and has been on it since she was two months. She takes .8ml three times a day (but we will probably increase it this week at her derm appt because she has gained weight).
Forum: Help and Resources for Hemangiomas 09-11-2011, 10:02 PM
Replies: 2
Views: 3
Posted By spaatz1329
I was concerned as well. In addition to my...

I was concerned as well. In addition to my daughter's hemangioma she also has a tethered spinal cord and bladder exstrophy, so she will be having several surgeries and is also on amoxicillin...
Forum: CMTC 09-07-2011, 05:55 PM
Replies: 6
Views: 7
Posted By spaatz1329
My daughter has PELVIS syndrome, and a tethered...

My daughter has PELVIS syndrome, and a tethered cord is a symptom. It was confirmed by MRI. She is having surgery to release it Oct 21.
Forum: Help and Resources for Hemangiomas 08-29-2011, 07:13 PM
Replies: 5
Views: 6
Posted By spaatz1329
It has worked wonders for us. My daughter has a...

It has worked wonders for us. My daughter has a large perineal hemangioma (PELVIS sydrome) and the derm is very pleased with the results so far.
Forum: Help and Resources for Hemangiomas 07-27-2011, 12:30 PM
Replies: 4
Views: 5
Posted By spaatz1329
Both my Derm and my Ped want her to eat every 5...

Both my Derm and my Ped want her to eat every 5 hours, even at night. But maybe that will change as she gets older. I hope so!
Forum: Help and Resources for Hemangiomas 07-25-2011, 12:38 PM
Replies: 5
Views: 6
Posted By spaatz1329
We've been told to call the doctor if she's sick...

We've been told to call the doctor if she's sick and not eating, because the dose will cause the drop in blood sugar (which it sounds like is what happened to you). They would rather she miss the...
Forum: Help and Resources for Hemangiomas 07-19-2011, 05:14 PM
Replies: 4
Views: 5
Posted By spaatz1329
starting propalonol

Just as I thought, Derm started her on the meds today. She takes her first dose tomorrow morning (1/4 of her target dose) and has to go in for a BP check. Each time they up it she has to go in for a...
Forum: Help and Resources for Hemangiomas 07-19-2011, 01:26 AM
Replies: 2
Views: 3
Posted By spaatz1329
Thanks! This is really helpful information!

Thanks! This is really helpful information!
Forum: Help and Resources for Hemangiomas 07-18-2011, 03:58 PM
Replies: 6
Views: 7
Posted By spaatz1329
thank you! it is hard to have a diagnosis that is...

thank you! it is hard to have a diagnosis that is so rare. there are always a lot of unanswered questions!
Forum: Help and Resources for Hemangiomas 07-18-2011, 12:39 PM
Replies: 2
Views: 3
Posted By spaatz1329
Breastfeeding and Propalonal

Can you do it? Or do you need the measurable amount of formula to balance the hypoglycemia? My daughter is only 2mo and is not on solids yet. We aren't treating the H (which is on her diaper area)...
Forum: Help and Resources for Hemangiomas 07-18-2011, 12:38 PM
Replies: 28
Views: 29
Posted By spaatz1329
My daughter has PELVIS syndrome, which sounds...

My daughter has PELVIS syndrome, which sounds very similar. She has a hemangioma on her sacrum and genitalia, a tethered cord, and an exstrophic bladder. She is 2mo old. We are having spinal cord...
Showing results 1 to 25 of 27

 
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