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Old 07-21-2005, 02:53 PM
Trents grammie
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Default HELP! I need advice ASAP!

???I have a 4 year-old grandson with pws on the right side of his face. It starts above the eyebrow and goes down half of the nose to the upper lip, across the top of the lip and then extends a little more down the cheek, then goes back up to connect above the eyebrow. His eyes were checked when he was a few days old, but not since. We took him to the Cleveland Clinic when he was 3 months old and they wanted to start laser tx right away but my daughter was worried about the g.a. and also the cost so nothing has been done. They were going to do an MRI before any treatments but since we didn't schedule any, that has not been done either. He does not show any signs of sws, but then again, what do I know!? Also, at that time we were not told of the things that I am learning on this site and the forum. The reason I am writing is that Trent has been having alot of trouble with his teeth, his molars have huge cavities from to much sugar and not brushing properly, but what started my research is the fact that his top front teeth are rotten to the point of being almost gone. I had wondered if it was due to his pws and just found out that he does have a spot on his gums and the roof of his mouth. He is scheduled to go to a dental school to have his bad teeth extracted Aug. 8th and I'm wondering if we should have someone evalute his pws, have an MRI, etc. Also, I don't know if this has anything to do with his pws or not, but he complains of leg pain on the side opposite his pws. Any advice would be greatly appreciated. By the way, we are in Ohio and am wondering which dr. to take him to.
Thanks again,
Susan (Trent's grammie)
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Old 07-21-2005, 03:50 PM
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Default Re: HELP! I need advice ASAP!

Susan - I don't have experience with PWS's - my son has a nasal tip hemangioma, but I do live take my son to the Cleveland Clinic to see numerous specialists. He's had 2 MRI's so far, the last one being last week. Email me if you'd like to discuss the procedure. They really do have a good system worked out for pediatric cases.

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Old 07-21-2005, 04:43 PM
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Default Re: HELP! I need advice ASAP!

Hi. I would let the dental school know about his pws in his mouth. If it is the area of the bad teeth that are being extracted then you are going to have more blood flow. The PWS can cause the teeth to be weaker and larger. My son's mouth is covered in pws. I take him to the dentist about every 4 months for a check up and cleaning. You may really consider getting the MRI done also. Austin has had 8 or more MRI's now and has done fine with all of them.

Now about the eye. He needs to go to the eye doctor for a glaucoma check. Rule of tumb is that if the PWS is near or covers the eye that you get several eye check ups during the first 2 years of life and then depending on the child maybe once or twice a year for the rest of there life.

About the leg pain, I would suggest you find a ped neurologist that has experience with vascular issues and get him checked out. If you have more questions feel free to ask.

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Old 07-21-2005, 06:54 PM
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Default Re: HELP! I need advice ASAP!

Hi Susan.
Jinny gave you wonderful advice.
It is soooo important to get to an eye doctor asap and have his eye checked. When the PWS in on or near the eye, the risk for developing Glaucoma is life long, not just at birth. If you are not born with Glaucoma, it does NOT mean that you will never develop it.
You also need to tell the Dentist BEFORE they attepmt any tooth extraction about the pws involvement with his gums. He may bleed a lot more than the Dentist would expect. They need to be aware and prepared for that.
Generally speaking, when a child is born with a PWS in that areas that you mentioned your grandson has-T1, T2, T3- they are initially referred to an eye doctor, a neurologist and a Vascualar ABnormalities Specialist. SOme people see a Pediatric Dermatoligist first- a skin doctor -who then usually refers them to a PWS specialist.
I would definately set up doctors appoitments with all the necessary doctors to see what the next step would be so you can help your grandson.
Please keep us posted. If you have any other questions, please ask.
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Old 07-21-2005, 07:14 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: HELP! I need advice ASAP!

Hi Susan,

I am Hank 23 with facial PWS/SWS.

I agree with Jinny and Elena. Your grandson needs to have his eyes checked often. I have SWS but not glacouma, but I always will have the risk.

I suggest going to the clinic where you have already gone to and get a MRI with and with out contrast. This will be able to tell if he has SWS. The Dentist will want to know this before surgery. I have had a lot of dental surgery and I have PWS on the whole right top side of my mouth.
Bleeding will be their number one concern.
If you want to learn more about it email me or go to my website they are both in my profile.

I strongly suggest talking to your daugther into getting control of his conditons now so it will not cause more problems in the future

If you have any more questions please ask we are here for you.

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Old 07-22-2005, 12:43 AM
Trents grammie
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Default Re: HELP! I need advice ASAP!

Thank-you so much, Sarah, Jinny, Elena, and Hank for all of your advice. I will certainly relay all of this info to my daughter and son-in-law. They have really had their share of troubles the last few years, the most recent was my daughter needing to have a beneign brain tumor removed last August. She is fine now so it's time to concentrate on getting Trent taken care of. Like I said before, we didn't know all of this when he was born, he was only refered to a ped. derm. at the time and there we were told that that side of his face could get larger and the skin could become thicker. I have learned so much more from all of you and now see the importance of getting in control of the situation.

I will let you all know of any developments. Hank, I have been to your web-site and found it most enlightening. I wish you all the best and God bless each one of you.

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Old 07-22-2005, 06:55 AM
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Default Re: HELP! I need advice ASAP!

Hi Susan.
I am so happy that your daughter has recuperated so well after her surgery.
Believe me when I tell you, you and your family are not the first and I am sorry to say, not the last-family that has recieved incorrect,outdated info about PWS or SWS.So little is known and not that many doctors have even seen a pws in their career. Or had a patient with SWS.
Hang in there. All you can do is the best you can, with what you are given.
Keep in touch..... What a wonderful Grandma you are trying to help your Grandson......
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Old 07-23-2005, 01:53 AM
Trents grammie
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Default Re: HELP! I need advice ASAP!

Hi Elena,

Thank-you for your kind words. I printed out the responces I received from this post and gave them to my daughter along with some of the information found on this site. She is also grateful for all the helping hands extended our way. We will be discussing options over the weekend and I'm sure she will start making phone calls on Monday. I know we at least need to get the MRI soon and also get his eyes checked. Will let you all know.

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Old 07-25-2005, 06:39 PM
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Default Re: HELP! I need advice ASAP!

I have a six year old daughter who has a port wine stain on her face that sounds very similar to your grandsons. She was diagnosed with SWS at birth. Although you have not seen any alarming signs of SWS, it is important that a child with a PWS have an MRI and a PET scan. An MRI will show the doctor the anatomy of the brain which will tell if the child has nuerological abnormalities that go along with SWS. PWS, seizures, and glaucoma are not the only symptoms associated with SWS, and every case is different. Anyone with a PWS should be checked for SWS. The Sturge-Weber Foundation has been an amazing tool for our family dealing with this syndrome. I would advise you to contact the people at SWF ( They can direct you to doctors in your area that have successfully dealt with PWS and SWS patients. Please don't be afraid to ask them for help. They treat you like your are part of their family, and they will do just about anything to get your grandson the help he needs.
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Old 07-25-2005, 08:25 PM
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swsc swsc is offline
Join Date: Feb 2004
Posts: 81
Default Re: HELP! I need advice ASAP!


I too have a grandson with PWS (and he also has SWS).

Please know that the VBF has a branch for Sturge-Weber syndrome, the Sturge-Weber Syndrome Community ( of which Jinny, Elena, and I are all volunteers. You can find Hank's journal on our website, too, about his recent surgeries with Dr. Waner. We also have a new website/group in Canada.

We would be happy to help you in any way we can. I think Elena and Jinny have already contacted you and given you wonderful advice. If you haven't already, please join in our Discussion Board on the website, and the private SWSC support group at MSN groups

If you need advice from a doctor, look to the left side of this page - Ask the SWS Expert, Dr. Anne Comi and she can offer more technical advice.

You can also contact me directly at

I hope things are going well for your daughter. Please keep us posted on how both she and your grandson are doing.

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