Dentist w/MPS experience

ericajth · **Posted:** Wed Feb 11, 2009 10:47 pm

I wanted to start this in a separate topic but related to the Dental topic that some of us posted on below.... Anyways I talked to Laurie at the Society and she gave me the name of the only Dentist they've had speak at any of the conferences
and he is from St.Louis. I am going to contact him to see if he could give me some info but I also found a couple articles on MPS and dental issues on pubmed for my Insur. stuff to try and get it covered under Medical.

Dr. Donald Huebner St. Louis Children's Hospital One Children's Place Suite
LS2 St. Louis, MO 63110

Misty Luthcke · **Posted:** Thu Feb 12, 2009 12:58 pm

Thank you Erica

Leslie · **Posted:** Thu Feb 12, 2009 3:11 pm

That's Kraiggy's dentist! He's a very nice guy.

A dentist at UNC spoke at the last family day meeting...he was excellent as well. One thing he did say, several times, is that dental issues are not that different for MPS patients than in the regular population--though there are some dental issues, clearly, they aren't that unique. I'll have to go through my notes from his lecture again, but if I remember correctly, most of the complications were due to kids fighting the toothbrush and that sort of thing, or having pain that they can't express. He said you find normal variations in enamel and that sort of thing. Of course, there are some structural issues with some kids, but that's not everyone!

I'd be interested to hear what you find.

ericajth · **Posted:** Thu Feb 12, 2009 6:11 pm

Leslie, the issues I have of course are not all MPS caused but the enamel loss is very evident both just from looking at my teeth especially where they have chipped (anestheshia w/the difficult intubation then adds to the problems) and from looking at the x-rays. I realize these are just an add in to increase normal teeth issues. The problem is that add all of these up and the sum is a big problem. I do take very good care of my teeth.
My insurance when I spoke to them they know the general background of my disorder and they thought the dental issues likeally would fall under medical bc of the huge enamel issues and the heart issues. So anyways...

Could you email me your notes as soon as possible??????? Or give me the name of the dentist that spoke at UNC??? Anyone who knows this dentists name please, please post I need to gather as much info as possible.

Leslie · **Posted:** Fri Feb 13, 2009 2:01 pm

Erica,

I'm actually at home at the moment, but I think I can run by campus and see if I can find my notes. If not, it might be Monday before I can get them.

Generally, my experience is that dental issues are not covered under medical insurance, but I can talk to my dad and see what he thinks, particularly about who would cover chipped teeth due to intubation issues. The problems with the heart are relatively common--there are a lot of patients with regurgitation that have to take premeds before dental appointments, and it just happens to be more important with MPS.

I'll see what I can find--hopefully I can stop by campus later this afternoon and let you know.

Laurie · **Posted:** Fri Feb 13, 2009 3:07 pm

Clay doesn't have to take pre-meds anymore. His cardiologist said they are not recommending it anymore.

ericajth · **Posted:** Sat Feb 14, 2009 5:11 am

My Cardiologist doesnt reccomend it either - the Am. Academny of Peds. and American heart Assoc. revised their look on this.

I did talk to my Insurance and the dental is covered by the same insurance as my medical and they seem to have atleast some cases where they put dental under medical coverage from what she was telling me and she thought this might be one of those cases but needs the x-rays, estimates, and any supporting info. Right now I have 2 articles from Pubmed on MPS I and dental issues in Hurler Scheie and Scheie cases and also the MPS management booklet, the Join the search booklet and the name of a dentist at UofMN whom spoke at a meeting I was at there 2 yrs ago, My NP their tracked the name down
so I a m going to email this person. Aksi cardiol. is writing a letter of support why it is still important to get dental work covered sooner than the new benefit year (july) and why it is a medical issue pre-meds not with stabdung, Figure the more I have the better info wise.

Thanks, Leslie.

ericajth · **Posted:** Sun Feb 15, 2009 4:35 pm

I forgot but then remembered late friday that 2 years ago at the MPS medical meeting in MN they had one of their dentists with MPS experience talk.. So I talked to a couple different people of mine that where there also and my Neuropsych dr at MN gave me her name. Dr. Soraya Beiraghi

Here are the articles I found also on pubmed but their where a ton more for anyone needing info just type in 'mucopolysaccharidoses, dental'.

http://www.ncbi.nlm.nih.gov/pubmed/2115 ... d_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/1760 ... d_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/2115 ... d_RVDocSum

Dani's Mom · **Posted:** Thu Mar 12, 2009 3:54 pm

Thanks for the name Erica. I was going to ask Kris when the time came for me to take Dani to get a check up.

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