Q and A Forum
Question from family moving into the area
Hello! I’m a proud mommy of three wonderful kids ages 4 yrs , 2 yrs and 6 months old. My youngest happen to have Down Syndrome we currently reside in Central Florida and are active members of their local chapter. Per my husband work we are asked to relocate to Greater Philadelphia area, he will work in Newtown Square PA when not travelling. We were told best areas to reside are North or West of NT square. Is that correct? Can someone share information on available resources for Down Syndrome in the Greater Philadelphia area. Trying...
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Looking for school recommendations in the area
I am a father of down syndrome girl of 4 years and 6 months. I am coming to Montgomery by the end of coming June. My aim is to put my little girl in good school for down syndrome . So whats the good school for her?
Many...
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Pre-school recommendation in Montco, Delco or Bucks county
I am looking for a reco on a good pre-school program with experience in making accomodations for 3 year old boy with DS, some physical disabilities, and limited expressive language. I am looking for full inclusion program that has experience with children that need some accomodation, but also open to considering a partial/reverse program.
I have heard about UCP (United Cerebral Palsy, chestnut hill – a reversed inclusion program 50:50), but have mixed reviews about it.
Can someone recommend a good place?
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Your experience with Hatboro-Horsham, Upper Dublin and Upper Moreland school districts?
This summer we will be moving closer to family..Horsham area..Would love to hear any good and or bad experiences you might have had with Hatboro-Horsham, Upper Dublin and Upper Moreland school districts.
Thanks
Casey...
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Dance Class Opportunity – Anyone Interested?
Hi! My name is Judy Maggi and I was looking for a dance class for my daughter, Isabelle, who is 8 (and has Down Syndrome). In my search I came across Jane Lopoten School of Dance (in Lansdale on Broad Street). I asked if she would consider welcoming a child with Down Syndrome into one of her classes. Jane invited Isabelle and me to observe a class. Not only did we observe, but Isabelle had a chance to participate. Isabelle loved it!
Jane offered something interesting to me and I wanted to share this idea with all of you. She...
read more
Question about toilet training
My son Aaron who is 8 yrs old is not yet potty trained. I’m sure this is a major topic of discussion and would like to visit it. I’m not sure what to do anymore. He has no concept that the feces is dirty. Gets it on hands, wipes walls with it and urinates anywhere in the house. He wears the pull ups but takes it off after soiling it. If a pull up is not on, then he just goes wherever he is at the time. Does anyone have suggestions and/or what is the average age for boys to be potty trained?
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Looking for information on tuition reimbursement
My son is turning three this summer and will be going to school in the fall. I heard there is a tuition reimbursement for children in school. Does anyone have any information on this? Are there requirements on the days the need to go?
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Can anyone recommend a good pediatric GI doc?
Hi All,
My daughter is 13-months-old and we’ve been dealing with reflux issues since almost day one. She takes a bottle of toddler formula (about 18-20 ounces a day) and has been taking some purees and solid food (though only usually a tablespoon or so per meal). We’ve been seen by GI at CHOP and she’s on medication, but she’s still really struggling. It’s a lot of work every day to get her to eat and often not very pleasant. I’m wondering if anyone knows of a GI doc who is particularly good. ...
read more
What to do for elevated TSH?
Our son’s bloodwork at his 2 year well check came back with an elevated thyroid stimulating hormone with normal thyroid hormone levels. He has an appointment with an endocrinologist in March. I’ve read that some physicians choose not to treat if only TSH is high, but I’ve also read that some recommend treating with thyroid hormone when TSH is high because there are cognitive and growth benefits. I’m not certain of the strength of such recommendations, so I’m wondering if anyone here has any experiences to share.
read more
Sleep apnea/sleep studies?
Abby is 7 and has never had a sleep study. She does not sleep well, and I think it might be time. What kind of doc would order this? Do I go through her primary care? She does have an appointment with her Allergist next week, so I could ask him as well.
Also, if you have had one for your child – where did you go and would you recommend it? My first instinct is to go to St. Christopher’s, but I’d love a recommendation!
Thanks
Megan
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Does anyone know a good pediatric dentist with experience treating children with DS?
Our son turns 2 next week, and we’d like to know if anyone has a pediatric dentist they like who has experience treating children with DS. We live in Harleysville and are hoping for something within a 15-20 minute radius.
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Question about Blue Cross rejecting speech therapy
Independence Blue Cross has rejected speech therapy services for our daughter again. We went through a second appeal process in the past where they approved them, but not sure how others are handling this. Thanks, Kavita
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What districts are good regarding inclusion in Montgomery County?
Hi, my family lives in Center City Philadelphia and we are likely making the inevitable move to the ‘burbs in a few years, before our daughter starts kindergarten. We would ideally like to live in a suburb that has some of what we love about the city; access to public transportation, a “main-street” we can walk to, etc. (Ambler or Conshohocken are examples of what we mean). I’m wondering if anyone with kids with DS live in these towns or ones like them and can tell us about inclusion in those districts. What is...
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Question about reimbursement for preschool
looking for cases won in MCIU paying for preschool?Please i know its hard but its now six months after Danas 3rd birthday and still no iep?
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Anyone interested in meeting once a month to discuss full inclusion in the Perkiomen Valley School District?
If yes, please contact me at kpmares@verizon.net. Thank you
My son is currently fully included at Schwenksville Elementary in second grade. I would be interested in sharing resources/experiences.
read more
Anyone interested in discussing your experiences with first year medical students August 30th at 2PM?
The genetics professor at Drexel Medical School invites parents of special needs kids (and sometimes the children themselves) to speak about the humans side of having a special needs child. The objective is to give them balance since their schooling is more the science and medical side of the picture. If you are able to make the appointment, a short power point presentation about your family and child would be all that is needed, and then there is a question and answer session for the parent panel. We did it last year and it was a...
read more
Looking for playdate in Flourtown for 3 1/2 year old
My son, Jesse is 3.5 years old. We live in the Flourtown area and would love to set up a play date for our son. Is anyone interested?
k.krauter@advancedlivingcommunities.org
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Does anyone want to share rides to Loose the Training Wheels on Aug 6 – 10 at St. Joe’s University?
Jenna attended this last year and was sucessful – but lost the skill – we feel one more week would probably help her achive this goal.
I am working but not far from St. joes – could do drop off or pick up – it would be impossible to do both. thanks – lizanne
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Looking for info about Uppermoreland district and surrounding areas
A family moving to the Hatboro/Abington/willow grove area needs recommendations for a good pediatrician in that area, who is familiar with DS.
They will be in Upper Moreland elementary in the fall and would like info on that district from other families.
Please share your experiences or relevant information.
read more
Question from family moving into the area
Hello! I’m a proud mommy of three wonderful kids ages 4 yrs , 2 yrs and 6 months old. My youngest happen to have Down Syndrome we currently reside in Central Florida and are active members of their local chapter. Per my husband work we are asked to relocate to Greater Philadelphia area, he will work in Newtown Square PA when not travelling. We were told best areas to reside are North or West of NT square. Is that correct? Can someone share information on available resources for Down Syndrome in the Greater Philadelphia area. Trying...
read moreLooking for school recommendations in the area
I am a father of down syndrome girl of 4 years and 6 months. I am coming to Montgomery by the end of coming June. My aim is to put my little girl in good school for down syndrome . So whats the good school for her? Many...
read morePre-school recommendation in Montco, Delco or Bucks county
I am looking for a reco on a good pre-school program with experience in making accomodations for 3 year old boy with DS, some physical disabilities, and limited expressive language. I am looking for full inclusion program that has experience with children that need some accomodation, but also open to considering a partial/reverse program. I have heard about UCP (United Cerebral Palsy, chestnut hill – a reversed inclusion program 50:50), but have mixed reviews about it. Can someone recommend a good place?
read moreYour experience with Hatboro-Horsham, Upper Dublin and Upper Moreland school districts?
This summer we will be moving closer to family..Horsham area..Would love to hear any good and or bad experiences you might have had with Hatboro-Horsham, Upper Dublin and Upper Moreland school districts. Thanks Casey...
read moreDance Class Opportunity – Anyone Interested?
Hi! My name is Judy Maggi and I was looking for a dance class for my daughter, Isabelle, who is 8 (and has Down Syndrome). In my search I came across Jane Lopoten School of Dance (in Lansdale on Broad Street). I asked if she would consider welcoming a child with Down Syndrome into one of her classes. Jane invited Isabelle and me to observe a class. Not only did we observe, but Isabelle had a chance to participate. Isabelle loved it! Jane offered something interesting to me and I wanted to share this idea with all of you. She...
read moreQuestion about toilet training
My son Aaron who is 8 yrs old is not yet potty trained. I’m sure this is a major topic of discussion and would like to visit it. I’m not sure what to do anymore. He has no concept that the feces is dirty. Gets it on hands, wipes walls with it and urinates anywhere in the house. He wears the pull ups but takes it off after soiling it. If a pull up is not on, then he just goes wherever he is at the time. Does anyone have suggestions and/or what is the average age for boys to be potty trained?
read moreLooking for information on tuition reimbursement
My son is turning three this summer and will be going to school in the fall. I heard there is a tuition reimbursement for children in school. Does anyone have any information on this? Are there requirements on the days the need to go?
read moreCan anyone recommend a good pediatric GI doc?
Hi All, My daughter is 13-months-old and we’ve been dealing with reflux issues since almost day one. She takes a bottle of toddler formula (about 18-20 ounces a day) and has been taking some purees and solid food (though only usually a tablespoon or so per meal). We’ve been seen by GI at CHOP and she’s on medication, but she’s still really struggling. It’s a lot of work every day to get her to eat and often not very pleasant. I’m wondering if anyone knows of a GI doc who is particularly good. ...
read moreWhat to do for elevated TSH?
Our son’s bloodwork at his 2 year well check came back with an elevated thyroid stimulating hormone with normal thyroid hormone levels. He has an appointment with an endocrinologist in March. I’ve read that some physicians choose not to treat if only TSH is high, but I’ve also read that some recommend treating with thyroid hormone when TSH is high because there are cognitive and growth benefits. I’m not certain of the strength of such recommendations, so I’m wondering if anyone here has any experiences to share.
read moreSleep apnea/sleep studies?
Abby is 7 and has never had a sleep study. She does not sleep well, and I think it might be time. What kind of doc would order this? Do I go through her primary care? She does have an appointment with her Allergist next week, so I could ask him as well. Also, if you have had one for your child – where did you go and would you recommend it? My first instinct is to go to St. Christopher’s, but I’d love a recommendation! Thanks Megan
read moreDoes anyone know a good pediatric dentist with experience treating children with DS?
Our son turns 2 next week, and we’d like to know if anyone has a pediatric dentist they like who has experience treating children with DS. We live in Harleysville and are hoping for something within a 15-20 minute radius.
read moreQuestion about Blue Cross rejecting speech therapy
Independence Blue Cross has rejected speech therapy services for our daughter again. We went through a second appeal process in the past where they approved them, but not sure how others are handling this. Thanks, Kavita
read moreWhat districts are good regarding inclusion in Montgomery County?
Hi, my family lives in Center City Philadelphia and we are likely making the inevitable move to the ‘burbs in a few years, before our daughter starts kindergarten. We would ideally like to live in a suburb that has some of what we love about the city; access to public transportation, a “main-street” we can walk to, etc. (Ambler or Conshohocken are examples of what we mean). I’m wondering if anyone with kids with DS live in these towns or ones like them and can tell us about inclusion in those districts. What is...
read moreQuestion about reimbursement for preschool
looking for cases won in MCIU paying for preschool?Please i know its hard but its now six months after Danas 3rd birthday and still no iep?
read moreAnyone interested in meeting once a month to discuss full inclusion in the Perkiomen Valley School District?
If yes, please contact me at kpmares@verizon.net. Thank you My son is currently fully included at Schwenksville Elementary in second grade. I would be interested in sharing resources/experiences.
read moreAnyone interested in discussing your experiences with first year medical students August 30th at 2PM?
The genetics professor at Drexel Medical School invites parents of special needs kids (and sometimes the children themselves) to speak about the humans side of having a special needs child. The objective is to give them balance since their schooling is more the science and medical side of the picture. If you are able to make the appointment, a short power point presentation about your family and child would be all that is needed, and then there is a question and answer session for the parent panel. We did it last year and it was a...
read moreLooking for playdate in Flourtown for 3 1/2 year old
My son, Jesse is 3.5 years old. We live in the Flourtown area and would love to set up a play date for our son. Is anyone interested? k.krauter@advancedlivingcommunities.org
read moreDoes anyone want to share rides to Loose the Training Wheels on Aug 6 – 10 at St. Joe’s University?
Jenna attended this last year and was sucessful – but lost the skill – we feel one more week would probably help her achive this goal. I am working but not far from St. joes – could do drop off or pick up – it would be impossible to do both. thanks – lizanne
read moreLooking for info about Uppermoreland district and surrounding areas
A family moving to the Hatboro/Abington/willow grove area needs recommendations for a good pediatrician in that area, who is familiar with DS. They will be in Upper Moreland elementary in the fall and would like info on that district from other families. Please share your experiences or relevant information.
read more