Message Board

celexa

maria — Mon, 16 Nov 2009 14:30:30 GMT

Has anyone tried celexa? I am starting my son on it to reduce his droning and spinning.

Any links between Fragile X and TSC?

ashleybean1 — Mon, 05 Oct 2009 07:46:30 GMT

Hi, I have twelve-year-old son who has a genetic disease called Tuberous Sclerosis Complex. I just watched a program on PBS about Fragile X, and the similarities between the two are numerous. Many if not most children with TSC also have autism or autism spectrum disorders, learning disabilities, mental retardation, ADD and ADHD, language delays, etc. There are many differences, as well, though. TSC causes tumors to grow in body organs such as the brain, skin, lungs, kidneys, and heart. Over 80% of those with TSC also have a form of epilepsy.

I noticed that many people who have posted here have been diagnosed or have been recommended for testing based on their autistic symptoms. The autistic symptoms and seizures are also the reasons that lead to most TSC diagnoses. I just want to make people aware of this other disease that has similar characteristics, and I am curious if anyone knows if their is any link between these two genetic conditions.

Thanks!!

Forum: Fragile X Friends

food seekers?

allisondonner — Wed, 23 Sep 2009 18:07:01 GMT

does anyone else have a food seeking problem and possible solution for thier children with FX?

Forum: Behavior

Ontario

cj — Tue, 25 Aug 2009 14:52:00 GMT

Hi everyone...new to the website and wondering if anyone is from Ontario, Canada. I am feeling very frustrated with the lack of knowledge about fragile x amongst health care providers and the community at large. I feel like I am the only one in my situation...I know that isn't the truth but I am sure you know what I mean!

FYI - My son was dx with a full mutation in Feb/09 when I was 27 weeks pregnant. We recently found out that our 2nd son, born in May, does not have fragile x....thank god.

Anyway, would love to hear from people around my area.

Forum: Mothers Only

Cgg repeats

mjade — Mon, 24 Aug 2009 16:45:43 GMT

Hey Everyone,
I am 15 weeks pregnant and just found out that I have a premutation for FX and I have 71 cgg repeats. I am waiting to get my parents results today and I am getting an amnio next week to see if my baby has a full mutation. I met with 2 genetic counselors and they told me my baby has a 15% chance of having a full mutation. I know the odds are in my favor, but I am still very worried. Is there anyone else that has 71 cgg repeats or around that number and didn't have a child with a full mutation? I would really appreciate your responses.
Thanks!

Forum: Mothers Only

Cgg Repeats

mjade — Mon, 24 Aug 2009 16:42:27 GMT

Hey Everyone,
I am 15 weeks pregnant and just found out that I have a premutation for FX and I have 71 cgg repeats. I am waiting to get my parents results today and I am getting an amnio next week to see if my baby has a full mutation. I met with 2 genetic counselors and they told me my baby has a 15% chance of having a full mutation. I know the odds are in my favor, but I am still very worried. Is there anyone else that had 71 cgg repeats or around that number and didn't pass a full mutation? I would really appreciate your responses.
Thanks!

Forum: Miscellaneous and Other

MBBS In Ukraine

arks2108 — Sat, 22 Aug 2009 06:31:58 GMT

Hi,

Join the world recognized MBBS program in Ukraine.

You can now earn your MBBS degree at an expense less than 30% by doing it in one of the most reputed universities in Ukraine with world class accreditation.
50% Aggregate In Physics, Chemistry & Biology
30% Cheaper
World Class Standards
Medical University Listed With International Medical Education Directory (IMED).
Karabuts
Logovenko Street,
Mykolayiv
Ukraine - 16600
+380930484422

Forum: Education

school behavior

sherryr — Thur, 20 Aug 2009 19:02:02 GMT

my child acts out banging head on wall- hitting - breaking crayons screaming cussing throwing things at school when she is furstrated and cant do the work. she has only been diaginosed with fx since june. last year was was her second year in kindergarten she was given a iep when school was in its last month. this year they put her in first. 2 years a go we were told she had adhd odd and serperation anexity and was they thought bi poplar. we tried different meds then decided last year to pull all meds. they told me today when i went on the second trip of the day she was just being very mean I dont know what to do anymore i bring her home and she flips back in to a good mode. i gave the school literture on fragile x but since she is very smart they act like i made every thing up concerning her. she talks and acts like a grownup until she has her melt downs she cant retain math and she cant read or retain her abcs but since she looks normal they say she is just mean i dont know what to do any more

Forum: Behavior

Mark Bear video

Xerxes — Thur, 20 Aug 2009 14:36:02 GMT

Very educational & very, very encouraging ...

http://molbiotech.blogspot.com/2009/08/autistic-neuron-mark-bear.html

Forum: Research

potty training in toddlers...

melis — Mon, 17 Aug 2009 21:59:59 GMT

My son is 2 1/2, he does not show any signs of being ready to potty train. Do you think I would be pushing it if i just start training him? ie. maybe teaching him the sign for potty and bring him into the bathroom when i see him having a bm? or should i wait until he shows some signs of being ready? I just feel like if I wait on him he would be content to be in diapers forever!

Forum: Toileting

severity of fx?

melis — Sun, 16 Aug 2009 21:40:57 GMT

I have a 2 year old son with FX, we adopted him upon birth knowing he had the diagnoses. So, my question is, how would I know how severe he will be when he is older. I am frustrated because when he was born and the dr.s went over it with me, they told me to ignore the diagnoses like he was a 'normal' child because it effects everyone differently and he may show no signs of it all. Well, I have 2 other children and there has been a HUGE difference in his development and especially now that he is 2. He has alot of aggression and violence since he was around 1 years old. I was desperate for help and seen the dr.s then and they completely dismissed it. They told me to continue to ignore his FX and many children bang there head, hit and scream. But what I saw was very different then the tantrums my other 2 kids would throw as toddlers. Anyways, I know that boys only have one 'x', so does that mean he will automatically have the full mutation? If I know how many repeats he has, would that tell me what end of the spectrum he is at? ie. mild to severe? Am I crazy to be frustrated with the doctors for telling me he is fine, when we know he has FX? Any thoughts or info. would be greatly appreciated.

Forum: Mothers Only

I'm 2 #'s out of the gray zone. Don't know if I passed the gene onto my daughter

DznyLvr2005 — Fri, 07 Aug 2009 22:09:11 GMT

i just found this website and I've been reading thru all the posts.
A few years ago, I had 2 miscarriages in a row, so my doctor decided to do some genetic testing on me. To her and MY suprise, it came back that I am a carrier of fragile X gene. I'm literally 2 numbers out of the gray zone or 'safe' zone. I have a one year old girl and she looks and acts totally fine. The genetecist told me that there has NEVER been a documented case of someone with my #s having a child with the full mutation.
NO ONE in my family has fragile X and no one knows if they're a carrier and I dont even know what side of the family I could have gotten this from.
My concern is, if I get pregnant again and have a boy, there's more of a chance that if he got my gene, he'd show problems, whereas with a female, they still have a normal X to fall back on.
ughhhh... I'm just really thinking about this now because I want to be pregnant again next year. Anyone else have a very low # of the gene? What have your outcomes been?

Forum: Mothers Only

Fragile X on your PBS station

livingwithfragilex — Thur, 06 Aug 2009 22:58:37 GMT

List ofupcoming broadcasts

If your local public television station is not listed here, please call or write to their Audience Services department and encourage them to air "Living with Fragile X". We can provide contact information if you can't find it on the station's web site.

email us: info@livingwithfragilex.com

Thank you again! With your help, we hope to reach many more people and help educate them about fragile X syndrome.

All our best,

Kathy Elder and Greg Mishey
Producer/Directors
Living with Fragile X

Visit our website: http://www.livingwithfragilex.com

Forum: Miscellaneous and Other

4 mos pregnant and already diagnosed

catthgreat — Wed, 05 Aug 2009 15:46:39 GMT

I'm just over 4 months pregnant and was just informed that I'm having a girl, and that she unfortunately has Fragile X. All of the information I've been told and read about thus far is both informative and completely unhelpful at the same time. I'm hoping that some of you will share some of your stories with me as to how Fragile X has affected your little girls. Thank you so much ahead of time.

Forum: Mothers Only

New Fragile X study seeking participants

Fritz — Tue, 04 Aug 2009 16:03:54 GMT

I am writing to inform you of an ongoing Fragile X research study which is underway at Beth Israel Deaconess Medical Center in Boston, Massachusetts. Currently we are in the process of recruiting volunteers; if you or someone you know fits the criteria of eligibility and would be interested in participating in the study please contact us at the number below. Compensation is provided for your time as well as travel and accommodations. Contained below is more information. If you have already received an e-mail pertaining to this study, we apologize for the inconvenience. Thank you very much for your time and have a wonderful day!

Sincerely,

Fritz Ifert-Miller

fifert@bidmc.harvard.edu

Berenson Allen Center for Non-Invasive Brain Stimulation

(617) 667- 0256

Seeking Participants with a Diagnosis of Autism Spectrum Disorder or Fragile X Syndrome

Research at Beth Israel Deaconess Medical Center is investigating cortical plasticity in individuals with autism spectrum disorders and Fragile X syndrome using noninvasive transcranial magnetic stimulation.

Transcranial magnetic stimulation (TMS) is an experimental way to transiently activate specific brain areas through the scalp that has been used for the past 20 years in neurology and psychiatry. Safety guidelines have been developed that will be closely followed.

Study involves up to 7 visits.

Subjects will be asked to undergo a neurological exam, neuropsychological assessments, MRI, and TMS.

Study Eligibility: Subjects must be 15-65 years of age, diagnosed with autism spectrum disorders or Fragile X syndrome have no known history of neurofibromatosis or tuberous sclerosis, cerebral palsy, frank neurological damage, or significant dysmorphology.

Subjects will be compensated $60 per session for their participation.

If you are interested, or to learn more, please contact Lindsay Oberman at 617-667-5247 or loberman@bidmc.harvard.edu

Forum: Research