Fragile X Syndrome Member Introductions


#61

MY NAME IS LORNA KANA, I HAVE QUESTIONS ABOUT MY 6 YR OLD GRANDSON. HE IS JUST LEARNING TO SPEAK PLAINLY, MY DUAGHTER INTERPRETS FOR HIM. HE HAS HAD 2 YRS OF SPECIAL ED. AND IS SPEAKING MUCH BETTER BUT TO ME DOESENT FEEL THE NEED TO COMMUNICATE TO OTHERS. HE IS VERY SOCIAL AND LOVABLE. ALITTLE HYPER, GETS ALONG WELL WITH OTHERS HIS AGE IN FACT BEFORE HE WENT TO SPECIAL ED HIS CLASSMATES WOULD SPEAK FOR HIM THEY LOVED HIM. HE HAS STARTED FIRES, ONE BURNED HIS MOTHER SEVERELY SHE HAS SCARS THAT BOTHER HIM TREMENDOUSLY, BUT WE STILL HAVE TO TAKE LIGHTERS AND SUCH AWAY FROM OCASUALLY. HE IS VERY ATHLETIC AND ABOVE AVERAGE IN PHYSICAL SKILL WHICH STUMPS HIS TEACHERS. RODE A 2 WHEELER AT 2 YRS. IS AUTISM IN THE PICTURE? MY DUAGHTER HAS NO INS. SO HE HASNT BEEN DIAOGNOSED. SINCERELY L KANA


#62

My name is Yuriana and I have a boy (fragile X) named Sebastian, 6 years old and I would to know what therapy other parents are doing;

Thanks


#63

My grandsons both have fragile X. I want to show my support for my daughter and her family


#64

Hi I have a child who is 7 years old and was recently diagnosed with fragile x. I would just like some advice from others and learn more about fragile x.


#65

Hi, my name is Samala. So I have been trying to do some research on some of my 3 1/2 year old boy behaviors and stumbled across this syndrome. He has the large ears, a big head, and his conversation with us is difficult but, is improving slowly. I think he is actually quite smart. He loves us to read to him and he loves to act out movies but, as far as just chatting he is hard to understand and he refers to himself in the third person “Noah wants to do it”. I try to teach him to say"I want to do it" which he will repeat but, soon after he uses his name again. Right now I think he talks like a 2 year old.
SO I guess my question is does he sound like a candidate for this syndrome and what is his life going to be like with it. Will he ever live an independent life? Is there varing severity’s to this syndrome?
Thanks, Samala


#66

Hi. I am a fairly new grandmother. My grandson will turn two this Saturday. After many months of convincing, my daughter finally had my grandson evaluated and they think he might have fragile X syndrome. His blood tests aren’t back yet, but he seems to have many of the characteristics. I just wanted to find a place to go for information and advice if it does come back that he does have fragile X syndrome.


#67

I am currently trying to find out if my 4 year old daughter has Fragile X Syndrome. We have had genetic testing but do they have to specifically test for the Fragile X condition to find it? The FISH test came back normal.


#68

I have a grandson with full mutation and myself, 3 sisters, a daughter and niece who are all carriers of Fragile X


#69

Hi there, I am 25yrs old and have 2 step children that have been diagnosed with Fragile X, my step son is 9 and step daughter is 8. I am here for some support because its getting hard on us to cope, we have acknowledge the diagnosis but we’re struggling with the schooling, Im hoping to find some parents that have or are in the same boat as us.


#70

Son of 11 has fragile x symdrome, Cardiff, UK


#71

I have 3 children with fragile x i have 2 boys and a girl. Im finding it hard to cope with my daughters behaviour she is 8. Has anyone got any suggestions


#72

Hi, My name is Tarra. I am a single mom with 5 kids, 3 are diagnosed with Fragile X Syndrome. My oldest son, age 5, is affected by this the worst. He lives with his dad and I have him quite often for visitation. He has severe adhd, some ocd, autistic characterisitics, and severe learning delays. He is however one of the happiest boys I have ever met. He has a great outgoing personality. He loves to smile and make others smile. My two year old son is doing great! He has very minor delays. He does have major anxiety though!!! We were fortuante enough to learn during pregnancy that he had fragile x. He has been in numerous programs since birth to get the best intervention. He also has a twin sister that he loves to copy. She teaches him everything she learns, which is not always a good thing…lol. My youngest daughter, 1, was diagnosed during pregnancy also. To this day we have seen zero signs that fragile x iss affecting her. She is highly intelligant and very happy. A real joy to have in our family. It is hard being a single mom, even more hard raising kids with special needs. I work hard with my kids, because I know the more they accomplish at these young ages the better off they will be in the future having this syndrome.


#73

I am interested in fragile x as my 3 yr old seems to have similar signs of fx and soon he has a chromosone test soon. And i want to chat to other people involved with fx.


#74

Hi, new member here. My name is Lorie Ann and I am in Southern California. My son Matthew (18m) is currently being tested for Fragiel X. He has severe verbal and non verbal speech delays, has sensory problems, and Physical delays. He has seizures as an infant and spent 10 days at Loma Linda Uni Children’s NICU. He is very lowtoned and has hyperextension in his thumbs and knees. We are currently seeing PT, OT, Speech language Pathologist, Audiologist, Neurologist, and Allergist (long list of food alergies). We have one referral for a Gentics Counselor at LLUCH but wont get in until Feb, if then, so we are awaiting for a second referral to either San Diego, OC, LA, or Long Beach.

Matthew just had his blood drawn and should have the results in 2-4 weeks.

I also have a 4.5 yr old daughter who we don’t think has Fragile X.


#75

Does anyone in the group have boys aged 8-9 with fragile x pemutation if so do they want to self harm when they get very agitated or frustrated. What are the medications that they have been put on. Our son is starting to do this and I need to know is it normal and anything to be concerned about.


#76

Hello. My name is Cliff and my wife [Bridget] and I live outside of Washington DC in Bowie Maryland. Our 2 year old son was diagnosed with Full mutation Fragile X syndrome this week. Oddly enough this was a huge relief to myself as his speech delays and behavior were frustrating to understand. Now we have the answer that we were seeking [though it may not be what we wanted]. I honestly believe I have learned more about DNA/Genetics and Fragile X in the past 72 hours then most Drs. do! I’m still riding on the sadness wave of knowing that he will be mentally disabled but holding my head high for my wife and kids and because of my wife and kids.
Great to meet you all.


#77

Cliff and Bridget,

Getting the diagnosis is a double edged sword. You’re happy for the information, but don’t want to think about what it means for the future. Our family was diagnosed a year ago, and I still have my good and bad days. My best advice is to love your child as no one else would.

Good luck,
Hallie Winters

cliaz fragilex-cpt2264@lists.careplace.com wrote:


#78

Hang in there this will be the darkest time- it WILL get better!!!

Father of 2 fragile x children

Eric Silverman

-----Original Message-----
From: cliaz fragilex-cpt2264@lists.careplace.com
To: cobcoins@aol.com
Sent: Fri, 28 Sep 2007 1:18 pm
Subject: Re: [fragilex] Fragile X Syndrome Member Introductions


#79

Hello Everyone. I am a 30 year old mom to twin boys who have fragile x.


#80

HI! My name is Rivky I am mother to four kids. two of them have developemental delays. I just found out some information on Fragile X and seem to find my kids in that category. I have an appointment to a genetic counselor. I would like to hear from people how they are managing and what there is to do? My kids are really high functioning but still have alot of delays. Attention deficit, no eye contact language delays. hypotonia, sensory integration , i need support is anyone out there to help!