SPD And Fragile X

by Carra Connors
(Everett, WA USA)

Hi my name is Carra and I've posted several times in the past. My son Spencer was just diagnosed yesterday with FRAGILE X. So does that mean he doesn't have SPD?? Or can he have both??? Does this diagnose mean his sensory issues won't get better??? Or will they always be as bad as they are now?? I'm so upset about this, I don't know how to handle it. I have lots of questions running thru my head. Will he always be like he is right now? Any help or advice you might have would be so helpful. Thank you




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As far as I know you can indeed have both diagnoses. They are distinct and separate diagnsoses, but with overlap. I will try to find out more though.

Meanwhile, please talk to the other parents in AllAboutKids, as I know there are other parents in there with kids who have Fragile X. You can also look up any yahoo support groups for Fragile X moms as well. Those should help you in the immediate future, ok?

If anyone else reading this has children with Fragile X or SPD, or both can you give Carra some input and resources for her until I get more information? Thank you in advance!

Take care and know it will all be ok! He IS in OT, right?? I sure hope so, because that will certainly help immensely, with both diagnoses and the symptoms of each. Use your OT too for further information... she should know as well.



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Apr 24, 2016
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starstarstarstarstar 		diagnosis for grandson great grand dad xfragile
by: Anonymous

I am maternal grandmother to my 10yr old grandson who lives with step mom and his dad. His mom now herion addict has been defeated in court for 7yrs to be a part of his life due to a corrupt system and family alienating child from mom and family.he now has behavior and tested low iq.showed signs sensory and autism at age 2. Step n father ignored. My father showed physical signs x fragile with ld and tremor later, has passed, his older brother angelman now 75old I need to test with his mother also. Plz help, bflo ny
Aug 19, 2009
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starstarstarstarstar 		One Cuases the other
by: Anonymous

Fragile X caused SPD but you can still treat the symptom SPD and get results.
Aug 16, 2009
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starstarstarstarstar 		my son has fragile x
by: Anonymous

please i know exactly how u feel. we were told last sept after the devastation wore off ,we decided our lad was going to have the best life he can. after a year of speech therapy and one to one work at nursery,he is communicating well with us.i feel his future will be good he is hard work but very loving and eager to try to talk and learn.we take each day as it comes,sometimes hell be willing to learn and happy to go out,sometimes no way. but with help from vocal support group and his keyworker at nursery and speech therapy, we are making good progress.you will hopefully get the help u need, if not already getting help .contact vocal on 0131 475 2315 they are great.they will also help with any benefits u maybe entitled to x
Dec 06, 2007
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starstarstarstarstar 		Fragile X
by: Anonymous

For anyone interested in Fragile X the following might be helpful. The most important information that parents need to be aware of is that the chromosome analysis test should NEVER be used to diagnosis Fragile X - it's unreliable, producing far too many FALSE negative results.

The Top Ten Things You Should Know About Fragile X Syndrome
By Mary Beth Langan and Sally Nantais

1. It’s genetic.
2. If a woman is a carrier, she has a 50/50 chance of passing it on to her son(s) or daughter(s). 1 in 100 to 200 women are carriers **.
3. If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. 1 in 800 men are carriers.
4. Fragile X Syndrome does not discriminate; it doesn’t care which ethnic group you belong to.
5. Fragile X Syndrome is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).
6. Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.
7. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.
8. There are minor physical traits noted in many persons with Fragile X Syndrome, but not in all. These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.
9. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and Polymerase Chain Reaction (PCR) tests. Inaccurate results occur far too often with the generic chromosomal panel. Test for FXS to obtain a diagnosis or to rule it out. If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.
10. Where to go for the most accurate and up-to-date information on fragile X syndrome:
www.fragileX.org, the National Fragile X Foundation
www.FRAXA.org, Fraxa Research Foundation
www.conquerFragileX.org, Conquer Fragile X Foundation
https://www.youtube.com/watch?v=-6-J_YcVRi4 Fragile X – Hitting the Mark

** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.html
Dec 06, 2007
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starstarstarstarstar 		Fragile X
by: FXSmom

I have 2 kiddos with fragile x and we did have some sensory issues. My son way more than my daughter did. My son is now 11 and has minimal OT because he is doing so well, and he is on the higher range for mental retardation.

My suggestion to you is to go join the fragile X listserv. It connects you with hundreds of parents and professionals all over the world who know about fragile x. The information is at this website: http://www.fraxa.org/getinvolved_listserv.aspx. I also have a few links to some other fragile x links on my blog at http://fragilex.wordpress.com.

Fragile X parents do everything they can to help out a mom going through just learning about it so please feel free to reach out to us. We are there for you :-)!
Dec 06, 2007
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starstarstar 		Fragile X
by: Sally N

Fragile X like autism is a spectrum disorder.

Children with Fragile X may have problems with sensory processing, many do, but not all. Many have problems with anxiety, many may have problems with ADHD.

I highly recommend you join the FRAXA listserv.

The Listserv, sponsored by Emory University, is a virtual support and information exchange group (an electronic mail support group) for all interested parties, including parents, other family members, educators, and medical professionals. FRAXA started the Listserv in 1995 to serve the entire Fragile X community. The Listserv is open to all.

To Join:
Send email from your email address to LISTSERV@LISTSERV.CC.EMORY.EDU
with this as your e-mail message:

In the body of your message type:
SUBSCRIBE FRAGILEX- my name("your name") is whatever name you want to appear as the name on your Listserv postings. Type it in the way you want it to appear in upper/lower case letters.

The best information related to FX and SPD can be found at:
www.developmentalfx.org

To learn more about FX go to:
www.fragileX.org
www.FRAXA.org

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