Need prayers

[KimberlyH]

Maisie, I am so sorry the day was so horrible for you and your family. I empathize with your need to be strong, but sometimes the most courageous thing we can do is be week and rely on others, especially you, now. Let your hubby be your shoulder, and continue to be his. As a family you will make it through no matter the results. Big hugs to you.

 

[divergrrl]

Maisie: Thank you for taking the time to answer, I am all clear now. Is there any chance that James might NOT have Fragile X? I''ve been reading up on it a little, and he doesn''t show the facial features associated with it, and his role playing with his kitchen in your other post was promising.

I''m keeping my prayers hopeful for your family, and if you need anything or to just vent, we are here for you.

Biiiiiiig big big big big hugs to you, your husband, James & your other children. Hang in there momma.

 

[Maisie]

Yes there is a chance that James won't have it.

Women have two X chromosomes. Men have a Y and an X. These are your sex chromosomes.

If you have (or are a carrier) of Frag X, one of your X chromosomes (or your only X if you are a man) is not developed properly.

When a woman produces eggs they have a 50/50 chance of using the faulty X chromosome. She might have one child with Fragile X and one child without it.

A man can't pass Frag X to his son as he uses his Y chromosome to produce a boy. This is why we knew my husband couldn't have passed this on to James - therefore it was only me who needed to be tested.

I think (judging from their development and academic achievement) that only 3 of my 5 children have been affected by my faulty gene.

James is the most affected. He displays autistic behaviours and doesn't speak very much. He was slow to walk too. They are the only areas he seems to be affected. He is actually ahead of himself in all other developmental areas. He appears to be highly intelligent.

When you are tested for Frag X they count repeats of certain patterns within your DNA. If you have approximately 1 - 50 of a certain pattern you are classed as not having Frag X. Anyone with approximately 50 - 200 repeats is classed as a carrier. Anyone over 200 is said to have Fragile X Syndrome.

My count was 70. This is very near the normal end. I was very relieved to hear this! Its scary to think you have something wrong with you and its nice to know you are not severely affected with it.

So - all I have to look forward to is the chance of an early menopause. I think about 30% of Frag X carriers will start menopause around age 40. Men who carry it may develop short term memory problems and clumsiness in their 70's.

So to sum up. Depending on James' count - he could have learning difficulties ranging from very mild to very severe. He may grow up to be relatively normal and just struggle at school. Or he could grow up to always need care and never enjoy a relationship, get married, hold down a job or have children.

Its the not knowing how things will turn out that really gets to me. I have to trust God. He knows whats going on and why.

 

[IrishAngel7982]

Maisie, I was just thinking about you. Keep your head up and you will get through this, I promise. Just keep doing what you''re doing (being an awesome Mom) and everything will be ok!! *hugs*

 

[Stephanie]

James is the most affected. He displays autistic behaviours and doesn''t speak very much. He was slow to walk too. They are the only areas he seems to be affected. He is actually ahead of himself in all other developmental areas. He appears to be highly intelligent.

So to sum up. Depending on James'' count - he could have learning difficulties ranging from very mild to very severe. He may grow up to be relatively normal and just struggle at school. Or he could grow up to always need care and never enjoy a relationship, get married, hold down a job or have children.

Maisie,
Try to stay positive. My little brother was also slow to talk, and often was repeating things heard instead of forming his own sentences. That was his way of communicating because he was verbally slower. Once my brother was tested and diagnosed with autisim, we were told that he would need 24 hour care, he could never attend school, and several other things were mentioned that he would never be able to do. We didn''t believe it - partially because we were scared and mainly because we knew he was intelligent and that somehow it would all work out. It was a rough road for us, but he is doing just fine now. He does have a specialist that stays with him in classes at high school, but he makes great grades and is graduating soon and is going to be headed to college! In fact, he has a girl friend or two! We just knew that we couldn''t give up and believe the horrific things that doctors told us. I know that every situation is different, but just stay positive. And keep us posted on the results!

 

[divergrrl]

Maisie: Wow, that was an education, thank you for taking the time to post all that for us, it is very helpful for me to wrap my brain around what you are going through.

Just keep us posted & come vent here as needed...

I''ll be keeping your family in my prayers & in my heart, you are such a nice person (I can tell from your posts), and I just pray to God that James'' count is very low.

{{{big hug sister}}}

 

[IrishAngel7982]

Date: 7/19/2007 8:57:35 PM
Author: Stephanie

Maisie,
Try to stay positive. My little brother was also slow to talk, and often was repeating things heard instead of forming his own sentences. That was his way of communicating because he was verbally slower. Once my brother was tested and diagnosed with autisim, we were told that he would need 24 hour care, he could never attend school, and several other things were mentioned that he would never be able to do. We didn''t believe it - partially because we were scared and mainly because we knew he was intelligent and that somehow it would all work out. It was a rough road for us, but he is doing just fine now. He does have a specialist that stays with him in classes at high school, but he makes great grades and is graduating soon and is going to be headed to college! In fact, he has a girl friend or two! We just knew that we couldn''t give up and believe the horrific things that doctors told us. I know that every situation is different, but just stay positive. And keep us posted on the results!

This makes me so mad. Furious. Since your brother is now in high school these things must have been said many years ago, but still. It''s simply not true. I know how much things have changed in the past decade, but it is still hard to hear stories such as these. I''m glad your brother is doing well but GRR to the ignorant people who said those horrible things to your family.

Maisie...still praying for you sweetie!

 

[pyramid]

Date: 7/19/2007 4:29:50 AM
Author: Maisie

When you are tested for Frag X they count repeats of certain patterns within your DNA. If you have approximately 1 - 50 of a certain pattern you are classed as not having Frag X. Anyone with approximately 50 - 200 repeats is classed as a carrier. Anyone over 200 is said to have Fragile X Syndrome.

My count was 70. This is very near the normal end. I was very relieved to hear this! Its scary to think you have something wrong with you and its nice to know you are not severely affected with it.

Maisie I would take that as good news for the time being it is certainly on the plus side, certainly different than if your count was something like 165. I am hoping it won''t affect him badly if he does have it.

 

[Stephanie]

Maisie, have there been any updates??

 

[Maisie]

No updates yet. Still waiting for the childrens results to come back. I am hoping its not going to be so bad.

I can hope right?

 

[Ellen]

Date: 7/25/2007 5:03:57 PM
Author: Maisie
No updates yet. Still waiting for the childrens results to come back. I am hoping its not going to be so bad.

I can hope right?

You sure can Maise.

 

[Skippy123]

Date: 7/25/2007 5:03:57 PM
Author: Maisie
No updates yet. Still waiting for the childrens results to come back. I am hoping its not going to be so bad.

I can hope right?

of course honey! We are hoping right there with ya!!!!

 

[divergrrl]

Date: 7/25/2007 5:03:57 PM
Author: Maisie
No updates yet. Still waiting for the childrens results to come back. I am hoping its not going to be so bad.

I can hope right?

Yes you can hope! And like Skippy said, we are hoping right along with you I''ve got my fingers AND toes crossed.

You are such a sweetie.

 

[Kaleigh]

Date: 7/25/2007 6:37:43 PM
Author: divergrrl

Date: 7/25/2007 5:03:57 PM
Author: Maisie
No updates yet. Still waiting for the childrens results to come back. I am hoping its not going to be so bad.

I can hope right?

Yes you can hope! And like Skippy said, we are hoping right along with you I''ve got my fingers AND toes crossed.

You are such a sweetie.

I''m hping right along with everyone else!!!

 

[anchor31]

My thoughts are still with you maisie!

 

[lumpkin]

Date: 7/25/2007 5:03:57 PM
Author: Maisie
No updates yet. Still waiting for the childrens results to come back. I am hoping its not going to be so bad.

I can hope right?

Yes, and since you didn''t have a huge number of genes affected, perhaps even if James'' test comes back positive it will be very, very mild.

I''m very hopeful for you.

 

[diamondfan]

I too am hoping for the best case scenario...

 

[rainbowtrout]

Hope is good! We could still get good news here. I''ve got my fingers crossed!

 

[Maisie]

Aaaaargh! I called the clinic today to see if any results were in. They have to run the tests again as the result was unclear! Honestly - I don''t think my nerves can take this!!

I have been quite poorly. I have vertigo and its so bad now that I can''t go to work. I hate feeling ill!

 

[Kaleigh]

Date: 8/2/2007 3:21:09 PM
Author: Maisie
Aaaaargh! I called the clinic today to see if any results were in. They have to run the tests again as the result was unclear! Honestly - I don''t think my nerves can take this!!

I have been quite poorly. I have vertigo and its so bad now that I can''t go to work. I hate feeling ill!

Oh no, that''s a shame Maisie!! And hope you feel better soon!! Sending you a {{{ Big Hug!!}}}

 

[crystalheart1]

I am sorry for what you are going through. Hopefully you will get good news . My family went through somthing like this when my brother was younger. First set, inconclusive.
Second set - everything was fine.

Many times when nothing shows - they went to take again to confirm ..

My prayers and good wishes to you and your family

 

[Ellen]

Yes, as bad as it is to have to do it again, at least it wasn''t a huge positive result.

Maise, you can do this. Hang in there.

 

[ellaila]

Oh gosh, Maisie, I''m so sorry to hear about the tests! The waiting is definitely the hardest part, isn''t it?

And as a fellow vertigo sufferer, I send you big hugs and hope you feel better soon! Have doctors found any reason for it? For my particular kind (benign positional vertigo), physical therapy was a life saver for me in the past, so if you want to discuss it, I''m here ...

Hugs and more hugs to you and your family, Maisie!

 

[poshpepper]

Im so sorry you are not feeling well and having to wait for the test results.
I hope you feel better soon! Prayers for you and your family.

 

[Maisie]

Thank you for the continuing support. Its really helpful.

I have had vertigo before. I had the epley manouvere perfomed on me and it went away for about 5 years. For some reason its not working this time. I had it done about 5 weeks ago and I am worse than ever now. I don''t get paid for being off sick and as I am the only one working in the house its not ideal. I have another appointment to go to in a couple of weeks and I think they will repeat the epley to see if it helps. After that they will do a brain scan. Lol - they better find a brain in there!!!

 

[lumpkin]

Date: 8/3/2007 3:52:21 PM
Author: Maisie
Thank you for the continuing support. Its really helpful.

I have had vertigo before. I had the epley manouvere perfomed on me and it went away for about 5 years. For some reason its not working this time. I had it done about 5 weeks ago and I am worse than ever now. I don''t get paid for being off sick and as I am the only one working in the house its not ideal. I have another appointment to go to in a couple of weeks and I think they will repeat the epley to see if it helps. After that they will do a brain scan. Lol - they better find a brain in there!!!

I''m glad you haven''t lost your sense of humor!

I''m sorry they have to repeat the tests. Hopefully everything will come back negative. Until then, know you and your family are in my thoughts and prayers.

 

[KimberlyH]

Oh, Maisie, I''m so very sorry. Please do keep us posted. You''re in my thoughts.

 

[Skippy123]

Maisie, I use to suffer from Vertigo and it cleared up thank goodness so I really feel for you. Praying you get better soon; I am so sorry.

 

[divergrrl]

Maisie: I''m thinking of your family & hoping all is well....any news?

 

[monarch64]

Yes, Maisie, thinking of you and yours tonight...hope everything is going ok.

I had a job interview for a sales position at a local independent jeweler today and I was hoping you''d chime in on my ''fairy dust'' thread...obviously you''ve more important things on your mind, but I am certainly thinking of you and your family. I worked with a gal who had vertigo a few years ago and she was in absolute hell over it, missed some work but it was understood and she came back! I hope you are able to get through ALL of this and emerge as your usual fine spirited self, and that your kids and hubby are fine. Take care!!! (miss you!)