Please help

February 15, 2001

Diane, we know how you feel. Read everything on this website.. I

have found it very helpful to print out things that are pertinent to

my Gracie..and I keep them in labeled folders...under...therapy

techniques, insurance, apraxia diagnosis...etc. Then I can just pull

it out and re-read it..It is amazing how much more I understand after

three months...and it makes sense to me. I can pull it out after

everyone is in bed..or if someone asks me a question....I can go to

the folder and share..I tote them with me when I go to the

doctor/early intervention meeting. etc. Hope that helps...as you

become more aware of what to do - what would help your son(after

researching) then you can decide how you should proceed. We will

help any way we can. Warmly,

> Hi my name is Diane I have a 4 years old soon to be 5

> years old whom has development apraxia speech.

>

> Please help I do not know what to do I want help so bad he now is

> in a speech class but I was the one who noticed his problem. I

just

> want some help so that I can be able to help him so that he will be

> able to catch up in school

>

> Thank you for any help and support

February 18, 2001

Hi, I can't believe how helpful it is to read all of

these emails! Not only do I continue to learn more,

but also, for the first time I don't feel so

alone...because so few lay people have heard of apraxia

much less understand it, it can be very frustrating.

My 2.3 daughter's behavior has been especially of

concern and after reading the posts about SI, things

are finally starting to make sense to me. I am

replying to this message; however, because I would

love to learn more about the diet supplementation of

fatty acids...could you please share with me some more

information on this, or where I can find more info on

this...I may have come across it before ont he web

without actually realizing it! Thanks so much, Barb

--- sabens4951@... wrote:

> Hi Diane and welcome to the list!

>

April 24, 2001

Hi I don't know that I can help but I can sure relate to what you are

going through. because I've been there. and Now we are recienveng

help . I would start with an OT (occuapational theripst evaluation)

because she may have some sensory integratrion issues. alot of kids

with apraxia do. just to rule that out. if she does they can help

you. Be sure to get an OT with training and experience in SI. and

also we are using the association method for speech. And seeing alot

of improvment.

Hope this is helpful

apraxia does have other hidden problems that we as parents are not

always aware of.

Becky

August 30, 2001

,

Your situation sounds similar to mine. Our son Lucas is 23 months and has been

getting services through birth to three for about three months. Our

Developmental Pediatrician prescribed 5x60minutes of PROMPT certified therapy

per week. He has Apraxia, hypotonia, and dysarthia.

We have never been able to get this level. Originally, we got 2 x 45 minutes

per week(speech) in our home. After much pressure (from me), one more session

per week has been added, although we have to drive nearly an hour for this extra

session. We are on our third speech therapist simply because the employees keep

leaving the agency we were assigned to. Apparently the job market is very tight

and the State agencies not the premium jobs. Finally, after all this time, we

have gotten two therapists that have some PROMPT training although they aren't

certified.

Because I felt I must, I have also found a wonderful private therapist who is

PROMPT certified to supplement 2 more per week. (She is also well trained to

handle the Oral Motor therapy), and is my guiding light.

However, for occupational therapy, we have always had what seems to be

reasonable (3 x 45 minutes per week) and plus, I privately pay for an additional

1 / week with a private ot.)

We have finally retained a lawyer to help us advocate for our son. I don't

really know if this will pay off, but I think it will be wise for the long road

ahead. We will eventually need to transition into the school system and would

hope that someday we could get more service without laying out all the payments.

We are promised some reimbursement from insurance, but this is limited.

I keep a daily log of every phone conversation dated/timed/with whom for

reference. I am relentless in pushing for qualified therapist experienced in

the treatment of Apraxia (which is not just a delay!)...The state must comply

with certain time guidelines and keeping all this information is invaluable.

To get the extra session, I sent a certified letter to the head of his program

and very politely explained why he needs more.

Anyway, I am afraid that the squeaky wheel gets the grease and that legal help

(I don't know much about advocates) can be necessary.

We have to fight for our children, no matter what. If anyone has more advice

out there, I'd love to hear it as all help is welcome.

Good Luck

lois

August 30, 2001

,

There are some articles on this web page which may help your case. I

would also ask them what technique they use. Some of us have found

SLp's who unfortunately think that apraxia can be treated the same as

a regular delay.

I would also research some private schools that have intensive speech

and language programs. They may see this as a sign of your wanting

your child to go out of distict which means $. They may be willing to

work with you.

Also push for 1 on 1 therapy. From what I have read this is very

important with apraxic kids.

Good luck. I hope this info is helpful.

http://www.apraxia-kids.org/definitions/frequency.html

> I have not yet figured out how to email on this group so I probably

am not doing it right. Just in case I get lucky however, here is my

problem.

>

> I need help. My School system does not want to give my son, who

has been diagnosed with verbal and motor apraxia, ST more than

1x/week. I have 2 other SLP's who have suggested 3-4 x/week and I am

seeing my pediatric neurologist next week. SHe has already told me

whe is willing to write a letter, as well.

>

> I have an IEP meeting in 2 weeks. My son is 3 so this will only be

my second. I want to be prepared and show some proof that speech

therapy more than 1x/week is necessary. Can anyone give me any

advice on where to find this info. I have pulled some things off the

internet but I don't know that I have found enough proof yet. I have

two kids and I am terrible stressed out trying to prepare for this.

I am on the internet all day and all night and I feel like I don't

come up with much. Can anyone help?????

>

> Z.

August 30, 2001

Hi !

There are more than a few websites that you can now go to for

information on one on one therapy/advocacy thanks to the rise in

awareness and support groups for apraxia.

Problem is that up until CHERAB, verbal apraxia in children was not

really looked at, or written up from a medical point of view, so it

was not always in the " language " of the pediatrician.

We are lucky in that thanks to the clinical conference that CHERAB

hosted-the first ever for apraxia-we now have some information online

that you can use to present to your doctor, insurance company,

school, etc, for advocacy and understanding reasons for your apraxic

child.

Here is part of the information from developmental pediatrician

Marilyn Agin MD about verbal apraxia. To read the entire document,

(as well as information on one on one therapy-and SO much more) visit

http://www.apraxia.cc and look under index

" VERBAL APRAXIA:

Marilyn C. Agin, M.D.

Medical Director, NYC Early Intervention Program

Medical Director, CHERAB Foundation

Presented at: The First Conference on Therapy for Verbal Apraxia,

July 23-24, 2001, Headquarters Plaza Hotel, town, New Jersey,

U.S.A.

Appropriate Therapy (1)

Intensive and frequent

Individual (no benefit from group tx)

Repetitive practice for habituation of motor learning

Multisensory, including touch-cue system (PROMPT)

Core vocabulary

Successive approximations

Melodic, rhythmic (singing rhymes)

Appropriate Therapy (2)

Difficult course resistant to " traditional methods "

Regression and learning to speak one word at a time

Use of " total communication " approach (e.g. sign language, PECS and

augmentative communication devices)

Oral motor techniques--if indicated

" Children with apraxia of speech required 81% more individual therapy

sessions…to achieve a similar functional outcome "

(1999) Clinical Management of Motor Speech Disorders "

Here are just two other sites you may want to visit for more

information for advocacy issues with IEPs-all links mentioned (and a

huge amount more) are at http://www.apraxia.cc (and if you don't see

a link you believe should be at the CHERAB website-let us know and we

will add it!)

***(GREAT resource!!)***Severity Intervention Matrix from American

Speech Hearing Association for School Based SLPs

http://professional.asha.org/library/slpschool_g.htm

Individual Education Program(IEP)

Parent Preparation and Planning

http://www.tayloredmktg.com/dyspraxia/iep.html

Also, don't forget that the CHERAB homebase meeting on September 10

for the NJ Tristate area will cover this topic as well. Sussan and

Greenwald Esq Special Ed Law Attorneys, are on the board for CHERAB

Foundation, and will be presenting at this meeting. (should I say

this again?) ...Information at... http://www.apraxia.cc

August 31, 2001

Hi, !

Please find out the laws in your state, too. Our

local school system said that they weren't required to

give more than 2x/week therapy. I've found in TX that

each school can have its own guidelines. I know

parents who have children receiving therapy, when

others with the same circumstances do not qualify in a

different school system.

My son no longer qualified for PT, however, he clearly

needed it. He would have qualified at a few other

schools, but they were to far from us (we're rural).

He did not qualify for summer therapy and I didn't

want to just " tread water " during that time. The

consistency was very disappointing, also. All of the

regular school breaks and then the therapist began

canceling in April to attend IEP meetings. They could

never keep a ST longer than one year. Our school is

just a stepping stone to better things. :-) Anyway,

we chose three years ago to drive 104 miles

(round-trip) twice/week for his therapy. It is

extremely consistent and his individual needs have

been met much better. This also led us to full-time

homeschooling. However, I do understand that many are

unable to choose private therapy.

You must be your child's advocate. No one loves your

child the way that you do. The teachers in my son's

homebound IEP did love him, but he wasn't their child

24/7. My son's former SLP, that was taken away from

us, told me that they are use to parents just agreeing

with the IEP. She told me that it shocks them for a

parent to stand up to them, but there is a certain

level of respect. She wishes that more parents would

be aggressive. :-)

God bless,

MarilynM

__________________________________________________

August 31, 2001

If the child needs more speech therapy then 2xweek, then the schools

have to provide it. The IEP team comes up with the determination.

Parents are on the IEP team and do not have to agree with the school

district.

Check out this group:

IEP_guide

They are just about IEPs and they are very useful.

Suzi

September 2, 2001

Marilyn M,

What part of Texas are you from? There are a few of us that have been

talking of meeting somewhere that is convenient for all. Let me know if you

are interrested.

my private e-mail is STACYRUGH@... . Hope to here from you.

Re: [ ] Please help

> Hi, !

>

> Please find out the laws in your state, too. Our

> local school system said that they weren't required to

> give more than 2x/week therapy. I've found in TX that

> each school can have its own guidelines. I know

> parents who have children receiving therapy, when

> others with the same circumstances do not qualify in a

> different school system.

>

> My son no longer qualified for PT, however, he clearly

> needed it. He would have qualified at a few other

> schools, but they were to far from us (we're rural).

> He did not qualify for summer therapy and I didn't

> want to just " tread water " during that time. The

> consistency was very disappointing, also. All of the

> regular school breaks and then the therapist began

> canceling in April to attend IEP meetings. They could

> never keep a ST longer than one year. Our school is

> just a stepping stone to better things. :-) Anyway,

> we chose three years ago to drive 104 miles

> (round-trip) twice/week for his therapy. It is

> extremely consistent and his individual needs have

> been met much better. This also led us to full-time

> homeschooling. However, I do understand that many are

> unable to choose private therapy.

>

> You must be your child's advocate. No one loves your

> child the way that you do. The teachers in my son's

> homebound IEP did love him, but he wasn't their child

> 24/7. My son's former SLP, that was taken away from

> us, told me that they are use to parents just agreeing

> with the IEP. She told me that it shocks them for a

> parent to stand up to them, but there is a certain

> level of respect. She wishes that more parents would

> be aggressive. :-)

>

> God bless,

> MarilynM

>

> __________________________________________________

>

May 28, 2002

,

I must have missed this as well....I too would be interestede in any new

information!!!! I was on holidays and email has been shut off!!

,

Mom to Aidan & Devlin, 28 weekers, now 2 years, IUGR , TTTS, Apnea

(resolved), Bradycardia (resolved), ROP (resolved), pulmonary Stenosis,

Atrial Septal Defects, intrahepatic portal shunt (liver now resolved),

delayed in every area ( global delays), speech delays...now looking into

apraxia......and taking EFA's (ProEfa- Nordic Naturals)

But HAPPY, BEAUTIFUL baby boys.....a constant inspiration and source of joy

to their parents.

September 15, 2002

Hi and welcome to the site- we are so happy you have found us. You will bemet with lot of great experience and knowledge. We would love to hear more about you and your precious son where you are from your names etc. I am beck one of the moderators here- my son was also in the begininning stages of his plagio at 2 months and wore a helmet/doc band at 3 months. He is now a proud graduate and 21 months old and I couldnt be happier. I have a 6 month old daughter who is a product of effective repositioning so you are VERY fortunate that your ped has caught this so early and is leading you in the right direction. You will hear many moms with peds who blew off this condition or were told not to worry about it so it is great you and your ped are being so proactive. Having the appointment with the neuro is great- I would make sure they are plagiocephaly and craniostynosis familiar- but esp. Plagio friendly and familiar- but if your ped has recc. they probably are. There is a link at plagiocephaly.org on finding a preferred physician. I am so sorry I am not at my home computer because I coulld provide it to you. Also if you can go into the files section of the plagio home page and then look through them there are lots of head shapes and repositioning techniques that are in there and beneficial for you to start looking at now. There are also questions for the drs and different types of helmets available. etc. You may want to check out the support group for cranio- just to see if anyone else has had small fontanele as well- but I wonder how small is it in compared to what it should be- did your ped say??? I am not sure how to measure at home but I know we have discussed it before and I know you may find direction on how to do that in the files as well or possibly the archives.

I am so sorry I am normally providing links left and right and just cant since I am not at home:-( I am sure one of our other great moms will chime in though and be able to help.

Let me just say you sound like a great proactive mommy and 2 months is a wonderful wonderful age to have very effective repositioning for plagio. I hope it is plagio as it is easily correctable:-) Most clinics dont even offer helmet therapy or banding until over 3 months of age so it is likely that they would recc continued aggressive repo and then returning in a month to see the progress- depending ion his severity. WE WOULD LOVE to see pictures of his head shape and give you our opinion as well. Also let us know where you are from so we can see if there are any other moms on board near you as well.

Sorry I could not be of more help tonight. I know this is a very scary time for you but we will be here every step ask as many questions as you like and let us know when you see the neuro how it goes. Keep up the good work mommy!

beck mom to brian

doc grad

memphis, tn

September 17, 2002

At 2 months old, your child is a at great age for repositioning to work- but

it will be a task that you have to monitor and keep up with. Make sure your

ped has ruled out torticollis, a tight neck muscle, that may be causing the

plagio. My son was not dx with tort until his 2 month old checkup, he was

not able to fully rotate on his own to the left without help, and it would

spring back to the right. If you are the primary caretaker, you can be on

top of repositioning, and document your success with photos from every angle,

preferably with wet hair to get the full shape of the head. Try as many

repositioning aids that you can find, and encourage supervised tummy time,

this will also strenghten your child's upper body strength, and help decrease

time spent on the back of the head. We found a rolled up receiving blanket

placed at the base of the neck while in the swing was great at keeping

off the back of his head, it just didn't help matters where the tort

was concerned, so we were very frustrated to say the least. Good luck and go

full throttle with repositioning now, and your child can very well avoid the

helmet altogether, but just be sure to keep on top of the progress and know

when to call it quits, with ample time for banding to do great work if need

be (best between 5-8 months of age)- again, severity is also key. Hang in

there!

' Mom

March 8, 2004

Hi!

Some of the children in my class had the same problem; we just cut a lot of

'he's' and 'she's' out of newspappers and went through them DTT style which

worked fine. Generalisation was vidoes, books, magazines and 'the real world'.

The kids though it was quite fun!

Charlotta

chantre@... wrote:

Does anyone know good ways to help with idetifying " he " and " she " . For some

reason, my son calls everyone he. Any suggestions would be greatly

appreciated.

Thank you.

July 6, 2004

Hi,

I undersand that his wife is already pregnant, right? I would ask him what

he would do if there was the possibility (wich is not of course) that the

baby has BPES ....

Anja

>From: " lyndenhunter " <lyndenhunter@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis please help

>Date: Tue, 06 Jul 2004 02:19:49 -0000

>

>just wondering if anyone has any advice for me, my sons father is

>now having a baby with his new wife and is freaking out and is

>freaking her out by now not believing me about when i tll him that

>their baby cannot have BPES, (he does not have it, our son is the

>only one) he has come to the genetisist with me and found out all

>about it but all of a sudden does not believe what the doctor has

>said. if anyone has any advice on what i should tell him it would

>really help me out. i have already referred him to any web site i

>could find

>

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July 6, 2004

Perhaps you could try these:

1. ask him "which person do you think knows more about bpes than you and me? We can go and talk to them".

2. go and visit the geneticist again, ask them to draw more diagrams, explain some genetics to you. Maybe ask the geneticist to talk about something completely unrelated when they are talking with you - e.g. hair colour - (red heads are inherited). This way when he is listening, getting the facts again, he can concentrate on the genetics aspects rather than emotional or physiological aspects. I think it will take about an hour - so go well prepared, take a notebook, and make sure that you can devote 100% of your time to listen to what the geneticist says.

3. maybe you could ask him why thinks none of his extended family (uncles, cousins, nieces, etc) have BPES.

It is quite possible that a trained counsellor or helpline, not necessarily to do with BPES, can help you. You could widen the search for a suitable resource to help you in this situation.

Hope this helps

Shireen

-----Original Message-----From: lyndenhunter [mailto:lyndenhunter@...]Sent: 06 July 2004 03:20blepharophimosis Subject: blepharophimosis please helpjust wondering if anyone has any advice for me, my sons father is now having a baby with his new wife and is freaking out and is freaking her out by now not believing me about when i tll him that their baby cannot have BPES, (he does not have it, our son is the only one) he has come to the genetisist with me and found out all about it but all of a sudden does not believe what the doctor has said. if anyone has any advice on what i should tell him it would really help me out. i have already referred him to any web site i could find

July 6, 2004

Tonika,

Would it help if you had him contact me at all? Maybe because we live in the

same area we could work something out. Maybe he could talk to Shaye, man to

man, it might make a difference....who knows? He may also feel like he knows

Shaye better(some people just do?). I'm not sure how much you have told him

about us, but if there is any way we can help let me know....

Trish

blepharophimosis please help

> just wondering if anyone has any advice for me, my sons father is

> now having a baby with his new wife and is freaking out and is

> freaking her out by now not believing me about when i tll him that

> their baby cannot have BPES, (he does not have it, our son is the

> only one) he has come to the genetisist with me and found out all

> about it but all of a sudden does not believe what the doctor has

> said. if anyone has any advice on what i should tell him it would

> really help me out. i have already referred him to any web site i

> could find

>

July 6, 2004

Hi again,

I just can ´t get your message out of my mind. Probably because I am

pregnant with my 2nd child (my 1st one has BPES). I hope you did not get my

first comment wrong.

The question is why is your ex-husband freaking out about the possibility of

having transmitted BPES? What would the consequences be for him?

During my prenatal care the Doctors (and everyone else) asked me if I wanted

an amniocentesis to check out if the baby has BPES, too, or not (we have had

a genetic family testing already and the affected gene has been identified,

so that this would be a possibility). I said no, because it would not

influence my decision of having the baby. The risk that our second baby will

have BPES is low anyway, because my husband and I are no gene carriers. But

the geneticists told us that there is still a rest risk because of the

possibility of germline mosaicism. This means that it is possible that one

parent has some normal eggs (or sperm cells) a n d some that carry the gene

change (mutation) for the genetic condition. He or she appears to be

unaffected but can unknowingly pass it on to the child. There is no test

that can determine whether either parent has germline mosaicism. (maybe you

should not tell him about this……).

Anyway, statistically the risk that the child might have a chromosome defect

like e.g. Down ore even a severe birth defect is much higher. So how can

your ex deal with t h a t? What does he want? A guarantee for a perfectly

healthy baby? Nothing, not even an amniocentesis will be able to give him

this guarantee. Pregnancy is always an adventure and it is a pity that he

and his wife are not able to just lean back and enjoy the pregnancy. Maybe

you can try to approach the topic from this point of view.

What was his reaction when your son was diagnosed with BPES?

Anja

> blepharophimosis please help

>

> > just wondering if anyone has any advice for me, my sons father is

> > now having a baby with his new wife and is freaking out and is

> > freaking her out by now not believing me about when i tll him that

> > their baby cannot have BPES, (he does not have it, our son is the

> > only one) he has come to the genetisist with me and found out all

> > about it but all of a sudden does not believe what the doctor has

> > said. if anyone has any advice on what i should tell him it would

> > really help me out. i have already referred him to any web site i

> > could find

> >

July 7, 2004

ok here it is .................this is my situations, Trish knows all about this, when my son was born he was a beauty, I thought so anyway and so did his father, well then his grandmother took a good look at him ( his fathers mom) and said to me WHAT THE HELL DID YOU DO ? DRINK????needless to say I never took a drink.......... but was worried so we got my son checked ASAP and like I said before in earlier posts he had his 1st surg at 6weeks, well we took my son to his grandmothers post opp and im sure you all know that brow lift post opp is not the nicest looking, in her words it was down right sorry "he was downright weird looking maybe even retarded." of course I told her she was the retarded one.( she didn't like that ) she banned me and my "freak of a son" from her house which I gladly accepted. where was my husband during all this you ask???? well he sat along side his mom drooling saying whatever you say mom, seriously he did not do one thing to stand up for his son or I, so I put up with it for 3 1/2 years( too long) and I finally said asta lavista because my children really did not need to be part of a family that treated them like garbage, nor did they need to pick up those ignorant habits of putting people down. my husband reacted like it was my fault his son was "born that way" anyway to make a long story shorter he did come to the geneticist and well had all the info, when he did call me last night I think I lost it on him because he was acting so stupid, when I went to work today my nursing co workers said just like you guys all did, SO WHAT IF THEY HAVE A CHILD WITH IT" for some reason I never did say that I was just defending BPES and my son , but thanks to all of your advice I know what to say, what I am doing is as you all send the emails I cut and paste the important details and send them to him. THANK YOU ALL SO MUCH, I really thought now he was ok with it, what really bugs me is that they think that their general practitioner knows more than me about BPES , im not sure if he missed the clue when the doctor said "what is that", he said to me last night I am not an expert and I do not know how things are inherited,..................MEN. so yah this all helps so , much I will talk to him tonight( no yelling I promise) I hope for his wife and everyone else's sake that I can explain to him the reality of BPES, and make him realize that it is ok to have a child with ANY kind of defect.

Tonikka

-----Original Message-----From: Anja Shahin [mailto:anjashahin@...]Sent: July 6, 2004 10:30 AMblepharophimosis Subject: Re: blepharophimosis please helpHi again,I just can ´t get your message out of my mind. Probably because I am pregnant with my 2nd child (my 1st one has BPES). I hope you did not get my first comment wrong.The question is why is your ex-husband freaking out about the possibility of having transmitted BPES? What would the consequences be for him?During my prenatal care the Doctors (and everyone else) asked me if I wanted an amniocentesis to check out if the baby has BPES, too, or not (we have had a genetic family testing already and the affected gene has been identified, so that this would be a possibility). I said no, because it would not influence my decision of having the baby. The risk that our second baby will have BPES is low anyway, because my husband and I are no gene carriers. But the geneticists told us that there is still a rest risk because of the possibility of germline mosaicism. This means that it is possible that one parent has some normal eggs (or sperm cells) a n d some that carry the gene change (mutation) for the genetic condition. He or she appears to be unaffected but can unknowingly pass it on to the child. There is no test that can determine whether either parent has germline mosaicism. (maybe you should not tell him about this……).Anyway, statistically the risk that the child might have a chromosome defect like e.g. Down ore even a severe birth defect is much higher. So how can your ex deal with t h a t? What does he want? A guarantee for a perfectly healthy baby? Nothing, not even an amniocentesis will be able to give him this guarantee. Pregnancy is always an adventure and it is a pity that he and his wife are not able to just lean back and enjoy the pregnancy. Maybe you can try to approach the topic from this point of view.What was his reaction when your son was diagnosed with BPES?Anja> blepharophimosis please help>> > just wondering if anyone has any advice for me, my sons father is> > now having a baby with his new wife and is freaking out and is> > freaking her out by now not believing me about when i tll him that> > their baby cannot have BPES, (he does not have it, our son is the> > only one) he has come to the genetisist with me and found out all> > about it but all of a sudden does not believe what the doctor has> > said. if anyone has any advice on what i should tell him it would> > really help me out. i have already referred him to any web site i> > could find> >> >> >> >

July 7, 2004

Why isn't it possible that his new baby will not have blephs? it could right! My husband and I don not have bleph, and neither does our 1st child, our 2nd is the only one who has this in our family?

-- blepharophimosis please help

just wondering if anyone has any advice for me, my sons father is now having a baby with his new wife and is freaking out and is freaking her out by now not believing me about when i tll him that their baby cannot have BPES, (he does not have it, our son is the only one) he has come to the genetisist with me and found out all about it but all of a sudden does not believe what the doctor has said. if anyone has any advice on what i should tell him it would really help me out. i have already referred him to any web site i could find

July 7, 2004

Are you sure that he doesn't have BPES (and therefore his baby can't)?

My father didn't appear to have it, and my son doesn't appear to have

it, but they most certainly do/did, as do I, as did (maybe does if she's

still alive) my aunty (father's sister). BPEI can be very lighty

expressed, such that you'll only detect it if you're specifically

looking for it. And it's almost always passed on.

Either way, there's not much point worrying about too much. Even if one

were sure it was being passed on, there's nothing anyone can do about it

at this stage. I'd be reminding him that, worst case, there are a lot of

genetic conditions that are far worse than BPES/BPEI. (Sorry everyone,

but it's true). Before starting a family, my wife and I *KNEW* I would

be passing on BPES, but we went ahead anyway.

Rob

lyndenhunter wrote: