New here

[Guest guest]

Hi Johanna,

I was shocked when I was diagnose in July 2002 but this is a good place find

out a lot of information on HCV. I used it after I was diagnosed and it really

helped me. It's good to know you're not alone. The first thing I found out is

that many people can lead a normal life with this disease even if they choose

not to do the treatment. You just have to make some minor life style changes

like giving up alcohol and avoiding certain foods. So you came to the right

place to find out the facts and how some people cope with HCV. Keep a positive

outlook and you should do fine.

Lynch

Johanna <dragonfly21354@...> wrote:

HI MY NAME IS JOHANNA - RECENTLY DIAGNOSED JULY 2007 WITH HCV - STILL

FEELS LIKE THIS IS NOT REAL. AGE 53

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

HI to all the new heppers out there!! Well I finally had my baby in December and

now I am on to treatment endeavors. I am nervous I see a new GI Doc that was

recommended to me recently. I did see one during the pregnancy and he was

HORRIBLE With a capital H. So far the baby is doing ok. he is a month old now.

the doc says my hcv is active currently so I am going to see this doctor in Feb

they could not get an appt until FEb and just my luck my medicaid runs out the

end of FEb. That sucks!!! So maybe I can get some treatment in before it runs

out. What do you think>

New Here

HI MY NAME IS JOHANNA - RECENTLY DIAGNOSED JULY 2007 WITH HCV - STILL

FEELS LIKE THIS IS NOT REAL. AGE 53

[Guest guest]

Congratulations ! Boy or girl?? Either way that's great news. ;-)

If you're going to get in on treatment you'd be wise to put the

wheels in motion ASAP even if that means finding a different doctor

who will see you right away.

It can be a slow process getting started and it seems the insurance

is always behind the hold up.

Just because you start with one doctor doesn't mean you have to stick

with them throughout treatment. In fact the day I received my first

drug shipment I switched to a new doc because my first one was also

horrible with that same capital H. lol

Good luck and again congrats!!

Gayle

>

> HI to all the new heppers out there!! Well I finally had my baby in

December and now I am on to treatment endeavors. I am nervous I see a

new GI Doc that was recommended to me recently. I did see one during

the pregnancy and he was HORRIBLE With a capital H. So far the baby

is doing ok. he is a month old now. the doc says my hcv is active

currently so I am going to see this doctor in Feb they could not get

an appt until FEb and just my luck my medicaid runs out the end of

FEb. That sucks!!! So maybe I can get some treatment in before it

runs out. What do you think>

>

> New Here

>

>

> HI MY NAME IS JOHANNA - RECENTLY DIAGNOSED JULY 2007 WITH HCV -

STILL

> FEELS LIKE THIS IS NOT REAL. AGE 53

>

>

>

>

>

>

[Guest guest]

Hi. I'd say it's time to contact your states' Autism Society. They are awesome. You can just google your state and then, autism society. Tell them everything and ask what you should do. Also,,,,,don't forget that you're an awesome mom and DON'T stop fighting!!!! It seems like there are really great school districts and to put it bluntly, really shitty ones. Keep us posted. Have a great weekend. Robinmommy1as <misha_iu@...> wrote: Hi. I'm new here. I've been reading for awhile now. My child was Dx'd with Asperger's in April of 2006 at 5 years old. A year prior to this it was Sensory integration, adjustment disorder, possible ADHD, possible Bipolar. The manager that I worked for didn't like that at all. I actually described it as being a little like autism. I was told that he had a cousin whose child has autism and they have no life. From that point on I was phased out of the company. Go figure it was an insurance company. I didn't even have an actual spectrum Dx then.Anyway, it's gone downhill since then. The state I'm in recognizes Asperger's as being too "high functioning" and refused waiver services citing that it's all social. The school district believes it's all behavioral and won't provide services. They kept putting my child in the special ed room as a punishment for her behavior. They used what they considered to be

social stories which didn't outline anything other than the consequences for breaking rules...no rules listed. There were meltsowns every day after school and in the morning screaming about not wanting to go to school. I was told by the teacher that they don't see that there and she's sorry I have problems with her at home. Because of their refusal to even do hand to hand transitions they lost my child (wound up on a bus...luckily the one heading home...while I was there to pick up). When I reminded them of the wandering and running off I had warned them about in the IEP meeting I was told, "Oh well, now we know." The final straw came after I requested an IEE to be done. My child came home with finger impressions on one arm and broken capillaries on the other. I took my child to the doctor, who called child protective services (CPS) on the school. But since I'm a good mom and took my child out of that

school, they (CPS) wouldn't do anything. The school actually told CPS that they felt what they did was appropriate and that there was a miscommunication. I was never contacted on the day this incident happened or any other time they restrained or took my child out of the classroom. Which I believe by law is considered in school suspension since there is no IEP.The IEE was approved by the district, but once I pulled my child out of school they dropped the ball. They actually asked if I still wanted to have it done. This came almost a month later after the last contact I had with them was where the director of special ed stated she was tring to call the person I requested. That was the last I heard. I wrote back asking why this wasn't carried through. I was told that I would have to do it. And to look at their policies. I looked at their policies...it states they have to make the call to the person. So, now they're

playing more games. And in her two most recent letters to me she is stating that the IEP team at my child's previous school will reconvene once the IEE is complete (I have to call that meeting too) and they will "consider" it. Seriously, the word was in quotes both times. I'll stop now...this is already too long.

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[Guest guest]

I am confused as to whether you still want her in school (get the IEE and get an appropriate plan in place) or if you are going to homeschool?

I usually find when they are playing games that you need to start going up the food chain. So start CCing copies of everything to the boss of the person you are working with who is not cooperating, then to that person's boss, etc. Find the names of the school board members and CC to them. Locate an advocacy group in your area and get someone to help, network and find names of helpful people.

RoxannaAutism Happens

( ) New here

Hi. I'm new here. I've been reading for awhile now. My child was Dx'd with Asperger's in April of 2006 at 5 years old. A year prior to this it was Sensory integration, adjustment disorder, possible ADHD, possible Bipolar. The manager that I worked for didn't like that at all. I actually described it as being a little like autism. I was told that he had a cousin whose child has autism and they have no life. From that point on I was phased out of the company. Go figure it was an insurance company. I didn't even have an actual spectrum Dx then.Anyway, it's gone downhill since then. The state I'm in recognizes Asperger's as being too "high functioning" and refused waiver services citing that it's all social. The school district believes it's all behavioral and won't provide services. They kept putting my child in the special ed room as a punishment for her behavior. They used what they considered to be social stories which didn't outline anything other than the consequences for breaking rules...no rules listed. There were meltsowns every day after school and in the morning screaming about not wanting to go to school. I was told by the teacher that they don't see that there and she's sorry I have problems with her at home. Because of their refusal to even do hand to hand transitions they lost my child (wound up on a bus...luckily the one heading home...while I was there to pick up). When I reminded them of the wandering and running off I had warned them about in the IEP meeting I was told, "Oh well, now we know." The final straw came after I requested an IEE to be done. My child came home with finger impressions on one arm and broken capillaries on the other. I took my child to the doctor, who called child protective services (CPS) on the school. But since I'm a good mom and took my child out of that school, they (CPS) wouldn't do anything. The school actually told CPS that they felt what they did was appropriate and that there was a miscommunication. I was never contacted on the day this incident happened or any other time they restrained or took my child out of the classroom. Which I believe by law is considered in school suspension since there is no IEP.The IEE was approved by the district, but once I pulled my child out of school they dropped the ball. They actually asked if I still wanted to have it done. This came almost a month later after the last contact I had with them was where the director of special ed stated she was tring to call the person I requested. That was the last I heard. I wrote back asking why this wasn't carried through. I was told that I would have to do it. And to look at their policies. I looked at their policies...it states they have to make the call to the person. So, now they're playing more games. And in her two most recent letters to me she is stating that the IEP team at my child's previous school will reconvene once the IEE is complete (I have to call that meeting too) and they will "consider" it. Seriously, the word was in quotes both times. I'll stop now...this is already too long.

[Guest guest]

Hi Shosh, My daughter was diagnosed with Tort. at four months but we started doing the repositioning at 3 months because we noticed her head was forming 'odd'. For us the repositioning didn't work because she would just move her head back to where she wanted it. We didn't have to take her to PT but we did take her to the chiropractor and he's helped her so much and we also started doing our own excercises the Speacialist recommend and it's help tremendously. Lily now has had her helmet for 2 weeks for Plagio. and we already have started to see a world of differnece with her head and she now sleeps on the side she would always avoid. I was told that once they can move around the repositioning doesn't really help much cause they'll go where they want to basically...hope this helps. And you are absolutly right the helmet won't hurt in helping your daughter in the long run! :-) Good luck!

:-)shosh428 <Shosh428@...> wrote: My daughter just turned 4 months old. She has torticolis and we have been repositioning since birth but not really aggressively since about 3 months of age. I took her to CT this week and they said she is mild/moderate and they didn't immediately recommend a band, but did say she is a good candidate. Not sure what that means. I havent spoken to the pediatrician yet (we have an appointment on Monday) but right now I'm leaning towards doing it. My feeling is...Why not? It

can't hurt. Right?Her measurements are: Cranial Vault Assymetry 10 mmMid-Face Assymetry 4 mmSkull-Base Asymmetry 3 mmSInce she is so young I know we could see good results. We havent even started physical therapy yet for the torticolis since she was just diagnosed and the government agency that arranges it is extremely slow. Ive been doing exercises with her on my own, been repositioning like crazy, I havent put her in the bouncy seat or swing even once since she was diagnosed with torticolis about a month ago. But im wondering if repositioning on its own will really work. Any advice?-Shosh

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[Guest guest]

Hey! Your daughter's measurements are almost identical to my son's. he has tort (been in treatment since he was 2.5 months) and we tried repo. and didn't use swings, but his measurements went from 5mm (CV) to 10 by 4 months. So he has been in the DOC band for almost 3 weeks now. His Tort is still lingering... And I hope that this wont affect his outcome after the band is off. I've been told he only has mild tort, but it just doesn't seem to be going away. I hope that the repo goes better for you! But, I would defiantly band, I think that the tort just makes it that much harder for their noggins to round out on their own, and am glad that he will only have to spend 6-8 weeks in the helmet instead of 3-4 months if we had waited. I would deffinatly start stretches now. These are stretches that are very similar to the ones our PT started us out on: http://www.orthoseek.com/articles/ifs-right.html Kami Kiley 3 Keenan Doc band 3 weeks. shosh428 <Shosh428@...> wrote: My daughter just turned 4 months old. She has torticolis and we have been repositioning since birth but not really aggressively since about 3 months of age. I took her to CT this week and they said she is mild/moderate and they didn't immediately recommend a band, but

did say she is a good candidate. Not sure what that means. I havent spoken to the pediatrician yet (we have an appointment on Monday) but right now I'm leaning towards doing it. My feeling is...Why not? It can't hurt. Right?Her measurements are: Cranial Vault Assymetry 10 mmMid-Face Assymetry 4 mmSkull-Base Asymmetry 3 mmSInce she is so young I know we could see good results. We havent even started physical therapy yet for the torticolis since she was just diagnosed and the government agency that arranges it is extremely slow. Ive been doing exercises with her on my own, been repositioning like crazy, I havent put her in the bouncy seat or swing even once since she was diagnosed with torticolis about a month ago. But im wondering if repositioning on its own will really work. Any advice?-Shosh

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[Guest guest]

Repositioning can work on its own - but doesn't always. I'm not sure

why but some succeed and other don't. It is a good idea to take pics

that show the plagio every 2 weeks, and see if you're making progress.

If you don't see improvement, then it isn't working. There are several

moms on board who have done successful repo including Becky (one of

the moderators) and Angie. There are other moms who tried it without

improvement.

Our doc (cranial facial plastic surgeon) recommends banding at 10mm or

above, so by that criteria you're borderline. However some band at

lower numbers(8). There are repo tips in the files section of the

group. You do still have some time to decide, but you would be fine

deciding to band now too.

take care. -christine

sydney 2 yrs starband grad

>

> My daughter just turned 4 months old. She has torticolis and we

> have been repositioning since birth but not really aggressively since

> about 3 months of age. I took her to CT this week and they said she

> is mild/moderate and they didn't immediately recommend a band, but

> did say she is a good candidate. Not sure what that means. I havent

> spoken to the pediatrician yet (we have an appointment on Monday) but

> right now I'm leaning towards doing it. My feeling is...Why not? It

> can't hurt. Right?

> Her measurements are: Cranial Vault Assymetry 10 mm

> Mid-Face Assymetry 4 mm

> Skull-Base Asymmetry 3 mm

>

> SInce she is so young I know we could see good results. We havent

> even started physical therapy yet for the torticolis since she was

> just diagnosed and the government agency that arranges it is

> extremely slow. Ive been doing exercises with her on my own, been

> repositioning like crazy, I havent put her in the bouncy seat or

> swing even once since she was diagnosed with torticolis about a month

> ago. But im wondering if repositioning on its own will really work.

> Any advice?

>

> -Shosh

>

[Guest guest]

Welcome.

The intestinal obstruction, below the growth curve, siezures and

wierd celiac thing scream metabolic and/or allergy to me, a nondoc.

If you are in NJ I encourage you to see Dr. Verma at CHOP. They have

two NJ offices. Her nurse, Collette does the scheduling. Tell her

your story and she will help you. My son walked that late and talked

late and some overlap is present in our stories. I have not cracked

our code but allergy and gut are part of the deal.

There is supposed to be a good neurodevelopmental pediatrician in

Flemington. If you need the name I will get it for you. There is Dr.

Agin's practice. If she is no longer seeing newbies her partners are.

Please read Feast Without Yeast (my new bible). Milk is a suspect in

my mind for you. My cousin's kid had that obstruction and it was

tracemilk they forgot to avoid that caused it. In an 11 month old

milk is so prominent in diet so that is why I mention it.

Best wishes!

Liz

>

> Hello everyone! Just a (not so)quick introduction...

>

> My youngest daughter, Hannah, is 26 months old and has no words at

> all. We do not have any official diagnosis at this point, just

lots

> of doctors and no answers. She's been a bit of a puzzle to the

> doctors from the start. Besides being a non-talker, she's had non-

> febrile seizures(at birth and 2 after 18 mos), is well below the

> growth curve, had an intussception (intestinal obstruction)at 11

mos,

> and was a late walker(19 mos). She's been tested for everything

they

> could think of from celiac to cystic fibrosis, even rett syndrome,

> and everything came back normal or near normal. The initial celiac

> was abnormal, but the more comprehensive one was fine. Her hearing

> is ok, though she did fail the newborn screening and for the first

18

> months her tests with the audiologist indicated a mild loss in one

> ear. The most recent ABR came back normal. The developmental

> pediatrician mentioned something about epileptic aphasia (landau

> something syndrome), but he said she really didn't fit it. He was

> going to look into it more and see if he could get copies of her

> MRI's (they were done in FL and we are now in NJ with all new

doctors)

> We go back at the end of Feb and hopefully will get a little

> further.

>

> Hannah had about a month of ST before we moved and she was starting

> to learn a couple of signs. She's pretty stubborn about using them

> when we ask her to, but I think she knows please, more, eat and

> read. Sometimes it's hard to tell if she knows it or just made a

> lucky guess lol. She made her own signs for milk and all done

which

> she uses regularly, and of course she's an expert at getting what

she

> wants by pointing and grunting. She's supposed to start getting

> services with early intervention in the next couple of weeks. They

> want to start with developmental therapy? instead of speech, which

I

> am unsure of but we'll go with it for a little bit. She really

> doesn't have a full range of sounds, so maybe that's why they're

> starting where they are.

>

> Anyway, I'm hoping to get some info and " meet " some people who are

> going through similar things. My friends and family have used up

> their appeasing words like " she'll catch up " , or stories of kids

> they've heard of who just blurted out full sentences at 5 years

old.

> It's getting harder as she's getting older and her delays are

> becoming more obvious. I know she's starting to get frustrated

with

> not being able to communicate also.

>

> Sorry for rambling so long!

>

>

>

[Guest guest]

Thanks for the welcome and the recommendations. I have always

thought her problems have got to be somehow related, but the doctors

always brush that off. The closest we'ge gotten to a doc going in

that direction is the Developmental ped. looking at the seizures

relating to the not talking.

When her first celiac came back abnormal, I read up on it a little

and felt like that may be our answer. It seemed to fit, especially

with the intussussception and delayed growth. I debated trying the

gluten free diet even after the other tests came back negative, but

haven't done it yet. It'll be near impossible to keep her gluten

free unless I keep the rest of us on the diet too, and that will be

expensive. Maybe cutting out milk first is the way to go. I just

don't know what to do. Wish there was an easy answer... My head is

ready to explode from all the different things I've been reading

online.

WHat kind of Dr is Dr Verma? We've been to so many doctors I feel

bad to take her to yet another, but if they can help, it'd be worth

it!

> >

> > Hello everyone! Just a (not so)quick introduction...

> >

> > My youngest daughter, Hannah, is 26 months old and has no words

at

> > all. We do not have any official diagnosis at this point, just

> lots

> > of doctors and no answers. She's been a bit of a puzzle to the

> > doctors from the start. Besides being a non-talker, she's had

non-

> > febrile seizures(at birth and 2 after 18 mos), is well below the

> > growth curve, had an intussception (intestinal obstruction)at 11

> mos,

> > and was a late walker(19 mos). She's been tested for everything

> they

> > could think of from celiac to cystic fibrosis, even rett

syndrome,

> > and everything came back normal or near normal. The initial

celiac

> > was abnormal, but the more comprehensive one was fine. Her

hearing

> > is ok, though she did fail the newborn screening and for the

first

> 18

> > months her tests with the audiologist indicated a mild loss in

one

> > ear. The most recent ABR came back normal. The developmental

> > pediatrician mentioned something about epileptic aphasia (landau

> > something syndrome), but he said she really didn't fit it. He

was

> > going to look into it more and see if he could get copies of her

> > MRI's (they were done in FL and we are now in NJ with all new

> doctors)

> > We go back at the end of Feb and hopefully will get a little

> > further.

> >

> > Hannah had about a month of ST before we moved and she was

starting

> > to learn a couple of signs. She's pretty stubborn about using

them

> > when we ask her to, but I think she knows please, more, eat and

> > read. Sometimes it's hard to tell if she knows it or just made a

> > lucky guess lol. She made her own signs for milk and all done

> which

> > she uses regularly, and of course she's an expert at getting what

> she

> > wants by pointing and grunting. She's supposed to start getting

> > services with early intervention in the next couple of weeks.

They

> > want to start with developmental therapy? instead of speech,

which

> I

> > am unsure of but we'll go with it for a little bit. She really

> > doesn't have a full range of sounds, so maybe that's why they're

> > starting where they are.

> >

> > Anyway, I'm hoping to get some info and " meet " some people who

are

> > going through similar things. My friends and family have used up

> > their appeasing words like " she'll catch up " , or stories of kids

> > they've heard of who just blurted out full sentences at 5 years

> old.

> > It's getting harder as she's getting older and her delays are

> > becoming more obvious. I know she's starting to get frustrated

> with

> > not being able to communicate also.

> >

> > Sorry for rambling so long!

> >

> >

> >

>

[Guest guest]

I thought I replied to this last night, but I don't see it here so..

Thanks for the welcome and the doctor recommendations. I looked up

Dr. Verma. We have a gastro. already, but I may go ahead and see if

I can talk with Dr. Verma's nurse to see what she thinks. I asked

for copies of the test results from the second celiac bloodwork, but

have not gotten them yet. I'd like to have them before talking with

another doctor. I have felt all along that Hannah's problems may be

related in some way. The closest we've gotten to a doctor agreeing

with that is the developmental ped. looking into the seizures and

speech delay, but I still feel like we're missing something.

Is Feast Without Yeast a cookbook, or more of an informational book?

I do not quite understand the whole yeast connection. I guess I just

have to keep reading and learning.

Thanks again!

> >

> > Hello everyone! Just a (not so)quick introduction...

> >

> > My youngest daughter, Hannah, is 26 months old and has no words

at

> > all. We do not have any official diagnosis at this point, just

> lots

> > of doctors and no answers. She's been a bit of a puzzle to the

> > doctors from the start. Besides being a non-talker, she's had

non-

> > febrile seizures(at birth and 2 after 18 mos), is well below the

> > growth curve, had an intussception (intestinal obstruction)at 11

> mos,

> > and was a late walker(19 mos). She's been tested for everything

> they

> > could think of from celiac to cystic fibrosis, even rett

syndrome,

> > and everything came back normal or near normal. The initial

celiac

> > was abnormal, but the more comprehensive one was fine. Her

hearing

> > is ok, though she did fail the newborn screening and for the

first

> 18

> > months her tests with the audiologist indicated a mild loss in

one

> > ear. The most recent ABR came back normal. The developmental

> > pediatrician mentioned something about epileptic aphasia (landau

> > something syndrome), but he said she really didn't fit it. He

was

> > going to look into it more and see if he could get copies of her

> > MRI's (they were done in FL and we are now in NJ with all new

> doctors)

> > We go back at the end of Feb and hopefully will get a little

> > further.

> >

> > Hannah had about a month of ST before we moved and she was

starting

> > to learn a couple of signs. She's pretty stubborn about using

them

> > when we ask her to, but I think she knows please, more, eat and

> > read. Sometimes it's hard to tell if she knows it or just made a

> > lucky guess lol. She made her own signs for milk and all done

> which

> > she uses regularly, and of course she's an expert at getting what

> she

> > wants by pointing and grunting. She's supposed to start getting

> > services with early intervention in the next couple of weeks.

They

> > want to start with developmental therapy? instead of speech,

which

> I

> > am unsure of but we'll go with it for a little bit. She really

> > doesn't have a full range of sounds, so maybe that's why they're

> > starting where they are.

> >

> > Anyway, I'm hoping to get some info and " meet " some people who

are

> > going through similar things. My friends and family have used up

> > their appeasing words like " she'll catch up " , or stories of kids

> > they've heard of who just blurted out full sentences at 5 years

> old.

> > It's getting harder as she's getting older and her delays are

> > becoming more obvious. I know she's starting to get frustrated

> with

> > not being able to communicate also.

> >

> > Sorry for rambling so long!

> >

> >

> >

>

[Guest guest]

Dr. Verma is a gastroeneterologist and can help you rule in or out

gluten. The elimination diets do not have to be expensive. Yes,

organic is expensive but the truth is, when you are eating the right

food you tend to eat a lot less because what you are eating is

nutrient dense.

What exactly came back on the panel. Dr. Verma tells me ttg is 98%

predictive for kids. Elevation in the others, I think, may indicate

other unaddressed allergy.

> > >

> > > Hello everyone! Just a (not so)quick introduction...

> > >

> > > My youngest daughter, Hannah, is 26 months old and has no

words

> at

> > > all. We do not have any official diagnosis at this point, just

> > lots

> > > of doctors and no answers. She's been a bit of a puzzle to the

> > > doctors from the start. Besides being a non-talker, she's had

> non-

> > > febrile seizures(at birth and 2 after 18 mos), is well below

the

> > > growth curve, had an intussception (intestinal obstruction)at

11

> > mos,

> > > and was a late walker(19 mos). She's been tested for

everything

> > they

> > > could think of from celiac to cystic fibrosis, even rett

> syndrome,

> > > and everything came back normal or near normal. The initial

> celiac

> > > was abnormal, but the more comprehensive one was fine. Her

> hearing

> > > is ok, though she did fail the newborn screening and for the

> first

> > 18

> > > months her tests with the audiologist indicated a mild loss in

> one

> > > ear. The most recent ABR came back normal. The developmental

> > > pediatrician mentioned something about epileptic aphasia

(landau

> > > something syndrome), but he said she really didn't fit it. He

> was

> > > going to look into it more and see if he could get copies of

her

> > > MRI's (they were done in FL and we are now in NJ with all new

> > doctors)

> > > We go back at the end of Feb and hopefully will get a little

> > > further.

> > >

> > > Hannah had about a month of ST before we moved and she was

> starting

> > > to learn a couple of signs. She's pretty stubborn about using

> them

> > > when we ask her to, but I think she knows please, more, eat and

> > > read. Sometimes it's hard to tell if she knows it or just made

a

> > > lucky guess lol. She made her own signs for milk and all done

> > which

> > > she uses regularly, and of course she's an expert at getting

what

> > she

> > > wants by pointing and grunting. She's supposed to start getting

> > > services with early intervention in the next couple of weeks.

> They

> > > want to start with developmental therapy? instead of speech,

> which

> > I

> > > am unsure of but we'll go with it for a little bit. She really

> > > doesn't have a full range of sounds, so maybe that's why

they're

> > > starting where they are.

> > >

> > > Anyway, I'm hoping to get some info and " meet " some people who

> are

> > > going through similar things. My friends and family have used

up

> > > their appeasing words like " she'll catch up " , or stories of

kids

> > > they've heard of who just blurted out full sentences at 5 years

> > old.

> > > It's getting harder as she's getting older and her delays are

> > > becoming more obvious. I know she's starting to get frustrated

> > with

> > > not being able to communicate also.

> > >

> > > Sorry for rambling so long!

> > >

> > >

> > >

> >

>

[Guest guest]

Feast without yeast is a book that explains the yeast connection is a

list of maladies. It also reviews elimination procedures to find the

right diet. Lastly, they do the cookbook thing.

I want to say this the most polite way possible. You do not want a

dr. to agree with you per se but what you need is a doctor who is

listening and explains why he or she ruled something in or out and

what is simply unknown. That is what you will find with Dr. Verma.

> > >

> > > Hello everyone! Just a (not so)quick introduction...

> > >

> > > My youngest daughter, Hannah, is 26 months old and has no

words

> at

> > > all. We do not have any official diagnosis at this point, just

> > lots

> > > of doctors and no answers. She's been a bit of a puzzle to the

> > > doctors from the start. Besides being a non-talker, she's had

> non-

> > > febrile seizures(at birth and 2 after 18 mos), is well below

the

> > > growth curve, had an intussception (intestinal obstruction)at

11

> > mos,

> > > and was a late walker(19 mos). She's been tested for

everything

> > they

> > > could think of from celiac to cystic fibrosis, even rett

> syndrome,

> > > and everything came back normal or near normal. The initial

> celiac

> > > was abnormal, but the more comprehensive one was fine. Her

> hearing

> > > is ok, though she did fail the newborn screening and for the

> first

> > 18

> > > months her tests with the audiologist indicated a mild loss in

> one

> > > ear. The most recent ABR came back normal. The developmental

> > > pediatrician mentioned something about epileptic aphasia

(landau

> > > something syndrome), but he said she really didn't fit it. He

> was

> > > going to look into it more and see if he could get copies of

her

> > > MRI's (they were done in FL and we are now in NJ with all new

> > doctors)

> > > We go back at the end of Feb and hopefully will get a little

> > > further.

> > >

> > > Hannah had about a month of ST before we moved and she was

> starting

> > > to learn a couple of signs. She's pretty stubborn about using

> them

> > > when we ask her to, but I think she knows please, more, eat and

> > > read. Sometimes it's hard to tell if she knows it or just made

a

> > > lucky guess lol. She made her own signs for milk and all done

> > which

> > > she uses regularly, and of course she's an expert at getting

what

> > she

> > > wants by pointing and grunting. She's supposed to start getting

> > > services with early intervention in the next couple of weeks.

> They

> > > want to start with developmental therapy? instead of speech,

> which

> > I

> > > am unsure of but we'll go with it for a little bit. She really

> > > doesn't have a full range of sounds, so maybe that's why

they're

> > > starting where they are.

> > >

> > > Anyway, I'm hoping to get some info and " meet " some people who

> are

> > > going through similar things. My friends and family have used

up

> > > their appeasing words like " she'll catch up " , or stories of

kids

> > > they've heard of who just blurted out full sentences at 5 years

> > old.

> > > It's getting harder as she's getting older and her delays are

> > > becoming more obvious. I know she's starting to get frustrated

> > with

> > > not being able to communicate also.

> > >

> > > Sorry for rambling so long!

> > >

> > >

> > >

> >

>

[Guest guest]

After doing a little research, I ordered the book this afternoon.? Can't wait

for it to come in the mail.?

I know what you mean about not looking for a doctor to " agree " with us.? What I

want is someone who doesn't brush off my concerns and gives me all the

information.? That is not what I have gotten so far.? But,?to be fair,? I'm

waiting to hear more from our current gastro. after she reviews Hannah's 3 day

food journal.? She didn't break down the celiac results for me when she called,

just said it came back " normal " .? I hope she will explain a little more when we

go back for the follow up why one came back abnormal and the other was fine.?

[ ] Re: New here

Feast without yeast is a book that explains the yeast connection is a

list of maladies. It also reviews elimination procedures to find the

right diet. Lastly, they do the cookbook thing.

I want to say this the most polite way possible. You do not want a

dr. to agree with you per se but what you need is a doctor who is

listening and explains why he or she ruled something in or out and

what is simply unknown. That is what you will find with Dr. Verma.

> > >

> > > Hello everyone! Just a (not so)quick introduction...

> > >

> > > My youngest daughter, Hannah, is 26 months old and has no

words

> at

> > > all. We do not have any official diagnosis at this point, just

> > lots

> > > of doctors and no answers. She's been a bit of a puzzle to the

> > > doctors from the start. Besides being a non-talker, she's had

> non-

> > > febrile seizures(at birth and 2 after 18 mos), is well below

the

> > > growth curve, had an intussception (intestinal obstruction)at

11

> > mos,

> > > and was a late walker(19 mos). She's been tested for

everything

> > they

> > > could think of from celiac to cystic fibrosis, even rett

> syndrome,

> > > and everything came back normal or near normal. The initial

> celiac

> > > was abnormal, but the more comprehensive one was fine. Her

> hearing

> > > is ok, though she did fail the newborn screening and for the

> first

> > 18

> > > months her tests with the audiologist indicated a mild loss in

> one

> > > ear. The most recent ABR came back normal. The developmental

> > > pediatrician mentioned something about epileptic aphasia

(landau

> > > something syndrome), but he said she really didn't fit it. He

> was

> > > going to look into it more and see if he could get copies of

her

> > > MRI's (they were done in FL and we are now in NJ with all new

> > doctors)

> > > We go back at the end of Feb and hopefully will get a little

> > > further.

> > >

> > > Hannah had about a month of ST before we moved and she was

> starting

> > > to learn a couple of signs. She's pretty stubborn about using

> them

> > > when we ask her to, but I think she knows please, more, eat and

> > > read. Sometimes it's hard to tell if she knows it or just made

a

> > > lucky guess lol. She made her own signs for milk and all done

> > which

> > > she uses regularly, and of course she's an expert at getting

what

> > she

> > > wants by pointing and grunting. She's supposed to start getting

> > > services with early intervention in the next couple of weeks.

> They

> > > want to start with developmental therapy? instead of speech,

> which

> > I

> > > am unsure of but we'll go with it for a little bit. She really

> > > doesn't have a full range of sounds, so maybe that's why

they're

> > > starting where they are.

> > >

> > > Anyway, I'm hoping to get some info and " meet " some people who

> are

> > > going through similar things. My friends and family have used

up

> > > their appeasing words like " she'll catch up " , or stories of

kids

> > > they've heard of who just blurted out full sentences at 5 years

> > old.

> > > It's getting harder as she's getting older and her delays are

> > > becoming more obvious. I know she's starting to get frustrated

> > with

> > > not being able to communicate also.

> > >

> > > Sorry for rambling so long!

> > >

> > >

> > >

> >

>

________________________________________________________________________

More new features than ever. Check out the new AOL Mail ! -

http://webmail.aol.com

[Guest guest]

For what it is worth we had milk-related siezures.

> > >

> > > Hello everyone! Just a (not so)quick introduction...

> > >

> > > My youngest daughter, Hannah, is 26 months old and has no

words

> at

> > > all. We do not have any official diagnosis at this point, just

> > lots

> > > of doctors and no answers. She's been a bit of a puzzle to the

> > > doctors from the start. Besides being a non-talker, she's had

> non-

> > > febrile seizures(at birth and 2 after 18 mos), is well below

the

> > > growth curve, had an intussception (intestinal obstruction)at

11

> > mos,

> > > and was a late walker(19 mos). She's been tested for

everything

> > they

> > > could think of from celiac to cystic fibrosis, even rett

> syndrome,

> > > and everything came back normal or near normal. The initial

> celiac

> > > was abnormal, but the more comprehensive one was fine. Her

> hearing

> > > is ok, though she did fail the newborn screening and for the

> first

> > 18

> > > months her tests with the audiologist indicated a mild loss in

> one

> > > ear. The most recent ABR came back normal. The developmental

> > > pediatrician mentioned something about epileptic aphasia

(landau

> > > something syndrome), but he said she really didn't fit it. He

> was

> > > going to look into it more and see if he could get copies of

her

> > > MRI's (they were done in FL and we are now in NJ with all new

> > doctors)

> > > We go back at the end of Feb and hopefully will get a little

> > > further.

> > >

> > > Hannah had about a month of ST before we moved and she was

> starting

> > > to learn a couple of signs. She's pretty stubborn about using

> them

> > > when we ask her to, but I think she knows please, more, eat and

> > > read. Sometimes it's hard to tell if she knows it or just made

a

> > > lucky guess lol. She made her own signs for milk and all done

> > which

> > > she uses regularly, and of course she's an expert at getting

what

> > she

> > > wants by pointing and grunting. She's supposed to start getting

> > > services with early intervention in the next couple of weeks.

> They

> > > want to start with developmental therapy? instead of speech,

> which

> > I

> > > am unsure of but we'll go with it for a little bit. She really

> > > doesn't have a full range of sounds, so maybe that's why

they're

> > > starting where they are.

> > >

> > > Anyway, I'm hoping to get some info and " meet " some people who

> are

> > > going through similar things. My friends and family have used

up

> > > their appeasing words like " she'll catch up " , or stories of

kids

> > > they've heard of who just blurted out full sentences at 5 years

> > old.

> > > It's getting harder as she's getting older and her delays are

> > > becoming more obvious. I know she's starting to get frustrated

> > with

> > > not being able to communicate also.

> > >

> > > Sorry for rambling so long!

> > >

> > >

> > >

> >

>

[Guest guest]

You are looking for what I found in Dr. Verma. We all had technically

normal panels but the individual components were off. That is how we

knew to search further thanks to Dr. Morries' help.

>

> After doing a little research, I ordered the book this afternoon.?

Can't wait for it to come in the mail.?

>

> I know what you mean about not looking for a doctor to " agree " with

us.? What I want is someone who doesn't brush off my concerns and

gives me all the information.? That is not what I have gotten so

far.? But,?to be fair,? I'm waiting to hear more from our current

gastro. after she reviews Hannah's 3 day food journal.? She didn't

break down the celiac results for me when she called, just said it

came back " normal " .? I hope she will explain a little more when we go

back for the follow up why one came back abnormal and the other was

fine.?

[Guest guest]

I am just now reading the library of books I bought during my search

for whatever hit my family. You mentioned a dairy removal trial.

Arguments have erupted over this issue on this board. Often times a

trial is the only way to know. However, I just started reading " Is

this your child? " and I am furious that its author (of a 20 year old

book) could have told me in 2 seconds flat we had a milk allergy. The

true milk allergy to casein I believe is what exists in my speech

kid. My daughter benefitted as well. Hers would be considered a

sensitivity but that I would not have seen without elimination. If

you feel like getting another book I'd recommend it for allergy

recognition. The Rotation Diet Theory is questionable in there

because as Dr. recently posted, elimination is what is

warrantted with true allergy. She talks a lot about yeast in there

and there is a yeast checklist in The Yeast Connection as well. I am

not trying to give you homework. Just trying to pass down what

helped. Seems I did it the hard way. If I can somehow make it more

efficient for you I'd like to.

[Guest guest]

Really?? I have never heard of milk related seizures.? I'll have to do some

research on that.? I don't know if her neonatal seizures are in any way related

to the later ones, if so milk is probably not the issue there, but it's worth

looking into.?

[ ] Re: New here

For what it is worth we had milk-related siezures.

[Guest guest]

May want to google epilepsy instead of seizures because if you

google " milk seizures " most has to do with the outrage of raw milk

being pulled from the large and growing group of people like me that

want to purchase it!

Not saying that this is credible -but if you are exploring milk

seizures may want to explore why some believe it to be part of the

cure/or the cure.

" The diet should include a moderate amount of raw milk preferably

goat's milk and milk products such as raw butter and homemade cottage

cheese. The diet should eliminate completely all animal proteins,

except milk, as they not only lack in magnesium,but also rob the body

of its own magnesium storage as well as of vitamin B6. "

http://www.natural-advice.com/epilepsy.htm

" Dr. in Britain, cured himself of epilepsy by living

exclusively on milk for 17 years. "

http://www.realmilk.com/crime-against-raw-milk.html

And some info on food triggered seizures

How to Avoid Food Triggered Seizures

Many things can cause seizures: brain injuries, neurological problems

you're born with, or possibly even certain foods, drugs, and hormones

and emotions. Often, foods and other lifestyle choices can aggravate

an existing neurological problem and even if not, staying informed

and taking care of what you eat is an important part of any medical

management plan. The information here is intended to give you a

starting point if you suspect that your diet or lifestyle may be

affecting your health.

http://www.wikihow.com/Avoid-Food-Triggered-Seizures

=====

[Guest guest]

The idea would be a cerebral allergy. We had siezures when the entire

diet was milk. It was formula and he had other issues with it. In

hindsight I believe it was the milk protein, the aluminum and the

fluoride in the water we used.

>

> Really?? I have never heard of milk related seizures.? I'll have to

do some research on that.? I don't know if her neonatal seizures are

in any way related to the later ones, if so milk is probably not the

issue there, but it's worth looking into.?

>

>

>

> [ ] Re: New here

>

>

>

>

>

>

> For what it is worth we had milk-related siezures.

>

[Guest guest]

Fighting for Tony...I think he has them in there.

>

> Really?? I have never heard of milk related seizures.? I'll have to

do some research on that.? I don't know if her neonatal seizures are

in any way related to the later ones, if so milk is probably not the

issue there, but it's worth looking into.?

>

>

>

> [ ] Re: New here

>

>

>

>

>

>

> For what it is worth we had milk-related siezures.

>

[Guest guest]

,

I've heard both authors of GAPS and BED speak at the most recent

Weston A. Price conference in November and my personal opinion is

that I trust the word of Dr. Natasha -McBride a little more than

I trust that of Donna Gates and Elaine Gotschall (author of Breaking the

Viscous Cycle). Dr. C-McB is a neurologist (actually neurosurgeon) and

a nutritionist with PhD level credentials in both fields (she is in the UK

so PhD is called something else there). And she healed her own son's

severe autism diagnosis through the diet and protocol she spells out

in the GAPS book.

My kids are a little younger (2 and 4) so its easier for me to control what

they eat, but I can understand your frustration. I tend to think that taking

steps to clean up your environment may at least be helpful (i.e. do a

pantry clean out). Think of some dishes your daughter likes that you

can tweak. Use bone broths as much as you can. Put it in spaghetti

sauces, etc. Leave fresh fruit in a bowl in the center of the kitchen.

I think fruit is ok, but I also listen to Dr. C-McB about this one. The idea

is that the fruit sugars and the simple sugars (monosaccharides) are

able to be digested easily without sitting in the gut and giving the

pathogens a chance to feed off of them. It is the complex sugars that

are harder for the body to break down and end up sitting in the gut to

feed the yeasts, bad bacteria, etc. With GAPS you want to stop feeding

the bad guys and start populating the gut with the good guys at the

same time. Although a food might be "OK" according to an allergy

therapist, it doesn't necessarily mean its going to help heal your gut

lining. For example beans. On GAPS all beans are out because of their

starchiness being a food for pathogens, however navy beans are an

exception. Chances are you are not having allergic reactions to beans

and so an allergist/allergy therapist might not identify it as ok/not ok

in your diet, however they are best avoided because they feed the

bad guys in your gut.

Oh about focusing on organic fruit. This is where I'm a little torn. I try

to focus on local fruit these days. At this time of the year there is not

much locally available. But I plan to seek out some local farmers / orchards

when it warms up. I do think organic is important, but Dr. C-McB stressed

that the foods we eat travel an average of 1500 miles to get to us. The fruits

and veggies are picked unripe and ripen during their travels. It is the ripest

fruits that have the most nutrition in them. If you get fruits locally the are

going to be the ripest and most nutritious. Right now we are buying some

frozen fruits and using them in smoothies. I feel like at this time of the

year, its the best I can do to get ripe fruits in our diet. I also look for fruits

at Whole Foods that are grown at least within our region of the country and

avoid those grown really far away. The only exception for me so far has been

bananas, which come from South America but we do buy organic for at least

some measure of safety.

Hope that helps to explain. I'm sure you're receive lots of advice and support

from others in the group.

Best of luck!

Katy

From: [mailto: ] On Behalf Of sastillingSent: Monday, February 04, 2008 9:50 AM Subject: [ ] New Here

Hi,I am new, but very glad I have found this group. I feel like I have been ill for more years than I can remember, even before I realised it.I want to get better by using bed & gap diet. I find that I need to mix them up a bit. I really struggle with juicing, which is allowed on gaps, but not great on salads, which is allowed on bed.I have just started on a food source probiotic, but this has given me terrible die-off symptoms, which I just can't go through, so maybe I need to go much more slowly.Fruit is one thing I am not sure about; bed doesn't allow much fruit, but gaps does. An allergy therapist has tested me and she said fruit was ok, but grains are bad for me. So maybe I could do fruits, but maybe I should focus on organic fruits.My digestion is rubbish, but I wonder if it is ever possible to recover. I also want to help my daughter recover her health, but I don't know where to start persuading a 14 year old to so radically change her diet, I do all I can, but I think it is too hard for her. It is a shame we have to get really ill before we take notice of our bodies.Sorry to have rambled on, I am just grateful to have a group that might be able to support me through this process.Thanks for reading this.

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.516 / Virus Database: 269.19.19/1257 - Release Date: 2/3/2008 5:49 PM

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[Guest guest]

Regarding organic fruit and veggies, here is a list of the most contaminated with fertilizers and pesticides: http://findarticles.com/p/articles/mi_m0XUK/is_1_3/ai_n17213445 This list sort of helps me when I can't afford organic even though I try to buy as much organic as possible.Katy <katywms@...> wrote: Oh about focusing on organic fruit. This is where I'm a little torn. I try to focus on local fruit these days......The only exception for me so far has

been bananas, which come from South America but we do buy organic for at least some measure of safety.

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Yes, thank you for distributing that. I have seen the dirty dozen list and have forwarded

it to others in the past. Keep in mind that this list is only addressing the chemical treatment

part of growing food. What it doesn't address is genetic modification, which is a whole

other ball of wax. But on the bananas topic, I know its on the "least dirty" list on that link,

but it just makes me feel better to buy organic since the standards for what is acceptable

are likely to be different in other countries. In the stores here organic bananas are only about

5 cents per pound more than regular, so for my peace of mind its worth the extra money.

I also wonder if that dirty dozen list is updated regularly so that if foods move from the

"most dirty" to "least dirty" list, would consumers be made aware of it?

My basic rule is I buy organic whenever I can if I am buying at a store. When I buy from

a local farmer, I talk to them about their practices and decide for myself if I want to buy.

I'm typically not as concerned with the "organic" label if buying locally from an honest

family farm. Because the hoops you have to jump through to use the "organic" label

are usually too costly for the small family farm, yet some do follow organic farming

practices. And the fact that they are local brings it up a notch for me. Also at this time

of year there are really no pests so there is not a lot of pesticides being sprayed right

now.

Getting back to the topic....the local fruit/veggies is what the GAPS author stresses

because of enhanced nutrients.

Katy

From: [mailto: ] On Behalf Of VickSent: Monday, February 04, 2008 1:05 PM Subject: RE: [ ] New Here

Regarding organic fruit and veggies, here is a list of the most contaminated with fertilizers and pesticides: http://findarticles.com/p/articles/mi_m0XUK/is_1_3/ai_n17213445

This list sort of helps me when I can't afford organic even though I try to buy as much organic as possible.Katy <katywmsgmail> wrote:

Oh about focusing on organic fruit. This is where I'm a little torn. I try

to focus on local fruit these days......The only exception for me so far has been

bananas, which come from South America but we do buy organic for at least

some measure of safety.

Looking for last minute shopping deals? Find them fast with Search.

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Checked by AVG Free Edition.

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[Guest guest]

Hi Sara,

I know it’s one more book to look into, but have you read Breaking the Vicious Cycle? Some of the stories at the end, as well as Elaine’s own story, are really inspirational. You can also read them online, as there are many SCD support websites. (SCD is the diet on which Dr. Natasha has based GAPS.) Unfortunately Elaine Gottschall passed away a few years ago, so she can know longer further the research. However, GAPS, SCD, and BED all have something worthwhile to offer, so long as you don’t let yourself get too stressed out trying to implement everything! (It took us a month to phase the legal foods in and illegal ones out.)

Having digestive difficulties is, well, difficult. I remember when I started dealing with IBS 11 years ago, and I would be afraid to go anywhere unless I knew where the toilet was. Now, however, I’m so grateful to the IBS, because that’s what got me on the path to natural medicine and healing. (If someone had told me back then, though, that I’d be grateful for going to the bathroom 8 times a day, I would have blown a gasket.) I am also grateful that I can teach my children (and my clients) these lessons about food and healing that I never knew so that they don’t have to go through what I did.

There are frequently a lot of mental health issues that go along with digestion, especially in adults. So as you are nourishing your body with these wonderful broths and foods that are so healing, I urge you to find ways to nourish your soul, too, whether through the arts, spending time outdoors (planting flowers is very healing), and letting go of past hurts, which can also affect our gut flora the same way a candy bar can.

I find the people in this group to be very caring, so this is a good place to turn for support, too.

Good luck!

Peace,

On 2/4/08 6:50 AM, " sastilling " <sastilling@...> wrote:

Hi,

I am new, but very glad I have found this group. I feel like I have

been ill for more years than I can remember, even before I realised

it.

I want to get better by using bed & gap diet. I find that I need to

mix them up a bit. I really struggle with juicing, which is allowed

on

gaps, but not great on salads, which is allowed on bed.

I have just started on a food source probiotic, but this has given me

terrible die-off symptoms, which I just can't go through, so maybe I

need to go much more slowly.

Fruit is one thing I am not sure about; bed doesn't allow much fruit,

but gaps does. An allergy therapist has tested me and she said

fruit was ok, but grains are bad for me. So maybe I could do fruits,

but maybe I should focus on organic fruits.

My digestion is rubbish, but I wonder if it is ever possible to

recover. I also want to help my daughter recover her health, but I

don't know where to start persuading a 14 year old to so radically

change her diet, I do all I can, but I think it is too hard for her.

It is a shame we have to get really ill before we take notice of our

bodies.

Sorry to have rambled on, I am just grateful to have a group that

might

be able to support me through this process.

Thanks for reading this.