I am sorry

[Guest guest]

I would be very careful as to " diagnosing " your cousin's child who died.

Also, try to be respectful of their parenting choices as they were doing the

best they could with the resources they had.

That said

I have been very vocal as well about this whole milk thing. Come to find out

I had a great uncle (who had a severe milk allergy) on my paternal side who

died of colon cancer young. He loved ice cream and would eat a bowl every

night even though it made him sick. My Grandpa said he " pickled " himself.

Most parents of neuro-typical children will not understand the insatiable

need to research everything related to their child, the drive to make the

child's life better.

_____

From:

[mailto: ] On Behalf Of Liz

Sent: Thursday, September 13, 2007 9:49 AM

Subject: [ ] I am sorry

I know I have turned off a few people on this board. I am on it too

much, very vocal, to some it may seem like my thing is inapplicable to

their kid and my posts are a bother. I do not like to be a bother. The

following is why I am driving so hard at whatever is affected my kids.

We seem to be winning the battle in my home but as anyone who has seen

regression in their child knows that could change so easily. Here is an

old post that explains the fuel to my research fire:

I have been posting so much I am planning on scheduling a " no computer "

day. If you all do not mind, I would like to share some of the fear that

has driven me to dive into research mode on my son's speech condition. I

have always known something was wrong but could never name it. The truth

is had troubles from the beginning (stridors, low tone, bad

pulse ox numbers, etc.) but was never in the NICU. I knew I had a

pediatrician who seemed to either underreact or overreact but I had no

referral requirement so I did check things out along the way (ENT,

cardiology, neuro). All cleared him. I did try to switch pediatricians

over time because it just seemed like ours was in " retirement " mode and

she was against EI and kept telling me that I needed to " stimulate " him

to do the things he was behind in. (Like my own maternal guilt was not

enough). The problem was, I could not get in anywhere else, daughter

needed a medical form filled out for school so back we went.

My son screamed the first 18 months of life, never did tummy time and

was up all night and slept during the day. My " not thinking straight "

mind told me somehow that he was just different than daughter and it

would be OK. I was so focused on the not walking that I failed to notice

the reduced babble, tongue sticking out, drooling and I thought the

constant mouth pain was teething (the kid has enormous teeth). Never

would I have thought failure to thrive as we always called him Big Mike

(the barrel chest). He has lost weight though and is too small I

discovered but still tall. Lastly, with my own issues of losing my mom

so young I was well aware that while all moms worried about their kids

there was definitely a jumping off point for others while I kept on.

Getting EI yet finding no answers as to why bothered me but I was happy

to find answers as to what I could do to help him. Reading the late

talker made me curious about apraxia (now dyspraxia) and concerned that

with difficulty getting it diagnosed I may miss an important window of

time to help him. Going on this board and reading about other kids like

my guy, though most have more breathing troubles and more serious gastro

stuff, made me feel like the gut thing and his past stridors stuff was

one thing a number of us had in common whether the child was PDD Nos,

autistic, speech delayed, all the above. I got some focus and was

fortunate between this board, the help of a cousin doc, and my decision

to send family history questions to a number of family members, I was

pointed in the direction of celiac. A very serious upper GI problem for

me (for over 10 years I have had bad lower GI stuff but never upper)

made me see things in 3-D as to what my son's colick was all about. The

poor baby with the deep raspy voice had heartburn and atypical gerd/ear

stuff without the vomiting and he did have poop issues. GFCF has

relieved some speech stuff, ear stuff and some, but not all, bowel

stuff. Most of that is the milk for him I think. Soy also seems to be a

problem and wheat gives him grainy poop. GFCF took away his bad breath

but now his breath still stinks of a sweet smell. Not sure what that is

about so we'll play with the diet until genetic testing.

I also discovered, nearly accidentally, that the flouridated baby water

my kids and I have been drinking may also have played into this.

I am, at this point, almost learning too much too fast. With that said,

I am more afraid of not looking. On my mom's side there is a cousin,

another , who was born with problems. Initially they were the

same as my son, even less in some ways. He was colicky and low tone but

early on did not have the stridors and pulse ox stuff my guy had. As for

the poop, his mom is not sure because, like all of us I think, abnormal

poop became her normal for a while. Eventually he had problems with

siezures that no one could explain. He never did speak or walk, his

vision was poor, there were questions about his hearing and he was

medicated a lot for siezures, got worse after vaccines, particularly the

MMR vaccine and went to the same gastro I am now taking my guy to. At

the age of 7 that died of a stomach virus. They did an autopsy

and determined that his brain and eyes were perfect, as that of a child

who should have been able to walk, talk, see and hear.

I am not worried that my is going to die. Even with all that is

going on he is actually healthy, barely delayed and I plan on keeping

him that way even with this extreme dietary change. I am worried about

handling this right. I believe that my cousin's had the extreme

version of whatever a number of us in my family have as there are

autoimmune stuff, bowel stuff and neuro stuff throughout the family. I

think his autopsy came out negative and his condition inexplicable

because the siezures were an allergic reaction of sorts and the meds and

other things they had to use to help him may have muddied the waters but

he was not with us long enough for his body to tell the story. I

personally believe his was celiac or celiac-like because of allergy

problems and other stuff in his siblings.

I will never know what happened to him for sure but I have to find out

as much about what's up with my kids to keep them as safe as I can. I

think genetic testing will help. That still leaves me with concerns

about every other thing I do with them medically, particularly the

anesthesia for the scopes. I have no credibility with the doctors

because nobody except the Gastro can agree for sure that they were

siezures. It raises questions about what vaccines to give and when.

Questions I am likely on my own with since asking the question seems to

get me in trouble when it comes to vaccines. Understand I have not even

read the scarey vaccine books so it is not even like I am coming into

this with that as a backdrop.

I guess I am just asking for 's thoughts on my other

theory, anyone's thoughts if they have similar stuff in their family,

and I want you to understand why I post so much and ask annoying

questions. I started out with a simple speech delay I thought and

encountered things I never imagined. Please understand I was not looking

for trouble. It found me.

[Guest guest]

But I am going to have to leave the group! You all are wonderful , but I

really need to get away from this computer and focus more on what I need to

do, as in family, God and work. You will all be in my prayers! Praying you

all have better days, less pain and a very understand and supportive doctor

and family as you travel on the bumpy road of having RA !

Debbie A

Have a great day !

[Guest guest]

Best of luck Debbie A with what you plan on doing now. Will keep you in

my prayers.

Debbie L

-- In , " Debbie Ashbaugh " <tdash@...> wrote:

>

> But I am going to have to leave the group! You all are wonderful ,

but I

> really need to get away from this computer and focus more on what I

need to

> do, as in family, God and work. You will all be in my prayers!

Praying you

> all have better days, less pain and a very understand and supportive

doctor

> and family as you travel on the bumpy road of having RA !

> Debbie A

> Have a great day !

>

>

[Guest guest]

Hi ny,

Beach sounds wonderful !!! Enjoy the sun and nature--it is very healing. Sorry

you're not feeling well'

SuziQ

>

> HI,

> i see my copying and pasting from word did not work well I am so sorry, please

forgive me:(

> not feeling too good, sun comes up in a few hours, think I will go to the

beach.

>

> thanks so much for everything,

> Hugs, ny

>