Your visit to the Neurodevelopmental Pediatrician---Bridget

[Guest guest]

I will repost this to the board but I want to share some stuff with you

that may help you. You are doing a brave thing right now by going to a

specialist who treats kids with a diagnosis you are hoping with every

fiber of your being, that your child does not have. You are still pulled

toward this specialist because you have seen things, things that scare

you and things you knew in your heart that no matter what the doctors

said, no matter what people who know and love you said, were not right.

Let me tell you what I saw in my son and why I went to the

neurodevelopmental pediatrician:

1) Abnormal poop from the first day. Soft serve on and on formula,

breast milk, etc. Blood in the beginning.

2) Nonstop screaming for 18 months. He slept downstairs and when we

brought him upstairs he screamed. Many fights between husband and me.

Husband is an only child. When he complained about this I explained

(loudly) that the world was not all about him as it was in his mother's

home, this was life with 2 kids, one colicky, suck it up. (Many

apologies later and he is the absolute best guy in the world...very

forgiving...marriage better than ever.)

3) When he walked he was so much happier. Absolutely everyone noticed.

It was then that we suspected a gut issue.

4) He screamed at everyone and still was not easily comforted by me

even. Actually he was happiest with my husband, who needed that as my

daughter was the opposite.

5) Despite the big change walking, he never developed language right

from the beginning. The neuro said she did not know why. His first word

was said perfectly the day he started walking, at 18 months. He never

said it again until recently. The words he said after that were few and

far between and some days they were perfect while others were spoken

like he had a hearing impairment despite perfect testing. That is when

we wondered about the ears nonethless.

6) He screamed nonstop at his 1st birthday. That is a popular autism marker.

I put together an idea of what might be going on with him physically

this year when I got sick. I had 6 times where I felt sick as if I had a

UTI. I could pee but it never seened enough, it was brown, and I had

back pain but not in the kidney area. 6 times I was given an antibiotic

despite only testing for a UTI. The reason was that sometimes these

would be preindicators of an infection. I also had head pain. The last

antibiotic put me over the edge. I had ear pain, head pain, could not

think, more brown pee, my belly swelled up like I was very pregnant, I

could not breathe. I took myself off the antibiotic out of despair. The

swelling went down and things got better but this thing made a peekaboo

effect. The breathing thing got worse. Then I felt like I had a button

in my throat and could not eat. I looked up esophogeal cancer, freaked

myself out, went to the dr., then a gastro meanwhile talking to my

cousin ( a dr.) and getting scared. Lots of GI research and it seems I

had signs of gall bladder stuff too for the two years after my son was

born. I also had these UTI symptoms and at times had UTIs. I has blood

stool and GI stuff including an ER visit when pregnant with him. Not

much anyone could do when I was pregnant and these things only peekabood

after he was born. With two small kids to keep me busy I blew them off

and once in a blue moon saw the doc, ran tests, and everything was fine.

Esophogeal cancer was ruled out by a cope and bladder stuff ruled out by

a scan but I could have had some issues that went away I am told...just

not enough to have a gall bladder problem severe enough to take it out.

What I think happened to me:

1) I likely have something celiac or celiac-like that was activated by

the pregnancy.

2) My milk allergy as a baby never went away and was seriously acting up

causing atypical GERD stuff.

3) The metal (I checked...lots of it...aluminum) in the last antibiotic,

which I swigged down with overfluoridated water, put me over the edge.

4) Some of that GERD pain involved hearing loss. That is when I thought

of my son and his history. I cried for days, got busy researching every

way I knew how.

What I think happened to my son:

I think he is gluten sensitive and has a more severe milk allergy than

me. Wuth feeding issues dairy and gluten were his diet so that made

things worse.

Whether you call it autism, PDD NOS, or celiac or a gut-brain

malfunction, my son is on his way out. I have a lot of checking to do on

all of us medically and I will do that. I suspect whatever you call

this, it was caught early enough to repair. I still have to get E in

his diet or through a supplement. I think that and getting rid of

whatever his gut trapped via the trouble he had, will help us further

solve his puzzle.

All I did was look at diet, buy real food, learn to cook, and continue

with therapy. Then I saw results. Fish oil helped more. Seeing doctors

to rule things in and out helped still more. Praying, crying and coming

to the board after reading The Late Talker helped most of all.

I do not know what is wrong with your child. I cannot know that. I don't

even really know for sure anything about my own. I do know that in the

process I found out things about my other, typical child who did odd

things but nothing persuasive and she is now doing well.

I did not go to a DAN! because I wanted to do this mainstream. I want

doctors who ignore these things to see them, treat them and see it again

in other children so they do not have to suffer like my boy. I am not

against DANs but just wish the system was popularized enough to be more

mainstream so we were not guessing. I am relieved that so far I have

seen progress and been able to not have to go. No one knows what the

future holds though and I thank God every day for those DANs who got the

word out. Their work, their literature, along with this site and

, and finally the belief in it all by my family, friends and the

therapist, along with the grace of God (no I am not typically prone to

being so overtly religious but I cannot take the credit for other

peoples work nor God's as none of what happened makes sense to me) got

us this far.

No false advertising here: We still have a child who has issues

puckering to make a kiss. He can do it now, we just have to practice.

His articulation and word count need improvement BUT we have found he is

very smart, very social, and has a lot to say and gets downright

indignant if we are not paying attention.

He is a very precious child, as are all these children on this board,

especially yours.

I am not the best mother. I am not a good cook. I am not the best

housekeeper and I have, at times, been afraid of my own shadow. But

somehow, in my humanity, I walked the path you are now taking and got to

a better place. I hope and pray daily we get to an even better place

with this and that it does not go away. I believe that will happen.

My hope and prayer is that every physical obstacle in your child can be

safely removed so that you can see what the true deal is and how to help

him.

Whatever path you take, whatever label you get, do not ever stop

believing in your child and your ability to help him.

I do not know you but I know you can do this.

All my best wishes headed your way!

Liz