Re: need to vent

[Guest guest]

Hello everyone,

I just needed to share with parents of special children. My son is

4 yrs. with PMG and vp shunt. He is a extremely happy little

boy...but is nonverbal has low tone and does not walk but does the

combat crawl. I sometimes find myself so frustrated with friends who

don't seem to really understand what it takes to care for a special

needs child. I have several friends who have more than 2 children and

tell me how difficult it is. I absolutely agree that their lives must

be difficult...juggling everything...but so is mine. One friend

recently said to me that I never complain. I have accepted my son and

daughter's conditions and can only make the best of our lives but I

guess sometimes I just wish someone would acknowledge the struggles I

go thru on a daily basis. No one seems to understand the time

involved in following through on therapies and making sure he is

receiving the best care possible. I am not looking for a pat on the

back but the recognition that raising a child with special needs has

its own unique challenges.

I am also an elementary teacher in an inner city and I get so

frustrated seeing parents not put the time, effort, and love into

nurturing their " healthy " children.

Thanks everyone for listening.....besides my husband....your are

the only ears I have. Rita, Jake (PMG) & (Dandy )

[Guest guest]

Joanne,

I'm not sure how much help I can be, but I'll tell you more about

Ethan. He is 18 months old. Took a bottle for 3 months, then quit.

Found out he aspirated and had poor suck and swallow skills. He is

completely g-tube fed. He has a submucous cleft palate which we

think contributes to some swallowing problems. He also has PMG, an

underdeveloped brain stem, deletion of chromosome 13, severe reflux,

nissem, pyloroplasty.

Ethan has always spit up since birth due to the reflux. After he had

the nissem and g-tube he still gagged but couldn't spit up. I think

some of the gagging is neurological and some is a protective thing.

We have had 2 different swallow studies done. The first was a video

swallow. This is where they do the flouroscopy x-ray while he eats

to see how the food travels. It showed minor aspirates. The 2nd we

had done last month. It is a FEEs study (not sure what that stands

for). This is where the ENT sticks a small camera down his nose to

watch his vocal cord area as they give him small amounts of colored

water. By doing this we saw that he tends to let the fluid pool at

the back of his throat for a long time before swallowing. He can

feel it, but has delayed swallowing. This was done to see how he

handled his own secretions.

If your son is retching alot with eating, then I would look at maybe

reflux. If that is negative, maybe he has enlarged adenoids or

tonsils? Also, I have heard that people can have floppy epoglottis.

Even if you have never seen him reflux, he could have esophagitis,

which can only be diagnosed by doing an endoscopy (a tube down the

throat).

Hope this helps,

> Hi ,

> You said that your son gags. Can you tell me more. Our son is 8

with right

> side pmg. He started having seizures at 5, but prior to that his

only problem

> was left sided hemiparesis. Since seizures began he is has

language delay,

> processing delay among many other things and about a year ago this

gagging

> thing started. He is hungry and does eat, but is very particular

about where and

> when and sometimes he just can't do it or he tries and gags. He

had a swallow

> study done which was normal, but I think there is something wrong

and he is

> losing weight. I would appreciate any information you may have.

> Thank you,

> Joanne, mom to Larry -pmg 8 yrs old and Caitlin - 4 yrs old

neurotypical

>

>

>

[Guest guest]

Thank you for all of your information. Larry has an apointment with his

ENT on Thursday already so I will be sure to ask him about these other tests.

Joanne