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he was born one way....then slowly changed.{not autism...}

Posted by on Jan. 21, 2009 at 6:51 AM
  • 25 Replies

i don't get it. i don't get how a child can be born soooo healthy, scoring 10's on his apgar scores.

and then at 2...his body slowly changes and he is a different child.

i don't understand how in the begining of the school year he was "frail" and now he is"declining" just months later.

 

lynden {5} was my healthiest baby. he was 8 lbs which broke records in my family {largest baby born to date before that was 6 lbs 7 oz}

he was beet, beet red when he was born...because he had great o2 intake. he was so robust, strong..... like a bull!

i would hear " wow he will be a line backer some day like his dad"

now i don't hear those things about him anymore.

lynden developed speech on time... he walked early, almost to the day, when he turned nine months old.

he was a very strong child. but around the age of two i noticed his ability to articulate was not improving and he seemed clumsy.

not a big deal. but i also noticed around this time, this little "divit" forming a few inches from the bottom of his sternum.

 i questioned what it was of course...and i was told " it must be familliar" meaning someone ...some where on either side must have had it too.

o.k.... well i am not a dr. and i recognise that. the explaination seemed to make sense.

time goes on and lynden's coordination is not improving. it is becoming obvious that he has a bi-lateral lisp and some other speech issues {again... not delays... he speaks well.. just sounds like sylvester}

and the '"divit"" is now becoming a "hole" as he grows. put him on his back and it looks like you could serve soup in his chest.

i keep bringing it up and eventually during his evals {just a few months ago} the developmental ped makes notr of it and starts questioning me.

she asks me if i have mentioned it to anyone.... "yes...and they told me it was cosmetic and familliar"

she says " no, it's congenital, it's a birth defect....and most of the time it is cosmetic but sometimes it requires surgery"

then she drops it! she just moves on because we are there for a developmental eval.

he ends up with a dx of hypotonia, d.c.d and sensory dysfunction along with apraxia of speech.

at that moment he had a head cold... just a common cold. but this cold would them turn bacterial after a few more weeks. it would spread to his lymph nodes and it would cause much grief.

how does a cold almost kill you? the dr. couldn't give me an answer at that time.

during this cold his hands started turning blue...but he was having issues with dehydration and this bacterial infection...so it made sense to have blueish hands.

he ends up on antibiotics and the cold clears for about a week.....then slowly he starts again.

during a few physical exams over the yrs the dr.s had noted a "decreased lung volume" but never associated it with this "birth defect" i mention to them that he snores and seems to have trouble breathing at night while asleep.....they kind of blow me off.

i go in to have my yearly exam and while my feet are up in the stirrups {right?! lol}

my dr. is going over the information in his eval packet and she says...

" mitch, he has pectus excavatum.....so i am going to refer you to hasbro children's to see a specialist"

"WHAT? why does he need a surgeon?"

she says " well he needs a consult because of his chest"

me " what about his chest? they said it was cosmetic"

her " he needs a consult because it is a moderate case and the c.d.c. thinks he may need surgery, he needs to consult with a surgeon"

his developmental ped said nothing of the sort...now i am upset.

 i go home and look up pectus excavatum and i learn my child is at risk for mitral valve collapse.

now i am scared.... i am referenced over to other articles during my research and i learn that he would have a difficult time with the common cold if he could not expand his lungs enough to clear them.

his hands will turn blue...even when warm, from lack of 02.

when my son breathes his chest goes in....instead of out.

i am watching my child's own body...slowly suffogate him.

the only way to treat this condition is with surgery....where they place bars under the rib cage to correct the growth.

i go to pick him up from school yesterday and before i can tell the teacher he is seeing a pulmonologist monday....she comes up to me, pulls me aside and says

" i'm concerned about lynden"

i say " why...what is going on?"

she says " myself and the other staff have noticed a decline in his over all health... he is very pale, sometimes he appears almost blueish, he has no stamina and that is becoming worse"

i start shaking and i tell her " i have to bring him to see a specialist because his chest is pushing on his lungs"

she asks what she can do and i tell her that she and the nurse can both write letters to this dr. to explain what they have been seeing at school.....so the dr. understands this is not some paranoid mother....this is also trained staff noticing this decline.

 we are also not going to hasbro children's hospital....a trusted friend of mine got me the information for mass general which is a leader in pediatric surgery.

i can't cry.... i can't because i am a stay at home mom and i am always here with these kids....and it will scare them to see me upset.

i can't think... i can't even get a complete thought out right now without sounding like a complete fool.

i can't sleep....which anyone who knows me personally knows is really not like me, i need sleep.

i don't understand..... how a child who was so healthy ,is now so sickly.

i just don't get it.

i am sorry it is so long...and probably ridiculously scattered..... but i am freaking out.

owner of 30andbeyond...jigsaw ribbon...ADMIN of autism, asperger's, pdd awareness
 
 


 




 




 




 

by on Jan. 21, 2009 at 6:51 AM
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Replies (1-10):
Cherish77
by Cherish on Jan. 21, 2009 at 6:58 AM

Oh wow, I am sorry.  This must be very hard for you.  I hope your son gets the help he needs.

raegansmom
by on Jan. 21, 2009 at 6:58 AM

I am VERY sorry!  I have never heard of this disease that your son has, but every mother knows how heartbreaking it is to see your child suffer & you are helpless.  I hope this doctor gives you answers and is able to correct his problems.  Don't be passive-INSIST that he does just that!  No amount of medical school can replace a mothers instinct.  Please keep us updated & I will be praying for your family.

mythic28faerie
by on Jan. 21, 2009 at 6:59 AM

Hang in there Momma....you are in my thoughts and prayers! Think positive....I know it is difficult but try! This too shall pass!     I would question the dr more as to why they are blowing you off and why this was not noticed sooner!  YOU are doing the best you can!

Dawn

Lilypie 2nd Birthday Ticker

supermomofgirls
by on Jan. 21, 2009 at 7:00 AM

I will be praying for you and especialy your son .

momofroni
by on Jan. 21, 2009 at 7:01 AM

{{{HUGS}}} to you and your little one.  I'm so very sorry you guys are going through this.  However, his safety and well being are in your hands.  If you don't get satisfactory answers from this new doctor, get another one.  You know your child best and you know something is wrong.  Don't stop until you find a doctor that will listen to you before permanent damage is done.  I'm not trying to be harsh, but we have to protect our kids and find a doctor willing to help.  I know you are actively doing this, so it will get done.  Best wishes to you both.

 

 





mememomster
by on Jan. 21, 2009 at 7:02 AM

My prayers are going out to you and your family, especially your little guy. Keep pushing til you get answers! Go with your gut feelings, if you don't like answers you get, keep asking the questions til someone listens. Be strong and good luck. And insist he is seen immediately. I know this is sooo scary! Take care of yourself so you can take care of him. Good thoughts are sent your way!

beck_9808
by on Jan. 21, 2009 at 8:13 AM

I would first like to say I am very sorry. After reading your heart wrenching story I went and did some research. It appears that pectus excavatum is rather common, but usually mild, your son obviously has a more extreme case, but corrective surgery is very effective. You and your son will be in my heart and thoughts.

singlemomof2nok
by on Jan. 21, 2009 at 8:13 AM

Oh my goodness, I can only imagine what you are going thru.

Your son and family are in my thoughts and prayers.

JudeandLucy
by on Jan. 21, 2009 at 8:22 AM

I'm so sorry. I completely understand what you're going through. My son was born a healthy 8lbs 6oz, hit all his developmental milestones on time. Then around 12 months I noticed he wasn't gaining weight, to which the pediatrician said it's normal to thin out once he's walking. 2 months after that he was diagnosed with Mosaic Partial Trisomy after a 5 day stay in the hospital for failure to thrive. I took him in for a high fever, and that's what we left with. 17th diagnosed case. It was devistating.

Be strong for your little boy, it's the best thing you can do. Thing's have a way of working out one way or another. Good luck!

small_wonder
by on Jan. 21, 2009 at 8:23 AM

Oh momma i am so sorry! I cannot een begin to imaginecyour pain. Please keep us updated.

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