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I just don't understand.


Forum: Children with Special Needs

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  #1  
May 24th, 2012, 07:25 PM
Mega Super Mommy
Join Date: Jul 2008
Location: Richlands NC
Posts: 3,348
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I know there is the very real possibility I won't ever have answers as to why Ray has special needs. I know this but i still continue to search for them, for answers to those questions in my mind. Will he get worse, Is this something progressive? Will he stay the same, and never develop past where he is now? Will he get better, and catch up more or all the way? Is this something I've done wrong or am doing wrong that is making things this way? Along with another million what ifs, whys what, who blah blah blah.

We finally had our neurology appointment tody after asking for a referral several times. The neuro said that the brain controls speech and comprehension etc and since Ray had significant delays in that area he'd do a catscan and see what we see. He also said that Rays other issues are NOT neuro related. Eyes, ears, muscles low tone and strength. His developmental dleays are not related. Only the speech part. The fevers weren't significant if they never found a reason for them, that most likelt they were ALL just something viral. He did the scan and came out and said it was fine, it read normal and we didn't need to follow up thanks theres the exit.

I feel helpless and hopeless. I don't know wether I should pursue a second opnion and put Ray through more tests just because I want to be able to look in the mirror and know that yes, I did everything I could to make sure there wasn't more I could offer him. That I went down every road to make sure something wasn't missed, that I didn't let him down. That I did everything I could to give him the best life there is to have. Is that wrong, or am I torturing my baby!?

I wish I knew what I should do, or where to go to find out what I need to know to do what I need to do so I don't have to watch his heartbreak those times he does comprehend that he can't do things like his brothers and see his heartbreak all over his beautiful face.
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Robert 17,
Heaven-Leigh 15
(TL 1.11.98)
(TR 10.26.06)
Raymond 5
Alexavier 3
Stoney 2
Korbyn 28 week miracle 5/17/13
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  #2  
May 25th, 2012, 09:22 AM
Mega Super Mommy
Join Date: Jun 2007
Location: Knoxville,Tennessee
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Is he in PT and OT? Does he have braces to help with the low tone? I know a few people that have some of these issues so I will ask what specialist they see and try to remember to get back here and let you know.

Can you type our a "short" summary of his issues so I can ask more specifically?
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  #3  
May 25th, 2012, 07:03 PM
Mega Super Mommy
Join Date: Jul 2008
Location: Richlands NC
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He sees OT, PT and ST, as well as play/social therapy and he is getting braces but his PT wants to get his sensory issues under better control before we add the braces. Ray has a 53% developmental delay. He is Mid to high range functioning Autistic.(the doctors dont agree as to what) he is very ADHD. He has some sort of hearing issue, and again they aren't exactly sure what. One doctor said he tested 'at the lower range of acceptable' (??? WTHaywater does that mean even) the other feels it may be an auditory processing disorder. he wears glaases for an eye that turns in and is lazy. I cant rememebr the terms, straibumus?? and something else? he isn a very heavy mouth breather even after having tonsils and adenoids removed. When he does talk it is very nasaley.

I know he met milestones. When he was younger. Then he started getting these fevers. They would last a week or longer and stay consistently at 102-105 with round the clock tylenol and ibuprofen. He would just lay in my arms and stare at me. We spent more time in the ER or docs office than the staff did. He had strep probably 15-20 times in his 4 years. Once he had it three weeks after getting off antibiotics for having strep! If he didn't have strep they always said it must be viral. Hes had pneumonia 4 or 5 times. he had campilabactor jejunei at 10 mths. (From what I understood it is a bacterial infection similair to salmonella?) Ok I think thats it???
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Robert 17,
Heaven-Leigh 15
(TL 1.11.98)
(TR 10.26.06)
Raymond 5
Alexavier 3
Stoney 2
Korbyn 28 week miracle 5/17/13
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  #4  
May 30th, 2012, 01:52 PM
Veteran
Join Date: May 2008
Posts: 117
Hi,
My name is Erin. I have a daughter (3) with a very rare genetic disorder, Mild cerebral palsy (very low tone), and GI and orthopedic disorders. Over the last 3 yars we have been through 4 different neurologist. I have found that it takes time and patients to find someone that is willing to figure out what is going on. With our first neurologist he would just tell me she had 2 strokes it is what it is. the second neurologist confirmed my concerns and worked with us to find a good treatment for her, after a year he retired. the next neurologist told me my daughter did not have a genetic disorder or a seizure disorder. We only saw her once. Finally we have a neurologist that I have confidence in. She is always tryuing to figure out why my daughter suffered 2 strokes. and has always listened to my concerns.

Don't give up. Stay strong and fallow your intuition.

Not sure where you are located but I would get involved with your local regional center if you have one. they usually have a neurologist on staff that may be able to help you. you may also qualify for assistance (ie: respite services, and therapy)
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  #5  
May 30th, 2012, 08:20 PM
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With that list I would definitely suggest shopping around for different Neuros. I know Cincinnati Children's is GREAT!!! We see a few specialists there and MANY at East Tennessee Children's. I would look around for different docs though. It definitely sounds neuro. It took us 4 GI's to get a good one...then she moved. We are now on the forth after her so I am hoping this one works out as well.
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  #6  
May 31st, 2012, 04:43 AM
Mega Super Mommy
Join Date: Jul 2008
Location: Richlands NC
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I think a second opinion is warranted. Now just to fight my doctor for a referral to another neuro.
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Robert 17,
Heaven-Leigh 15
(TL 1.11.98)
(TR 10.26.06)
Raymond 5
Alexavier 3
Stoney 2
Korbyn 28 week miracle 5/17/13
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  #7  
June 1st, 2012, 02:26 PM
mamma_anna's Avatar Mega Super Mommy
Join Date: Feb 2011
Posts: 1,953
I'm sorry I'm a little late to this thread but definitely sending you lots of *HUGS* and *PRAYERS*

I understand the worry and the constant wondering "how much is too much?" None of us want to put our kids through this stuff. It just stinks! BUT you and Ray both deserve to have answers. You may not ever get all of them but that doesn't mean you shouldn't look.It's hard enough caring for our kids when we know what we're up against.

From what you've described I have a hard time believing his issues aren't somehow related and most likely all neurological. It sounds like the neuro you saw doesn't have any idea what he's talking about. The brain controls a heck of a lot more than just speech! Give me a break! Also a CT scan doesn't show everything. He should have done more than just that one test......Climbing off soap box now.

Keep looking til you find a neuro you trust. Also it might be worth consulting with other specialists too. Is he still getting these so called "viruses" and high fevers? Maybe a doctor who specializes in immunology or a genetic specialist might have better insight into what's really going on with Ray. Good luck to both of you.

More *HUGS* and *PRAYERS*
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  #8  
June 2nd, 2012, 11:58 AM
Mega Super Mommy
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mama_Anna RayRay saw an immunologist when he was 14 mths old. They did some bloodwork and said the results showee some things as off, but not enough to be indicative of anything. he said hat Ray is just one of those kids who get high fevers to fight any kind of disturbance in his body. the fevers lasted anohter 2 years. Since he had his tonsils and adenoids out they are infrequent but do come up now and again. We had to drive up to Chapel hill for that! I didn't want to see the neurologist we saw but thats who tricare sent us to. (It is the same neuro who told us you cant see a chiari malformation on a catscan, and obviously you CAN according to the second opinion we sought, and said he was discharging my oldest son. Roberts CM is 1point from needing surgery) I also forgot to add that he said to the nurse he wasnt aymetrical? symetrical? I dont know how relavant that is?
I have thought about genetics but I really don't know where to start with any of it, kinda why I came along here. I needed people to talk to who understood and have been there and done that. I am also hoping that one day I can be helpful to some scared worried mama.

OH!! And I finally added ray to the SN kids post with some pics of him widdle cute face <3
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Robert 17,
Heaven-Leigh 15
(TL 1.11.98)
(TR 10.26.06)
Raymond 5
Alexavier 3
Stoney 2
Korbyn 28 week miracle 5/17/13

Last edited by Tinky; June 2nd, 2012 at 01:03 PM.
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  #9  
June 29th, 2012, 11:45 PM
Happy Song's Avatar Nicole
Join Date: Jan 2010
Posts: 10,797
I just wanted you to know I was thinking of you and Ray and starting down the same road.... Good luck and keep the faith.
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  #10  
February 21st, 2014, 08:41 PM
MamaRuth2011's Avatar Veteran
Join Date: Feb 2012
Location: Springfield, Oregon
Posts: 139
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Quote:
Originally Posted by Tinky View Post
mama_Anna RayRay saw an immunologist when he was 14 mths old. They did some bloodwork and said the results showee some things as off, but not enough to be indicative of anything. he said hat Ray is just one of those kids who get high fevers to fight any kind of disturbance in his body. the fevers lasted anohter 2 years. Since he had his tonsils and adenoids out they are infrequent but do come up now and again. We had to drive up to Chapel hill for that! I didn't want to see the neurologist we saw but thats who tricare sent us to. (It is the same neuro who told us you cant see a chiari malformation on a catscan, and obviously you CAN according to the second opinion we sought, and said he was discharging my oldest son. Roberts CM is 1point from needing surgery) I also forgot to add that he said to the nurse he wasnt aymetrical? symetrical? I dont know how relavant that is?
I have thought about genetics but I really don't know where to start with any of it, kinda why I came along here. I needed people to talk to who understood and have been there and done that. I am also hoping that one day I can be helpful to some scared worried mama.

OH!! And I finally added ray to the SN kids post with some pics of him widdle cute face <3

Rachel,

My son, David, is almost 7 months old (will be on Sunday) and was just diagnosed last Friday as having Chiari Malformation. We are currently waiting on an appointment with the neurologist in Portland Oregon at Doernbecher Childrens Hospital. This is a new thing for me as his sisters and half-brother were born perfectly normal and are still perfectly normal. Any suggestions?
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