brain damage

Ann - posted on 01/29/2009

thank you kelly thomas is in a pre skool that speacialise in disabled and children with learning difficulties thomas's brain damaged is due to neglect which makes it worse i will definatly look in to everything you have advised thank u again xx

Kelly - posted on 01/29/2009

Do you have any Sp. Ed Preschools in your area?  My daughter, who is now 18, has CP due to neglect during birth.  I got her into the Early Intervention Program right away and she has been in the public school system since she was 3.   What did the MRI show?   I read that your pediatrician isn't much help...I would switch to someone else, even if you have to drive a little further.  You can always get NEMT (Non Emergency Medical Travel) money through your local DHHR.  There are a lot of agencies out there that will help you.  Unfortunately you sometimes have to hunt for them yourself.     Blessings to you and little Thomas...if you need anything at all...just shout out.   One of my best friends has a daughter with Autism and is very active in the National Chapter so if you need any help or connections there...let me know

Ann - posted on 01/29/2009

thank you for replying unfortunatly it seems america is different to the uk i will search everything u said on the web see id there is summink similar for the uk

Wendi - posted on 01/29/2009

Ann, you need to find a good advicate. they are trained in helping your son with all of the help he deserves. is he on the kattie beckett program? a FEDERAL program to pay all medical, no matter what you make. then I would find the closest childrens hospital, and camp out if need be. the squeaky wheel gets the grease. there is also the few MAYO clinics that specialize in finding out problems. another thought... having CP, is he a shrinners child? if not you need a sponcer, I can help with that. they are great. just email me privitly. as far as the school goes he should be in the 3-5 program on an IEP. contact the state dept of education. if anything eles you can go on the CP for now to get the help he needs while fighting for the rest. let me know....((((((HUGS))))))) BTW.... your are right, I am not sorry, I have an earth angel and so do you.....

Ann - posted on 01/28/2009

thank you wendi first let me tell u how sorry i am for your lil girl but as me im sure your not sorry thomas was my 1st and is my soldier and yes it is tough but the not knowing is tougher everything thomas is today is because of me i feel like im fighting a loosing battle but i wont give up, and karen i have gone thru the skool and every association i can think of but i always end up back at square one all i wanna do is help thomas but it seems the doctors and what not are my barrier

Ann - posted on 01/28/2009

thank you wendi first let me tell u how sorry i am for your lil girl but as me im sure your not sorry thomas was my 1st and is my soldier and yes it is tough but the not knowing is tougher everything thomas is today is because of me i feel like im fighting a loosing battle but i wont give up, and karen i have gone thru the skool and every association i can think of but i always end up back at square one all i wanna do is help thomas but it seems the doctors and what not are my barrier

Karen - posted on 01/28/2009

Where do you live? At age 3 he should quailfy for testing from the local school district. Most school districts have diagonistions that can test your son and place him in a class with other children with simular needs.  You can also call the child study center, or ECI (early childhood intervention) for some help getting him tested and placed in a program that will work on his needs.

Wendi - posted on 01/28/2009

I hear you girl... I fought for 3 years to find out what was wrong with my daughter, being my third child I knew something was wrong, you have to fight, go from Dr. to Dr. until you feel comfort. Do not give up, you can not help him, until you know what is wrong. It is Hard, frustrating, and devistating. but remember God only grants his special angels to special parents.... you are in the hardest part right now. after finally finding out what is going on, you feel as if a weight has been lifted, because now you can deal with it and help him in every way possible.

My Daughter has CP also, with Congenital CMV, Stroke, Calcium covering her brain, left front lobe of the brain is mush, and now we are fighting blindess in the right eye.

Hang in there....

Ildiko - posted on 01/28/2009

I would contact a lawyer about sewing the hospital, and as for the doctors, keep insisting on testing. Go to a Neurologist, have them do another MRI. Keep being a pain in their butts, you need to keep on top of them. If they don't take you seriously go to a different doctor. Call your states early intervention department, just look it up on the web, contact them and see the age limit, if your child is to old for the program ask them where you can go from there to get you child some therapy! My son has developmental delays and the state came, did an assessment and we have had 4 different types of therapy every week for the last 6 months. They are really great. Good luck to you, I hope everything goes well. Be strong and tough, you have to for your child.

Julie - posted on 01/28/2009

Quoting Ann:

brain damage

my son thomas was born with brain damage due to the neglect of the hospital they dropped him off the radar at the age of 1, i had to ask for a reassessment for 6 months before i got one which was days after his 3rd birthday he has had an mri scan since and i am still none the wiser as to wot is wrong with my lil boy i was told it was cerable palsy and now it cud be autism aswell wot can i do? i just want to help my lil man but by not knowing i cant help :(

Anne Arundel County has an infant and toddler program that helps children with any kind of developmental delay. It is a free service provided by our tax dollars. You don't need to be referred by a doctor-any parent has the right to get an assessment for their child and services if needed.

Ann - posted on 01/28/2009

thank u candice i will definatly add you x

Candice - posted on 01/27/2009

Hi Ann...it does sound like Cerebral Palsy...Thomas sounds exactly like what happened to my husband's son...we only found out when he was about 3 or 4 years old and no thanks to the pediatrician either.  One year my husband decided to travel to the Mayo Clinic to see if they could help him...They were VERY helpful...They were totally willing to try to help in any way they could and even suggested some stem cell and vitamin injections which significantly reduced his head swelling and closed up the soft spot even further.  Later on we took him to a hyperbaric oxygen chamber for treatments there which did improve his muscle tone and gave him more strength.  Unfortunately these treatments came out of our own pockets...but well worth the effort!   Candygirl_214@hotmail.com if you would like more info...I would love to help you in any way possible!

Lindsey - posted on 01/27/2009

I don't know if you have had any contact with these people before or if they could help you but it may be worth a call. www.cerebralpalsy-lawyers.co.uk. It may make the hospital take you more seriously. Hope it helps and good luck x

Kristine - posted on 01/27/2009

Then get a new pediatrician. I work with sped kids in the district and the thing I hear over and over from parents is that they have to be proactive regarding their child. Since your current one won't help you, go elsewhere.

I don't know if you have private insurance, but often times major health issues can get you medical help from the state.

Krystal - posted on 01/27/2009

be your own doctor...research his symptoms online and try to find out for yourself what it could be...then I would take him to specialist after specialist until you feel that your getting somewhere with his disorder.

I can't imagine how frusterating and devistating this journey must be for you! someone out there knows or can tell you what is going on with him...but it will probobly be a very long road of specialists. I would drop off all the doctors you have been using because clearly at 3 they haven't gotten anywhere with this. Start from scratch...you try to find out what the possibilities are and take him to a specialist that can at least tell you something...my thoughts are with you and your little man....

Ann - posted on 01/27/2009

yes i have a regular pediatrician but she is usless treats me like a child. ive had no support with thomas apart from my family but none of them have brought up a brain damagedchild

Ann - posted on 01/27/2009

thank you

Kristine - posted on 01/27/2009

DO you have a regular pediatrician? In order to see a specialist she/he needs to refer you. You have a long road ahead of you and it will bring more stress than you can imagine. Find out if there is a support group in your area for parents with disabled children. They can help you in ways you can't imagine.

There are also programs in the school district to help disabled kids at an early age. In my district it is called Birth to 3, and then there is preschool.

Sarah - posted on 01/27/2009

sounds like you need to be forceful and go get what you need for your son. its disgusting that you have been treated like this. there is probably an official complaint to be made, if you ask me! good luck x