Answers????

4yr. old daughter, Numerous disorders and conditions does your child have this rare combination of conditions?
My 4yr. old daughter is our special Gift from God! We want to be able to know what her future holds for her. She has been diagnosed with the following. Partial Agenisis of Corpus Callusom, Seizure Disorder,  Brain Atrophy, Hydrocephalus, Hypothyroidism, Cerebral Palsy (lose muscle), Pervasive Developmental Disorder, Failure to Thrive and other conditions attached to each disorder. She is unable to crawl, talk, walk, or feed self. She can sit up unassisted when placed in the sitting position. She has difficult gaining weight. She eats good and is on Vital Jr for extra calories. But she reaches a weight and stays there for 6 months to a yr. She is 3ft 3 in tall and weights 26 lbs 11 oz. She receives OT, PT, Speech Therapy and has a Preschool Teacher that comes in twice a week. She has improved but is still developmental about 1 yrs old in alot of things. Developmental she ranges anywhere from 6 months to 2 yrs depending on what it is.
If your child has some of this disorders or conditions I am looking for a name of a Syndrome or anything that we can put a name to this and see what her future holds. Take Care and God Bless!

[dollyn]

I am so sorry.  look up   -    landau kleffner syndrome

The best thing I can tell you is to pray a lot. Don't give up on your Daughter and don't let anyone tell you that she will never be able to do things.Fight for her you are her only voice. Make the Doctors and other do things for her that you want done.

I am here for you if you need to talk.

[dollyn]

also look this up to  -   lawda kleffner syndrome

praying for your Daughter and your family.

[dollyn]

I just notice I wrote the same to places to look at. I meant to put another place for you to look up.


lenoxx gastro syndrome

[kksmom1214]

Thank you so much for the info. We are a very positive family! She is such a blessing on our lives and has made us so strong! I have had to stand up for her rights so many times! That is what I always tell people I am the only voice she has so It has to be loud and heard by many. Praying is a many time a day thing with us, the Lord has gotten us through so much. Without him I would be lost. Thank you for the prayers, they are greatly appreciated! I am going to check out those syndromes right now.
Will keep in touch.
kksmom

[dollyn]

Your welcome .     I am here if you need to talk.  And with out my faith in god I know I couldn't make it threw all my family has gone threw.

My son has Seizures every day even thou he is on Medicines , and before he had Seizures he was on drugs for ADD and ADHD.   Then I learned my son was having Seizures  and that the drugs he was on could cause Seizures was a side effect of  Adderall (adderrall) and Concerta he had been on both ,when Adderall (adderrall) didn't work and his teacher was always calling or sending home notes saying that she didn't think it was working and that we should have the doctors try something else. So I told him and was changed to Concerta .Once I found out about the Seizures and that the drugs could cause them my son was taken off of them by me,even thou my son Neurologist was not happy about it ,I told him my son will not take these drugs scene they can cause Seizure and he is having Seizures now after being on those drugs because these drugs .My son was not like this before the drugs and we will not be given him any drugs for ADD and ADHD.  The Medicine to try and stop the Seizures.

God bless stay strong and you are never alone in all this.