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Post your childs diagnosis!! - Page 2

post #21 of 735
That must have been some bad day! I am sorry that you are dealing with such a narrowminded CPS worker. As far as I am concerned Signing is just about the best form of communication for any small child, and especially for those kids that have verbal communication problems. But that is another thread entirely. I hope things get better for you.
post #22 of 735
Hi all. my ds has ADHD and sensory issues. These troubles seem minor compared to what some of you mamas are dealing with! I wish everyone well!
post #23 of 735
Hi, everyone! DS has Down Syndrome and is... uhm just over two... can I add at 12:30 am???? He's about 27 months.
post #24 of 735
Wow, you all have been through a lot. Many strong, strong mommies here!

My oldest is 3.5 and perfectly normal physically, but we are going to ask for a SID assessement because of some problems she's been having, and some quirks that are starting to affect her acceptance by/friendships with other kids.

My baby is 4 mos. old and so far has been diagnosed with severe GERD, Sandifer Syndrome, and Failure to Thrive. She is allergic to many things and can't take breastmilk, only hypoallergenic stuff half of which is fed to her through NG tube. I'm going to ask her Ped GI about the pros/cons of a g-tube because it looks like she's going to need to be fed by tube long-term and I think the NG tube is not helping her reflux any. Luckily she has made great strides in the weight gain dept. this month and is the exact same weight that her sister was at the same age!

I'm very frustrated, it's very exhausting dealing with a possible SID 3 year old and taking about 45 min. every 3 hours to feed my baby, only to have her vomit it all back up again and start over an hour later. Not to mention that she has enough hand control to hook that tube where it comes out of the nostril and pull it out 2-3 times a *day*. Guess who gets to put it back in?

Nice to meet you all! If anyone can share the pros/cons of a g-tube vs. NG tube I'd appreciate it.

Darshani
post #25 of 735
Quote:
Originally Posted by mommy2three
TXMAMA-

I wanted to ask you if your son has ever been tested for Cerebral Palsey? (I don't have enough to go on by your post to actual suggest him having it, so don't panic ) I posted above about my 22 month old because we are currently dealing with his prognosis but I also have an amazing almost 5 year old boy who has mild Cerebral palsey. His beginning was very much like what you discribed- Jack was born (with his twin) by emergency section at 31 weeks due to lack of movement and Jack's heartrate flatlined. Because it took them a bit too long to get him out he was deprived of oxygen and I think this is why he has CP. Anyway, he had severe hypotonia for the first year, was fed by tube feedings for 8 months, etc. He couldn't hold his head up until a year or sit up either. However, now with extensive therapies (and luck) he can walk completely unaided and is very into sports He will always have special therapies and possibly be in special ed.

Forgive me if you already said this- but have you contacted birth to three programs? Almost every state has one

PS. Jack was also on a breathing and heart machine until 8 months old because he would also start to choke and aspirate on his saliva. He still drools a lot now but he doesn't choke on it anymore

Actually CP is exactly what we have been told his diagnosis will most likely be. However his neurologist wants to wait until he is at least 18 months. He's been tested for TONS of stuff right at birth including lots of genetic stuff and everything came back normal. It seems like CP is what they call everything that involves the brain that they have no other answers for....doesn't it?
Your right though...Jack does sound like he did much of the same things that Drew is now doing. Except that Drew's tone is now too much not too little.
I am glad to hear that Jack is doing well now! I am hoping that Drew will have a similar outcome.
post #26 of 735
Tiffany has been diagnosed as mentally disabled with a seizure disorder. That's all that they can come up with. Just a fluke kind of thing.
post #27 of 735
Thread Starter 
I guess I should have went a little more in depth about my daughter. She has a 1p36 chromosome deletion. We got the full daignosis at 2 weeks. She was taken preemie at 33 weeks weighing 2.1 pounds and 13 inches. Very IUGR. She has had 8 surgeries and was in the NICU for 4 months. She has hydrocephalus and has VP shunt. She had tons of heart defect (3vsd's,2 asd's, a PFO and PDA, cardiomyopathy and left ventrical enlargement) but thankfully they all healed on their own with the exception of the PFO which she still has but is not medicated for and the PDA she needed a few doses of indocine for. She had a duodenal atresia with annular pancrease. Her pancrease grew around her doudenum constricting that part of her intestines. She could pass even air through and needed surgery at 6 days old to correct this. She had severe GERD. She has had a nissan and has a g-button. Since about a year ago she only eats by her tube but in the last few weeks has started taking baby food again, not milk yet. She has oral pharyngeal dysphagia. She has a seizure disorder related to her deletion. When out of control she will seize up to 30 times a day. With meds we have got it down to a nice minimum. Sometimes once a week sometimes once a month. She has had some trouble with her liver because of her meds. She is developmentally at about (mentally-4-5, physically-4-5, speech-5-6) that's my best guess, it's been a while since i've been given an eval in those terms. She is in therapy 3X a week right now, that's alot less than normal but we had to order a stander and that takes out of her allowance. She is still very much under the 1s percentile fof her weight and is at the 1st or so for her height. At almost 2 she is 18 1/2 pounds and about 33 inches. She cannot sit unassisterd yet, roll all the way or anything past that. However, she is the happiest most content baby i've ever seen! She is truly amazing. I'm so thankful that she is the way she is, it would be alot harder to cope with her disabilities if she was a screaming mess. KWIM? She has a 4 year old sister who just adores her. (most of the time) LOL! Emma is always trying to help with Meg but of course she can;t do much. She was very disapointed by alot of the things she has missed out on by not having an average sib. Because of that she's very nervous about us having a new baby this Christmas. She is scared that this baby will be like Meg. I'm sure we all are a little. We have been through so much with her... Did I mention we lived 2 hours away from where she was in the NICU? That sucked, we lived in a hotel by the hospital. That all was made alot easier though because DH is in the military. The gave him leave for that whole time and paid alot of our expenses. Well, That's all I can thing of for now. Oh, we already had genetic testing done and her deletion was de novo. Go figure...
post #28 of 735
My beautiful girls are both special...in many ways. Talking about their special needs, Violet is almost 4 (I can't believe it!) and has a moderate hearing loss in both ears (sensorinerual) and subsequent speech delay. A year ago she said about 30 words. Today she has well over 500 and has started talking in 4-5 word phrases. She is still very far behind her peers but is so socially attunded that most of the time it doesn't matter-she gets her point across. She is still very dreamy and has not lost any sort of her childish innocence--I don't think she knows that the world is any place but lovely and good. I like that, for now. My heart is so full for my daughter and her struggles, I often lay awake thinking about the choices we make and worry about her future. I know she'll be fine, I just worry sometimes.

And little Zoe (16 mo) has a rare form of congenital nystagmus. Nystagmus is a neurological condition that effects the eyes. Her eyes move in a pendular motion when trying to fix on anythign more than 2-3 feet away. The condition can be pretty devestating for many reasons (loss of balance, severe vision loss, brain tumors) but our Zoe seems to have a rare, benign form of the disorder. Our neurologist says that Zoe doesn't see the motion in her eyes, that she has most likely adapted to it. She has no motor issues (walked at 10 mo) or balance issues and seems unaffected by it. It can self-correct or lessen by the age of 5 or 6 and we've noticed significant correction in the last year or so, so we will see. Nystagmus can be pretty terrible as far as social interactions go--people are cruel--but Zoe's focal point (it has to do with the way a person with Nystagmus holds their head to lessen the movement of their eyes) is not to the extreme side but just with her chin lowered slightly. It looks very cute, actually.

Violet was in intensive speech therapy (assesed at nearly 3 at an 18 mo old level) for six months and then tested out. She still goes to speech at her language preschool 2x a week. We also have her in a Waldorf preschool. We chose not to send her to the deaf/hh school because she is so verbal and has so much hearing that we wanted to focus on language development. I think I'd like to do more sign, so I need to take some classes.



Jesse
post #29 of 735
I have two special needs kids, one more than the other. Lauren was born with aortic stenosis and a bicuspid aortic valve (congenital heart defects) and underwent cardiac catheterization at 8 months to correct the problem. She's now 9 1/2 going on 20 with no problems whatsoever!

Jonathan is 16 1/2 months old and was diagnosed in utero with Hypoplastic Left Heart Syndrome (HLHS). He has had two open heart surgeries to date and countless procedures. He's our little miracle baby.


Hugs~

Christyne
post #30 of 735
No diagnosis for my dd.She is 6 and will be 7 in August.She was slow in all developmental milestones.She has poor muscle tone and is very clumsy.Her speech is about %50 intelligble by strangers and maybe %75 by us.Her comprehension is maybe a 3 years old but she is very social and loving.She was ruled out for autism and aspergers because she is social and huggy feely.She was ruled out for mental retardation because she has a sense of humor and shows other signs of intelligence.All other testing has ruled out any chromosone abnormalities,thyroid problems and amino issues.Our naturopath said she has digestive problems and that could contribute.So we are working on things.

Nice to meet you all.
post #31 of 735
Hi everyone! My youngest ds, Aidan, who's almost 3, has autism. His official dx right now is the very vague "Autism Spectrum Disorder". The doctor wanted to leave a little wiggle room, because when he was initially evaluted, his autistic symptoms were quite severe, but it was also clear that he was very bright. We think (and hope, and pray) that with a lot of intensive therapy, he'll be pretty high functioning when he gets older. He's definitely made big improvements in the past year, though noone would mistake him for "normal" yet.

Quote:
My son is 22 months and does not have a formal diagnosis yet, however he just had the ADOS (Autism Diagnostic Observation Schedule) and they said that he is definitely showing signs of autism however they want to wait until he's around 3 to be sure.
Please, please, please don't let them put you off. The earlier you start some kind of therapy/treatment/intervention, the better the long term prognosis. Aidan was diagnosed at 22 mos. In fact, it's possible to dx autism as early as 18 mos. If one day he outgrows the "label", AWESOME! But right now, a label is a means to get services, so please don't let them tell you to "wait and see" with scores like that. Nobody wants to hear the big bad "A-word" in reference to their child, but the sooner you get help, the better.
post #32 of 735
Hey everyone, this is a good idea.
DS has been diagnosed with high functioning autism. He is finally talking well and actually starting to use his imagination. Things are getting better for us. He was also recently diagnosed with ADHD. We are trying everything to avoid meds but are starting to feel that at some point he will need meds. Anyway... This is us.
post #33 of 735
Quote:
Originally Posted by myjulybabes
Hi everyone! My youngest ds, Aidan, who's almost 3, has autism. His official dx right now is the very vague "Autism Spectrum Disorder". The doctor wanted to leave a little wiggle room, because when he was initially evaluted, his autistic symptoms were quite severe, but it was also clear that he was very bright. We think (and hope, and pray) that with a lot of intensive therapy, he'll be pretty high functioning when he gets older. He's definitely made big improvements in the past year, though noone would mistake him for "normal" yet.


Please, please, please don't let them put you off. The earlier you start some kind of therapy/treatment/intervention, the better the long term prognosis. Aidan was diagnosed at 22 mos. In fact, it's possible to dx autism as early as 18 mos. If one day he outgrows the "label", AWESOME! But right now, a label is a means to get services, so please don't let them tell you to "wait and see" with scores like that. Nobody wants to hear the big bad "A-word" in reference to their child, but the sooner you get help, the better.
On my sons dx forms it also says Autism Spectrum Disorder. This is because he exibits ALOT! of the signs of autism, but in some areas he was untestable, so the ASD label was put in place with the examiners telling me that they feel with further testing full autism label will be most accurate. They also told me that since he is more thanhave of his age behind in most areas developementally that the will have a Mental Retardation label until that changes. I would love for Adam to be high functioning, but Iwon't love him any less if he isn't. BTW, I think "normal" can be highly overrated. Most children are "normal" but I have a Special one. Thatis the best way for me to look at it in regards to Adam. Nooffense ment to those who have "normal" children, as thus far my dd seems to fall under that label.

As far as I have ever been led to believe once you have autism you will always have autism {and the label as such}. Have they cured it and someone forgot to tell me? Best Wishes!
post #34 of 735
Quote:
Originally Posted by Goldiemom
As far as I have ever been led to believe once you have autism you will always have autism {and the label as such}. Have they cured it and someone forgot to tell me?
The term that is used is "recovered." Some kids do make enough progress that they lose the label. Some of these may have some shadow traits that linger, but don't hinder them. Just like some adults have autistic traits even though they were never labeled as such.

Basically, though, autism is considered a life-long condition.
post #35 of 735
I suppose it all depends on the severity of the disorder in each child. Thank you for clarifying that for me.
post #36 of 735
Quote:
Originally Posted by thoesly
The term that is used is "recovered." Some kids do make enough progress that they lose the label. Some of these may have some shadow traits that linger, but don't hinder them. Just like some adults have autistic traits even though they were never labeled as such.

Basically, though, autism is considered a life-long condition.
Yep. Sorry if I was unclear. I don't expect that Aidan will recover, or be cured. I hope that he will be higher functioning than he is now, and possibly qualify for a lesser dx on the spectrum, like Aspergers or PDD-NOS. That was the doctor's orginal opinion, that he would always have some autistic traits, but that he wouldn't always be the way he was at the time of dx.

I will always love him, no matter what, and I think normal is overrated. But I'd be lying if I said sure, I still want to be changing his diapers and feeding him bite by bite when he's a teenager!
post #37 of 735
Wow, we moms are really dealing with a wide range of issues! Two of my kids have special needs---Gabriel, 5 1/2 yrs, has Down syndrome. He had horrible feeding problems during his first 4 1/2 months, but was blessedly able to finally nurse after that. I will never again take the ability to breastfeed a baby for granted. Gabriel also had infantile spasms (a form of epilepsy) when he was about 9 months old, but they were controlled by meds and he has now been both med- and seizure-free for 3 years . I decided long ago that assesments that compared him to other kids were in and of themselves "disabling", so I can't tell you where he "functions" on a developmental scale. I can say that he's not really the poster child for the "Nearly Normal Child with Down Syndrome", LOL! He's just who he is .

Michaela is 7 1/2 yrs old, and after a lot of testing in her first year and a half, we found that she has a spinal cord anomaly that has affected her legs in a manner similar to spina bifida. She's tiny, very thin, pretty low-toned, and currently very motivated to walk. She practices walking daily in long leg braces and with forearm crutches, but otherwise gets around either on hands and knees, or in her spiffy purple wheelchair. She may be having surgery in the next few months (her first ) to transfer some of her hamstring muscles to her quads, but we're not positive about that yet.

Someone mentioned that sense of belonging to a special club that you never anticipated joining; that is so true! I remember after Gabriel was born, especially, feeling like I was being dragged, kicking and screaming, down a path I *didn't* choose, and didn't want to go. Things are much better now, and I've learned to look for the brightness in everyday life .

Joni, mom to G and M and their siblings, and due 7-17-ish
post #38 of 735
Hi, I am new so please don't get upset with me if I am posting incorrectly
I have a daughter (11) who has been diagnosed with psychological disorders, including Bipolar, OCD, ADHD, ODD and now they think she has Reactive Attachment Disorder (LOL). Any other moms/dads with similiar kids. I need help with how you are surviving.

She is defiant to a "T", harms her younger brother, hates everything, blames everyone for her mistakes, lies, steals,...She is, unfortunately, horrible to be around. WE fear for our 2 other children and are seeking any help out there right now.
Denise
post #39 of 735
Thread Starter 
That's not the same kind of special needs some of our kids have but It sounds like you are having a really hard time. I'm sorry I can't be of any help, Just wanted to lend an ear and give you a hug!!! I hope things get better and you find someone who can help you cope.
post #40 of 735
Denise, it sounds like some of those diagnoses are redundant (they re-describe the same problem). Since this thread is more of a 'roll call', would you feel comfortable posting a new thread with your concerns so you can get input from others? There are lots of folks in Special Needs that are dealing with psychological/behavorial diagnosis rather than physical/developmental, so you are in the right place.
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