Post your childs diagnosis!! - Page 8

[corgigirl]

Six year old Andy is autistic - now high functioning after massive ABA (Applied Behavioral Analysis) since age 3. Mainstreamed and doing well academically, working on social skills and tantrums. Current stims -geography and axes. Working on eliminating axes. Changes stims about every three weeks.

Bonnie is five and has neurofibromatosis (NF1), probably bi polar (too young for diagnosis), expressive and receptive learning disorder, cognitive issues/delay, memory storage and retrieval problems and low muscle tone. Very sweet at home but very scared and anxious outside the house where there are too many unknowns.

[Leatherette]

I have never posted here because I am not sure if my daughter "fits" here, but here goes. My daughter is typically developing, but has asthma, eczema, and reflux, all related (we think) to an allergy we haven't been able to pinpoint. She has been on strict elimination diets, allergists, dermatologists, etc, and no one can help us, except that the reflux is being controlled with Ranitidine. The asthma is mild. The eczema is the most troubling.

Sometimes she is just fine, symptoms mild or gone for a while, but then, WHAM! she is broken out all over, wheezing, not sleeping, scratching incessantly. She has been in a bad stage for over a week now, and it has been very stressful. Up all night trying to keep her from seriously hurting herself with rubbing and scratching, dealing with a tired and uncomfortable toddler during the day.

I have been needing support for the feeling of "Why can't we do what other people with kids do, eat what they eat, enjoy "normalcy" instead of spending endless time lubricating, watching for and stopping scratching, worrying about every bite of food and medicine I give her? Then part of me kicks me for feeling sorry for myself when it could be much worse.

L.

[thoesly]

Originally Posted by Leatherette

Then part of me kicks me for feeling sorry for myself when it could be much worse.

I understand. But the fact that things *could* be worse doesn't mean that a situation isn't hard as it *is*. This is a great place to find support during hard times and good times, too.

Welcome,

Tara

[Leatherette]

Thanks, Tara.

L.

[Myboysmom]

Well, my journy has been a long one. And I started posting here in 2000 in this forum (MDC in 1999)

My ods is mentally retarded (aka government and school standards). He has developmental delays, speech delays, is fine motor impared. His visual/perceceptual skills are diminished (meaning he doesn't know where he is in space and is, thus, clumsy.) He also has some psychological "difficulties" which, in all likelyhood, will result in a mental illness diagosis when he is an adult. He has already had one psychotic episode.

On the other hand, he is at heart a "lover, not a fighter"

And has SO VERY MANY GIFTS that cannot be taught!

[BabySackMom]

Hi All

I know my Special Needs are not as bad as some of the others but I have a 14 yo with ADHD that is doing pretty well unmedicated. I also have a 4 you with ADHD/OCD and possible Bi-polar we are still going throug eval for that.. I have to admit that he is the most difficult of my 4 children. As much as I didnt want to we medicated him. He was causing bodily harm to himself and his little sister. Then we have our littliest which we dont know yet if she has a speach delay or not she is 2 and speaks about 10 words.

I look forward to getting to know all of you.

[kirstent75]

My intro...

My 22 month old daughter is diagnosed with Dandy Walker Malformation. This disorder is basically a fluid filled cyst where there should be brain matter in her cerebellum area. She does NOT have hydrocephalus, thankfully. She was diagnosed when she was about 2 months old. She had been having seizures, but very brief in length, so I think I was in denial that they were indeed seizures. She had a CAT scan and MRI and it was discovered that she had only 10% of her cerebellum. She is the sweetest, most cuddly, happy little girl. Her sisters adore her, as do her dad and I. She is progressing just amazingly well, considering. We have been receiving services for her through our regional center and united cerebral palsy since she was about 2 months old. She is not walking yet, but can crawl as quick as anything, and is pulling up and cruising some. We had an eval. yesterday with a PT. It was a great appt. She really seemed to pick up on Maya's quirks - always nodding her head when she crawls or isn't actively doing anything. THey also think it is sensory related....
My pregnancy with Maya started out with twins, but at 9 wks (the day I found out it WAS twins) was the day we found out that one hadn't survived. THere is some speculation that rather than it being DW that maya has, that instead it was a blood clot from the other baby that broke loose and made its way into maya's brain causing a stroke and that part of her brain to stop growing.
I am so amazed at the progress my daughter is and has been making. When people see her and ask her age, they are usually taken aback that she is not walking yet. I see it totally different. If you were to read online regarding Dandy walker, you would find that 50-75% of kids have some form of mental retardation, some never walk, they have very complicated issues. Maya seems to be one of the lucky ones, doing AMAZINGLY well!! She is progressing BEAUTIFULLY!!!
I am also finding that i am very defensive feeling, and am coming to terms with the fact that she is technically classified as special needs. The appts I have for her are, at times, overwhelming. Just in the next month I have appts with neurology, speech, audiology, and ophthamology. I am sure many of you face the same struggle. It is difficult to balance the time and energy she needs with the needs of my other two young daughters (ages 3 1/2 and 4 1/2). I feel like I am constantly running appt. to appt.

Okay, I have now written a book, certainly didn't mean for my intro to be so long. I am glad to hear your stories and know that I am not alone with my worries and fears...

Thanks for listening.

[Myboysmom]

WOW!!! Thanks for sharing! I have not heard of "Dandy Walker" . In my personal (and professional) experience, YES, the numerous appointments are overwhelming but often subside as a child gets older!

Bless you both and keep sharing her story! AND yours!

[christymama]

Welcome to all the new mamas
I to havent heard of dandy walker . I am glad you are here and hope to become more informed My daughter is almost 9 and she had tourettes. We all know how you feel about the appointments. Some just more then others. Glad you are here and looking forward to learning more

[kirstent75]

Hi Peekyboo!

Hi there, Peekyboo!! Just wanted to say howdy! My daughter is 21 months and also not walking. We do know the reason (dandy walker brain malformation) and she is getting close, but still not quite there. She cruises around and crawls fast, but not yet ready to walk. We just had a PT eval yesterday (FINALLY!) and she is probably going to get braces for her legs, and a baby walker to help her get around and play.. I am very excited for her. I think she totally needs both of these, and she is so frustrated and determined to walk!! Anyway, just wanted to say that there is someone else out here that knows what you are going through!! I love your website - thanks for all the great info!!

[kirstent75]

Hi again. Thanks MyBoysMom and ChristyMama for your warm welcomes. I know her appts. are just overwhelming again right now, b/c she is almost two years old, and at that point, they can get her more services as needed (speech, etc.) Of course, in order to do that, we have to see a round of specialists. I actually shouldn't complain, I have had nearly a year with hardly any - it's just that when it rains, it pours. I am trying to simplify our life - all our therapists for Maya say we should have her on a good schedule everyday, just to help her predict what will happen next... Well, how on earth do I do that when EVERY day is different? And, thus I am back to whining again!! haha

How do you other mom's cope with multiple children and routines/schedules? I am NOT an organized person, so this isn't easy for me!! haha

Thanks again for making me feel welcome!

[SMH3534]

New here

I've only posted once on this board to introduce myself, but thought that I'd do that here also. My son Konnor is 13 mos old. He was born with two true knots in his cord, resulting in Hypoxic-Ischemic Encephalopathy (severe brain damage). He is developmentally delayed, has hyper and hypotonia, gtube, seizures (although he hasn't had one in about 5 or 6 months), delayed in speech also, he isn't crawling, although he's starting to roll around a lot more!! which is a great thing. I think about all that we've gone through this past year, and he's made sooo many improvements! The docs say he has the likelyhood of having cp; but that diagnosis hasn't happened yet...I hate the "wait and see" thing.
Thank you for reading this. Take care,
Sheen

[treefroggy8]

My son's diagnosis so far....

I'm kinda new here....my son Elliott has dyspraxia (motor planning), sensory integration, fine and gross motor delays and minor speech delays. He is being eval by a child psychologist for IQ, ADD/ADHD (though I refuse to accept that diagnosis unless all others are ruled out and even then I know it is misdiagnosed with sensory integration) and a pediatric psychiatry department at the hospital for other disorders.
My son is 5 and I am trying to decide what the best school is for him. He is in a special ed prek which also has gifted programs and is doing well. He is off the charts cognitively.
Lisa

[kirstent75]

Originally Posted by SMH3534

I hate the "wait and see" thing.
Thank you for reading this. Take care,
Sheen

Hi and welcome! Nice to meet you, too! I am also pretty new here... I have to echo your sentiments - it is the hurry up and WAIT that is just killing me at times. If I could just fast forward a few years and see how my Maya is doing, then things would be GREAT!!! I know i can handle whatever life brings, if I just KNEW!!! I hate waiting and watching.

I feel for you and your situation. I know all we want is for our little ones to be healthy and happy. Best wishes! Glad to meet you!!!

[Myboysmom]

Okay, let me share with you (as briefly as I can) my "wait and see" experience.

3 years old: Everything had been perfectly normal. All developmental milestones met on time. Very friendly. Extremely verbal. Got kicked out of two preschools for unprevoked biting. Developmental eval by the child psychologist (whom I did and do still have a lot of respect for) said it was a phase. no diagnosis

5 years old: held back from Kindergarten because he just "wasn't ready". Behaviors became more and more agressive. Wasn't where his peers were skillwise. Another developmental eval and O.T. eval showed some significant fine and gross motor delays. Began Occupational Therapy. no diagnosis

6 years old: Entered a private school for children with developmental delays but capability of learning academically. Began Speech and Physical therapy as well. Also began seeing a child Psychiatrist on a regular basis because agressive behaviors were rapidly increasing as was the negative self talk (and suicide talk) no diagnosis Oh, and we are still with the same Psychiatrist and he is AWESOME!!!! He has really helped us delineate what is "typical" adolescent behavior and what is atypical because of his difference.

9 years old: Entered public school. Their evaluation indicated "mental retardation" but I insisted on further testing and he was placed in resource the maximum number of minutes outside a self-contained class. Suspended twice that year for agressive behavior. Had his first seizure. no diagnosis other than Learning Disabilities, Speech and Fine motor delays, visual/perceptual difficulties, ADD-ADHD-ODD

12 years old: dad moves out of the house and files for divorce This is no small event! Enters middle school. Time for another "three year annual evaluation". Cognitive delays are percentage wise the same as they have been but now I am in good with the school psycholgical examiner who asks me what I want him to do. I allow the school district to use "mild mental retardation" because it enables him to receive many more services.
Seizures have continued. He now has a "seizure disorder" diagnosis and takes medicine regularly (after four trips via ambulance to the ER) Aggression escalates, primarily against me. Ten day inpatient hospitalization for a "psychotic episode". Begins anti-psychotic medication. I begin preparing myself for the fact that my oldest child is not only mildly mentally retarded but in all likelyhood will have lifelong mental illness.

OKAY, THIS IS NOT AS BAD AS IT SEEMS!!!!!!!!! He has not been suspended since he started Middle school last fall! MAJOR PROGRESS!!!

By not having a diagnosis for so long (medically/educationally/legally) most have focused on his ABILITIES rather than his disabilities/special needs. And believe me, we have looked and looked for a physical/physiological reason or diagnosis! He has seen and been evaled by Genetics, Endocrinologist, Neuropsychologists, any specialist I could get a referral to!

But he has gifts that can't be taught! He has always been gregarious, friendly and those with no experience with persons with developmental delays don't even realized he has them.

Hope this helps someone! I am always available to talk/listen. PM if you aren't comfortable posting here.

[pilesoflaundry]

Updateing, my ds was first dx'd nothing, then adhd, then bipolar and now we are finally right I think! He was dx'd as high functioning autism, it's what I have thought for years, I just wish he had therapy sooner. He needs social therapy the most and also some fine motor and he did need speech before I think but he has gotten better on his own.

[thoesly]

Originally Posted by pilesoflaundry

Updateing, my ds was first dx'd nothing, then adhd, then bipolar and now we are finally right I think! He was dx'd as high functioning autism, it's what I have thought for years, I just wish he had therapy sooner. He needs social therapy the most and also some fine motor and he did need speech before I think but he has gotten better on his own.

Congratulations on finally finding the "right" diagnosis! It took us 18 months and several therapists and specialists to get my daughter's issues sorted out. Once we knew what the challenges were, we could figure out how to help her, and she progressed quickly with the "right" help. I hope your little guy has a similar experience.

Tara

[peekyboo]

Hey kirstent75

Originally Posted by kirstent75

Hi there, Peekyboo!! Just wanted to say howdy! My daughter is 21 months and also not walking. We do know the reason (dandy walker brain malformation) and she is getting close, but still not quite there. She cruises around and crawls fast, but not yet ready to walk. We just had a PT eval yesterday (FINALLY!) and she is probably going to get braces for her legs, and a baby walker to help her get around and play.. I am very excited for her. I think she totally needs both of these, and she is so frustrated and determined to walk!! Anyway, just wanted to say that there is someone else out here that knows what you are going through!! I love your website - thanks for all the great info!!

Sorry I didn't see this sooner! I bet the braces will help your dd sooo much! Maura has dafo inserts in her shoes and those have helped her so much, keeping her from rolling her feet in.

And I'm glad you liked my site. Granted, I gleaned (with permission) the links from another group, and I haven't finished the job, but I know these things have helped me and I wanted to share the info with others who need it b/c there is SOOOO much out there and we don't have enough time to find it, lol!

As for appointments with other kids - I'm very lucky, my dh is a consultant. So I can schedule appointments and then he can work around them usually, so I don't have to take all the kids with. I have taken all the kids to appointments in the past when necessary. But luckily, with the older two in school, I can get away with just taking the girls. Otherwise, the offices are usually pretty good about these things since they primarily see kids. I also bring stuff to entertain them and snacks too.

[babykinsx2mom]

New to this area of the boards

Hi Eveyrone. My son is now 9, has mutiple issues. Ill do my best to list them for you.
Arnold Chiari Malformation: decompressed at age 2
Tri Cuspid Atresia, Asd, Vsd:mutiple open heart surgeries to repair.
No Right Kidney
G-tube Placement for feedings, after Nissen and Fudoplycation repairs. Left him with Dumping syndrome
Legally Blind in R eye
Developmental Delays all over the boards.
Has had mutiple strokes with the onset of Autism showing at age 8.

Total he has had 18 surgeries and is at home with us all the time. He is homeschooled after his last stroke set him back and brought the onset of the Autism fullforce. He has sensory issues, is unable to potty train, interaction with other children is minimal outside siblings yet he craves attention and friendship. Hes a miracle to be here, but is very challenging as they have never seen a child with all of his issues in one child before.

[7kiddosmom]

My oldest dd was diagnosed with Cerebral Palsy when she was a year old. She was premature, born at 27 week and weighed 2 lbs 7 ozs. She was also diagnosed w/ learning disablities through the PS system. She is very functional, can walk fairly well and talks w/o any difficulties.

Kasey