Post your childs diagnosis!! - Page 3

[mamasun]

Hello!
I am mom to a twelve-month-old with Down Sydrome, who is a twin born at 33 weeks. We spent five weeks in the NICU with the babies, but have been home and healthy ever since, things for which I am really grateful. My ds is now in PT for gross motor delays (some of you helped me navigate the assessment/diagnosis process through EI, many thanks!). Having a twin who is not developing typically makes me feel "out of it" on the twins boards (I would truly love to have the problem of them both running away from me at the same time!) but I've really enjoyed the caring mamas that post on this site.
Glad to be here!
Jennifer

[mommy2three]

"Having a twin who is not developing typically makes me feel "out of it" on the twins boards (I would truly love to have the problem of them both running away from me at the same time!) but I've really enjoyed the caring mamas that post on this site."

Welcome Jennifer!

One of my twins has (now what seems to be mild) Cerebral Palsey but was pretty severe his first year (couldn't hold his head up or sit up until after 1). Where as his twin sister was crawling at 6 months (4 months corrected-) It was hard so I know what you mean Sending lots of hugs!!!

[spero]

My 6-yo DS (child #3) was diagnosed with Asperger's Syndrome just this past March, although I have suspected ASD since he was a baby.

He is extremely high functioning, no learning disablilities or fine motor skill trouble. Mostly social and sensory issues, which are being addressed with OT 3X/week at school and techniques at home (including brushing). He's made a lot of progress in the past couple of months, but we still have a major meltdown every now & then (like yesterday morning ).

I'll be sure to read this whole thread later, when I get home from church.

[GoodWillHunter]

My twins have a diagnosis of Speech Diasability. They are going to a special school to help them untill they are of age to go to kindergarten.. They are four...

[mamabean]

My 3 y.o. ds has had 2 kidney transplants-the first one failed. He's 10 months post transplant and is the healthiest he has ever been in his life!!! He is on the growth chart for the first time since he was 1 month old. All of this makes me so happy, of course, but knowing that the rug can be pulled out from under my feet at any time is tough. tough. tough.

[snuggly mama]

Mamabean, it's nice to meet another mommy of a little one with a transplant! My dd is 3 yrs old and 2 yrs. post kidney transplant. She's doing wonderfully, though every little illness still sends me for a loop. I'm glad your son is doing well now.

[alternamommy]

I don't have a ton of time to read this right now but I thought I'd tag on our info. DD is 10, has BP mixed and OCD as well as anxiety. DS is almost 8, has some serious issues that were previously defined as BP but which I now suspect are more aspergers/autistic spectrum related.

Nice to meet you all.

[Changed]

I cannot believe how many kids have ASD. WOW! Is it really that common or are alot of kids misdiagnosed? May I ask if those of you who's kids have autistic symptoms have vax'ed? Just curious, i'm trying to decide if I'm going to continue selectively vaxing or cold turkey.

[thoesly]

Originally Posted by my~hearts~light

I cannot believe how many kids have ASD. WOW! Is it really that common or are alot of kids misdiagnosed? May I ask if those of you who's kids have autistic symptoms have vax'ed? Just curious, i'm trying to decide if I'm going to continue selectively vaxing or cold turkey.

Good questions. It is that common. It is considered an epidemic, and it isn't just because diagnosis techniques have improved or it's trendy. I have never seen a child who was said to have ASD who was just "spirited" or whatever the "in" term is now. There's a difference, but this isn't the thread to go into that. Anyone wanting more information is welcome to PM me.

I did vax my first 2. I think it may have played a role, but I don't think it was the only, or even the main, contributor in our case. Most parents that blame the vaccines do so because they were in the ER within hours of being vaccinated. I believe in the theory that says that we all have a threshhold level for toxins -- a point at which our bodies say enough is enough and react with arthritis, lupus, etc, etc. Kids with autism have a lower threshhold, and when I consider all of the toxins my son was exposed to, I believe he may have ended up with autism even if I hadn't vax'd. I think this is the journey he was meant to take.

With my 3rd, I started out vaxing, but I had done enough research by the time he was 4 months to say, wait! I consider myself pro-vax overall (a lot of philosophical issues here), but I am not vaxing my youngest anymore. I have a doctor who agrees with me, so I'm more fortunate than most. Most of what I've read advises waiting to vax until after age 2, giving separate vaccines months apart, and taking other steps (supplements prior to vaxing). If you haven't read What Your Doctor May Not Tell You About Children's Vaccinations by Stephanie Cave, I highly recommend it. She does a good job of explaining it all and indicating which vaccines may cause harm for specific conditions (if you have a family history of X, you may want to avoid Y vaccine). It gives the facts without resorting to being propaganda for either side.

It's not an easy decision. The best you can do is find peace with it.

Good luck,

Tara

[Changed]

Originally Posted by thoesly

Good questions. It is that common. It is considered an epidemic, and it isn't just because diagnosis techniques have improved or it's trendy. I have never seen a child who was said to have ASD who was just "spirited" or whatever the "in" term is now. There's a difference, but this isn't the thread to go into that. Anyone wanting more information is welcome to PM me.


Tara

Just wanted to make sure you knew that I wasn't thinking misdiagnosed in that way. There is a HUGE diff between spirited and autistic. I was thinking maybe with an underlying problem yet to be diagnosed. IE> genetic disorders. I've seen kids at therapy who look like they would have a syndrome of some sort who's parent s say they have ASD.

[thoesly]

Originally Posted by my~hearts~light

Just wanted to make sure you knew that I wasn't thinking misdiagnosed in that way. There is a HUGE diff between spirited and autistic. I was thinking maybe with an underlying problem yet to be diagnosed. IE> genetic disorders. I've seen kids at therapy who look like they would have a syndrome of some sort who's parent s say they have ASD.

Gotcha! May not be a question of misdiagnosis. Possibly/probably, the child has multiple diagnoses, and ASD is the one the parents tell people because it requires less explanation since most people are familiar with it now. ASD coexists with many other disorders -- Fragile X, Down Syndrome, Anxiety Disorder, etc, etc. Doesn't seem fair -- one issue should be enough -- but that's how it is.

[kimkabob5]

I have a 15yo dd Rachel who is diagnosed with:

Axis I: Pervasive Developmental Disorder NOS, Psychotic Disorder NOS, Tricholtillomania, Mood Disorder, Attention-deficit hyperactivity disorder Combined type

Axis II: Mild Mental Retardation

Axis III: Hypothyroidism

Until she was eight, she only carried the diagnosis of ADHD. No one knew what was wrong with her, or even that she was mentally retarded. We couldn't understand why she wouldn't stop writing on the walls, or squeezing the cat's neck, or urinating in other people's lunch boxes, or have massive screaming fits, or kicking and punching other kids, or running off and walking down the center line of busy roads, or trying to jump out of moving vehicles. We couldn't really go on any family outings, or even out to dinner.

Things have gotten worse rather than better. She is unable to live at home due to unsafe behaviors such as escaping the house to go visit the neighborhood dogs, being aggressive with younger siblings and cruelty to pets.

I have not come across anyone anywhere in anything even remotely similar to this situation.


Kim

[muldey]

Hi!My ds,almost 3,has a congenital heart defect calledTetralogy of Fallot .He had open heart surgery to repair the defects at 11 weeks old.He's amazingly healthy.He was home in 5 days,and is doing great.

He does have quite a few other issues.He's only recently been talking,and while we can understand him 95% of the time,most others can only understand about 40% of the time.He's such a sweetie.He was behind in physical development(sit up around 10 months,crawled around 12,walked at 17 months but with lots of falling,now he can run,jump,climb,there is no stopping him,lol!),and he has many of the signs of autism.He hand flaps,toe walks,echos many of the things we say,cannot answer questions very well,seems to ignore us when we are talking to him,he has many sensory issues due to what I believe the pain of his surgery,screams hysterically whenever anything changes(if we take a different way home,have to go out,etc),and loves to watch things spin(will spin the wheels on his trains and cars,will spend hours spinning the wheels on his Daddy's skateboard if we let him along with his hand flapping),hates any loud sounds,and LOVES trains,batteries,and fans(although he is terrified of most fans,but will spend hours watching our window fan).He will only play with his Thomas trains.He'll spend hours watching the battery powered ones go along the track.

We have a very hard time going anywhere,which is very hard on his big sister.She wanted to go see Garfield the movie,so we went.Thankfully my Dad was with us(dh works 70+ hours every week,so he isn't too involved unfortunalty),because ds couldn't even get throught the previews.He was hysterical.He was shaking,and sobbing.The management of the theater was very nice and gave me a full refund for ds and myself.I don't drive,so we were stuck 30 minutes from home,and had to wait for dd and my dad.Thankfully there was a small specialty toy store,and they had a Thomas train table.I let him play for a while so he would calm down.I bought him a train since we were in the store so long,and let him climb on the benches outside while we waited.We wanted to go to Six Flags,but I don't think that will happen.He's been asking everyday to go to Day Out With Thomas,and I bought him a video that shows what will happen there so he knows what to expect,so hopefully that will go ok.

I can never find a babysitter,as no one is sure how to deal with ds when he has an outburst.I am the only one who can calm him.I love him so much.I am just so grateful to have him.I just wish I had some time with just my dd(she's 6).Everywhere we go with ds I have to have the sling(luckily he's only about 30 lbs,because I carry him a lot) or the stroller,because he just runs off,and will kick,scream,bite,etc whenever someone tries to pick him up when he's trying to run off.

On a positive note,he can be very affectionate(but he will try to bite while hugging),loves to say I love you,and he's potty training himself!!I am so PROUD!!!He will also share almost anything when asked,and tries to be helpful by bringing me things he knows I use,even when it's not the right time,lol!

Sorry I made this so long,I can never write a short post,lol!

Lisa
SAHM to dd,6,and ds(3 in July!!!)

[momto3g3b]

I have 4 kids with special issues.

Emily, 5, has Asperger's and SID. She receives OT & goes to group therapy for social skills training. She is homeschooled and learning to read/write and loves math. She is challenging and resistant to change, but is my sweet little girl.

David, 33 months, has autism. He is verbal now, though still echoic, and we're working on teaching him to be conversational versus just labeling stuff or talking only when he wants something. He receives OT, ST & attends group therapy for social skills.

Sarah, 33 months, has Chiari Malformation Type 1 and is globally developmentally delayed as a result. Chiari (also known as Arnold Chiari Malformation, of ACM) is relatively rare (1 in 10,000) and is a birth defect which results in the posterior fossa (opening in the base of the skull) being too small and/or malformed, which makes the cerebellum be squeezed into the spinal canal like a water balloon, thus pressing on the brain stem. Treatment is neurosurgery, which Sarah will be having soon ~ we saw the neurosurgeon on Friday and are waiting on him to consult with his partner and our neurologist and then call us to tell us the date of surgery. She receives OT & ST and attends group therapy for social skills.

Isaac, almost 7 months, has low tone in his trunk, arms and face/mouth, high tone in his legs and is developmentally delayed in every area except cognitive. It is suspected that he is also hearing impaired and we are beginning the process of getting him checked out by an audiologist. He receives OT & ST.

Megan, almost 13, and Adam, almost 12, are NT except for some facial & hand (motor) tics and throat-clearing/sniffling/coughing (verbal) tics. It's been tossed around that both might have Tourette's Syndrome, but since they're both mildly "ticcy" (as we call it), we aren't motivated to get them evaluated right now (too many other things going on that take a higher priority). Megan is a 7th grader and Adam a 6th grader ~ both are homeschooled.

Megan, Adam and Emily were fully vaccinated. David and Sarah each received 2 sets of shots and Isaac has gotten no vaccinations. My dh and I believe that we obviously carry a genetic predisposition for our kids to develop autism, so we don't want to do anything to "trigger" it.

I mostly lurk on this board, but I find the comraderie and support to be wonderful. It's good to have a place to visit where other people "get it".

[lilgsmommy]

DS is 2 1/2. We have a long list of current dx/problems with him and I am sure more to come.

Asthma
Sleep Apnea
Seizures
PreDiabetic (type 1)
Failure to Thrive
Immune Deficiency (was considered to have Transient Hypogammaglobulanemia of infancy but latest test proved his immune system is getting weaker, so waiting on a new dx)

If you add on top of this ds allergic to milk, orange, eggs, dairy, and tons of environmental allergies, I have my hands full!

[Jessica36]

Ok Here I go. Hi I am Jessica I have ADHD, which takes me to my oldest son:

Joshua is 4 he will be 5 in Nov :

• Asthma
• Food Allergies (Egg, Peanut, Dairy, and Corn)
• Eosinophilic esophagitis (which is a disease in which he has white blood cells in his esophagus that attack the food he eats so he can't get the nutrition from it)

So Zach and I are currently on an elimination diet of Wheat, Eggs, Nuts, Dairy, Soy, and Fish

That's us!

[chann96]

My daughter Charlotte is 13 months now. She was diagnosed in utero at 23 week with spina bifida (L5-S1) and hydrocephalus. She was delivered by planned c-section at 35.5 weeks as her hydrocephalus was progressing and we all agreed it was best to get her out and treated. She had surgery at 12 hours old to close her back lesion and at 5 days old to install her vp shunt. She also has arnold chiari 2, but is asymptomatic fortunately. She is supposed to receive pt 2x per month but it's screwed up right now. Fortunately I've been given lots of suggestions of exercises so I keep up with that with her. She has learned to pull to standing in the last week and we expect her to walk with minimal (or even no) assistance. She has no cognitive delays, but may be showing some signs of a speech delay (I'm not yet prepared to call it that, but the doctors do).

Ann

[Simisma]

Our baby (#3), due Sept 4, is a Trisomy 13. There are 3 chromosomes of # 13 in each cell of his body. He does have holoprosencephaly, and heart defects, which are common with this syndrome, also called Patau's. They tend to have very short lives and different facial features. We were told it is associated with advanced maternal age. Turns out average age of mothers is 30. I will be 41 in July. Have any of you heard the comment: You're young, you can always have another one. Or (this was my mother): I wish you hadn't decided to continue the pregnancy. ?

Maybe this belongs in another forum.

[mamasun]

If you believe, as I do, that children can be our teachers, then your baby has already taught you so much, about love, compassion, and even fear (I've decided that most of the strong reactions my ds gets is b/c of other people's fear, of the unkown, of differences, of pain, etc.) I'm sorry to learn of the comments you're already receiving--my ds has caused us to hear a lot of nonsense, too, though we've developed a bit of a thick skin. As for your mother, maybe her reaction is also one of fear--fear for you, and your family, and for the unknown this new baby represents.
Blessings to you and your child, I will be keeping a good thought for you.
Jennifer

[CaliMommie]

I haven't had anyone comment about either of those issues, but I have had people say, "Well, surely you won't have any more, just in case" or "Maybe he's allergic to chemicals in your home" (yeah, cuz we clean with baking soda & use natural products & eat organic : ) or (this was wed. from his gastro specialist) "That's weird, he always does so much better when he comes to see me, but when he goes home he gets worse". It's so frustrating & I'm sorry you are having to deal with these insensitive people. Part of the reason we get so many comments is b/c he still doesn't have a complete diagnosis & his symptoms are sporadic. mama. We are always here to listen.

AmiBeth