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#181 of 736 Old 09-16-2005, 03:19 AM
 
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My son Jordan has (had?) Crainosynostois in which some of the sutures (opening that all babies have) in the skull were fused at birth, Plagiocephaly (really crooked head), Torticollis, high muscle tone, delays in gross & fine motor skills and speech. He had surgery at 5 months where they took out a portion of his skull that was supposed to close back up but it hasn't so he will have surgery to repair that when he is 4 or 5. He wore a cranial remolding helmet for over a year and received a lot of correction for his plagio but will still need additional surgery (hopfully at the same time as his other surgery) to correct the still severe assymetry to his head & face. He receives therapy through EI for his developmental issues and is the happiest child I have ever seen.
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#182 of 736 Old 09-22-2005, 03:28 PM
 
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Hi I'm new to this site,
I have 4 children, the older three are girls and are developing normally.
My youngest is Dominic and is 6 months old, he has microcephaly and cranisostenosis. We are not sure if surgery is required yet or not to open his cranial suture that has fused. His head measure dramatically small. Since it could be caused by genetic syndromes he is going to have testing in that area as well. He also has strabismus, reflux for which he takes prilosec, and is tongue tied. He has some mild abnormalities of his jaw, and toes. His appt with a neurologist and pediactric neuro surgeon is next Monday. Waiting for answers has been tough.
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#183 of 736 Old 09-25-2005, 12:44 AM
 
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TiaLC! Welcome!!!!

waiting and not knowing is SSSSSSSSSSSOOOOOOOOOOOOO difficult!

Keep posting! Glad you are here!
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#184 of 736 Old 09-25-2005, 09:49 PM
 
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I have 3 girls, two of them are hard of hearing.
They are very bright. My oldest just got mainstreamed iin
a regular school this year. We were very pleased that the program for hard of hearing/deaf children advanced her speech and language a ton! She is very fluent in sign language as well. I taught her how to sign when she was young. By the time she was two, she knew all of her colours, numbers, and ABCs. My youngest just was newly enrolled in the same program as my middle child. She is doing great. They have hearing aids, and have the same lost as my mother, and myself.
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#185 of 736 Old 09-25-2005, 11:32 PM
 
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Quote:
Originally Posted by TiaLC
Hi I'm new to this site,
I have 4 children, the older three are girls and are developing normally.
My youngest is Dominic and is 6 months old, he has microcephaly and cranisostenosis. We are not sure if surgery is required yet or not to open his cranial suture that has fused. His head measure dramatically small. Since it could be caused by genetic syndromes he is going to have testing in that area as well. He also has strabismus, reflux for which he takes prilosec, and is tongue tied. He has some mild abnormalities of his jaw, and toes. His appt with a neurologist and pediactric neuro surgeon is next Monday. Waiting for answers has been tough.

It's hard when you don't know the answers :. We went through that with my youngest for a little while. She kept losing weight and she was miserable all the time. Turned out she had silent reflux and food allergies. Not the same at all, but I relate to the testing and wondering what is wrong with your kid!
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#186 of 736 Old 09-29-2005, 09:44 PM
 
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Hello,
So glad i found this site. My partner and I have 2 wonderful children. Our son is 3.5 years old and we have a special needs daughter who is almost five months and has downs syndrome. She is very healthy. Breastfed right from the start and pretty strong considering her low muscle tone. She has a very small heart murmur which will be rechecked in Dec. Beyond that we just do a lot of therepy and try and stay on top of any possible medical issues. We are also very interested in exploring alternative therepies for her. Looking forward to getting to know about you and your kids.
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#187 of 736 Old 09-30-2005, 04:52 PM
 
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I am a brand new member and I have been reading some of the other posts, so I guess I will share our info. I have an eight year old with Aspergars and a six year old with Autism. My older son was not diagnosed until he was five and a half years old. Sadly he changed into a different child after his vaccinations for kindergarten. I was aware of the changes largely due to the experience I had with my younger son. My six year old was typical as far I could tell until he was eighteen months old and got vaccinated. He was hospitalized due to a fever of 105, vomitting, and completely lethargic and non-responsive. He was released a week later. He couln't speak or even babble, he didn't have the motor control to nurse, and was eventually diagnosed as failure to thrive . He had repeat episodes of the fever and vomitting, once a month for about six months. I was ready to deliver my third child at about the same time. I spaced out his vaccinations, but decided to give him a DTaP shot around two years old, and he has had intestinal trouble ever since, and he is five years old now. We knew we would not give the other boys the MMR, but didn't suspect the DTaP, and now it breaks my heart to think this all might have prevented. Our fourth son has delayed speech, but is doing better (he is only partially vaccinated), and our fifth son ( 2 months new) will be free from the risk of vaccination. We have made good progress with our second son, which I feel is nothing short of a miracle that he can speak , and is growing. I am glad to be part of this group, and feel a renewed energy just by reading the stories of these strong and loving mommies.
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#188 of 736 Old 09-30-2005, 05:11 PM
 
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Hi Kalynnsmom (and all the others in this thread!)

Kai is seven now and doing well. He is seeing an occupational therapist once a week at a local hospital and it has been fabulous! He is really making strides in his fine motor skills. He also sees a school OT twice per month, but has only had his first appt. Kai has lots of cafe au lait spots, inguinal freckling (and other places), one optic nerve glioma, and two pleixform fibromas (one on his buttock that is growing, and one on his jaw line that is small and unnoticeable). He has lots of little fibomas, mostly unnoticeable at this stage, except one that is distorting one of his fingers. He also has some large ones on his scrotum/perineum area that are bothersome and tender. We haven't had him see a neuropsychologist yet. He seems to be doing pretty ok, but I suspect some ADHD. In any case I don't think we'd treat it much, just as an aspect of his individuality.

Glad to see your post!
Carolynn

Our one problem is that Kai doesn't know he has NF. We figured he'd ask at some point why he sees doctors and so on, but he hasn't. So, our child-led discussion hasn't happened. We are wondering if we should proactively bring it up. Part of the hesitancy is that we don't feel like we are at a place where we can talk about it in the confident and matter-of-a-fact way he deserves; we're afraid we'll break down. Lame, huh?

Quote:
Originally Posted by kalynnsmom
Hi Carolynn. I realize that this is already a year old, but I hope you see this post. I'm glad to have found your post!

My daughter Kalynn, who is 3, also has NF. She has many cafe au lait's, inguinal freckling. She also has bilateral optic nerve gliomas. She also has a plexiform fibroma underneath her tongue that causes chewing and articulation problems.

She is a little behind on gross and fine motor skills.

She is also at risk for ADHD per the neuropsychologist. She will be starting school next week for the speech program.
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#189 of 736 Old 10-03-2005, 11:49 AM
 
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Hi! I think this is a great idea. I also agree with the lady who said that she often feels like she's a member of a secret club. Ever since my son Christian, who turned 3 on August 30th, has been diagnosed with autism disorder (a month ago), I definitely feel like I'm a member of a very special group. I've been to many different playgroup sessions and have met lots of great parents and adorable children. This has been a very enriching experience and I believe it's made me a better person and parent. I'm very pleased to meet you all.

Chantal.
Mother to Christian - 3 years (autistic), and Matthieu (4 months)
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#190 of 736 Old 10-03-2005, 12:03 PM
 
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Originally Posted by indiegirl
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
You chose beautiful names for your daughters!! Just wanted to let you know...

Hugs,

Chantal.
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#191 of 736 Old 10-04-2005, 03:17 AM
 
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Hi,
My daughter's disability is due to ABS which affected her left arm. She is missing her forearm and hand from below the left elbow. I went through a basically uneventful pregnancy though I was diagnosed with gestational diabetes at 10 weeks but kept tight control of my blood glucose levels with diet and insulin injections. Though we had lots of ultrasounds we had no idea she had been affected by anything until she was born. Thankfully I had a great ob/gyn who was upfront about it but assured me everything would be ok. I had great nursing care and support from the staff. Luckily enough I worked with these fine folks in L&D during my entire pregnancy up to delivery. I immediately blamed myself & wondered what I did wrong but my hubby told me it wasn't my fault as I had done everything in my power to take care of myself & our baby. After the pediatrician came in & told us more about this condition we realized that we were indeed fortunate to even have her. We have come to terms with this and realize that she's not really disabled as much as challenged. There's not a lot she can't do with just one hand and that one hand is super fast. We would have no hope of keeping up with her if she had two hands.

Mamid-it's too bad your CPS social worker is so short sighted and ignorant in the fact that sign language actually increases your child's language and communication skills. I think sign language makes them smarter. We're teaching our daughters sign language and even our 2yo with one hand is able to sign. We're using a series called signing time with our toddler & from what we can see it can be used for just about any child including those with downs syndrome or other developmental delays and that it decreases frustration meaning less temper tantrums.

It's great to see we've all been blessed by our special angels in our own way.
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#192 of 736 Old 10-05-2005, 10:48 AM
 
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Hello again
We are still in diagnosis limbo it seems.. We had DS evaluated by a Dev Pediatrician who said he had severe ADHD and ODD.. we felt this was not right.. while he is impulsive and defiant.. no more so than any other 4 year old we know.. So we saw a Psychologist who spent 5, 1 hour session evaluating him. The Dr feels that DS has pervasive anxiety as well as SI problems but that he doesn't have ADHD or ODD... Our next course of action is trying to get play therapy covered by the school district..

Chantal (the other Chantal )
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#193 of 736 Old 10-16-2005, 10:31 PM
 
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It is very difficult to get a diagnosis on a five year old unless they CLEARLY have a disability like cerebral palsy, chromosomal anomaly, etc.

My own son was diagnosed ADD, ADHD, ODD at that age. By the time he was 8 he also had clear learning disabilities.

Sadly, many "diagnosis" cannot be confirmed or substantiated until children are older.

IMHO: ASK QUESTIONS! INVESTIGATE EVERY AVENUE! You are your child's best advocate!
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#194 of 736 Old 10-17-2005, 03:40 AM
 
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Hi,
I have a 6 year old daughter who has a diagnosis of a "reactive attachment disorder". I actually have guardianship of her and have for the past 18 months. She was placed in foster care at the age of 18 months. Her birth mother was very young and tested positive for drugs at the time my daughter went into foster care. Her foster mother adopted her at the age 3 and then at the age of 5 foster/adopted mom decided she could "no longer meet her needs" as she put it. So that is when I became a mother! She is very sweet,outgoing,affectionate, and a chatter box.
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#195 of 736 Old 10-22-2005, 03:36 AM
 
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I'm mama to Dashiell, who was born July 14th and who is just over 3 months. On Wednesday he was diagnosed with Cri du Chat Syndrome ("Cat's Cry") which is a partial deletion of the 5th chromosome.

It's an extremely rare disorder, occuring in 1 in 15,000 to 1 in 50,000 births. Only about 50-60 kids a year are diagnosed in the US. The most distinguishing feature is the fact that many babies cries sound like that of a cat or kitten, hence the name. This isn't a feature my son has though.

While the news is still devastating, it's not a total shock, as I had thought something was different since he was born. His eyes are spaced more widely than with "normal" babies, so that was a characteristic I'd noticed. Also he has a small head (roughly 2nd percentile) which is a trait. At his first pediatrician's visit at 2 days old we were sent to the hospital to test for hypothyroidism as a result, which it turns out he didn't have. When I had been searching on Google about that disorder, and many other disorders, I came across information about the single palmar crease, or simian crease, on his hands, which is common in several genetic disorders, including Down's. I knew he didn't have Down's because he didn't have the distinctive facial features, but ever since that discovery I'd had a kind of sinking feeling, which was confirmed this week after he had blood drawn last month for genetic testing.

We have no idea how this will affect him though. This syndrome often has mild to severe retardation as a result, with both mental and physical delays. Because he has mild symptoms now, I'm hoping that it will be mild, but I guess there's no knowing, just watching how he develops against the usual milestones. Also, from what I can tell, there are many things not known about this syndrome... for starters it's not common, up to the mid 80s it was common to institutionalise children with CdCS until they realised homereared children did much better. And the improvements in genetic testing mean that many mild cases might have gone undiagnosed up 'til now. Had it not been that I'd wanted his palmar creases checked, and a few other small things, I think he might have been one of the kids that went undiagnosed for a while, though we do have a very attentive set of pediatricians who picked up on a couple of other issues.

He also has a heart murmur, because of a Patent Ductus Arteriosis and a Patent Foramen Ovale. He's being monitored for both for now (and has since he was about a month old), these are both things that occur fairly regularly and often close by themselves. If there is no improvement then he'll get medication first to try and correct it, otherwise it's a minor surgical procedure via a catheter.

For now he's doing well. CdCS kids are often born with quite low birthweights, so at 7lb6oz (which is pretty average) he has a much better chance already. His weightgain will be slow (he's only about 11lb6oz now at just over 3 months) and I hope to exclusively breastfeed him as long as I can.

Sometime soon he'll be evaluated for NY state's Early Intervention programme which offers Speech, Occupational and Physical therapy, as well as various other services and support. My husband and I will be getting tested soon to see if it's just a random occurance or if it's possibly from either of us having a balanced translocation of our genes, handy to know as we would like other children in the future.

Sorry if this is a bit rambly I'm still sifting through a lot of emotions, feelings and information. I'm glad to find a forum where there are parents with special needs children... other people who'll better understand what I'm going through.

I'm trying to steer clear of many of the "why me/us/him?" lines of thinking, because the situation is unchangeable and beating myself up over it is fruitless. Sometimes I feel bad for feeling like I'm mourning a child that isn't even dead, because that's what it's like when you hear this kind of news. The "good" news is that it wasn't anything I did or didn't do during or before pregnancy, but the bad news is also that because it's a genetic disorder, there is nothing to fix it, unlike most medical conditions. Thankfully there is therapy to maximise his potential.

The worst part so far is just not knowing. All the set expectations you would have with normal children just go out the window and everything is up in the air. In a way I guess it might be a good thing that he's my first, so there's no precedent for me to measure him up against.

Other than that I love him to pieces, and he's beautiful to me. Nothing will ever change that.

Anyway, nice to meet you all

Mama to Dashiell (July '05) and Matilda (March '08)
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#196 of 736 Old 10-23-2005, 10:20 PM
 
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Hi Marieke
Many s for you. Finding out your child is different is hard. I know I felt/feel angry and guilty and sad and upset about my son's differences.. and his are so mild compared to some that I then feel guilty for feeling upset about them. You should feel proud of yourself that you took a proactive approach and now your son can get the help that will best benefit him.
s

Chantal
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#197 of 736 Old 10-23-2005, 10:53 PM
 
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Marieke!!!!! An old aquaintence of mine has a son with CdCS!!! I first met them when he was a babe. He is now 13 and in middle school and one of my clients!!!! I know it is very rare and I know she, as a mom, has struggled greatly. But WOW, what a great son and delightful person he is!! Big hugs and prayers to you!!!!
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#198 of 736 Old 10-30-2005, 03:19 AM
 
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Hi everyone!
I am not new to Mothering magazine, but I am new to this website and these boards. I have spent some time this evening reading the messages in this thread, and it seems like a great forum! I'm name is Krista, and I'm a sahm to 3 (stats below). My 3 year old Anika is our first special needs child. She was born at 33 weeks and had HIE at birth. This has resulted in her having mild low tone CP, laryngeal/tracheal malacia, Chronic Lung Disease/Asthma, Severe GERD- has a fundo and is supplemented with a g-tube, and she also has random sensory issues. Like someone else said, she looks like a train wreck on paper, but IRL she is an amazing little firecracker. My 17 month old Corbin is still in the process of getting a diagnosis. He has been completely healthy until he hit 15 months whe he started having strage episodes of arching/stiffening and screaming for hours at a time. He was hospitalized for 14 days to no avail. He has been losing weight slowly even though he eats like a little piggy (and he just weaned himself a 2 weeks ago ). He also seems to be losing gross motor skills- this is a new symptom we just noticed this week. He used to be a very strong/solid walker, and now he falls constantly- for seemingly no reason. My 5 year old Madison is typical in everyway except she has some more anxiety than most kids- I've always had anxiety problems too; so hopefully I can help her a long with that. She is also a gifted child, and I think that goes with the territory. It's nice to meet you all, and I look forward to posting in this forum more.
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#199 of 736 Old 10-31-2005, 02:33 PM
 
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Hi I'm new to mothering community. I am a single mom to my 2 1/2 yo dd Cordelia Anne. She was born with dislocated hips and very shallow hip sockets and was in 2 types of braces for her 1st year of life. Very early on I noticed that her right leg was longer and her right ear was larger. Her orthopedist thought she might have hemihypertrophy, so we were put on the waiting list to see the genetics Dr. which took about 11 months. When her appt. finally arrived the Dr. did not spend a long time in the room with my daughter and said that basically because her leg had no width difference that she did not have hemi. But ordered and renal ultrasound and x-rays of her arms but oddly enough not of her legs. The renal ultrasound showed that her right kidney was much larger I will have to dig the papers out to see just how much. She goes in 3 weeks to get x-rays of her legs to see the exact difference but with measurement by her orthopedist its about 1/2 inch. She also has a bit of a speech delay she has 10 words but does not say b, s, or t. She also does not put two words together unless you count when she says uncle d for my brother. Her primary ped. is not worried she says wait and see WHATEVER, I would switch docs but she is on cms and she is the only Dr. here that will take it, I also think the Dr. does not like me to begin with because I'm raising my dd veggie but that’s a whole other story...

Breanna mom to dd Cordelia Anne 6-4-03
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#200 of 736 Old 11-01-2005, 02:02 AM
 
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BriResa! Welcome!

cut to the chase: why didn't genetics dr do blood/genetics screening??? Sorry. When I got my son into genetics, i gave them a list of what I wanted him tested for. After they told me what they planned to test him for.

All was negative.

{{{HUGS}}}}
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#201 of 736 Old 11-07-2005, 09:15 PM
 
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My oldest child is now 22 at the age of 9 he had a sledding accident and his left leg was severed and reattached The good thing is that he has a leg and I cried everytime I watched him march in the High School Band.

My oldest Daughter (21) has OCD issues and as a little one was speech delayed and suffered from hearing loss.

My youngest daughter might be 7 or as old as 9 and she became my daughter by adoption.... She attends Day Treatment and Her Dx includes: RAD (Reactive Attachment Disorder) Possible Bipolar, PTSD, ODD and pre-verbal sexual abuse..... We are not sure of fetal alcohol exposure or drug affects. She was born in the woods and lived her first four years of life in a shopping cart....

My Youngest son is 3 and the biological sibling of my youngest daughter--His birth saved both of their lives as birthmom got scared and decided to give birth to him in the hospital. He was born addicted to Herion and had EVERY other drug in his system. He remained in the hospital for several weeks and His birthmother was given 6 weeks to parent when he was released. After testing positive over and over while breast feeding the children were taken into foster care. He has had surgrey on his belly button twice because 'someone' picked at it after his birth. My youngest little guy is Dx, Sensory Disorders, Expressive Speech Delays, and overall 10 months developmentally delayed.
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#202 of 736 Old 11-07-2005, 11:34 PM
 
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Quote:
Originally Posted by CarolynnMarilynn
Hi Kalynnsmom (and all the others in this thread!)

Kai is seven now and doing well. He is seeing an occupational therapist once a week at a local hospital and it has been fabulous! He is really making strides in his fine motor skills. He also sees a school OT twice per month, but has only had his first appt. Kai has lots of cafe au lait spots, inguinal freckling (and other places), one optic nerve glioma, and two pleixform fibromas (one on his buttock that is growing, and one on his jaw line that is small and unnoticeable). He has lots of little fibomas, mostly unnoticeable at this stage, except one that is distorting one of his fingers. He also has some large ones on his scrotum/perineum area that are bothersome and tender. We haven't had him see a neuropsychologist yet. He seems to be doing pretty ok, but I suspect some ADHD. In any case I don't think we'd treat it much, just as an aspect of his individuality.

Glad to see your post!
Carolynn

Our one problem is that Kai doesn't know he has NF. We figured he'd ask at some point why he sees doctors and so on, but he hasn't. So, our child-led discussion hasn't happened. We are wondering if we should proactively bring it up. Part of the hesitancy is that we don't feel like we are at a place where we can talk about it in the confident and matter-of-a-fact way he deserves; we're afraid we'll break down. Lame, huh?
Hi, I am not a mother but my brother (31) has NF. I think that you should tell your son. Even if you can't have a big discussion about it, I think at 7 he should know. My parents never talked to my siblings and I about my brother, although we knew he had the cafe au lai spots, and some bumps, and then one day we were teasing him about something and he went up to his room crying. My mother yelled at us "you know he is different from you, don't you?!". That is what I remember of my parents talking to us about it. (Actually, I think another time they told us that he could have become blind during puberty because of the tumor growth.) I think starting small to say something like "you are at the doctor today because of _____. It's caused by NF which is....", is better that having a huge sit down at age 16 or something. I think it would normalize it. And certainly, if he has siblings, explain things to them too.

A couple of years ago my brother had a large abdominal tumor removed. It had been growing for a while (he had named it Phyllis), but didn't see any need to get it removed until it started interfering with his golf game. One of his doctor's told him it was cancerous and for a few months we thought he was going to die (he was perfectly healthy, but they said he had 6 mos. to live.) or have to have chemo and radiation. They were wrong, it was completely benign as most nf tumors are. It was so scary, and I think because we had never talked about it as a family, it was harder to start talking about it then.

While it is nice to hope that the discussion could be child led, I think you have to start it and then see where it goes from there.
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#203 of 736 Old 11-19-2005, 12:45 AM
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My son, who is 6, has autism. He started out very severe, to the point where both dh and I knew he was autistic by the time he was four months. At six, he is mainstreamed and while still a still eccentric, does remarkably well.
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#204 of 736 Old 11-28-2005, 05:34 PM
 
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Caden was dx with PDD NOS, ODD, ADHD... IMO I think he is ODD and thats all but the doctors feel other wise. He is doing so much better these days!! His TSS has worked wonders with him!
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#205 of 736 Old 11-28-2005, 05:39 PM
 
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Quote:
Originally Posted by HappyMomAnna
My oldest child is now 22 at the age of 9 he had a sledding accident and his left leg was severed and reattached The good thing is that he has a leg and I cried everytime I watched him march in the High School Band.

My oldest Daughter (21) has OCD issues and as a little one was speech delayed and suffered from hearing loss.

My youngest daughter might be 7 or as old as 9 and she became my daughter by adoption.... She attends Day Treatment and Her Dx includes: RAD (Reactive Attachment Disorder) Possible Bipolar, PTSD, ODD and pre-verbal sexual abuse..... We are not sure of fetal alcohol exposure or drug affects. She was born in the woods and lived her first four years of life in a shopping cart....

My Youngest son is 3 and the biological sibling of my youngest daughter--His birth saved both of their lives as birthmom got scared and decided to give birth to him in the hospital. He was born addicted to Herion and had EVERY other drug in his system. He remained in the hospital for several weeks and His birthmother was given 6 weeks to parent when he was released. After testing positive over and over while breast feeding the children were taken into foster care. He has had surgrey on his belly button twice because 'someone' picked at it after his birth. My youngest little guy is Dx, Sensory Disorders, Expressive Speech Delays, and overall 10 months developmentally delayed.



God Bless you! What a wonderful person you must be. Those children are truely bless to have found you.
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#206 of 736 Old 12-03-2005, 12:23 PM
 
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My son Isaac was born in April 2005. Everything was perfect until he didn't return from his circumcision. The pediatrician couldn't get him to stop bleeding. Finally, after hours and hours of bleeding he had to have a plasma transfusion. This stopped the bleeding. After being tested for classic hemophilia a, and having the results come back negative, my husband and I just assumed he had a botched circumcision. We went to a specialist just as a precaution for some follow up blood work, and that is when we were told that Isaac had less than 1% factor IX in his blood or sever hemophilia b. This was a complete shock because this genetic disorder does not run in my family. We havn't had any further problems but are told to expect them when Isaac starts to crawl. If anyone else has any information about this please reply.
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#207 of 736 Old 12-10-2005, 01:37 PM
 
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Hi my name is Stephanie and my son Thomas was born 8-19-98, Thomas has a very rare genetic terminal illness called Infantile Battens Disease. (www.bdsra.org). He was born at full term and was a very healthy perfect baby, He learned to talk, walk, eat, etc then around the age of 15 months old he started to regress and lost his abilities to do anything. By the time he was 2 years old he couldn't even sit up.

He has a feeding tube, has multiple daily seizures, we have been told he is blind and deaf but he can hear us VERY well. One of the main things with this disease is that his brain shrinks very fast. We were told when he was 2 1/2 years old that his brain (on an MRI) looked like a 90 year old mans with Alzheimers.

We were told when he was 2 1/2 that he could die any minute and probably won't last the next few months and here he is 7 years old.

He is the sweetest thing and the most wonderful thing that has happend to me in my entire life.

Thanks for listening and glad I can become of member of this group.
Steph
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#208 of 736 Old 12-16-2005, 02:50 PM
 
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Hi,
I'm new to the board and so glad to find mom's like me. I have 3 children, Anneliese, 11, Zachary 7 and Jesse who just turned 2 in November. He has been diagnosed with: Tortacollis, right sided weakness, hypotonia, motor planning difficulties, sensory issues and more recently apraxia, autism and mental retardation. What I have to remember is that these are human being guessing what "may" be wrong with my sweet boy. ..... He's seen developmental pediatricians, neurologists, metabolic specialists. Since age 8 months he has had therapies...including OT, PT, Sensory, and now they want to start ABA. Where is he now?? He can't walk yet and he started crawling at 16-18 months. My mommy gut is saying Cerebral Palsy but no one will commit to it or even check it out. I'm sick of all of this and I want to just let go and let GOD handle it all. Anyone else feel this way. He is the cutest and funny little guy. He loves to play and loves balls, and more recently he's discovered video tapes (baby einstein someone gave him). I'm really ready to give up the doctor stuff and just see what happens. The therapies can't hurt and we also see a naturalist who does Cranio-sacral and gives us creams and vitamins. WHEW, I'm tired....anyone else. Trying to balance the time between annie and Zach and work full time is hard. My husband is home full-time and that is great for us. So nice to meet all of you.
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#209 of 736 Old 12-19-2005, 10:41 AM
 
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Hello,
I'm new to this thread as well. I'm a single mother to a 14 year old son and a 1 year old daughter. My DS was dx with ADD at age 4, Tourette Syndrome at age 6 or so, ODD, OCD, a couple years after that, and a few years ago dx with depression as well. DS and I are having a very difficult time these days with is OCD and obstinance, OMG he is sooo obstinant, moreso than EVER before. I know probably has a lot to do with puberty that I may not survive. I'll get a break though, he's going to his dads for the Holidays, I'll miss him dearly but I'm so looking forward to the peace and quite (with a 1 year old, HA), but I'm sure ya'll know what I mean.
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#210 of 736 Old 12-20-2005, 05:05 PM
 
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I finally listed all of Nitara's procedures and dx on her website. Wow, when I see it all in black and white like that it's impressive! She's doing so, so much better though. My dd1 was dx with SID and some related behaviors but she's doing great too, for the most part. We just have to continue working on her behaviors.

Diagnoses and Problems:
Silent reflux, later GERD with projectile vomiting,
pain and dehydration induced high blood pressure,
Failure to Thrive, severe eating/oral aversions,
suspected delayed gastric emptying, constipation,
mild eczema, food intolerances/allergies,
Sensory Integration Dysfuction, Sandifer's Syndrome, torticollis,
mild developmental delays due to SID
and pain/discomfort from reflux,
chronic GI "bugs," croup 2x w/ blue episode and febrile seizures,
chronic ear infections, and eventually ear tubes.

Meds (tried at various times):
Mylanta, Zantac, Tagament, Prilosec*, Reglan,
many rounds of antibiotics.
*most effective
Claritin (currently taking)


Procedures:

Hospitalized for 6 days at 3 months old due to pain and refusal to eat. NG tube placed.
Kidney and heart ultrasounds at 3 mos old.
Endoscopy and biopsy at 4 months old.
Gastric Empty Scan at 6 months old.
G-tube placement and Endscopy w/ biopsy at 7 months old.
Ear tubes at 14 months old.
Speech and Occupational Therapy
Numerous trips to ER for rehydration during stomach "bugs."
Xrays to rule out internal bleeding and diagnose severe constipation.
Numerous blood tests for Celiacs, immune deficiencies, etc.

Current Status:
MUCH BETTER!!
She is no longer vomiting.
No visible signs of reflux.
Off Prilosec.
Growth is excellent.
Developmentally normal.
Discharged from both ST and OT.
75% tube weaned!

Remaining issues:
Cannot tolerate normal amount of food (more than 6 oz)
in stomach without spit-up.
Pockets food.
Coughs when swallowing food.
Suspected allergies.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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