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Post your childs diagnosis!! - Page 6

post #101 of 735
My 4 1/2 year old ds has a speech/language delay, accompanied by inattantion, impulsiveness, hyperactivity at times. Possibly some SID concerns as well. I know this is very mild compared to what some mamas here are going through.

I really appreciate the support & information I have received from the mamas here over the past couple years. Everyone who has responded to my posts has been so helpful. Hugs & love to you & your children.

post #102 of 735
My son just turned four. He is diagnosed with autism in the mild-moderate range. He also has cystic fibrosis and alpha-1-antitrypsin deficiency.

As far as the autism. Just because everyone asks me: he was born at home, in the water, with no complications. He did not receive any vaxes until 15 months, when unfortunately we were pretty much bullied into the flu shot with mercury due to the cystic fibrosis. He was not in good health at the time, which both influenced our decision to give the shot, and probably the damage it did. He received a DT (not sure if it had mercury, I need to find out) at around 2.5 years old. Those two vaxes are the only he has ever received. No MMR, no hepB. I can only imagine how severely autistic he might be had he received a full slate of vaccinations.

He is breastfed (still, at four), we family bed, did sling, I tandem nursed with his sister for the first year of his life, we eat well and organically. He is off of gluten and casein and we have been doing classical homeopathy since December. Due to the cystic fibrosis, we have hesitated entering the world of megadoses of supplements, but are giving him some B vitamins including B6/P5P, magnesium citrate, taurine, probiotics, and cod liver oil. Oh, and DMG sometimes too.
post #103 of 735
I'm Laura, mom to Daniel & Noah.

Daniel is 2 1/2 and has an expressive speech delay. we're Not sure why, although I wonder after reading other posts about the MMR, he had a high fever and spots after it. I do think part of it is just that he is a very active boy, crawled at 6mo walked at 8 and hasn't slowed down since. He is just starting to speak a few short sentences and we are almost completely potty trained.

Noah Has Down Syndrome, not the typical Trisomy 21, but what is called Translocation, he doesn't actually have an extra chromasome, just part of the 21 material is attached to another chromosome (in Noah's case it is chromasome 15) . Translocation DS exhibits the same traits as Trisomy 21 but can (but not always ) be inherited where Trisomy 21 is just random. It is probable that I am the carrier as my youngest brother also has a translocation defect which gave him characteristics of William's syndrome. My husband and I have decided not to do the testing to find out for sure if Noah's condition was inherited or random.

Noah also has multiple heart defects: Double Outlet Right Ventricle, AVSD, & pulmonary starosis, the symptoms & repairs are very similar to Tetralogy of Fallot except that we are waiting as long as possible (till his left ventricle is more developed) for his repair to increase chance of a successful double ventricle repair.

He also has pulmonary stenoeis and was given a BT Shunt
post #104 of 735
I can't believe I haven't been over here yet...

I'm Amanda, and our daughter Alyssa will be 10m on Friday. I had a severely complicated pregnancy - GD insulin-dependant at 7w, PIH, PI-tacchycardia, moderate bedrest from 10w on, low amnio fluid, Grade III placenta starting at 29w, IUGR. They now think that I have a rare blood disorder that cause a lot of it.

Alyssa has had a rough road, but not nearly as bad as some of the ladies in here. Severe Torticollis started at 6w old, by 4m extreme hypertension on the right side. We had just about gotten her going from that when the real blow struck, SID.

The SID is seated mostly on her left side and in her mouth...plus any sort of circular motion. Food is a real issue, she only eats crunchy table foods, nothing mooshy. So we're trying to figure out new things all the time.
post #105 of 735


Hi, everyone. My heart goes out to all who have posted here.

My seven-and-a-half-year-old daughter has hemihypertrophy. Her right arm and hand are larger than her left (in girth). We noticed the difference at birth. Hemihypertrophy is unfortunately associated with an increased risk of various cancers (e.g., Wilms tumor [kidney cancer], adrenal cortical cancer, liver cancer) and other rare congenital disorders (e.g., neurofibromatosis). Wilms tumor is particularly aggressive and can go from nothing to palpable in six weeks. We have been screening her regularly since birth for abdominal cancers (ultrasounds every three months, abdominal palpation and urine screen for hematuria [blood in the urine; a kidney tumor indicator] in between the ultrasounds, blood screening for AFP [a liver tumor indicator]). She's had many other evaluations as well (e.g., genetic, orthopedic, neurodevelopmental, nutrition, physical therapy, etc.). We cannot assume that an odd bump or mark or other odd symptom anywhere on her is an ordinary thing. All of these evaluations and screenings, of course, involve much effort to make happen (referrals, scheduling, rescheduling, getting results, fixing mistakes, etc.). Even though she is "just fine" in most ways, it's a part time job watching to be sure that nothing changes.

In addition to the overgrowth of her right arm, my daughter has other physical differences: extra space between the fingers of her right hand, unusual palm print, excess curvature (extra concave toward the palm side) of her hand, right shoulder lower than left, right shoulder blade somewhat different than her left, apparent extra soft tissue in her right chest area, mild lordosis (excess inward curve of the lower back). She also has "fetal pads" on her fingers and toes (the pads on her finger and toe tips are bit extra pointy), which I have been told by a geneticist are due to edema in utero. I know of no link between fetal pads and hemihypertrophy, though an internet search shows fetal pads to be related to other congenital disorders.

She also has mild sensory integration issues, best described in laymother's terms as having much keener senses than most folks: she sees more, hears more, feels more. This results in being more aware of, startled by, and irritated by environmental stimuli than most folks. For example, noisy (and quiet) insects flying by are quite frightening to her: she can't stand the unexpected sound and movement right by her ears and eyes. She can feel dizzy due to certain kinds of sounds. She hears things no one else notices until she points it out and everyone gets quiet. (Thankfully, her distress due to these issues seems to be decreasing over time and her skill at coping with the distress she has seems to be increasing.) Her "keen senses" also contribute to precociousness in language, music, and movement (e.g., dance, Tae Kwon Do). She is gifted in a variety of areas and learns powerfully through observation (watching, listening): she speaks, reads and writes three languages, her verbal skills are well beyond her age; she began reading at the age of 2, she could read music at the age of three; she is a skilled pianist (playing piano since she was 2 and a half) and can play anything by ear, she can transpose any song she knows from one key to another instantly and without effort; she can mimic any dance style with grace and accuracy and can learn a Tae Kwon Do poomse (a complex choreographed series of blocks, kicks, and punches) with amazingly little effort and time, etc.

While I feel fairly well informed about screening protocols and hemihypertrophy in general, I still have many questions for which there seem to be no answers. And while I have two friends who deal with chronic health issues in their children due to congenital disorders, they don't know what it's like to screen over and over again for cancer. And, the vast majority of people I know have no idea what it is like to be forever watching and waiting to see if anything horrible will happen to their child. Most of the time I feel like I know more about my daughter's health issues than even her specialists. I have corrected them when they are wrong--which is very disconcerting. While I am proud to be (and tired from being) such a persistent and involved advocate for my daughter, I'd like to be able to count on her specialists to have up-to-date information. I can respect "I don't know" as an answer. I can accept ignorance in a non-specialist. But I don't want misinformation from a specialist.

I have also found it challenging to find health care providers who have any clue about "attachment parenting" type issues. We have "fired" any number of health care providers because they were condescending to us and/or behaved in ways that did not remotely meet our daughter's needs. I am pretty (though not fully) satisfied with our current team.

I've been looking through the archived messages and have seen no posts on hemihypertrophy. Is anyone in this group parenting a child with hemihypertrophy?

Thanks for listening.
post #106 of 735

What a great thread....

Hello! I am Kellie, and I have Riley, 5, who had lots of issues as an infant (vocal cord paralysis, seizures, stridor, reactive airway disease) following a very traumantic birth. He grew out of those and now that he is in school, his teachers have already started on that Riley is showing both gross and fine motor skills delays and possible ADD. I'm eternally gratefuly to find this group!!
post #107 of 735

Asperger's Syndrome & ADHD

We have a 6 yo DS with Asperger's Syndrome & ADHD. Right now we are dealing with a lot of emotional & behavioral issues. At home, the morning routine is really tough---just getting him ready & off to the school bus is a challenge. Also at school he is working on keeping friends.
post #108 of 735
okay.. it may just be some wax build up in the one ear, but on one of the tests they did yesterday, a good response is a bell curve. A flat line indicates a problem. And its the same ear as his ear tag, so its "highly suspicious" that he might have hearing loss in the one ear. The ear tag is a "red flag" as the medicos call it.

he's going to have to be tested again. and again...

At least I know my hearing is fine... I ended up with a headache and tinititus(sp) from the test.
post #109 of 735


Hi all.... ((((moms & families))))

You know those heel sticks they do in the hospital when the baby's born? My son's kept coming back inconclusive. Finally at 2 mos they discovered that his thyroid gland never descended from under his tongue (where it develops in utero) so it wasn't producing enough. So he started Synthroid at 2 mos. Okay fine my child would have to be on medication all his life, but we had caught it in time, so I mourned it and moved on.

When he was 5 (2001) he started having these wierd headaches. They would manifest identically...about 1:15-2am he would wake up screaming, I would give him ibuprofin and nothing...he would continue in horrible pain, always 45 min - 1 hour from waking up he would throw up all clear liquid, then he would pass out like the dead. So I thought, food allergy, eyesight, a million possible things and took him to his pediatrician. The doctor ordered a head MRI the next day (I'm thinking he's so overreacting, but whatever), as soon as they finished the MRI they moved us to a private room and asked us to wait because they had seen something in the MRI and wanted to find out how to proceed.

Long story short...my son had a craniopharyngioma...basically a fluid filled cyst right between the optic nerves and siting on the third ventrical which had gotten big enough that it was blocking the flow of cerebral fluid and causing intercranial pressure. We went from diagnosis to brain surgery in 6 days, on 9/11/01 my son was having the tumor removed.

The possible outcomes were numerous from total removal w/o side effects, to blindness, to death, and everything in between. Well in order to assure removal of all the tumor the doctor took most of the hypothalmic stalk whick meant that my son's pituitary gland would no longer get signals and would no longer work. So he was put on more medicines daily in addition to his synthroid. He started growth hormone therapy last year giving HIMSELF one shot a night, 6 nights a week, which will continue for at least another 10-14 years.

He is now 9 and has been tumor-free for three years. Thank the Almighty. We have finally worked through most of the mourning and depression from losing the child we had, and have come to understand and continue to love the child we now have. We (ds and I) consider ourselves very lucky and blessed that these are the only physical trials he has from the surgery. Many others struggle daily!

Thanks for this thread and light and blessings to those making it one day at a time.

post #110 of 735

Hope this is okay to post here

This was posted years ago on another board I'm on for my son's dx. It really helped me to accept what we were going through.

WELCOME TO HOLLAND: an essay by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability....to try to help people who have not shared that unique experience to understand it, to imagine how it would feel....It is like this..........

When you are going to have a baby, it's like planning a fabulous vacation trip....to ITALY. You buy a bunch of guide books and make wonderful plans, the Coliseum, Michelangelo’s David, the gondolas of Venice. You may even learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says....
"Welcome to Holland!"

"HOLLAND???" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and decease. It's just a different place.

So you must go out and by new guide books. And you must learn a whole new language. And meet a whole new group of people you would have never met.

It's just a different place.
It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while you can catch your breath. You look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandt.

But everyone you know is busy going to Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was suppose to go. That's what I had planned."

And the pain of that will never, ever, ever go away....
because the loss of that dream is a very significant loss.

BUT if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy
the very special, the very lovely things about Holland................

the end
post #111 of 735
My dd was recently "diagnosed" with breath-holding. She was diagnosed after about 5 minutes (the doctor seemed to suddenly get the idea) and after the doc stated that Isabel didn't fit the list of symptoms - she has only one of the seven symptoms, which is the age requirement. I am looking for others that might have received such a diagnosis. I find this most concerning because the only diagnosis they gave us said that we should not be alarmed whatsoever when she turns blue and passes out.

She is also a 29-week preemie who is now 13 months, and has acid reflux but my DH seems to not notice the coughing and spitting up (silent reflux doesn’t always have this anyway) so the doctors seems to listen to him.
post #112 of 735
I am the mother of a 2.5 year old girl who has severe childhood apraxia of speech and SID. At 21 months she was diagnosed with Apraxia but we were told that she would not be able to get therapy untill about 4 years of age. Through extensive research, we learned the importance of early intervention and found a therapist in another state that was familiar with CAS She was willing to do therapy sessions privately each day, and our daughter felt comfortable with her, so I took Sarah and my newborn and moved into our 8 foot popup camper to start the therapy for her. My husband stayed and continued to work and get the house on the market. This fall we moved into a larger camper while we continue to wait for our new home to be completed. The therapy is proving to be WELL worth every sacrifice. She is learning to communicate and is relying less and less on the sign language we taught her and more and more on spoken words. I can never tell you how beautiful it is for me to hear her tell me things. I long to know all that goes on in her beautiful little head. She has a long road ahead of her, but we are behind her every step.

Thank you to all you wonderful Moms and Dads out there. I have been lurking around here, reading and receiving encouragement from you for the past several months. Many times I have just sat at the computer reading your posts with tears streaming down my face. It is wonderful to feel that there are others out there that understand some of what we are facing.

I wish I could invite all of you over ( I guess you would have to wait for the house to be finished, there isn't much room in the camper!) and we could all just hang out. We wouldn't judge each other for our children's "odd" behavior and we could rejoice with each other over each little step our children make.
post #113 of 735

I have two special needs children

I am new to these boards and haven't quite got the hang of it so i hope this ends up in the right place!

I am Claire and have eight children two of which are special needs. Dominick (Nick) is four (five in January!) and was diagnosed autistic right when the school year started. Avigale (Avvey) is three and was diagnosed as bipolar in mid October. I also have an almost six year old boy, Two year old boy, one year old girl, and five month old triplets who are boy, boy, girl. Eli, one of the triplets, was diagnosed with craniosynostosis which is fixable and somewhat common in premature multiple births. He will have surgery mid January to correct it. I hope everyone is well and I look forward to meeting you!
post #114 of 735
Wow, you certainly have a full plate. I think this is a great place - at least to start - for support and finding others who can share information and support; if not just to know you are not alone. Welcome.
post #115 of 735
My daughter, Phoebe is 2 yrs and 4 months with Trisomy 13, a relatively rare chromosome defect. She was born with congenital heart defects which were repaired with open heart surgery. Because she aspirates, she is not fed by mouth but through gastronomy tube. She is profoundly retarded and is not expected to ever walk or talk, although she is definitely not a vegetable.
post #116 of 735
Hello, I'm new to the boards. My daughter, Kalynn, has Neurofibromatosis type 1. She has a plexiform tumor that is 6 cm long underneath her tongue, and bilateral optic gliomas. For right now, we are doing MRI's every 6 months to watch things. Right now, everything is stable.
post #117 of 735

Smith-Magenis Syndrome

Hi everyone. I have recently refound these boards and I'm glad I did. I am a SAHM to 6 wonderful children. 4 boys and 2 girls. My 3rd child (and DD #1) was diagnosed in April 1997 with Smith-Magenis Syndrome. It's a partial deletion of the 17th chromosome. They have to do a special chromosome test called the FISH test to find this syndrome, normal chromosome testing will not find it. She is now 8 1/2 yrs old and hollering at me to hurry up and "X out of puter now mommy" as we speak! LOL I'm glad I found this forum!

post #118 of 735
I thought I would introduce myself.
I have three children and one on the way.
My four year old has fetal alcohol effects and was diagnosed with early onset bipolr disorder. He is developmentally off the charts and has a very high IQ but his behaviors can range from elated mania to violent rages. No fun at all. He is currently on a cocktail of meds to help stabilize rapid cycling and rages.
post #119 of 735
Hi, I'm glad that I've found this section. I am the mom to Dustin and Dorothy. Dorothy is 3.5 and has severe food allergies. She has anaphylactic reactions to all tree nuts, including trace amounts even if they are not injested. She is also anaphylactic to soy protein, though she tolerates the lectin and the heat processed oil. Additionally, she is allergic to eggs. She is also "allergic" to the cold. She breaks out in severe hives anywhere that is exposed to cold temperatures.

I find all of this frustrating because she does not understand why she can't go outside in the snow (or outside in the winter without a mask), to birthday parties, have playdates, have ice cream and all of the other normal 3 year old things.

We've considered public school with a 504 plan, but I'm finding it increasingly more difficult to trust that other people care to keep her safe as much as her family does, so, we are gearing up for homeschool.
post #120 of 735

I have three children, two have special needs. Down Syndrome and Autism. nt

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