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Post your childs diagnosis!! - Page 9

post #161 of 735
My oldest has celiac disease. Second kiddo is on the high functioning end of the autism spectrum, has sensory and auditory processing dysfunctions, asthma and allerges. #3 has no special needs, and #4 we're 80% sure has celiac disease also.
post #162 of 735

Type 1 diabetic

My six year old son has been a type 1 diabetic for over a year now. He is insulin dependant. He is such a trooper!
post #163 of 735

I know this is an old thread but I figured

I'd give my ds' diagnosises As well. My dh is 3 1/2 and has absense siezure epilepsy, Mild Cerebal Palsy, Primary IgM defiency, Bronchopulmonary Dysplasia, failure to thrive, Dysphagia. He has a gtube.


Amy
mom of 3
post #164 of 735

Son with Down Syndrome

Hi everyone. I think I share the same feelings as a lot of you. My son Gregory now 13 months, has Mosaic Down Syndrome. We have been dealing with things fairly well up until now. At times I just get burned out with all the intervention people who do not understand AP.
Our Down Syndrome Group is great but I struggle fitting in sometimes because of my beliefs on raising Gregory.
I hope to get connected with some additional support. All of the message stuff is new to me.
post #165 of 735

nice to meet you

My oldest is 7. He has autism (fairly aspbergers-y, and one Dr says now he would "only" qualify as: severe ADHD, OCD, with emotional issues and social maturity delays) he has asthma and mild allergies as well.
My second child is 6 and gifted, with a flair for dramatics.
My 3rd had breathing troubles at birth, several bouts of pneumonia the first 18 months. He's TINY (especially compared to my other kids!) but seems to be "normal"
My 4th had heart rate and breathing issues at birth. He has a cystic hygroma/lymphangioma. He has torticollis and plagiocephaly. He had RSV and severe bronchiolitis, so will most likely be dx'd with asthma eventually. He has muscle tone issues, general delays, mild reflux, dairy sensitivity/allergy (dx'd in the NICU when they supp'd him with formula once), drug allergy (vancomyacin), he had sepsis and a brain infection recently. We're wondering if he has a seizure disorder. The Ped is wondering if he has immune problems. He's only 5 months old.... so much remains to be seen.

-Kimmi
post #166 of 735
My little guy has been dealing with these problems from birth. He had excessive spitting up from day one, but has been doing better with that due to some meds the doctor has given him. He has severe allergies (food--very limited "safe" foods allowed), seasonal, and environmental. He has asthma. He has a twisted shin bone in his right leg (this affects his walking and running). Lastly, he can not regulate his own body temperature. He is a fun little guy to have, even with all these problems.

My daughter is dyslexic. We found this out two years ago now. She is doing much better with school these days, but we have a long way to go with her.
post #167 of 735

noonan syndrome

hello everyone. i have been posting on MDC for a few weeks but thought i should post here today to join in the discussion. My 7 year old ds was diagnosed with noonan's syndrome (NS) at birth. he is doing great now; but in the beginning we went through several surgeries, including open heart surgery, 2 operations for an undescended testicle; 2 eye operations and a hernia operation. It was very stressful for a few years but he is doing great now and we have to deal with low muscle tone, knee and ankle issues, a blood disorder as well as issues regarding malignant hypothermia and misc. other things i am probably not remembering right now.
on a spectrum, he is doing great but just wanted to pop in here to see what others are dealing with, especially with older kiddos.
Rach
post #168 of 735

Spina Bifida, Hydrocephalus, ADHD, LD, SID, etc.

Hello, I'm new here and thought I'd chime in about my kid.
Raven is 9 and going into 3rd grade. She was born with Spina Bifida and has paralysis from the waist down. She has a shunt for hydrocephalus (as most kids with SB) and has had many shunt revisions. She has a g-tube due to her sensory integration issues, but now only uses it for med's. Her diet is still whacky but at least she eats more than one thing. She also has non-verbal LD and ADHD which causes me more stress than any of her physical issues.

It's good to see other mamas dealing with the same day to day crap as me
Oh ya, and if any of you homeschool I'd love to hear from you since I just decided to do it for next year and could really use info. and support. thanks
post #169 of 735
Quote:
Originally Posted by geckoed
My 4th had heart rate and breathing issues at birth. He has a cystic hygroma/lymphangioma. He has torticollis and plagiocephaly. He had RSV and severe bronchiolitis, so will most likely be dx'd with asthma eventually. He has muscle tone issues, general delays, mild reflux, dairy sensitivity/allergy (dx'd in the NICU when they supp'd him with formula once), drug allergy (vancomyacin), he had sepsis and a brain infection recently. We're wondering if he has a seizure disorder. The Ped is wondering if he has immune problems. He's only 5 months old.... so much remains to be seen.

-Kimmi

Quote:
Originally Posted by aisraeltax
hello everyone. i have been posting on MDC for a few weeks but thought i should post here today to join in the discussion. My 7 year old ds was diagnosed with noonan's syndrome (NS) at birth. he is doing great now; but in the beginning we went through several surgeries, including open heart surgery, 2 operations for an undescended testicle; 2 eye operations and a hernia operation. It was very stressful for a few years but he is doing great now and we have to deal with low muscle tone, knee and ankle issues, a blood disorder as well as issues regarding malignant hypothermia and misc. other things i am probably not remembering right now.
on a spectrum, he is doing great but just wanted to pop in here to see what others are dealing with, especially with older kiddos.
Rach


OMG! I can't believe that I found people that have kids like mine! Okay here it goes.

My oldest dd is Aubrey and she's 5. She was diagnosed after 2 long years with Noonan's. Before that she was a failure to grow baby. They termed her failure to grow instead of failure to thive because she met all milestones on time but was very tiny and fell off her growth curve. She had a ng tube for 9 months and was in a feeding clinic to teach her to eat as a social thing because she didn't ever feel hungry. She just finish k-4 this year and is getting ready to start k-5. We didn't get a diagnosis until 2 geneticist (sp) one from Walter Reed Army Hospital and the other from NIH, saw her. She has finally started to outgrow her feeding issues and besides being short stature most people don't even know there is anything wrong with her. She also had a PAS that she outgrew and kidney reflux that she outgrew.

My baby is Gwendolyn and she's 16 months. She had a cystic hygromma that went away in utero. The day after she was born she was taken to the nursery for a routine check and they found that she had sky rocketing respirations, O2 sats that were falling and a heart murmur that wasn't there the night before. She was born at the hospital that I work at and they did everything that they could do but her ped realized that something very serious was going on and they medevaced her to Duke Medical Center. There, they found out that she had a pulmonary artery/ aortic window (they were fused with a hole between them) and an interrupted aotic arch. They stabalized her and she had heart surgery at 4 days old. She did fantastic and was released from the hopital 11 days after surgery. Four days later I noticed that there was drainage from the incision site and she had a low grade fever. I brought her to her ped and she was re-admitted to Duke with a severe staph infection. She was released 2 weeks later with a central line for iv antibiotics for another 8 weeks. Seven weeks laster she was re-admitted again with an infection in the central line. She spent another week in the hospital and during that time something happen because she stopped all oral feeds and had a very hyper-sensitive gag reflex. Before that she was nursing twice a day and ng tube feed the rest and I pumped. I exclusively pump until she was 3 1/2 months old and made it through all of her surgeries, she had a cardiac cath to correct a PAS due to scare tissue from the first surgery. She also has reflux. But she eats solids beautifully and we are now working on the cup and we're planning on changing her feeding schedule to encourage more solid and liquid feedings. We just saw GI at Duke and are hopeful that she will eventually be off the tube. She also receives OT twice a week. Her ped couldn't be happier with her, according to him she has overcame all delays except the drinking. I feel blessed to even have her with me because she shouldn't be here today. If the heart defects didn't kill her the staph infection should have. I have never met another person that either had her defects or has a child that has her defects. Even the major medical facilities see maybe one case of either a year. Her defects are normally complicated with severe defects of the heart too, of which she had none. Her surgeon at Duke said that it has never been seen there and they are pretty sure that it has never been seen in the US and probably even the world that a child had those 2 defects with the vessels and a completely healthy heart! They were going to make sure that she was the first and if so they plan to do a journal article on her!

Sorry this is so long. I can't wait to meet more people with children with special needs. I don't feel so alone now!
post #170 of 735
New here, mom to 3. Dd 10, dd 4 and ds almost 3 who has been dx'd with PDD. He was diagnosed about 9 months ago but has been getting speech for about a year now. Looking forward to meeting you all.
post #171 of 735

congenital diaphragmatic hernia

Hi everyone, I have just read through this whole thread and saw some familiar names from other forums I visit. Hi guys! I have two children (so far). My younger son is 18 months and was born with a diaphragmatic hernia. We knew about it in advance, and in fact in utero he had some other very worrying symptoms (pleural effusion, fetal hydrops) which resolved, so it was a real roller coaster ride. We joked he would be grounded until he was 18 (overlooking the fact that he had a 25% chance of survival at best with the hydrops, then 50% with the diaphragmatic hernia!). Anyway, he did really well, had surgery at 4 days, was discharged at 15 days, and has had other minor surgeries and hospitalizations (left undescended testicle, rotavirus) and other fairly minor ongoing issues (hypotonia, GERD, reactive airways/neb treatment dependent). He's still on meds for reflux and reactive airways. He is small and skinny (dropped off the charts for weight ages ago) but the happiest, most outgoing and adventurous baby I've ever met. My older boy has had some pretty serious behavioural issues related to the trauma of his brother's birth and separation from us as a result, etc., but has tested normal after a full behavioural and psychological evaluation and is currently doing much better so we are optimistic. (But it has been a long, hard road!)

It has been a very tough couple of years for the whole family but I would not trade it for the world and I am a better person for it. One thing that has been hard has been trying to reconcile the kind of parent I wanted to be with my younger son's medical needs. I couldn't have believed how far that was possible: breastfeeding (v unusual for babies with his condition), cloth diapering even through surgery on his scrotum, cosleeping even in the hospital cribs. The medical staff have been great, and mostly very accomodating, and he has a wonderful ped.

I hope I can help others facing diaphragmatic hernia or fetal hydrops diagnoses, and others worrying about how to balance the needs of their 'typical' child or children (and sometimes worrying that their typical child might not be all that typical!).

Fiona
Declan (4)
Eoin (18 months)
post #172 of 735
my daughter was born on 7/13. she's the love of my life already, but things are going very differently than planned.

Jess has what's called an unbalanced translocation of her chromosomes. She has a small extra piece of chromosome 3 attached to the bottom of her chromosome 18.

We won't know exactly what this means for her future until it happens, because what she has is extremely rare. We do know what she has right now: a cleft of the hard palate (behind the gums). I'm pumping because she cannot create suction and must be fed with a special bottle (Haberman)

She is "at risk for developmental delay". In reality, most children with unbalanced translocations are retarded and the severity generally depends on the severity of the chromosomal unbalance. We are hopeful that because her "extra" material is small, she won't be too drastically affected. But, no one can tell us. And if they could, I wouldn't want them to.

I'm not crying every single day anymore- but this is hard. I guess most of you probably know how it feels to have to learn to replace your dreams of what your child's life will be like with new and different dreams- different from those of your friends who are all having perfectly healthy babies. I don't want a different baby, but it's hard to accept the unexpected. I'm learning, though. I know she chose me as her mommy for a reason.

We're facing two surgeries this year to repair the palate, so that's the focus now. Also, kids with genetic conditions are prone to aspirating their food, which she tends to do, so I'm trying to watch that to prevent pneumonia. Luckily my mom is a pediatrician so we've had access to the best doctors in the area.

one day at a time!
post #173 of 735
my boy (2 1/2) has been known to be "probably SID" for a year now. Our primary care Dr said so and our reserach wholeheartedly agrees. we've been doing sensory diet stuff at home but now are going to get a real screening done and OT.
he's under-sensitive to pain and vestibular input. Doesn't feel hurt or dizzy ever. Also has some food intolerances (not all caught yet), and huge tantrums (up to 2 hours, unstoppable, violent to self and me, unknown triggers).
post #174 of 735
I adopted my dd at age 2 after fostering her for 2 years. She was born cocaine dependent and was severe failure to thrive. She didn't sit up until almost 11months and didn't walk until she was 27 months.
She went through withdrawal for nearly nine months which involved non-stop screaming for 2-3 hours every night or whenever she had to go in the car. She would projectile vomit most of her bottle at every feeding.

We did Physical therapy, occupational and speech therapy for 2 years.

She is now nearly 16. When I adopted her not much was known about the long-range outcome of cocaine babies. We now know their brains are similar to Swiss cheese. The parts of the brain that were developing on days her birth mom used are damaged.
For my girl - she has no virtually no short term memory (we call her Dory), if we work our behinds off she can get it into long-term memory and then it seems to stick. She has very poor impulse control, she is mildly hyperactive and easily over-stimulated.
She is the love of my life. She has very wonderful qualities such as great beauty inside and out, a very big heart and a marvelous sense of humor.
Her adoption was one of the best decisions I ever made.
post #175 of 735
Hi
My name is Chantal and I have 2 children. DS is 4 years 3 months and DD is 10 months. DS has had a host of sensory issues since birth. he struggles with social interactions, impulsivity, emotional control, gauging physical responses to others (ie personal space, rough touching etc) and recently has become defiant and uncooperative.
Today, we saw a Developmental ped for a 4 month follow up visit.. and came out of the meeting with a strong ADHD and possible ODD diagnosis with some sensory issues...
We are not surpriesd.. not happy.. and not sure what to do next.. Is this the place to discuss things like this or is there an ADHD/ODD support group? :

Chantal
post #176 of 735
All together 3/9 kids are dx- but since I have OCD and dh has LD we may have more dx as some get older;
#3 ds(18 yo) LD (graduated high school this year- starts college tomorrow!)
#5 ds(13 yo) LD ADHD (can I put the H in BOLD)
#6 dd (8 yo) OCD SID (if being gifted is also a special need add that to this little one- she is by far the most challenging of the kiddos- one day she's fine the next she's miserable.)
post #177 of 735
My daughter Annika has SID, and Sienna had ADHD and now reading all of the other diagnosis's it's does'nt seem like that big of a deal anymore. I hope all your children are doing well!
post #178 of 735
My son was just diagnosed with sensory problems and mild cerebral palsey. We go to see the Neurologist this week to get all the test results back.
post #179 of 735
My daughter is 3 (will be 4 in November) and was dx with Prader-Willi Syndrome around December of last year. She is in Pre-School but has some speech delays and gross motor delays, she is much smaller than she should be and has hardly any muscle tone. With the syndrome she is always hungry and when she gets older it will get much worse, we will need to lock cabinets, things like that.
I just wanted to let you all know what she has...I am sure you will be hearing a lot from me!! Have a good day everyone!
post #180 of 735
Quote:
Originally Posted by CarolynnMarilynn
My turn. My son, Kai, is 6 and has neurofibromatosis. nf.com is a good website for more information on nf. He has some gross motor and fine motor delays. He has many cafe au lait spots and inguinal freckling, many little fibromas (little tumours), two small plexiform fibromas (little tumours that can grow to large proportions), and an optic nerve glioma that is followed by MRIs annually.

He is one of my greatest joys. My other greatest joy is my dd Taryn who is 4.

Carolynn
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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