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Post your childs diagnosis!! - Page 14

post #261 of 735
My son is 9 and has been diagnosed with asperger syndrome, bipolar and adhd. The bipolar diagnosis is fairly recent, and we aren't sure at this time if the bipolar presented as aspergers when he was younger or if he actually has AS as well.. we are in the process of getting him re evaluated now.

He takes Abilify for anxiety and we just started him on Concerta to try to calm the daily rages. We started meds at 7 years when the constant rages were interfering with his every day life.

He is allergic/extremely sensitive to dairy products and we have him on a strict casein free diet.
post #262 of 735
My son Sebastian has been diagnosed with Systemic Juvenile Idiopathic Arthritis with Macrophage Activation Syndrome. He was also malnourished by the time he was hospitalized and diagnosed (I think because he was too sick to nurse effectively, and has never eaten solids.) He is now fed via an ng tube. He is 12 months old. He is on corticosteroids that we hoped would have put him into remission by now, but that hasn't happened. He is in a lot of pain in the mornings and at night. He has lost most of his large motor skills. We are continuing with treatment, and also exploring alternative treatments. We've had success with Traditional Chinese Medicine - he always feels better the day after a treatment. He is the cutest little guy! I also have two other sons, aged 4 and 6.

This is a rare diagnosis for someone so young. I'd be interested to find someone else who has dealt with this disorder.
post #263 of 735

child's diagnosis

I am a mother of three. My first child is about as normal as we have. Her name is Lily and she is 6 years. My Second child is deaf in his left ear. His name is Ethan and he is 4 Years. My third child has the most of all. He has 3 diagnosis. 1st is Hemangiomas. His are not as bad as you see on the web sites with the face being deformed from them. His on the other had, grew on the inside of his body to by age 3months, block off his airway. He was treached when he was 1 1/2 months old. At about the age of 6 months, he was noted to have right sided subclavian arch with an extra arortic valuve. That bunch of mumbo did not mean much until the tested him and found him to have a 22Q11 deletion. DeGorge is a nother name for that deletion. Then shortly after that he was found to have high blood pressure. He is now 2 1/2 years old and they still don't know why he has high blood pressure because he is not growing so the same blood vessels they saw before are not much bigger so they can't see more. He was just givin the title of PHASES. Just a word for the DRs I was told. He is a lovely boy with energy and attitude. With the excepiton of the trech(which encludes speech delays), his short stature, and some reddness on his face, he is normal. It is late and I would love to chat with some other moms so I hope to talk later.
post #264 of 735


My daughter was diagnosed with Autism at 26 months. She met most of her milestones on time but I did notice she wasn't babbling like other babies around 10 months. She started speaking and had 5 words at 12 months but soon after 13 months she had no language and fell completley silent. I brought it up to our family doctor at her 15 month visit and she said I was just a worrywart and that my daughter was developing appropriatley. At her 18 month visit I brought it up again and was yet again told I was just being a worry wart but if she wasn't speaking by 20 months she would get an evaluation. I waited a few weeks and called back.
A woman from a state program came and evaluated her. I asked her after if she thought it was Autism and she said she really didn't think so but she had enough red flags to be seen by a team. So we brought her and they said she had many red flags for Autism and this qualified her for therapy. It was very difficult finding her a place and she only could get 6 hours total over the summer. It broke my heart that we couldn't get her more. I had to call around to get a clinic to officially diagnose her and most places told me 8 months to a year for a waiting list. That wasnt good enough for me. I was able to find a place that could take her in 4 months and within one hour we were given the diagnosis of Autism. We knew it was Autism but actually hearing a doctor say it is still a shock and heartwrenching.
I took about 1 night to mourn and feel bad for her/myself and just dug right in to finding her the best I could for our rural area. I was able to find a program that is 5 days a week, 6 hours a day of therapy, ABA, DT, OT and speech. She is making great strides, makes good eye contact, is starting to show more interest in her peers and has even started to say a word here and there. She communicates her needs and wants through signs and a communication book (PECS) and I am so proud of her. She picks up new skills swiftly and she is definitley one smart cookie. Her 3rd birthday is in August and I am pleased with her progress over the year.
post #265 of 735
My son has down syndrome, hearing loss, non verbal, SIDS and heart conditions.
post #266 of 735

My baby

Hi there,

My son was recently diagnosed with high functioning autism and sensory integration disorder. He will be three in July.

I also have a three month old daughter, who so far has no diagnoses.
post #267 of 735
My son was just diagnosed w/ spastic hemiplegia, affecting his left side. It was an expected dx, as we had a very difficult birth. He's now 17 months and has been in PT/OT since he was 8 months old. He's doing pretty good, he just started to commando crawl and can go from all-fours to sitting! Yay early intervention!
post #268 of 735
I'll add to the group:

My son Jacoby "Jack" was dx PDD-NOS at 2.5. He's had in-home Speech and Early Childhood therapy for about 7 mos and is due to start a special preschool in the fall. We have seen a DAN! and are on serious supplements and gf/cf (at least for now, under the 'healing the gut' theory).

Love this group!

post #269 of 735

mom of 2 special needs children

I am the proud mom of two special little spirits. My son is 5 and has ADHD, has a 2yr delay in Speech and Language which he has been receiving therapy in a centere based intergrated Pre-K program for over a year 5 days per week. He also has Asthma and is starting to display signs of OCD. He will enter Kindergarten in the fall in a 15:1: Speech and Language based special ed. class. I believe my son displays Autisic tendencies as well. My daughter is 21 months and has been dx'd as having a delay in speech as well. I have been told she is at a 6-9month old level of speech and her expressive language is at about 12months. She need to have a hearing evaluation also, she may not be hearing fully. I feel she is showing some similar behaviors as my son and she is becoming increasingly frustrated due to the fact she cannot not speak. This is causing he to act out more and have tantrums often.
post #270 of 735


My daughter will be 3 in August thanks to the gift of organ donation. She had Biliary Atresia (liver disease), and had a liver transplant at 7 mths. of age. She also has Rubenstein Taybi syndrome (1st time that I have ever "admitted" this...I have been in denial)....although she seems to be fairly high functioning. Her most significant delay is speech. She has some words, and her ability to understand is amazing, but she is very delayed in her verbal skills. She runs all over the house, and she truly is an amazing little angel here on Earth. She also had a heart cath done at 4 mths. for a PDA that had not closed. In her first 7 mths. she had 5 surgeries. It was a ROUGH year! The other area of delay is in feeding. : Some days I feel like I cannot do anything right! She has chewing/swallowing issues and vomits frequently! She has SEVERE allergies to eggs, nuts, shellfish, wheat, and rice and moderate allergies to soy and milk. She does keep us on our toes, but I wouldn't trade her for anything in the world. I am glad that I found this forum! Finally a place where I feel like I "fit in"!

post #271 of 735
Today we received an official dx of Asperger's Syndrome. Unfortunately there is very little available for kids with ASD's where we live. There is one place, my son is on their waiting list and *might* receive some sort of service as early as September. I just might start camping on their doorstep to try moving it faster!
post #272 of 735
Hi, I'm Heather. Long time lurker, only started posting the other night. My oldest son James is 7 he has a diagnosis of ASD, Marfan Syndrome and Cyclic vomiting syndrome. He's brilliant and the most interesting person I've ever met. I'm also mommy to Michael who will be 2 in 9 sleeps. He's a wrecking ball. It's a good thing he's been a worn baby because he's running around in a cast with a broken foot! Trying to limit his time off of it is near impossible!! Thank goodness for the Kozy and the Ergo.

Fortunately we have a wonderful school right here in King county. I don't know what we would have done without them. http://www.childrensinstitute.com/

Mommy to James-7 & Michael-23 months
post #273 of 735

I think I'd better update my intro...

(Btw, Heather, it's nice to "see" you here! I visit the MDC boards sporadically, and just dropped in again a couple of nights ago.)

I realized that my intro in this thread is more than two years old (!), so I'll post an updated intro...

I'm Joni, mom to lots of lovely kids. Two of them are extra-unique: Gabriel, 7 yrs, has a sweet temperament, loves to listen to music, laugh at the cat's tail, and spin things. He has Down syndrome and was diagnosed over a year ago with autism, as well. I'm holding out hope that he will one day be able to speak to me and tell me what he's thinking and feeling. It's heart-breaking to not be able to know what's going on inside of him sometimes (as I'm sure some of you understand). I don't spend much time thinking about the unchangeable aspects of my kids, but his lack of speech is one thing I wish I could change.

My other kid with something extra is 9-yr old Michaela. She was born with a spinal cord anomaly that affects her in a manner similar to spina bifida. She can crawl with speed, walk laboriously with long-leg braces and forearm crutches, and prefers most of the time to spin along in her purple wheelchair. She is introspective and thoughtful, but has a fun sense of humor. She has, so far, wanted to be a belly dancer, a ballerina, and a coffehouse barrista when she grows up.

It's been quite a ride so far, and there's much more to come, I'm sure.

Joni : and kids (ages 22 down to 23 mo), incl. Jacob and DIL Kelly , Jesse , Kalea , Briana , Abby , Michaela :, Gabriel, , Aaron , and Micah
post #274 of 735


Our daughter is six months old. She has Spina Bifida (mylomeningocele) at L3. She also has hydrocephalus. She had surgery at 24 hours old to close her back and place a V.P. shunt in her head. We also deal with Laryngomalacia (soft tissue in the throat, which causes breathing/choking issues) and she has Reflux.
She has done extremely well so far and we are praying and hoping that she continues to do so in the future.
post #275 of 735
I haven't read all of the posts but this is what I thought too!

Originally Posted by mommy2three

I wanted to ask you if your son has ever been tested for Cerebral Palsey? (I don't have enough to go on by your post to actual suggest him having it, so don't panic ) I posted above about my 22 month old because we are currently dealing with his prognosis but I also have an amazing almost 5 year old boy who has mild Cerebral palsey. His beginning was very much like what you discribed- Jack was born (with his twin) by emergency section at 31 weeks due to lack of movement and Jack's heartrate flatlined. Because it took them a bit too long to get him out he was deprived of oxygen and I think this is why he has CP. Anyway, he had severe hypotonia for the first year, was fed by tube feedings for 8 months, etc. He couldn't hold his head up until a year or sit up either. However, now with extensive therapies (and luck) he can walk completely unaided and is very into sports He will always have special therapies and possibly be in special ed.

Forgive me if you already said this- but have you contacted birth to three programs? Almost every state has one

PS. Jack was also on a breathing and heart machine until 8 months old because he would also start to choke and aspirate on his saliva. He still drools a lot now but he doesn't choke on it anymore
post #276 of 735
My eldest is 28mths and he was diagnosed with Cerebral Palsy.

He is a very TALL boy for his age and he is very muscular. He can walk, run, and is starting to talk. All in all we have been very lucky as it has been mild and we started agressive therapy when he was two months old.
post #277 of 735
Originally Posted by hemo-mommy
Thanks for the tip! We're currently trying eczema cure no. 217 (saltwater baths), but it's always good to have something else to try... Soap is tricky with eczema, since it does dry out the skin, making a bad situation worse.

-Ziva, mama to two boys (one of whom is bf'ing right now!), loving one man and trying to keep a fish alive...

My two year old and I both suffer from severe eczema and psorasis. I SWEAR by Tracy's Treats.... spaming... so much so I added it to my line dinkerandgiggles.com

She has feedback galore from others suffering from the same things! It's all natural so no steriods and other crap! We use the foaming soap and the lotions...very rare now to have reoccurance. I use the lip balm on my sons face too!
post #278 of 735

Neonatal stroke, seizures

Hi parents,
My 1st son (now 3 yrs old) suffered a stroke either in utero or just after birth. He has very mild cp and has received PT and OT since 4 months and Speech Therapy since he was 18 mos. He has been on anti-seizure meds since 1 day old due to a severely abnormal EEG but only recently suffered his 1st clinical seizure. This was really scary and I hope it never happens again but chances are he will have another one at some point. He is an adorable, loving boy and it kills me to know that he will probably always need to be on meds which make him tired and sometimes upset his tummy. Any other parents have similar issues?
post #279 of 735
Originally Posted by ksbend
Hi parents,
My 1st son (now 3 yrs old) suffered a stroke either in utero or just after birth. He has very mild cp and has received PT and OT since 4 months and Speech Therapy since he was 18 mos. He has been on anti-seizure meds since 1 day old due to a severely abnormal EEG but only recently suffered his 1st clinical seizure. This was really scary and I hope it never happens again but chances are he will have another one at some point. He is an adorable, loving boy and it kills me to know that he will probably always need to be on meds which make him tired and sometimes upset his tummy. Any other parents have similar issues?

My son has mild hemiplegia. He hasn't had to take meds for seizures since he as 5 months old, but I'm on constant watch. He had a febrile seizure a few months ago, and if he has another, he'll need a CAT scan.: We're in PT/OT once a month, and are headed toward ST, orthotics, and a splint this fall. The stress is pretty unreal, and I've found that I never really stop worrying about him

We should start a CP support thread. There are so many variations, but it can be helpful to share ideas.
post #280 of 735
Hi All... I almost hate to sound trite, but I came here hoping beyond hope to find some mommies dealing with this ...
My dd, Laney is 4 1/2, and was just diagnosed with ONH (Optic Nerve Hypopalsia) She is blind in one eye, and we are still testing for any other abnormalities that goes with this. Apparently, it is a birth defect, affecting sometimes the optic nerve alone, usually hitting the pituitary and therefore all the endocrine system as well.... because it is not well known, the battle is primarily uphill because I have do be the educated one and know what tests to go for...
we are hoping to get an MRI to see if there is any structual defects in the midbrain region, we have to do learning and behavior tests to determine her needs as far as school, and I am hoping to get referred to a endocrinoligist in the bay area who knows the condition well....
Meantime, i am awake at three am worrying about things I could have done to see this sooner. This is a "late" diagnosis and though she seems relatively normal at first glance, the more I read the more I see her quirky behaviors and tastes and such are falling right into the description of this...
Still so new... so much to deal with!
I also am a single mom on the brink of poverty (aren't there alot of us...) with a teenager and a three year old who need my attention too. Somedays I just want to run off to fiji!
Other days I count our many blessings and know how so many others, both with the same diagnosis and others, have to deal with SO much more. And I pray for us all to feel lifted up ...
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