Post your childs diagnosis!! - Page 37

[anj_rn]

Hello all,
My name is Anj and I am the mommy to a very precocious 3 y.o. son, who is currently exerting his gifted nature to find loopholes in the rules. I am also mommy to a beautiful 7 month old girl w/ and anoxic brain injury secondary to a near-SIDS event at 4 months old. She also suffers dev. delays, seizures, hypertonicity. She has a trach and g-button.

[fyrebloom]

WOW this is one ancient thread! I'll add .

My DS1 will be 4 next month and has selective IgA deficiency which is a primary immunodeficiency... one of the milder ones thank goodness. He also has allergies and asthma, both are common with the disorder and has food allergies to milk, peanuts and treenuts. We are currently in the process of figuring out whether he has aspergers syndrome. He shows alot of the stereotyped behaviors and has some strong social delays and obsessions. We've stopped giving him gluten and he's gotten much better. Celiac disease is also common with his IgA deficiency so that may very well be a part of the prob, esp where he's responded so well to the dietary changes.

I also have 2 year old twins who are neurotypical and healthy, although they have been boarderline FTT since they hit a year old. We believe they also have Celiac disease, but it's only affected their height and weight and not their behavior. My youngest, DS2 is 1 week old and so far is healthy... although we are waiting to hear back on his PKU test. The first test came back with elevated phenalalamine so we're hoping his second test comes back negative. Most likely it will.

[Labbemama]

My oldest dd is 16. She has asthma, major depression, and generalized anxiety disorder. In the past she was diagnosed ADD-inattentive type, but I think it has more to do with anxiety honestly.

My son is 14. He was recently diagnosed with asthma He has ADHD,combined type, major depression, and was recently diagnosed with PTSD.

My youngest dd, soon to be 11 was recently diagnosed with major depression and PTSD. She has always had asthma.

We have a lot of allergies too.

[askew]

Hi.

I am Angelika, mom to a 3 year old boy wonder with a mild visual impairment, and a 4 month old sweetheart who has a chromosome disorder and suffered a prenatal stroke which caused PVL.

[MSUmama]

Hi,

I'm Amy. We have a 14 year old dd, Ally, with moderate/severe generalized anxiety disorder. We finally caved and allowed medication to be introduced this year and she's doing beautifully with it. Still in therapy and still seeking a non-med long term solution, but for now, life is good for her so we are happy.

Our 2 year old dd, Ava, has been dx'd with ASD. She's doing ok devolopmentally, a little behind but nothing I am terribly worried about. Her speech is clear but mostly ecoholic and pedantic. She does have some spontaneous speech but it's usually when she's upset or protesting something.

She also has somewhat severe tremors when changing positions and during most fine motor skill tasks. She's recently started to stutter and has had some seizures. Her dev. ped has done all the testing she feels she can do, still waiting on metabolics to come back, and is sending her to see a ped. neurologist at the Clevelend Clinic. She feels strongly that there is an underlying neurological condition but we don't have a dx on that as of now.

She's been in EI for almost a year. Doing very well. Currently she is going to a special education playgroup twice a week for two hours a day. She has an OT, ST and PT with her, and 2-3 other kids and they do a "school" routine based around NC's TEACCH program and it's going very well.

We also have a 16 yr old dd, Ashleigh and a 5 yr old ds, Chase.

[clicksab]

Guess I'll make it official

My DD (almost 3! sigh) has been diagnosed with Childhood Disintegrative Disorder. It is very, very rare and it is on the autism spectrum. To many people, she simple seems "autistic". But when she was two she had well over 200 words and spoke in short sentences. She was completely "normal", whatever that is! At 28 months we started noticing that she'd lost a few words, seemed to be acting strangely...and it's continued ever since. She now only has about 5 communicative words, has no interest in most people outside of our family, and has repetitive behaviors. It's like having a different child. But she is still a happy little girl who lights up our world, and we know that other little girl is in there somewhere! We're working on figuring out if she's having absence seizures and what the best therapy plan is for her.

[bmkimlev]

I have twin sons. They are 8 months old. One was diagnosed with a Lymphangioma (cystic hygroma) on his scalp. He has had two surgeries to remove the tumor and we are getting ready for a third surgery. My other son has not been diagnosed yet, but he has a very high arched palate and his teeth are growing in crooked and in the wrong spot. Is anyone familiar with either of these conditions?

[DeaGemRy]

Hi everyone, I'm Deanne, mother of two, Ryley 7yo boy & Gemma 4yo girl. Gem has been diagnosed with Type 1 Diabetes so will have this for the rest of her life unless they find a cure.... We are in Western Australia & new to MDC :-)

[LovemyJax]

Hi everyone! My son Jax is 3 years old and was diagnosed with Autism Spectrum Disorder in July 2011. He was a typically developing child, except for being a late walker, at 15 months he lost all eye contact, speech and started "stimming". He has been in therapy ever since. I did the 2 week parent training at TouchPoint and that has helped a lot. Jax is now attending early childhood development in the mornings and HeadStart in the afternoons. He also gets 10 hours a week of ABA. He is still pretty much nonverbal, he will repeat words with prompting but no spontaneous speech. He has always had a lot of trouble sleeping, we tried everything including melatonin. When my second son Memphis was born just this past March Jaxs sleep patterns got worse. He was only sleeping about 2 hours per night and had to go to school the next day so I did some research and found that clonidine has been helping a lot of kiddos on the spectrum sleep. It's normally used for Adults with high blood pressure. Jax takes .2 mg an hour before bed and sleeps all night!! This has made a huge change in his behavior:) Jax has always been very sweet and affectionate, not an agressive bone in his body:) We are now just trying to focus on COMMUNICATION. I would give anything to hear my little man say "mommy".

My 6 month old Memphis is doing great. He is part of the Brain Development in Autism: Infant Sibling Research Study at Washington University. We just had his first MRI on Monday and he goes back next week for developmental testing. We will do this every 6 months until he's 2. This study is so important to help future families. Having another boy I am very nervous about him having autism especially because his chances of having it are 1 in 4. Maybe after the study is complete they will be able to test high risk families at 6 months and get an earlier diagnoses so you can start intervention earlier:)

[DeaGemRy]

Originally Posted by LovemyJax 

Hi everyone! My son Jax is 3 years old and was diagnosed with Autism Spectrum Disorder in July 2011. He was a typically developing child, except for being a late walker, at 15 months he lost all eye contact, speech and started "stimming". He has been in therapy ever since. I did the 2 week parent training at TouchPoint and that has helped a lot. Jax is now attending early childhood development in the mornings and HeadStart in the afternoons. He also gets 10 hours a week of ABA. He is still pretty much nonverbal, he will repeat words with prompting but no spontaneous speech. He has always had a lot of trouble sleeping, we tried everything including melatonin. When my second son Memphis was born just this past March Jaxs sleep patterns got worse. He was only sleeping about 2 hours per night and had to go to school the next day so I did some research and found that clonidine has been helping a lot of kiddos on the spectrum sleep. It's normally used for Adults with high blood pressure. Jax takes .2 mg an hour before bed and sleeps all night!! This has made a huge change in his behavior:) Jax has always been very sweet and affectionate, not an agressive bone in his body:) We are now just trying to focus on COMMUNICATION. I would give anything to hear my little man say "mommy".

My 6 month old Memphis is doing great. He is part of the Brain Development in Autism: Infant Sibling Research Study at Washington University. We just had his first MRI on Monday and he goes back next week for developmental testing. We will do this every 6 months until he's 2. This study is so important to help future families. Having another boy I am very nervous about him having autism especially because his chances of having it are 1 in 4. Maybe after the study is complete they will be able to test high risk families at 6 months and get an earlier diagnoses so you can start intervention earlier:)

Hi there, my lil nephew is named Jax :-) What a wonderful thing to do to help future families. We had thought our girl had minor autism but now it after her diagnosis, it all makes sense, that her brain wasn't getting enough to function & she just pretty much felt like crap every single day :-( But thankfully, that is in the past.

I forgot to add along with Gems recent diagnosis she will also be attending a Language development school instead of normal pre primary next year. She is in kindy at the moment but due to her speech delays (her comprehension is perfect, just need to get her up to speed with her speech). She too was a late walker (15months) & has knocked knees.... we were in the midst of getting her legs sorted when BANG we were sent to hospital so still haven't got around to that bizo just yet. One step at a time I guess.

[Chakra]

Jake 8/6/08

Liver failure

Transplanted 6/14/12
 

[mopdop2000]

Hi all, I am momma bear to a 7yr old with ADHD - emphasis on the H!!!! - and an adopted 4 yr old with Fragile X Syndrome, Autism and ADHD. 7yr old is totally typical, apart from the fact that he can't sit still, be quiet or be alone for longer than 2-3 mins! His 2nd grade teacher is AWESOME - no meds, no IEP, and she lets him stand in class when he needs to, sit on a small teeter-totter etc. Love her. 4 yr old is non-verbal - his two words are 'mama' and 'duck' - however he knows over 100 signs and puts them together into 2-3 word sentances. According to his last developmental Dr appt, for a kiddo with Fragile X, this is wonderful. He has been taking clonidine to help with his erratic sleep patterns for over a year, and we just started him on a tiny dose in the morning and after lunch to help with the ADHA. His teachers and aides at pre-school are reporting a different child since then - he sits much better during circle time and is partaking in group activies when he never has before :) Oh, hubby has ADHD as well, and I recently started taking meds for mild anxiety/depression and PTSD from the passing of our 6 month old 4 yrs ago ... Gotta say I love my happy pill :)

[buttahflyMama]

Hi! My daughter is 6 (in first grade). She has been diagnosed with ADHD. She is not on any medication. She has a 504 plan at school.

[montanamomof3]

My oldest son, DS1, has been diagnosed with anxiety and psychosis. DS2 has been diagnosed with anxiety, sPd, ODD, and is right on the cusp of the PDD scale, but doctor will not diagnose. DS3 was born with a cleft lip and palate, has low muscle tone so he can not walk or crawl, just butt scoot around, and also can not talk. He is 17mo. DS1 is 9yo, & DS2 is 7yo.

[katsmommy]

My almost 4 year old daughter Kat has Type 1 diabetes - she was diagnosed at age 3.