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Post your childs diagnosis!! - Page 30

post #581 of 735
Quote:
Originally Posted by mamapoppins View Post
ShadowLark-I'm sorry about your DS.
If you had concerns about whether or not he has Celiac, did your doctor offer for him to be scoped? I ask, because, from what I understand(there is a lot of Celiac on DH's side of the family), a blood test is not the definitive answer to whether one has Celiac-an Endoscopy through the small intestine is *the* definitive test. Many,many people test negative on blood tests, and yet, when scoped, they are a sure positive. Just wanted to throw that out there, in case you weren't aware. I'm sorry if I've just dumped one more thing on you.

mp
Actually, we just got a letter from the doc - apparently, the test is "inconclusive". Looks like the GI doc IS the next step after all - I'm supposed to follow up at Brendon's 2 year checkup on the 29th.
GAH! I was looking forward to the thought of pizza!
Still, I'd rather know the truth, and if an endoscopy is the way to find it, so be it. It's nothing compared to what so many of these little ones have gone through!
post #582 of 735
A big welcome to all the new mamas.
post #583 of 735
I'm new here, and by DD is 15 mo. and her severe GERD. She was diagnosed at 1 week when she began screaming all night and having other symptoms (needing to be upright, irregular breathing, sleep apnea, getting hiccups a lot, etc.) I tried modifying my diet, putting her to bed in her carseat, etc. Eventually we had to put her on Prevacid, which worked wonders. She started solids late, because they really constipated her (she was unable to "go" without glycerin...long story), so now she's on Benefiber and Miralax too.

She did great until she began failing to gain weight at her 12 mo WBV. When we increased her solids, she began coughing and having screaming episodes. The reflux was back and she was aspirating stomach acid into her lungs. So now she's on Axid as well and does breathing treatments.

The solids are still an issue. I let her feed herself, then I fill in the gap with YoBaby and oils. Pediasure gave her bad gas and made her throw up, so that's now an option. And she still bf's.

So that's Ili. The upside to her situation is that 70% of GERD babies outgrow it, and it will almost certainly improve, at the very least.
post #584 of 735
Quote:
Originally Posted by Bens*Mommy View Post
My son, benjamin is 16 months old and was diagnosed 4 months ago with a rare genetic disorder called Hurler's Syndrome. He is being admitted into the hospital on August 4th and will have a stem cell transplant using donor umbillical cord blood on August 14.
I know a young man (he's in his 20's now) who was one of the first Hurler's patients to have a transplant (his was a BMT from an unrelated donor), when he was 2 years old. A lot has improved since then, but he is healthy!
post #585 of 735
I'm new too. My child's history includes:
  • preemie
  • multiple birth defects, some were surgically corrected
  • Hirschsprung's disease (pull-through, not colostomy) and motility treatments
  • urological issues
  • brain & spinal malformation and resulting hydro - leading to neurological damage
  • Aspergers (Autism spectrum) and some signs of OCD
  • nutrition/absorption issues (still looking into this, could be cardiac or renal)

It's a very rare syndrome (a couple hundred cases world-wide).

My child is now school-age and has come through everything amazingly well - testing as gifted and in the "enhanced" classes at school. Even with everything I feel blessed : (although I could do with a liiiiiitle bit more sleep )
post #586 of 735

Hello

My son is 2 years old and right after my other son was born in Dec '07 I noticed that he wasn't making attempts to talk, just a lot of grunting. He also started to bang his head against the door and shake his head for no reason. He hasn't been officially diagnosed yet, but I think he might have autism. He is scheduled to be evaluated on Dec 4th. He has some of the major "symptoms." He did qualify for Speech Therapy from an Early Intervention Program. It has been helping a lot. If fact he said no on his scheduled appointment. He's also able to communicate with me through some signs that we have been teaching him and he now understand "yes" and "no." And if he wants something he is able to make it clear what he wants. Example: if he wants to watch a movie, he hands me the remote; if he's thirsty he'll hand me his cup, etc. Whatever the diagnosis, I hope to get as much help as possible. My daughter might have ADHD since both my husband and I have it and it tends to "run" in the family. My other son is now 8 months and he isn't showing any signs yet, but my 2 year old son didn't show signs either until he was about 18 months. I'll have to update when I know for sure of his diagnosis.
post #587 of 735
Hello, Charlotte. Your ds sounds a lot like my son at that age. I'm glad that your ds is communicating with you more and more.

amanda
post #588 of 735

Hello

Hi All,

I am mainly a lurker.

My DD is 19 mths. She has Neiman-Pick Disease A/B - 1:500,00. Her body does not make the enzyme it needs to process lipids. As a result, they build up in the liver, spleen, lungs, and her brain. This is a fatal disease with no treatment and no cure. She will pass anywhere between age 3-9, but she's declining pretty rapidly so most people think that it will be closer to age 3.

We just take every day for everything it can give us. It really makes you understand what really matters.

:

Valerie
post #589 of 735
Valerie
post #590 of 735
I have a 7 year old daughter who has bipolar, severe anxiety, and sensory integration disorder. She has been stable thanks to lots of counseling and Risperdal since January 2008.

Kim
post #591 of 735
Welcome to all the new mamas to this board. Wish you didn't have to be here but this is a great place to vent, get support and information.

Quote:
Originally Posted by val01 View Post
Hi All,

I am mainly a lurker.

My DD is 19 mths. She has Neiman-Pick Disease A/B - 1:500,00. Her body does not make the enzyme it needs to process lipids. As a result, they build up in the liver, spleen, lungs, and her brain. This is a fatal disease with no treatment and no cure. She will pass anywhere between age 3-9, but she's declining pretty rapidly so most people think that it will be closer to age 3.

We just take every day for everything it can give us. It really makes you understand what really matters.

:

Valerie
post #592 of 735
Sending hugs and prayers to you and your family, Valerie :
post #593 of 735
Hello everyone. I have lurked here in the past, but I just received my daughter's diagnosis today. I have suspected it for 2 years, but it is official that she does have Asperger's syndrome.
We are looking for a good OT to do some sensory integration work, and an art therapist. She is homeschooled so I don't have to worry much about school related issues. Her HS friends are all pretty cool with her quirks, and she is doing ok in our co-op.
It is nice to be able to think about her behavioral issues in a more positive light. Yes, they make me insane, but at least I can prove she isn't just being difficult or defiant to be a pain in the butt.
I am hoping to have a better routine for her, and have a good treatment plan in effect before our new baby arrives in January. Most of her issues really crystalized after the birth of our twins, and it has been non-stop over stimulation for her since then. Any advice would be greatly appreciated.
post #594 of 735
I have been a lurker for a while here. Mostly I am under anti-circ boards but recently researching special needs info. My DS is currently 33 months...he was born premature @ 36 weeks and had a fraternal twin brother who passed shortly before due to asphyxia and blood loss of unknown causes. However, I had developed severe PIH and pre-eclampsia. He was healthy at birth, 7 lbs with Apgars of 8 & 9. He was kept in special care nursery for first 2 weeks because of poor feeding abilities (poor suck)..I've always had to use fast flow nipples. Otherwise he eats fine now except it takes him a long time to chew meat and he still chokes on hard foods like raw veggies, apples, etc. He had moderate torticollis of neck at birth which resolved with physio. Genetics was called due to a penile anomaly which turned out to be misdiagnosed. They have been "fishing" ever since for a reason/cause for his global developmental delay (non-verbal, late crawler/walker, does not interact with peers). He has an abnormally large head (over 97 percentile) as well as weight (although he is NOT FAT but strong/sturdy like a tank!)...MRI ruled out hydrocephalus and only showed large brain, father also has large head. He has good muscle tone but high arches from birth. At 12 months he developed RSV and pneumonia after starting daycare a week before...then consequtive ear/chest infections for 5 months following until febrile seizure at 16 months (20 minute, atypical---EEG showed no damage), resulting in ear tubes at 18 months and NO ear infections since (thank god). He just started having croup this year...he's had it about 3 times now...first time he was hospitalized for 3 days, second just for a couple hours in emerg and last time just a steroid shot and then sent home. I am wondering if he is borderline asthmatic...no wheezing on a daily basis but seems susceptible to respiratory infections/illnesses.

Last week he was tentatively diagnosed as being on the autism spectrum for lack of another diagnosis. Developmental paediatrician figures it's better that he gets the help and if in 2 years it turns out he doesn't have it/doesn't need it, great, but if he does better than waiting (it's a 2 year wait list for IBI instructor). I am frustrated because I had brought this possibility up over a year ago and was told it was too early to diagnose and the symptoms tend to overlap with global delay. He has stimming behaviours like spinning himself (he is doing much less of...mainly when he's bored), spinning toys that don't "technically" spin, obsessed with fans, flashing lights, musical toys. He also arm flaps and sometimes flicks his fingers beside his eyes. His sight has been tested and no problems. His hearing was retested after tubes and is good (5db). We have seen marked improvement in his reaction to us calling his name/getting his attention. He does not do imitative or pretend play. He has never pointed but manages to let us know what he wants by physically taking (object) what he wants or reacting to us asking if he wants it (he turns and looks at us if we say juice, then gets upset if within a certain time limit he doesn't get it). He is cuddly and affectionate. He laughs and interacts with us at his discretion. He responds and anticipates with song play (itsy bitsy spider, patty cake, this little piggy, wheels on the bus, etc). He does have his tantrums but mainly minor (thank god because he is STRONG)...he can generally be distracted or talked down when upset. He has horrible fear of bubbles for some unknown reason, he also hates puppets and very loud noises and used to cry if other kids/babies were crying but he's not as sensitive about that now. We also saw genetics to get the "last" set of testing array done and sent to States...she said she will test for fragile X but does not "see" any other significant markers in him. Neurologist said the next day that he still is considering Sotos because of his large head size and delay but genetist didn't think he fit the characteristics....argh. He also mentioned something about his facial asymmetry (the right side of his face being slightly fuller than the left and the syndromes being associated with that). Sometimes these specialists drive me crazy with the "back and forth"...can't they all get together and "hash" it out between them? My head is spinning because I don't even know where to start. He has been involved with physio, OT and speech therapy for about a year but not really intensive.

I am hesitant to start researching syndromes, etc because it is so overwhelming and scary. The genetics results will take 3 months and I think it is best for my state of mind and happiness to just wait and see what they find instead of jumping off the deep end right now. I have to remind myself that my son is the same beautiful, loving little guy that he was before all this testing and "heresay" started. I wish they would just test me and look for markers in me first because some days I swear that I must be mildly autistic...I have always been socially awkward. But from my understanding they do it the other way around, if they find something odd in my son, then they test us to determine if we are carriers too.

Anyway, it is nice to have a board like this to post on for support, love, advice, and enlightenment. My heart goes out to all the Moms with children who have been diagnosed with severe syndromes/diseases....I hope I have half your strength...
post #595 of 735
My special needs child is my second son, who is currently 9 years old. He has an articulation delay and is in the process of being evaluated for a learning disability. He's had a speech IEP since he was 3 1/2, and has been receiving resource services as a guest since last school year.

He's in resource because he's a little over 1 grade level behind in reading, despite repeating a grade level once (that was a wasted year).

I also have an 11 year old ds with severe allergies and a mild articulation delay, an almost 6 year old daughter with severe allergies, and an almost 3 year old son who we suspect has speech delays as well.
post #596 of 735
A warm welcome to all the new parents to this board. I know it's a hard journey and no one knows better what you're going through other SN parents. but You're going to find a lot of support, love, and understanding here.
post #597 of 735
I have been lurking recently, figured I would post. Our ds is 6, has lots of sensory issues and as of now we have been told it is SPD. Beyond that we don't have a label, though he is showing some ASD and ADHD/ADD stuff. Right now we are trying lots of stuff, much of it sensory related and seeing where this journey takes us.
post #598 of 735
My 4 yrs 4 mos old son was diagnosed as PDD-NOS at 32 mos old. At the time they told me he was mild to moderate on the spectrum. Based on all the improvements and everything i know i would call him mild now. He started in EI when he was 19 mos old.

I knew since the day he was born something wasnt right. he was very sensitive to light and noise from the beginning.

i had pre-eclampsia and my son was born at 35 wks 2 days. I have not gotten him ANY vaccinations. (i know many think that autism is being caused by the MMR vax..and that MIGHT be true of some, but NOT my son)
post #599 of 735
My 7 year old daughter Cassidy has Non verbal learning disorder which is a form of asbergers and ADHD, yet I'm looking at having her rediagnosed as having Asbergers only or another type of Autism because she seems to be getting worse.
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post #600 of 735

new here

my son is 19 mos and was diagnosed with epilepsy at 3 weeks old. he was having grand mal seizures. since then we have been faced with more problems such as severe reflux, hypotonia, severe developmental delays, and a few other things he does that cannot be explained yet. he just had a g tube placed 2 weeks ago because failure to thrive. he weighs 18lbs. his geneticist believes everything is connected but doesnt yet know how. so far the only diagnosis we have gotten is that he is epileptic and the siezures are coming from the left hand side of the brain. we have been in the hospital 5 times. i would love to talk to anyone who has been in similar circumstances, better yet any kind of support would be apprieciated.
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