We used to have a thread stickied at the top of the forum with a "post your child's diagnosis" title... We seem to have some newbies here, it'd be nice to get to know each other again
Connor is the main reason I come here, he's 3 (next week!) and has a chromosomal deletion 22q11.2, a syndrome called Velocardiofacial Syndrome or DiGeorge Syndrome.
I also occassionally talk about my oldest son, Ian, (5 in 3 weeks!). He has some sensory and behavioral issues that are controlled very well by cutting gluten from his diet. There are still some symptoms that aren't gone yet (chronically swollen glands, for example) so there might be more, we're looking into it.
I also have a baby, Gavin, who appears pretty "normal" except for a palate malformation that initially effected his feeding. He also has some reflux, but so far we're managing things well
So who else is out there?
My son had a JPA (Juvenile Pilocytic Astrocytoma) tumor removed from his cerebellum on 12.14.06. At the time he had developed hydrocephalus as well. Two years later he developed a seizure disorder (complex partial seizures). The problem is that he goes into status epilepticus each time. He takes Trileptal 2X a day to control them.
He is wheelchair bound although has good standing strength and enjoys walking with assistance. He can sit, get into a sitting position, and crawl. He has pretty severe ataxia and remaining speech differences (quality and speed of his speech is different).
All in all, compared to three years ago...he's doing amazingly well. It just makes me sad to see it all written out like that. It's not something I do very often.
He has done so well in an autism prekindergarten. I'm sad to see him go into kindergarten because that means a new teacher and I love the teacher he has had the past 3 years. The future is very scary for me and at some point I may decide to homeschool.
Here's the link to the original thread.
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She has a GJ tube with continuous feeds, frequent deep suctioning, and intermittent oxygen. Meds and breathing treatments around the clock.
DS2 is the main reason I come here. He was just over 2 when he was diagnosed with Speech Apraxia. At his last annual eval, they added articulation disorder. He is on an IEP and they have seen some possible signs of ADHD in him, but are not yet labeling (mainly because I wont let them) him that way. We do have some other issues with him (no ability to realize he is in a dangerous situation; usually always speaks in a loud voice; does not like loud noise, and aggression issues at times - like when he is frustrated and cannot get out what he is trying to say, he defends himself or pushes people away or tries to bit them or hit them.
So far, except an early scare on language, DD2 seems perfectly typical. She was a bit of a late talker, the minute we called for an EI eval, she started picking up words. At 2, she was still not doing 2 word phrases, but I waited a month or two and now she is doing two and three word phrases, with the occasional 4 word phrase.
DD has a diagnosis of PVL from a prenatal stroke. She was doing great though despite the diagnosis with no signs of CP and on track developmentally. At 6 months she started having seizures, infantile spasms to be specific. She responded well to the meds and was seizure free within 4 days of the first episode. She is now delayed by a couple of months, especially in gross motor skills. She also has a small chromosome deletion. Not sure how this will effect her development at this point, as there is a wide range in her syndrome. Learning problems seem to be inevitable, but it can range from mild to severe so we have to wait to see where she falls.
I'm Karen and mainly a lurker, but thought I would tell you about DS. C is four years old and has right sided hemipaligic CP, global developmental delays, and just got an Autism Spectrum diagnosis. I do not feel the ASD diagnosis is a correct one, his main strength is using his smile and changing the subject to escape things that are difficult.
My 6 year old DD is an active, free spirit and an independent thinker. She was in a special needs preschool and on an IEP for K, but is now off all services. She has an AWESOME teacher this year and is doing great.
Dd (Rachel) has Anxiety, SPD, dysgraphia, and SSS.
Ds2 (Thomas) is typical, at this point, but shows signs of mild SPD.
I have SSS, SPD, anxiety, dysgraphia, depression, fibro/cfs, and cortical & central brain atrophy. I am self dx'd w/ Asperger's, as well.
Please see my Community Profile! about Asperger's Syndrome!
Speech wise he is at a 21 mth level at best for receptive/expressive language , although has some 25 mth level speech skills emerging. However his articulation is on the low side. We have high hopes to have him completely caught up(or near it) byt age 5 and hopefully will be in a full time mainstreamed classroom.
Cassie, mom to Alex(7), Aidan(5), Andrew(4)
Andrew--had a lot of health issues (severe reflux and other GI stuff, failure to thrive, mild hypotonia, dev. delays and losses of skills). He eventually ended up with an autism spectrum diagnosis (PDD-NOS) and then finally we discovered a metabolic condition affecting his mitochondrial function that explains all those issues.
Caleb--is my allergy and asthma kid. He's anaphylactic to tree nuts and sesame. I see some pretty clear signs of OCD in him though mild right now. I had so hoped my kids wouldn't face that. Other than that he's a typical six year old dealing with a pretty atypical life and twin brother!
Rachelle, mommy to 8 year old boys!
My Blog-free homeschooling finds and my lesson plans and link to the new User Agreement
Because of his low tone he had feeding difficulties and was on an NG tube and diagnosed FTT. He still has feeding difficulties and won't take in solid food. We're on a waiting list to see a feeding specialist and nutritionist.
Mom to DD 8 and DS 6.
DS has been diagnosed with a severe articulation disorder (now largely resolved!) and sensory processing disorder. Along with his diagnosis came a strong recommendation from the neurodevelopmental ped. that I look into SPD for myself as well. Explains a lot.
DD has developed allergies to apparently all insect bites and stings and anything with fur or feathers. She's on daily allergy meds for the fur and feathers and carries an epipen for the insect bites and stings. I probably shouldn't have been surprised by this -- there's a family history -- but I really wasn't prepared for her to suddenly start reacting to everything the way she did. It's a little scary. You'll also see us posting in the dental forum fairly often, as she has inherited a genetic enamel defect and has had to have one 4-hour in-hospital surgery already to repair damage, on top of the regular in-office fillings and treatments.
-complete intolerance to all intact protein
-multiple delayed-reaction anaphylactic drug allergies
-anaphylactic food allergies
-severe gastrointestinal food intolerances
-feeding delays/dysphagia (he is only now able to chew and swallow small bits of solid foods)
-diet consists primarily of amino acid formula (which we have to make ourselves, as corn derivatives are his most severe intolerance and cause him to have FTT and massive malabsorption)
-severe speech delay (he's at about a 12-16 month level in speech)
-mild immune deficiency
-right parietal brain lesion (we don't know what it is yet)
-chronic mild hypoxia (needs oxygen during illness, may need it nightly soon)
-chronic anemia and low carnitine
-he's been in PT since 6 months, ST since 18 months. He is approved for OT, but we don't have the time to add another therapy.
DD is 5 months, and thankfully can nurse directly (having to EP for DS, who had awful oral motor tone, was the main reason we eventually had to supplement DS with formula which set off his gastro issues). However, she has the same intolerance to animal protein DS has, although his showed up later. I have to eat a soy-free, vegan diet to keep her from losing huge amounts of weight. She's riding the line of FTT, but since her doctors know what issues our son has, the only goal is that she maintains and doesn't lose weight for now.
Dd (5) appears to be typically developing, with allergies, a quick temper, and I'm beginning to suspect either gluten or lactose intolerance. She's highly sensitive and falls just on the typical side of the SPD spectrum.
We've homeschooled and public schooled, and neither seem to be a good fit. Private schools don't provide the kind of services she needs.
but everything has pros and cons
She's hilarious and charming, a total nut.
Dd (one year old) is my reason for coming to this board. She has a diagnosis of 5p- otherwise know as cri-du-chat syndrome. I don't post much because, sofar, she is not really sn. She is doing amazing well. At one year, she is sitting, crawling, pulling up, spending a lot of time standing to play, and cruising. She nurses well and eats solid foods (although she has no teeth yet). She sees a therapist once a week (pt and dv alternating). She is still small for her age, but growing well. The only thing I'm concerned about is speech. We will be having her 9 m onth EI review tommorow and we'll see if she can be evaluated for speech or whether we should wait until she's older. So far, she doesn't have most of the issues that we were lead to believe she would have. Not sure what will happen as she gets older, though. Most of the children with her diagnosis tend to have speech issues, but as I said, she really doesn't seem to fit her diagnosis very well so far.
She is bright, sweet and funny. Doing quite well in 1st grade this year. I am incredibly blessed!
Max is 3 1/2 and is Autistic as well, though he is quite verbal. His main issue is aggression.
Lily is 3 1/2. At 4 1/2 months old, she got RSV meningitis and had a massive anoxic brain injury, causing severe global damage. She has quad mixed CP, dysphagia, microcephaly, cortical vision impairment, gastroparesis, visceral hyperalgesia, Lennox-Gastaut epilepsy syndrome, dysautonomia, GERD, central apnea, and Ehlers-Danlos Syndrome.
She is non-verbal, non-ambulatory, 100% tube fed via GJ, and will be starting PN in the next two weeks after getting a broviac cath placed (along with the removal of the hip/femoral plates and screws and a left leg tendon release).
Surgery wise, she has had:
March 07 - G-tube placement (no fundoplication)
December 08 - G-tube switched into GJ tube
January 09 - Bilateral Hip/Femoral Osteotomy with screws/plates and SPICA for 6 weeks
July 09 - Endoscopy and Sigmodoscopy
January 10 - VNS implant
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
She had her spinal cord un-tethered and had her lipoma debulked when she was 4 1/2 months old and another un-tethering when she was 2.
She is re-tethered. Our NS takes a wait and see approach. But we will have to have her un-tethered again at some point.
She has had achiles tendon release surgery on her left leg. That happened when she was a year old.
She is cath'd every 3-4 hours during the day. We do a castile soap and water cone enema at night.
She takes Ditropan 3 times a day as well for her bladder.
Tests? Numerous MRI's, Renal Ultrasounds, Urodynamics, VCUG, X-Rays etc.
Anne, Mama to Conner 2/27/04 Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel & Delaney 5/12/08 & Beethoven & Gizmo
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