An updated "Post Your Child's Diagnosis" - Mothering Forums

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#1 of 116 Old 02-26-2010, 04:50 PM - Thread Starter
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Hi all!

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

I'll start...

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?

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#2 of 116 Old 02-26-2010, 05:11 PM
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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.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#3 of 116 Old 02-26-2010, 05:26 PM
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My DD Alyssa had a near-SIDS event at 4 months, resulting in a profound brain injury. Her primary diagnosis is Static Encephalophy, but she has trach & a g-tube. She is on seizure meds, meds to control muscle spasticity, and one for gastric motility. I am very pround to say that although she is only fed via tube, her diet consists of EBM & blenderized foods made by mama.

Wife to M , Mommy to DS aka Captain Obvious  (06/06) and DD aka Lissalot  (03/09, anoxic brain injury)
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#4 of 116 Old 02-26-2010, 06:52 PM
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My son is 5 and was diagnosed with an autism spectrum disorder 2 years ago. He also has anxiety, Tourettes, rolandic epilepsy/absence seizures, ADHD, SPD, ODD, and possible thyroid disorder which is being looked at right now.

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.

Lilly, mum to one handsome boyand to one of God's angels in heaven
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#5 of 116 Old 02-26-2010, 07:14 PM
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Ds1 is 10 and has high functioning autism. Ds2,8, is considered gifted with a learning disability. And so far ds3 seems to be neurotypical.

Here's the link to the original thread.

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#6 of 116 Old 02-26-2010, 07:27 PM
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DD, Charlie, had a severe HIE event at or just prior to birth. She has severe mixed tone quad CP, dysphagia, microcephaly, chronic aspiration and chronic lung disease, cortical vision impairment, gastroparesis and possibly visceral hyperalgesia, a seizure disorder, dysautonomia, GERD, nystagmus and strabismus, tracheomalacia, and central apnea. I'm sure I'm missing some.

She has a GJ tube with continuous feeds, frequent deep suctioning, and intermittent oxygen. Meds and breathing treatments around the clock.

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#7 of 116 Old 02-26-2010, 07:38 PM
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My daughter, 16 months, has cystic fibrosis. She has a very rare mutation in the CFTR gene that makes the prognosis of her disease very difficult to predict. So far she gets tons of medical care but her quality of life is very high.
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#8 of 116 Old 02-26-2010, 09:22 PM
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DS1 has sleep apnea, which we hope will correct itself when we can have his tonsils and adnoids removed. This results in some behavioral issues that are fairly well controlled with getting about 12 hours of sleep at night, and he will be 7 in a few weeks.

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.
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#9 of 116 Old 02-26-2010, 10:00 PM
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My DS is pretty typical other than Congenital Nystagmus. Mild at this point with good acuity. I used to come here thinking that the nystagmus made him special needs, then I had DD and realized that he doesn't really have SN, at least not in comparison. Although since DD he has become pretty sensory seeking, but hard to tell how much of that is normal 3 year old boy.

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.
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#10 of 116 Old 02-26-2010, 10:09 PM
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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.

Peace, Karen
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#11 of 116 Old 02-26-2010, 11:14 PM
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Ds1 (Max) has Asperger's, Sensory Processing Disorder, dysgraphia, and Scotopic Sensitivity Syndrome (considered a form of dyslexia).
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.

 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

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#12 of 116 Old 02-28-2010, 02:11 AM
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Aidan was born with Bilateral severe to profound hearing loss due to Auditory Neuropathy, which basically meants that ear works fine but the nerves sending the signals to the brain is messed up somewhere. He also has mild low tone, most likely due to the hearing loss-he cannot support his weight while sitting very well-usually has to do a W sit to stabilize, or lean back on something--chair back, me, whatever is there. Has some trouble with fine motor as well, but it is really mild. Was recently told he is also farsighted and will most likely get glasses this summer. Oh and he got a Cochlear Implant at age 1 and got his 2nd one at age 2 as he had not one bit of auditory imput b/c of the level of hearing loss.

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)

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#13 of 116 Old 02-28-2010, 03:52 AM
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I love this board. What a variety of things and how we help each's just beautiful.

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! 

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#14 of 116 Old 02-28-2010, 04:05 AM
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I have four children. The eldest three are 16, 14, and 12, and are all typically developing kids. My youngest is 7 and he is the reason I come here to the SN board. His issues are probably caused by a perinatal stroke or other brain injury, though we'll probably never know for sure (per our devastating recent visit to the neuro). His most severe issues are emotional/behavioral: bipolar (incl. delusions and hallucinations), ADHD, SPD, and severe anxiety with OCD features. He is also hypotonic and weaker on his right side, has gross and fine motor delays, and is affected cognitively, though we don't yet know the full extent of that (we've been too busy keeping him alive to worry about the fact that he's not learning!).


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#15 of 116 Old 02-28-2010, 08:53 AM
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We're still working out exactly what my sons needs are. He has low muscle tone and gross motor skill delays. No one is quite sure why he has low tone so we don't know if this is something he'll eventually outgrow. He has OT and PT, which is helping him a lot. He is 18 months and cruising everywhere, and might start walking in a few months.

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 10 and DS 8.
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#16 of 116 Old 02-28-2010, 10:09 AM
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My DD1 is a handful, but neurotypical. I come here for DD2 who has a hypoxic brain injury from a true knot in her umbilical cord. She has athetoid CP (though with only very mild athetoid movements at this point), developmental delays and reflux. We do PT, OT and cognitive play therapy for our conventional therapies and hyperbarics and ABM for the alternative. All are beneficial and she steadily makes progress, though very, very SLOWLY. Right now she is 21 months, not yet sitting, talking or crawling. We also have feeding challenges, she's not on the growth charts for weight, and eats only purees. She is a sweet beautiful girl whom we adore, but her injury and its ramifications still break my heart every day.

Mom to DD1 (Feb 2006) and DD2 (June 2008) with HIE, CP, dev delays and reflux
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#17 of 116 Old 02-28-2010, 11:09 AM
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DC #1 is a gifted handful, but neurotypical. DC #2 has some developmental delays, ADHD, and SPD. We have done lots of interventions and found good success with changes in diet, OT and meds. Overall our family is just so blessed!!!

K- Mama to : and :
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#18 of 116 Old 02-28-2010, 11:16 AM
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DS1 has low functioning autism and is developmentally delayed. He is nonverbal and has behavior issues. DS2 has ADHD and SPD.


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#19 of 116 Old 02-28-2010, 11:43 AM
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I think when I first posted in the original thread, it was just about ds's speech disorder. We've had a few developments since then.

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.
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#20 of 116 Old 02-28-2010, 03:58 PM
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DS is 32 months, the reason i came to this board. He most likely has a metabolic or (specifically) mitochondrial disorder, but testing hasn't revealed the answer yet. His issues:

-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)
-moderate hypotonia
-severe speech delay (he's at about a 12-16 month level in speech)
-mild immune deficiency
-seizure disorder
-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.
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#21 of 116 Old 02-28-2010, 04:32 PM
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Ds (8) has SPD, and mild anxiety. He had selective mutism as a preschooler, though I didn't recognize it for what it was. He may also have trichotillomania (hair pulling) - it seems to come and go. He's also a bright, thoughtful, observant introvert with a great sense of humor.

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.

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#22 of 116 Old 03-01-2010, 12:12 AM
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My DD is 13 and her main dx is PDD-NOS, but we are currently going through a complete evaluation progress so she'll most likely have new labels before long. She has lots of sensory issues. Since adolescence, she's developed anxiety and depression. She's also gifted.

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  shrug.gif

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#23 of 116 Old 03-01-2010, 12:41 AM
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My DD is 3 and her diagnosis is Childhood Disintegrative Disorder (on the autism spectrum). She also has food allergies, especially to tree nuts and peanuts. There is also some concern about absence seizures, so we'll see about that. She is a handful, but a joy!

Sabrina loving wife to Nate , frazzled mom to Gabriella (1-23-07) and Robert (2-9-10) My bed and heart are overflowing!
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#24 of 116 Old 03-01-2010, 11:51 AM
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VeeGee has Pierre Robin Sequence (most likely as a result of 22q deletion syndrome --we'll know within a month); micrognathia and velopharyngeal insufficiency (mostly repaired through jaw distraction and pharyngeal flap/sphincteroplasty); severe apraxia and articulation disorder; SPD -- with extreme oral aversions and dysphagia; Hirschprung's; GERD; low tone; and fine motor delay. She seems cognitively gifted, though, because of the speech delay, it's hard to know for sure. She's 100% tube-fed (though her eating skills are starting to slowly emerge ), and had a trach until she was three.

She's hilarious and charming, a total nut.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#25 of 116 Old 03-01-2010, 12:27 PM
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My older two children both appear to be typically developing. Ds1 is small for his age, has asthma and will be seeing an allergist soon.

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.

Marie-Mom to two boys and a girl.
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#26 of 116 Old 03-01-2010, 01:12 PM
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DD,6, was a 23 week preemie and as a result is legally blind due to ROP and micropthalmia. She also has mild hypotonia and has delayed fine motor skills as a result. This year we learned that she has has SPD. Overall, she is in great condition considering she started at 1 1/2 pounds and wasn't expected to make through the week.

Michele - Homeschooling mom to Hadley, (10/03 - the 23 week preemie miracle) and Noah, (08/05)
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#27 of 116 Old 03-01-2010, 01:12 PM
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My 7 year old DD has Dandy Walker malformation (brain cyst decompressed at 2 weeks old), dual shunted hydrocephalus (shunted at 2 weeks old, multiple surgical revisions), GERD, severe migraines, seizures, static encephalopathy, amblyopia and anisometropia. She also has dyspraxia, SPD and hypotonia. We think she also has non-verbal learning disability/disorder. She's been through the wringer with medical procedures, tests, therapies, special education, etc.

She is bright, sweet and funny. Doing quite well in 1st grade this year. I am incredibly blessed!
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#28 of 116 Old 03-01-2010, 03:06 PM
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Dakota is 5 1/2 and is Autistic. She has quite a of speech, but about 90% is scripted. She can tell us about things (by reciting lines), but is not able to formulate her own thoughts into words yet.

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
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#29 of 116 Old 03-01-2010, 03:28 PM
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DS1 has been diagnosed with high-functioning autism and SPD (primarily sensory-seeking). We believe he has an attention-deficit as well. He also has anxiety issues, which seem to be related to his autism. And he has tics, but they aren't interfering with his life yet. He's in OT and sees a psychologist, and will be back in a social skills group come Spring. GABA, Magnesium, digestive enzymes, and melatonin seem to be helping well enough so far. We have a strong family history of severe mental illness, so I'm constantly on the watch for symptoms of those.
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#30 of 116 Old 03-01-2010, 03:59 PM
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My daughter Gabrielle is 4 years old and has Lipomyelomeningocle, Tethered Spinal Cord, Neurogenic Bladder and Bowel. She has no feeling or movement below the knee on her left leg. She wears a KAFO on that leg and a hinged AFO on her right.

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 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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Most users ever online was 449,755, 06-25-2014 at 12:21 PM.