An updated "Post Your Child's Diagnosis" - Page 6

[by-the-lake]

My son would straighten his legs and growl, loud, from birth. we could not bend his knees at all! It changed to holding his hands opened and fingers in a weird extention, arms flexed, and growling. Now there is all of this plus mouth contortion. We go back to the neuro next week.

[nicky85]

I am a first time mom to a sweet little 7 month old boy with spina bifida myelomeningocele, hydrocephalus, and Chiari II brain malformation. He has a shunt, but is otherwise completely normal, even ahead developmentally. He has use of both legs and urinary function. We have even been EC-ing for over a month now! We take him to a chiropractor regularly and it helps.

Can I count my husband as my other special needs child? (J/K!) He has rheumatoid arthritis, chronic fatigue syndrome and leaky gut. He is on a dairy free, soy free, gluten free, corn free, citrus free, egg free, meat free, peppers free, potato free, eggplant free, tomato free, chocolate free, nut free, oil free (except flaxseed and coconut) diet. But at last something works! =)

[Kristine233]

I'm a bit slow to respond, lol.

Andrew has Autism (or Asperger's depending on which DX you follow, Autism DX given by child specialist, Asperger's given by school contracted psych... both fit at times). He has major anxiety and SPD issues as well. We knew he was different at around age 2 for sure and that's when we started the process of getting evals and when he started ST and OT. He went from highly aggressive and non-social to now highly social yet extremely quirky. He's amazing!

Our youngest DD, Mackenzie, is just starting the eval process. Only official DX is her significant speech issues. At age 7 she is still extremely hard to understand. She has a lot of trouble with school, particularly reading. Many of her issues mimic DS's but present in a different way. She has absolutely no attention span, and is highly social despite her speech issues. She is a natural born leader! Unfortunately this has been her coping mechanism for falling so far behind academically. Also, instead of trying to fit her quirky personality into the social norms.. she made her quirks the norm. As in, she took her leadership abilities and used that to convince the other kids that she was the normal one. We love that she is outgoing and social, but using it to mask underlying issues doesn't solve anything so we are trying to figure out how to handle the underlying things to help her succeed. Her ST at school is starting the process to get an eval for her to cover everything from general LD, to ADHD to Autism spectrum disorders.

Oh, and I have Aspergers, lol.

[2boyzmama]

Originally Posted by nicky85

I am a first time mom to a sweet little 7 month old boy with spina bifida myelomeningocele, hydrocephalus, and Chiari II brain malformation. He has a shunt, but is otherwise completely normal, even ahead developmentally. He has use of both legs and urinary function. We have even been EC-ing for over a month now! We take him to a chiropractor regularly and it helps.

Can I count my husband as my other special needs child? (J/K!) He has rheumatoid arthritis, chronic fatigue syndrome and leaky gut. He is on a dairy free, soy free, gluten free, corn free, citrus free, egg free, meat free, peppers free, potato free, eggplant free, tomato free, chocolate free, nut free, oil free (except flaxseed and coconut) diet. But at last something works! =)

Holy fudge! Wait, he can't eat fudge...um...can't say holy cow either

Okay, so he CAN eat...rice, some fruits, some veggies, fish? Oats? Seriously, what does he eat?

[nicky85]

Oh yeah, and no yeast or sugar! He's staying away from beans right now too because they're harder to digest. Yes it's a lot of rice, fruits and veggies and not much else! No oats- we had issues with gluten contamination from oats. Fish is something we stay away from in general because of the mercury content and because we can't afford the mercury lite Wild Alaskan stuff. He can have lentils so we eat lentils a lot. He could have berries, but they are really expensive right now. I make a few other things for myself to eat (especially since I'm breastfeeding and need more than just fruits and veggies to keep me going). But right now I eat like him much of the time because I want to support him and I'll do anything to help him get better.

Typically, he has a green smoothie, fruit like melons, peaches, or plums, and cucumbers for breakfast. For lunch I make rice and lentils or rice and vegetables and a second green smoothie (That's our big meal of the day.) Dinner is a green smoothie, more fruit and maybe some rice tortillas. He might have some dates, flaxseed crackers, or a thai coconut for a treat. It's a lot of the same, but he says he doesn't care if he has to eat like this for the rest of his life, as long as he feels better. It's the only thing that has worked and kept on working. Before he was having RA flare ups that lasted weeks and was hardly able to do anything. Now he is up and working every day, brimming with energy, and going for hikes and walks. His sleep is starting to even out too. People with RA and CFS often need to sleep like 10 or more hours and my husband is now starting function pretty well on 8 or 9. He's addicted to having energy and feeling good. Hallelujah!!!!!

We are expecting that after a while (maybe a year or so) he can slowly start to re-introduce foods back in when his gut has healed up more. Right now, the idea is to flood the body with enzymes from raw fruits and vegetables to help him have more energy and change the ph balance of his body from acid to alkaline to control and heal the rheumatoid arthritis. I read in Jenny Mccarthy's book "Warrior Mothers" about parents of autistic kids who had to put their kid on a hardcore elimination diet to see results, like beyond GFCF, and I would think, "Wow, how do they DO that?" I think I'm starting to understand...

[redheadmom2boys]

I am very new to this site and this is my first post/reply so I hope I am doing it correctly. My almost 1yr old son was just diagnosed almost 2 months ago with spastic quadriparesis cerebral palsy. He also has strabismus with esotropia and is moderately to severely farsighted. He turns 1 year old in just under 2 weeks. He does not sit, crawl, pull up, walk, etc. He can roll though and we think he just started clapping and waving (his versions of it). His lower body is worse then the upper body and the left side is weaker then the right side. He had a sedated MRI which revealed moderate PVL with Wallerian degeneration of the corpus callosum. We are in the process of getting him into EI for physical, occupational, and speech therapies. He is a pretty happy little man with the best blue eyes! He has a 2 year old brother who is finally starting to interact with him. Guess it took him awhile to figure out his little brother wasn't going anywhere!

[columbusmomma]

I'll join in too!
DS, age 8 has adhd. He was dx around age 5.5yrs. We did neurofeedback,play therapy, and tried things in the classroom. We started meds last year and he takes vyvanse. It has been extremely beneficial. He also takes a lot of omega 3's. We still have a lot of difficulty with behavior though
I'm always researching and read through this forum a lot!

[twilkes]

diagnoses

My oldest son was diagnosed with Aspergers/PPD
My youngest was diagnosed with Kawasaki Disease.

[ciles]

My dd is 2 and has spina bifida mylomeningocele, hydrocephelus, a chiari malformation (probably II). Her shunt was placed withint 48 hours of birth. She also has a innocent (thus far anyways) functioning heart murmur, and most likely has some type of reflux. We will be seeing the doctor about that tomorrow. She is in a wheelchair full time, has no functioning below the hips. She will most likely have surgery on her bowels and bladder in the next few years. She is a very happy little girl although frustrated at times when she cannot do things. 

[Jack*and*Kate]

Hi everyone...

I have a DS, 4 - typically developing.

My DD, 2, has a microduplication on her 1st chromosome that is the first of its kind recorded (thus, lots of unknowns). She was also diagnosed with Noonan Syndrome in March of this year. She is 100% G-Tube fed, though we'll be starting an intensive wean in January (keep your fingers crossed, everyone!!). She was on O2 for the first 18 months of her life, and her cardiac diagnoses have been: Atrial Septal Defect (repaired through OHS at 9 months), pulmonary hypertension, pulmonary stenosis and hypertrophic cardiomyopathy. The last three - thank you God - are currently well under control but I live in fear that they might change at any time.

She has low muscle tone - she walked at 19 months - she still can't run or jump with both feet. She has a wonderful vocabulary but can be difficult to understand. Cognitively she seems to be close to on track - perhaps slightly behind but not significantly.

She is very small for her age - she's not on the weight chart but is at 25% for height. She is well-placed on the Noonan's chart, though, so that's good.

She is one amazing kid. Amazing. We like to say that she has a massive personality stuffed into a tiny little body.

[Petie1104]

Ok so out of my 4 kids only 1 has an official dx...

dd is 7 yrs old.  She has Asperger's, a speech impediment, and an as of yet undiagnosed learning disability that we are in the process of finding.  Apparently there is a disconnect between her IQ and her Academic something or other that says she has a learning disorder. 

ds is 9yrs and has been unofficially diagnosed with OCD.

ds 13yrs is nt and a very supportive big brother to his sibs.

ds 4yrs is my mild mannered shy little boy who also seems to be nt at this time.

[asch8]

2 kids my oldest it typical i come here for my 3 year old. He has many diagnoses in his life so far they are, anxiety disorder, dsypraxia, apraxia, ataxia, sensory processing disorder, nonverbal, static encephalopathy, low muscle tone, movement disorder, tremmors and automatic dysfunction. he has had alot of ear infection and sinus infection. he is on his 4th set of ear tubes and has had one sinus surgery so far. he gets pt ot and st though the school system. O i forgot to mention he has feeding problems most likely related to his low tone. he wears smo braces on both feet since he was 12 months (before he was even walking) he sees a genetics doctor who is trying to tye all his stuff together and find something that fits so we are currently doing testing. hopefully we will have a answer soon. Considering everything he has gone though he is a very happy little boy.

[mamabohl]

I suppose I should intro myself here now.  My older ds, Trevor (8.5), has asperger's, anxiety and probably dysgraphia.  My younger ds, Isaiah (6), most likely has SPD...we're working on getting OT referrals for both boys right now.  My daughter, Tessa (15 months) already seems to have some obsessions and reminds me a lot of Trevor at this age.  Who knows what her future will bring, I may just be seeing things that aren't there.  

[LaurieG]

Well, I am kind of sporadic with my visits to this board.  Sometimes I'm here a lot for a few weeks and then I don't come back for awhile when life gets busy with other things.

I am a mom to 3 kids.  DD (age 3) is the main reason I come here.  She has Turner Syndrome, hypothyroidism, borderline hypertension, 1 Multicystic Dysplastic kidney and the other kidney with newly discovered cysts as well but I'm not clear on the official diagnosis yet, Renal Tubular Acidosis (which we are hoping she has outgrown- currently weaning off meds and so far so good), and multiple food intolerances / IgG allergies to milk and soy in particular and depending on the day you ask I will come up with the rest of the list - LOL.  In addition to these official diagnoses she is getting ST and OT for sensory processing issues, mild deficits in postural stability, and oral motor coordination issues.  She had Torticollis as a young baby/ toddler and that seems to still play a bit of a role. 

DS1 has been identified as gifted and sometimes I think of him as having special needs, and other times I don't.  He's certainly a challenge to us and I wonder if there is a diagnosis in there somewhere but haven't felt it necessary to have him evaluated so far.

DS2 is a regular little boy, gifted I think but not to the extent of DS1 and therefore fairly NT. 

[Schae]

i'm kind of new, more of a lurker :)

My 5 (nearly 6yo) has been diagnosed with dyspraxia and SPD, we go to OT once a week. Our OT has reccommended that Luka (ds) go to play therapy for emotional immaturity and lack of social awareness issues.

[beenmum]

I am new here. I am here with 2 of my 4 kids.

My oldest girl  currently underwent genetic testing for Fragile X. We are awaiting the results. She is autistic, altho we have run the gamunt on that dx...from HF, to PDD-nos, to not autistic but mentally delayed with ADHD........ and right back to Autistic. She didnt walk until she was 27 months and she didnt speak until she was 4. She uses PECS well, mostly as a means of knowing what comes next.

She is severely globally delayed. She functions at the level of a 5-6 year old and she is 11. She will always have the mental abilities of a child and will always require adult supervision. We are currently homeschooling her.

She also has absense seizures and recently developed Reflex Anoxic Seizures with provoked syncope.

My youngest girl has several dx's. She has a genetic (passed down from me, but I didnt know I had it) connective tissue syndrome that has caused Pierre Robin Sequence. Its called Stickler Syndrome type III. She also has OCA 2 Albinism.

She was tube fed, but now is on mechanically soft foods. She is legally blind due to a cortical visual impairment caused by underdeveloped nerve pathways to her brain. She can read small print...but she cant tell if something is moving or still, if there are stairs, curbs, drop offs etc. She has no functional vision and gets VI services.

She also has an airway deformity and her airway swells shut whenever it becomes irriatated. SO, its been pretty scary.

She uses a white cane and newly fitted bilateral AFOs due to a signifigant limb length discrepancy ( 1 and 3/4 inches between her left leg and her right leg).

My youngest boy has the cleft palate and the connective tissue syndrome.....but he has had very few issues in his life, only some palate and speech issues.

My oldest boy is NT.