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#61 of 70 Old 08-10-2004, 07:14 PM
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Hi I am a SAH/homeschooling Mom to two daughters, Mackenzie is eight and Fiona is four. Both have Celiac Sprue (dx about a year ago) and Fi has type-1 diabetes (dx at 13 months). It can feel at times like I am the only AP type mom with kids who are not totally healthy but it has been humbling to read all of the posts here and see that many more struggle with far more than I.

I look forward to hearing how all of you cope and come out smiling!


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#62 of 70 Old 08-15-2004, 03:18 AM
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"Mackenzie is eight and Fiona is four. Both have Celiac Sprue (dx about a year ago)"

We're part of the celiac club here, too.
I have CD, as do my three older children (7, 4, and 2). Odds are the baby (7wks) will have it, too. Just makes it easier to cook for the whole family! Poor dh just has to go along with it, otherwise he'd starve to death!

I am also the older sister and co-guardian of a 22yo brother with just about every "disorder" there is. ADD, OCD, RAD, SID, PDD, as well as many others. He is also classified as mildly mentally retarded, though not "retarded enough" for benefits. He has no impulse control and no "memory of recognition"...meaning he can burn himself on the stove on Monday, have a hand full of blisters, and touch the stove again on Tuesday because he forgot it was hot. He has been aggressive and violent since his toddler years. He is also one of the most loving people I know.
He was born 3mos early and weighed 1lb, 15oz. For a long time, he was the smallest baby to be born and survive in our state. He was institutionalized for about 15 years, as that was the only way my family could get funding for him at all. He's gone through the programs of 7 different placements, but they've still never "fixed" him.
He is currently living at home and working a part-time job, which is an amazingly huge step for him. He is treated with a massive combo of meds, diet, therapy, and behavior modification that has made him capable of living in a home with a family (unreachable before now because of his incredible need for schedule and routine). He functions on the level of an 8yo mentally/emotionally, and a 12 yo physically.
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#63 of 70 Old 08-16-2004, 03:52 PM
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Hi there

I'm Angie, mama to 3 yo Finn, who started having seizures in April of this year. He's currently diagnosed with idiopathic generalized epilepsy and they're still not under control. He has grande mal seizures (though not frequently) and daily myoclonic (single jerk) and absence (starting and nonresponsive). We do have him on meds--both depakote and zonegran and are hoping that we can get them under control. We're also trying all sorts of natural approaches (homeopathy, cranial-sacral, removing all gluten from our diets), but some days, I just feel discouraged spending so much on the alt med stuff. But what can I do. I can't not do everything in my power to "fix" it.

ging-ging - Good luck with your dc and I've been soaking up lots of info on epilepsy so pm me if you want to chat. Have they totally ruled out metabolic causes???

Our thoughts with all your families...

Angie, Mama to Finn (6/01) and Theo (4/05)
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#64 of 70 Old 08-21-2004, 09:40 AM
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#65 of 70 Old 08-21-2004, 12:27 PM
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I just realized I never posted here. Which seems odd since I was so happy to see this thread resurrected. Anyway . . .

My oldest is 5. He has autism, asthma/allergies, sensory integration dysfunction, oral-motor defensiveness, and the sleep and food issues that often accompany these things. His diet is gluten-free, casein-free, yeast/mold-free, soy-free, and dye-free. He spent 2 years at an autism integrated preschool, and has made wonderful progress. Now, he is starting kindergarden on Monday. I'm nervous, but optimistic.

My daughter is 3. She hovers on the fringes of the autism spectrum, but she does not technically have autism. She *does* have dyspraxia, sensory integration dysfunction, auditory processing issues, low muscle tone, anxiety, and separation anxiety (which looks different than the "separation anxiety" that is tossed around so carelessly on the mainstream boards). She starts preschool on Monday. I think she will do well there (she liked the open house we went to on Thursday), and I know she needs to go, but I worry about her more than I do about my son with autism.

My baby will be 23 months next week. He has speech and motor delays and sensory issues. Hopefully, that's it, but this is the exact age his brother was when he regressed into autism, so I'm watching him nervously. Hopefully, he will benefit from what I've learned (no vaxes, organic food, etc) and be okay.

Glad to see everyone here,

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#66 of 70 Old 08-24-2004, 11:04 PM
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Here we are:
I'm mom to a five year old, who would most likely test in the gifted range, according to the preschool we attended for a while, but we've decided to homeschool, which has been wonderful for us.
My second is a fifteen month old twin, born at 33 weeks, diagnosed with Trisomy 21, or Down syndrome, while in the NICU shortly after birth.
My third is brother to his twin, fifteen months old, also a preemie. He had gastro issues and a surgery for an extreme umbilical hernia shortly after birth.
All boys!!!
We are a crazy quilt of strengths and challenges, and I love all my guys to pieces.
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#67 of 70 Old 08-25-2004, 12:51 PM
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I realized I haven't posted to the new roll call.
I am Erin SAHM to Sade 4.5 and Ethan 2.
Sade has high functioning autism. Some days he seems so completely normal I swear nothing is wrong and other days he seems so autistic. We were told the only thing consistant with autism is inconsitency.
Sade is starting preschool on Monday and I'm really nervous. He gets agressive when he gets overwhelemed. I am already consider homeschooling very seriously. Lately it seems he has been regressing. He is back to echoing us a lot and his body ticks are more frequent. His speech is still not close to where it needs to be for his age and its hard to carry on a conversation at all with him. We are playing with diet, we got him allergy tested which all came back negative. The good news is he does show affection to us. Not nearly as much as our two year old but he does give hugs and wants me to rock him to sleep.
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#68 of 70 Old 08-29-2004, 11:18 PM
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Hi All- New to this part of the board, thought I'd pop in towhere I feel I most belong!

Our daughter was adopted at birth in Feb. 2001. She was born to a birthmother with about 12 different risk factors, among them were alcoholism, prescription and street drug addiction (the scripts were ativan, dilantin and trazadone, particularly bad), advanced maternal age, poor health, chain smoking, homelessness, no prenatal until we entered the picture at the beginning of her third trimester and borderline gestational diabetes (as if the rest of it wasn't enough! LOL) Marjorie (the "baby" she'll always be my baby even tho she is a toddler now) has severe CNS delays, some dysmorphology and had retarded growth for her first 14 months (until we had a g-tube put in, a fundoplication done and figured out that she was allergic to corn.). I know what she has is at the very least FAE/FASD if not full blown FAS, mild Hypotonic (becoming hyper as she ages), Hemiplegic cerebral palsy, dyspraxia, Hyposensitive Sensory Integration Disorder (the more rare of the 2 types), she eats almost zero food by mouth, talks very little (apraxia) but does do some minimal adaptive American Sign Language. Lately, they have also been throwing around the PDD/NOS DX. We consider ourselves very lucky, although she does have quite a few issues, she is so much better off than we were told to hope for. She is a complete joy to be with and like almost all special needs kids has the greatest spirit even through all of her therapies, hospitalizations, etc.
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#69 of 70 Old 09-04-2004, 07:08 PM
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Hi. I'm mom to a 16-month old daughter with unexplained motor and verbal delays. Her mouth is usually open and drooling. She's just beginning to stand, doesn't speak any intelligible words yet. She's easily excited, and once excited tends to stiffen her body or go into the fetal position, hands and arms flapping.

We didn't really realize something was wrong until she was about 6 months old. She wasn't rolling over or sitting yet, and her head tilted to one side. Her eyes tended to cross, too. A MRI and vision screening came back "normal," so we moved on to physical therapy, which helped get her head aligned. We've continued with that. She sat up unsupported at 11 months, crawled at 13 months, and has now begun to pull up and cruise. Her social skills are fairly limited. Eye contact is brief, attention span short, and she isn't interested in imitating sounds or gestures. We've got some metabolic tests arranged, but what if they come back "normal" too?

I'm stumped, overwhelmed, lonely (moved 5x in three years), and not getting much support from the husband or family. As a newbie to Canada, I'm also grappling with an unfamiliar medical system. I struggle with my own depression and frequently feel like just letting my daughter play by herself, even though I know my interaction makes a huge difference to her. I hope being a part of this community will give me inspiration to keep doing my best for my daughter. You all seem so supportive and positive. Pleased to meet you.
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#70 of 70 Old 09-05-2004, 08:22 PM
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I have posted in this forum before but not on the roll call so here goes...

I am Jackie, sahm/homeschooling to 3 kiddos. Alex is almost 6 and for awhile I was in denial about what was "different" about him, many of my family and friends picked up on something not being right with him, so did I but hearing it all the time made me more in denial kwim? Finally I got him evaluated when it came to the point that I had no choice but to realize that he isn't just a bit more hyper than other kids. His ped said he is definitly ADHD (emphasis on the HD) and probably bipolar, with the possiblity this is behavioral problems with a medical cause. From some of the things ds has said the doc thinks he might be having migraines or seizure like activity in the brain. We will be seeing a neuro soon to rule that out. If that comes back normal then the next step is a physch eval. and bloodwork to rule out anything else. He has some sensory issues also so we are working on diet changes to see if this is food allergy related.

I have wondered about him since he was 3, now I'm sorry I waited so long, he could have gotten help sooner. it's become a worry about the safety of himself and my other kids so this needs to be checked out.

My 2.5 year old dd Daria is "normal" except for her eczema and lactose intolerance which are nothing compaired to trying to deal with my son!

My baby Eliza will be a year old this month and is "normal" as far as we can tell at this age. She does seem to have "flat head" syndrome, I will speak to her doc about that one. We tried our best but she would never sleep in any other position and moving her after she fell asleep would always wake her up only to have her go back to sleep in the same spot.

There is a very strong family history of depression, ADHD and bipolar disorder on my mom's side of the family, everyone that has kids has at least one if not more than one child with at minimum depression and then there are the ones of us with worse issues.

My dh I have wondered alot if he doesn't have add (not the hyperactive, just the serious attention deficit and fidget issues, he can't sit still) so there is that family history also. Every day I just pray for patience and that my ds is the only one that is affected. I have patience but I'm not sure how much I could take if more than one of my kids has a disorder. I to you all that have more than one SN child!! s

I have chemical sensativities and some allergy induced asthma attacks. If I avoid my triggers I'm fine, it's just harder to avoid them in public or if we visit people. At home I'm ok because we made it 'safe'.
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