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#121 of 735 Old 01-29-2005, 04:34 AM
 
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Originally Posted by snuggly mama
My youngest daughter is 3 yrs. old and is diagnosed with Senior-Loken Syndrome, a very rare genetic disorder. Because of the syndrome, she was born blind, needed a kidney transplant @ 16 months, and has multiple other medical issues. She's had a g-tube for a while, though she does eat very well. I always tell people that she looks like a train wreck on paper, but she's really a sweet, adorable, bright little girl. I'm glad to know there are other moms like me out there, though I wish none of us had to deal with these issues.
Hi,
I'm fairly new to mothering dot community, but was so happy to find a "tribe" of mamas with chronically ill children. My daughter Kajsa also has a G-tube & end stage renal failure. She will be receiving a kidney transplant sometime in the next couple of years. It's sometimes really hard to find someone who I can relate to. I can hardly wait to wade my way through this whole thread.
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#122 of 735 Old 01-29-2005, 04:56 AM
 
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So, have any of you out there who's kiddos illnesses are primarily physical had a difficult time finding books. It seems that whenever I go to the bookstrore, all the books are about ADHD, Autism or Down Syndrome. These are worthwhile subjects , and I'm so glad they're available, but they don't do me personally any good. My daughter has Chronic Kidney Failure/End Stage Renal Disease & while this is a fairly unusual condition, it would be nice to find reading material written by someone with primarily physical ailments. Our nephrologist told me that if I can't find it I should write it, because there just might be someone out there with the same problem. I'm just not there yet. Have any of you found any helpful books or other media that you would reccomend?
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#123 of 735 Old 01-29-2005, 12:09 PM
 
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Welcome, flibbertigibbet!

How old is your child? My dd is now almost 3yrs. out from transplant (she turns 4 tomorrow!) and doing well. We still have the g-tube, but are doing well. I have lots of resources I could share with you if you want to PM me.
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#124 of 735 Old 01-29-2005, 12:32 PM
 
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Originally Posted by flibbertigibbet
Hi,
I'm fairly new to mothering dot community, but was so happy to find a "tribe" of mamas with chronically ill children. My daughter Kajsa also has a G-tube & end stage renal failure. She will be receiving a kidney transplant sometime in the next couple of years. It's sometimes really hard to find someone who I can relate to. I can hardly wait to wade my way through this whole thread.
Welcome! My dd has a g-tube, too, due to severe reflux and feeding aversions. I hope she gets her transplant soon and you can put a lot of this behind you.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#125 of 735 Old 01-29-2005, 01:12 PM
 
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Originally Posted by flibbertigibbet
Have any of you found any helpful books or other media that you would reccomend?
I don't have any help at the moment (my kids have different problems than yours), but I often seem to come across references to a variety of things in my readings. I'll keep you in mind, and if something pops up, I'll send the title your way.

Tara
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#126 of 735 Old 01-29-2005, 06:22 PM
 
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Hi,Ross has learning disabilites,failure to thrive,speech disorder and reaccuring hearing problems

Elliot has LD and SD too
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#127 of 735 Old 01-30-2005, 05:27 PM
 
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Originally Posted by snuggly mama
Welcome, flibbertigibbet!

How old is your child? My dd is now almost 3yrs. out from transplant (she turns 4 tomorrow!) and doing well. We still have the g-tube, but are doing well. I have lots of resources I could share with you if you want to PM me.
It was so nice to see your response! Thank you.

Happy Birthday! Four was my absolute favorite age for my older Daughter (12 years)

I just read a bit on Senior-Loken Syndrome? My goodness, that sounds like my life times two. You must be one strong Mama!

Kajsa (Ki-suh) is 20 months. She was diagnosed at 39 days, got her G-tube at 4 months, & her kidneys totally failed last winter. Peritoneal Dialysis (PD) has been so amazing. She's like a completely different child. She's had so much unconcious time to make up for but she, get this, took her first steps the day before yesterday (to great fanfare). Now she's up to three or four at a time. I guess oodles of PT works.

Sorry, I got all caught up. As for resources, YES I would love to know about any! Currently, we have a nice community of resources in Kajsa's healthcare team. The problem is that we are moving to another state whare we know no one. Therefore, I have been looking for information/accounts everywhere. They don't even need to be specific to Kidney Dz's. Just so that I feel less like I'm perpetually floundering in the dark.

snuggly mama, do you prefer to be im'd? I like talking on a message board, 'cause I always figure that if I'm wondering about stuff, someone else probably is, too.

http://www.caringbridge.org/wa/kajsa
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#128 of 735 Old 02-02-2005, 01:19 AM
 
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Hi! I'm new to MDC. My 4 yr old son has severe environmental and food allergies with allergic athsma. And my 2.5 yr old dd has a diagnoses of PDD(possibly Asperger's)/SID and has been borderline failure to thrive. She'll be 3 in May and weighs 25 lbs at 37" tall. She takes up 98% of my parenting energy. She sees a behavioral pediatrician and an OT weekly. She is also hypotonic and has a presumed mood disorder (maybe ODD?). She's extremly intellegent and is very interesting to watch and listen to though! LOL! I also have a typical 4 month old dd. Nice to meet everyone.

~Jo
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#129 of 735 Old 02-07-2005, 04:07 PM
 
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My DD is 3 and is speech delayed. She receives speech therapy twice a week and has also received developmetal services. Her speech therapist eveluated her for SID which she said DD meets to a "t." But she hasn't gotten the "official" diagnosis from her doc, yet. Her speech therapist feels OT is needed.

*Momma to a spunky 11 year old & diva 9 year old
*Proud wife of "The Rock"
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#130 of 735 Old 02-14-2005, 12:08 AM
 
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My son Aidan has Type 1 (insulin-dependant) diabetes. We just "celebrated" one year since his diagnosis. He is currently using an insulin pump.
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#131 of 735 Old 02-16-2005, 05:52 PM
 
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Updating, my ds's diagnosis has been changed from possible adhd to bipolar. The psychiatrist (sp?) we are seeing said he is definitly bipolar (I suspected this ) and he may also be adhd but right now let's see how the bipolar meds work out and then we can figure out the other little quirks. He has some sensory issues and is obsessive about dates, numbers, times and has a few other little odd behaviors so there is also a possibility still of aspeger's on top of the definite bipolar. He is 6, this is so hard!
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#132 of 735 Old 02-16-2005, 07:04 PM
 
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to you. Hang in there and keep supporting him. HOpefully it will get easier when you get things sorted out.

 
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#133 of 735 Old 02-21-2005, 01:07 AM
 
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My son Nolan is almost 2 (born 6/1/03). He has gastroesophogeal reflux and has been on Prevacid for over a year. He also has had an aversion (refluxes, throws up) to solid foods, and wasn't able to eat any solids until he was around 14 months old. There is no diagnosis for that symptom however, we have seen GI specialists and allergists etc. The reflux is mostly managed with the prevacid and the problem with solids seems to be working itself out with age (albeit very slowly).

Being on prevacid really bothers me (as does everything else regarding his illness), but I try to remind myself that it has so far helped him to avoid many of the other problems with reflux (asthma, ear infections, etc).

Anyway, glad I found you guys...

Nicole
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#134 of 735 Old 02-26-2005, 12:07 PM
 
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Our oldest, CallieAnne 12 yrs old has Trisomy 21 aka Down Syndrome. No health problems and is in the public school in a TMI/MCI class.
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#135 of 735 Old 03-14-2005, 04:30 PM
 
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Cameron is 6 1/2 and has been diagnosised with Aspergers, ADHD, ODD and SID and is currently attending regular classes in Kindergarden and is under the care of a Psychiatrist.

Gabe will be 4 next month and we recieved a call today and the school Psychologist believes he has some type of ASD or Autism. His Ped has refered him to a testing facility that only deals with diagnosising ASD and SID. He has numerous developmental delays including speech, motor skills and self help skills. He is verbal however his language skills were tested to be at the level of around a 2 year old and his speech is often unintelligible. He is a tip-toe walker and is currently recieving PT however that is the only therapy he is getting because my health insurance has refused to pay for all other therapies and he doesn't start Preschool unitl either the very end of this school year or next fall. The public preschool he will be attending can only provide him with Speech Therapy so we are hoping to do as much as we can with him at home and we have been reading up on brushing and joint compression. This has been a very frustrating and emotionally draining process for us and we are finding out that there is very little help or even willingness to help in the school district we live in.
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#136 of 735 Old 03-15-2005, 12:12 PM
 
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Hi
I have 5 children. My oldest is Marissa, who is 7. Her diagnosis is Cerebral Palsy and Intractible Seizure Disorder. She was injured by vaccines as a baby, but there is no "official" diagnosis for that. :

Marissa functions at about a 10 month old level. She can get up on hands and knees, although she just stopped crawling recently. She has a g-tube that I shove pureed foods through (I think this is much better than the formula). She is 100% dependent and has seizure cycles, which can be life threatening and terrifying. She is also extremely sweet. We tried school for her and it was a terrible fit. She is far too passive to get any attention in that environment.

We stay away from meds as much as we can, although after a round of unstopable seizures along with aspiration pneumonia and severe anemia we allowed things I never would have if her life had not been in immediate danger. Normally we treat her homeopathically, which has been more successful than anything else thus far (I've tried LOTS of different things!).

I don't know any other moms of special needs children that do anything outside the mainstream where we live. It can be very frustrating and lonely!

I just joined the Mothering boards and I'm looking forward to participating
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#137 of 735 Old 03-16-2005, 01:20 AM
 
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Hi everyone

My dd Maura is a bright, musical, artistic little toddler who doesn't toddle just yet. She's almost 22 months old and isn't walking. She can, just won't yet. She has fine and gross motor skill delays, probably speech delays, all due to hypotonia. And that's about it that we know of. We did test for Down's (she actually had markers that I found out are also common in people of Native American descent - dh has some NA blood in him), and also Celiac's and lead posioning, but no diagnosis. We're going to see a developmental ped next month. She's currently in PT, OT, and has started ST.

I've also decided that I've set a record - all four of my kids are in ST, lol! The older three b/c of articulation problems that they inherited from me. Maura...well, we joke that once she does start talking, she'll speak perfectly. Because she just HAS to be different than her sibs.

I have a website (the Life as Mommy link in my sig) that I started just to write about my adventures in motherhood, but I've decided to add an informational page with links and such for developmental delays. I just started this task, but please, check back within a week and you'll see a ton of new stuff!
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#138 of 735 Old 03-16-2005, 10:03 PM
 
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Hi I have several children with special needs. My oldest is 13 and he has Partial Aginesis of the Corpus Callosum, dysmorphic facial features (they seem fine to me), developmental delays, exotropia, Sensory intergration disorder, aspergers, hyperextension of his joints, and language problems.

My thrid child (second son) is 4 and has celiac desiease(no I can not spell). He is also allergic to just about everything and I do really mean everything. His allergist said that in 22 years of practice he has never seen someone with so many allergies. They manifest as sever eczema so he always looks as if he has something on his body and he itches horribly when he got into something that caused a flare up.

My fourth child (second girl) has kidney reflux. Thankfully this is usually something children grow out of as her sister did. But it does mean constant watching for any sign of a uti since left to go on too long and it could get real ugly. We also do ultrasounds several times a year to watch for any kidney damage.

Well there are some of my children. I have enjoyed reading the threads and found somethings very insightful.
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#139 of 735 Old 04-09-2005, 01:51 PM
 
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Hi, I'm new here. I can't tell you how much I needed this thread. It really helped me put things in perspective today. In my daily life it seems everyone else's kids are "perfect" and I'm the one with the "damaged" child. It gets too easy to feel down and guilty. It's great to read about other kids dealing with so much more and thriving.

I have 4 kids. My oldest is gifted and while he has some "quirks" if you will, it's never been enough to keep him from functioning.

My middle son, who'll be 6 next week, was just diagnosed with OCD. Of course, that lends to itself to a variety of other behaviors that look like other things (ODD, Bi-polar, etc) but we believe the root off his issues is the OCD.

I look forward to getting to know everyone and learning.
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#140 of 735 Old 04-10-2005, 03:48 PM
 
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Welcome Hope you do find comfort here. Sometimes we arent real busy here but sometimes we are. Looking forward to getting to know you more
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#141 of 735 Old 04-11-2005, 01:38 AM
 
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Six year old Andy is autistic - now high functioning after massive ABA (Applied Behavioral Analysis) since age 3. Mainstreamed and doing well academically, working on social skills and tantrums. Current stims -geography and axes. Working on eliminating axes. Changes stims about every three weeks.

Bonnie is five and has neurofibromatosis (NF1), probably bi polar (too young for diagnosis), expressive and receptive learning disorder, cognitive issues/delay, memory storage and retrieval problems and low muscle tone. Very sweet at home but very scared and anxious outside the house where there are too many unknowns.
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#142 of 735 Old 04-16-2005, 01:20 AM
 
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I have never posted here because I am not sure if my daughter "fits" here, but here goes. My daughter is typically developing, but has asthma, eczema, and reflux, all related (we think) to an allergy we haven't been able to pinpoint. She has been on strict elimination diets, allergists, dermatologists, etc, and no one can help us, except that the reflux is being controlled with Ranitidine. The asthma is mild. The eczema is the most troubling.

Sometimes she is just fine, symptoms mild or gone for a while, but then, WHAM! she is broken out all over, wheezing, not sleeping, scratching incessantly. She has been in a bad stage for over a week now, and it has been very stressful. Up all night trying to keep her from seriously hurting herself with rubbing and scratching, dealing with a tired and uncomfortable toddler during the day.

I have been needing support for the feeling of "Why can't we do what other people with kids do, eat what they eat, enjoy "normalcy" instead of spending endless time lubricating, watching for and stopping scratching, worrying about every bite of food and medicine I give her? Then part of me kicks me for feeling sorry for myself when it could be much worse.

L.
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#143 of 735 Old 04-16-2005, 05:14 PM
 
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Quote:
Originally Posted by Leatherette
Then part of me kicks me for feeling sorry for myself when it could be much worse.
I understand. But the fact that things *could* be worse doesn't mean that a situation isn't hard as it *is*. This is a great place to find support during hard times and good times, too.

Welcome,

Tara
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#144 of 735 Old 04-17-2005, 12:43 AM
 
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Thanks, Tara.

L.
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#145 of 735 Old 04-18-2005, 11:59 PM
 
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Well, my journy has been a long one. And I started posting here in 2000 in this forum (MDC in 1999)

My ods is mentally retarded (aka government and school standards). He has developmental delays, speech delays, is fine motor impared. His visual/perceceptual skills are diminished (meaning he doesn't know where he is in space and is, thus, clumsy.) He also has some psychological "difficulties" which, in all likelyhood, will result in a mental illness diagosis when he is an adult. He has already had one psychotic episode.

On the other hand, he is at heart a "lover, not a fighter"

And has SO VERY MANY GIFTS that cannot be taught!
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#146 of 735 Old 04-19-2005, 02:44 PM
 
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I know my Special Needs are not as bad as some of the others but I have a 14 yo with ADHD that is doing pretty well unmedicated. I also have a 4 you with ADHD/OCD and possible Bi-polar we are still going throug eval for that.. I have to admit that he is the most difficult of my 4 children. As much as I didnt want to we medicated him. He was causing bodily harm to himself and his little sister. Then we have our littliest which we dont know yet if she has a speach delay or not she is 2 and speaks about 10 words.

I look forward to getting to know all of you.
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#147 of 735 Old 04-23-2005, 09:48 PM
 
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My 22 month old daughter is diagnosed with Dandy Walker Malformation. This disorder is basically a fluid filled cyst where there should be brain matter in her cerebellum area. She does NOT have hydrocephalus, thankfully. She was diagnosed when she was about 2 months old. She had been having seizures, but very brief in length, so I think I was in denial that they were indeed seizures. She had a CAT scan and MRI and it was discovered that she had only 10% of her cerebellum. She is the sweetest, most cuddly, happy little girl. Her sisters adore her, as do her dad and I. She is progressing just amazingly well, considering. We have been receiving services for her through our regional center and united cerebral palsy since she was about 2 months old. She is not walking yet, but can crawl as quick as anything, and is pulling up and cruising some. We had an eval. yesterday with a PT. It was a great appt. She really seemed to pick up on Maya's quirks - always nodding her head when she crawls or isn't actively doing anything. THey also think it is sensory related....
My pregnancy with Maya started out with twins, but at 9 wks (the day I found out it WAS twins) was the day we found out that one hadn't survived. THere is some speculation that rather than it being DW that maya has, that instead it was a blood clot from the other baby that broke loose and made its way into maya's brain causing a stroke and that part of her brain to stop growing.
I am so amazed at the progress my daughter is and has been making. When people see her and ask her age, they are usually taken aback that she is not walking yet. I see it totally different. If you were to read online regarding Dandy walker, you would find that 50-75% of kids have some form of mental retardation, some never walk, they have very complicated issues. Maya seems to be one of the lucky ones, doing AMAZINGLY well!! She is progressing BEAUTIFULLY!!!
I am also finding that i am very defensive feeling, and am coming to terms with the fact that she is technically classified as special needs. The appts I have for her are, at times, overwhelming. Just in the next month I have appts with neurology, speech, audiology, and ophthamology. I am sure many of you face the same struggle. It is difficult to balance the time and energy she needs with the needs of my other two young daughters (ages 3 1/2 and 4 1/2). I feel like I am constantly running appt. to appt.

Okay, I have now written a book, certainly didn't mean for my intro to be so long. I am glad to hear your stories and know that I am not alone with my worries and fears...

Thanks for listening.

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#148 of 735 Old 04-23-2005, 11:07 PM
 
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WOW!!! Thanks for sharing! I have not heard of "Dandy Walker" . In my personal (and professional) experience, YES, the numerous appointments are overwhelming but often subside as a child gets older!

Bless you both and keep sharing her story! AND yours!
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#149 of 735 Old 04-24-2005, 12:15 AM
 
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Welcome to all the new mamas
I to havent heard of dandy walker . I am glad you are here and hope to become more informed My daughter is almost 9 and she had tourettes. We all know how you feel about the appointments. Some just more then others. Glad you are here and looking forward to learning more
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#150 of 735 Old 04-24-2005, 12:48 PM
 
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Hi there, Peekyboo!! Just wanted to say howdy! My daughter is 21 months and also not walking. We do know the reason (dandy walker brain malformation) and she is getting close, but still not quite there. She cruises around and crawls fast, but not yet ready to walk. We just had a PT eval yesterday (FINALLY!) and she is probably going to get braces for her legs, and a baby walker to help her get around and play.. I am very excited for her. I think she totally needs both of these, and she is so frustrated and determined to walk!! Anyway, just wanted to say that there is someone else out here that knows what you are going through!! I love your website - thanks for all the great info!!
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