Post your childs diagnosis!! - Page 7

[flibbertigibbet]

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.

[flibbertigibbet]

reading material

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?

[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.

[USAmma]

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.

[thoesly]

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

[~~sam~~]

Hi,Ross has learning disabilites,failure to thrive,speech disorder and reaccuring hearing problems

Elliot has LD and SD too

[flibbertigibbet]

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

[craftykitty]

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

[DebraStorm]

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.

[LMJenkins]

My son Aidan has Type 1 (insulin-dependant) diabetes. We just "celebrated" one year since his diagnosis. He is currently using an insulin pump.

[pilesoflaundry]

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!

[lauren]

to you. Hang in there and keep supporting him. HOpefully it will get easier when you get things sorted out.

[Nicole Ridvan]

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

[StephanieUSCG]

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.

[katytheprincess2]

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.

[UCmama]

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

[peekyboo]

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!

[mommykof5]

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.

[btlsmum]

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.

[christymama]

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