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I hope I'm okay to post here. DD is special needs, but no diagnosis. At this point it's believed she'll grow out of it, but right now my 2 year old, can not speak a word, and has only recently learned to crawl, can not walk. At 18 months she was like a newborn, even unable to sit without assistance.
My name is Ally and I have a beautiful 2 year old daughter, Carrie. She's a mess and I love her to death. She's behind broad spectrum, except her cognative/problem solving skills. She's always tested well above her age on that.
She's been behind since day one... and our ped literally told me I was just an over protective first time mom. At 9 months old he decided maybe I was on to something and began sending us to specialist after specialist for a arsenal of things that were supposedly wrong with her. At one point telling me that my child DOES have CP, so surely that at this point we were "just waiting on the official diasgnosis before they could begin getting her help". She does not in fact have CP. Another one was that because she had an undiagnosed heart murmur that her heart was too weak to support her body's functions and I would have a child who would need invasive/dangerous surgery or would never be able to do as other children do... That is not the case either... I at this point pretty much hate all doctors for their "nothing is wrong with her" then "Something is so drastically wrong with her that you may as well give up hope" switch in mentality.
After 9 specialists, 2 MRI's, more blood tests that I can possibly count... my daughter has no diagnosis. They say that her delays are not consistant with autism.
Apparently a child's braing feeds exclusively on their body fat until they reach 18 months in age. Carrie had no body fat. No matter what we did we could not pu a lb on that baby. She was below the 7 percentile for most of her infancy (but was very tall and fine head circ, so no FTT). At this point I have to believe that they're right cause at 18 months it was like a switch flipped. My 18 month old daughter could barely sit assisted, let alone without help and was unable to bring herself to the position. She could not crawl or walk. She said mama a handful of time when she was a little less than 12 months, then quit. Said dada a few times around 15 months... recently said more a few times and sock once, but in general has a zero word vocab at just over 2 years old. She's now crawling and cruising furniture, all of which she's figured out in the last 7 months.
They say that weight can commonly cause delays, but we got the short straw cause they almost never cause them as badly as Carrie has them. She's severely delayed in gross and fine motor and speech, borderline with social... She didn't even have a sucking reflex until after 13 months of age (had to have altered bottles or starve). She also has sensory issues in regards to touch and sounds.
So about 7 months ago we found out we're expecting again (suprise!). They believe the reason that Carrie's are so severe was that I was unable to gain during pregnancy so she started out with litle body fat and just simply unable to putit on... This pregnancy has been verymuch the same in regards to weight. Every doc and case worker I've discussed it with belives baby #2 will also have significant delays... though we can hope not as severe as Carrie's.
My only "hope" right now is that I have gestational diabetes with this baby and did not with Carrie. GD is likely to pack on body fat that she wouldn't otherwise have... giving her a chance that Carrie didn't have... but I even feel guilty for thinking of it that way. (I'm telling you all I ate with Carrie was ice ceam and fat foods and a lot of them, and was unable to gain a single pound until I was almost 8 months along).
We're in early intervention with the state and another program offered to us by the Army (Dh is active duty). I'm hoping for a private speech therepist soon because DD has made no progress. we've just started another round of specialist referrals to get her eyes and ears checked. Eye surgery has no been ruled out at this point.
How do you ladies keep up with your kiddos medical information? At our last base there was a special program called EFMP (they have it here too but they're useless). That doc checked through Carrie's records every 3 months to make sure she was caught up on any testing they cold do for a diagnosis and made sure one specialist was speaking to the rest. This hosp I have to carrie her medical records around with me and even then they act like I'm speaking a foreign language.
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
Hi and welcome! Carrie is beautiful! I'm glad you found us. My DD has many "mini" diagnosises that they believe are part of a congenital syndrome. She also has a metabolic disorder. I know how hard it is to not have answers.
Hi and welcome. I'm Traci and my son has a rare disease called LCH... but it took many months to diagnose him. because of his disease we expect some delays in the future, and have had a few already.
As for how I keep track of all the medical... I have a care notebook. It's very broken down. The front page is the calendar with all the appointments, just for that month, but thats because we schedule everything each week. The next page is the business card page, where I have the cards of each dr my son sees. Next is his diagnosis page, which has his diagnosis and a description of it (for doctors unfamiliar with it). Next is his medication list and med schedule and "road map". After that everything is broken into tabs. We have the scan tab where I keep the radiology reports and a copy of the image disks from all of his CT scans, bone scans, MRI's etc..., the labs results tab where I keep a copy of every weeks labs so I know what his counts are and have been if I need to know the trend, in the back I have the tentative schedule. It's a yearly calendar where I will pencil in when appts should be, when scans are due, and any other upcoming things, and I can pen in what has happened, so it is available for future reference.
This keeps everything readily available so i can easily answer questions.