posted
OK, let me try to be as breif as possible...
My daughter Olivia is 5 1/2. She has always been challanging. At two days old she started screaming and refusing to nurse. It took three weeks of pumping, finger feeding and patience to get her fully breastfed. She did not regain her birth weight until 3 weeks. At 6 weeks she (and I) were diagnosed with thrush. We went through all the medical treatments (nystatin, lotrimin, and levels of Diflucan I later found were not safe)none of which worked. Finally I kicked it with a strict diet of no refined carbs or dairy, Gentain Violet, olive leaf extract, slipperry elm extract, and probiotics. She ws 13 months at the time. She could not handle solids until 11 months- she would projectile vomit. She also has food sensitivities (as opposed to allergies)Egg, when she was young ( she seems to have outgrown that, and currently we have identified dairy and citrus ( I am only including "real" foods, but she also reacts - with hyperactive symptoms to food dyes and preservatives). When she has these foods she has poop accidents. She reacts that way to all childrens mutli-vites too so I worry about her nutritional status. She also has a history of pica and random vomiting episodes with no other sign of illness. She has sypmtoms of ADHD, with food additives being a major trigger. Her ped has performed a CBC and urinalysis and says she is "normal". I feel convinced he is maybe not doing the right tests and is missing something. What else...oh, she gets rashes on her face. She still seems prone to thrush and also to UTI's so I give her daily acidopholus and cranberry juice (100% juice, with high cranberry content). And of concern we recently noticed that she heals much slower than her brothers from scrapes. On the good side she rarely gets so much as a cold (even if other people int the family get one) and has never had an ear infection. So I don't think it's an overall immune problem. Any help, opinions, ideas appreccieted
posted
With all the digestive issues here, the doctor has not done an upper GI test? For things like pyloricstenosis or some such? Since you mentioned the projectile vomiting at an early age, and random vomiting.
But I'm not a Sara S, so this is just my humble questions.............
posted
dpr, I'm not a medicos, so I can't give any medical advice - I'll just give Mommy advice.
If you think the tests are not adequate, if you feel there is something wrong that the drs aren't addressing, then either push for the tests or find another doctor.
Too many times I've seen parental instinct borne out. In my own case, I had to push for the tests that finally got us to where we know what type of disorder Daniel has. (we still don't know which exact one, but hey, we've narrowed it down to a ballpark!)
I know your frustration - Daniel had feeding issues, reflux, an alarming tendency to try and swallow food inadequately chewed, etc. He's also very slow to heal and scars badly from a minor scrape or bump - his is all due to a genetic disorder that affects collagen.
Not that your sweetie has anything like that, just letting you know I feel your pain. Best of luck - I hope you get some answers!
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Belle, you have great advice and Daniel is so lucky you have pushed for a diagnoses.
One thing I plan to start for sure is a 'diary" so we can give her doc and any specialists an idea of her daily digestive issues. When we started thinking about it the slow healing worried us.
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posted
DPR, It sucks to not know what is going on. A couple of years ago I started to get horrible chest pains at night. At first they thought it was acid reflux, and then we figured out that it wasn't. My mother was a wreck until we got it all settled. It isn't fun to see someone you care about have something wrong with them and not know what it is.
posted
dpr, I'm still thinking. I'm in a work crunch right now, and I really have to focus on that. But this is percolating away in the back of my mind. I want to do some more reading.
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dpr, I'm still percolating. I'll try to write it out tomorrow -- though I may not have answers, I can tell you how I'd think through it.
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posted
Auughhh...she had a 45 min screaming episode last night after eating a peanut butter cookie, Hubby refuses to believe it is food related.
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romany, it doesn't fit any pattern that makes sense to me. It triggers no red flags in particular, and that is usually a good sign. But it doesn't mean there isn't something the matter -- obviously, something is bothering her. Just that it doesn't fit the scenario of something I was trained to be sure it isn't. (if that makes sense)
I ordered a book through the library that helped me with thinking through this topic for a class before, and I'm waiting for it to come in.
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A suggestion I have had from friends is to have a Rast(?) test done on her, for sensitivities, especially gluten, corn, etc. It sounds simple (it's like one blood draw instead of a bunch of needles, right?) and if it can tell us yay or nay would be worth having my hubby take an afternoon off work to hold her down.
posted
Hey, Sara - I just wanted to say that it's really nice of you to be so conscientious when people on Hatrack ask you for medical advice. I know there have been threads and stuff, but I was just struck by how many calories are expended by percolating and ordering books from the library. It's very kind of you. Posts: 7600 | Registered: Jan 2001
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It tests for IgE response to allergens, and it's pretty sensitive. Tends to be more specific than the scratch test in distinguishing between true allergies and sensitivities, although there are a lot of false positives, still. Something like 1 in 5 positive results on a RAST test are not correlated with any physical symptoms.
Your best bet is to work with an allergist, if you can. Hard stuff to interpret.
[Ralphie: how sweet! I get a lot out of it, too -- Hatrack has made me much more knowledgable and well-read about my own profession.]
[ December 30, 2004, 04:12 PM: Message edited by: Sara Sasse ]
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posted
Thanks so very much Sara! I am calling her ped next week to set up an appt, and probably an allergist will be next.
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posted
Mostly, posting to bump this up to the front page again.
First&foremost, I am not a physician nor a medical practitioner of any sort nor in any way qualified to suggest a medical diagnosis. So take any hints that you might read into my questions with more than spoonful of salt. In fact, take them with a mountain of salt.
But "At two days old she started screaming and refusing to nurse. It took three weeks of pumping, finger feeding and patience to get her fully breastfed. She did not regain her birth weight until 3 weeks.", "She could not handle solids until 11 months- she would projectile vomit...She also has food sensitivities...and random vomiting episodes with no other sign of illness.", and "She has symptoms of ADHD" did remind me of something... ...though I didn't know what until I began googling for links relating to a completely&totally different question.
Remembering that you had posted your children's pictures at Foobonic, I looked again. (Beautiful kids, by the way) So with the proviso that you understand that the context of your daughter's picture may be totallymisleading me as to my questions:
1) Has your pediatrician run a calcium level test on her?
2) Has your pediatrician heard any suggestion of heart abnormality during exams?
3) Does she have more than a normal amount of spacing between her teeth?
4) Is she noticeably smaller than other members of your extended family when they were at the same age?
5) Does she dislike sharp loud noises -- balloons popping, doors slamming, hammering, etc -- to an extraordinary degree?
6) Does she exhibit extraordinary sensitivity to textures? Including food textures?
7) Does she have an extraordinary fondness for music?
8a) Does she already read? 8b) Does her normal speaking vocabulary contain large or lesser-used words that you wouldn't expect a child to know, let alone use? That you wouldn't expect to hear from most adults during average conversations?
9) Is she extraordinarily friendly toward strangers? Adults even more so than other children?
Like I said, I ain't the slightest bit qualified to suggest a diagnosis... ...but your answers may help SaraSasse or your own physician.
posted
You're thinking of William Syndrome, aspectre? I was thinking about it, too, although it is rare, and other things are more likely. She has the elfin, pixie-ish face with wide-spaced eyed and a wide, thin upper lip.
posted
aspectre, It really sounds like your questions are based on someone with either Downs syndrome or Williams syndrome, Williams being the likelier of the two. Is that the case?
aspectre, I'm very glad you mentioned this. I think of Williams Syndrome and kidneys whenever I see a pixie face ( ), but I had completely forgotten that there were digestive problems associated with it. That's amazing -- I will dig up info for romanylass along with the rest of a differential.
Again, dpr, it's a long shot, but it's worth thinking about. That diagnosis is a real puzzler and easily missed. You might end up owing aspectre a consultant's fee. *big grin
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posted
Thank you so much, both aspectre and Sara. I will read and come back to this but answered some questions.
) Has your pediatrician run a calcium level test on her? No.
2) Has your pediatrician heard any suggestion of heart abnormality during exams? He has not mentioned any
3) Does she have more than a normal amount of spacing between her teeth? Had to go look. Yes
4) Is she noticeably smaller than other members of your family when they were at the same age? YES. her brother (3 1/2 years younger) weighs more than she does.
5) Does she dislike sharp loud noises -- balloons popping, doors slamming, hammering, etc -- to an extraordinary degree? Yes
6) Does she exhibit extraordinary sensitivity to textures? Including food textures? Yes
7) Does she have an extraordinary fondness for music? Vey much so
8a) Does she already read? Yes, on a bout a Dr Seuss level
8b) Does her normal speaking vocabulary contain large or lesser-used words that you wouldn't expect a child to know, let alone use? That you wouldn't expect to hear from most adults during average conversations? Yes, but that is true of her brothers too. Umm, and hubby and I as kids.
9) Is she extraordinarily friendly toward strangers? Adults even more so than other children?
Yes. She falls in love with adults easily, and often gets picked as "new kid helper" at Sunday SchoolPosts: 1021 | Registered: Sep 2004
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posted
Doing more reading...not sure I would describe her as developmentally delayed. But so much of the other stuff fits. I will be printing stuff of to take to the dr.
Again, thank you so much Sara, aspectre and foundling....
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The spectrum of "developmental delay" in persons with WS is quite broad. These children tend to be very verbal and -- even if there is some delay -- it isn't usually picked up except on specialized tests. I believe (IIRC) they can be of normal to higher intelligence, just that there is usually some processing differences from the norm (ADHD, musical ability, etc).
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posted
dpr, My sister has Williams Syndrome, and wasnt diagnosed with it until she was 8. No real developemental issues were apparent for her until that age, and she was the first child of very young parents. They just assumed that my next sister was a genius and an angel when she could do things at a much younger age than my older sister and wasnt nearly as difficult to keep happy. All of the symptons that aspectre described were apparent in her from a young age, but Williams Syndrome is so rare that none of her doctors even thought about it. It took my parents doing alot of research and insisting that it was a possibility for her to be diagnosed. She exhibits very few actual mental disabilities, and is incredibly intelligent in her own way. She is 32 now and lives on her own with a much loved room-mate who helps with cooking and such. It's unfortunate that she was diagnosed so late, because there are basic personality traits that she developed at a young age in reaction to people not realizing that she had a disability that inhibit her socially now and that she has to work with. Anyways, if your daughter does happen to be diagnosed with Williams Syndrome, I have a huge amount of resources and information that I could get to you. Either way, I think it is amazing and wonderful that you and your husband are being so insistent on finding out EXACTLY what is going on with your child. Best of luck to you and yours.
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Oh, she walked and talked early but her speech in still kind of unclear; I was going to ask for an eval at her next check-up (in Feb).
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posted
Since it's been mentioned, there are a lot of things that you wrote about that sounded just like my son. The trouble with feeding her early on being the first on the list. He's PDD/NOS, and I was wondering about your daughter. It sounds like it's worth checking into, but know, intervention is really, really hard to get and yet, the earlier they start, the better off she'll be. By the time the school recognizes (and they will recognize a diagnosis and pretend to be doing remediation, but until she's in about 5th grade, they might not be very helpful, thinking she'll grow out of it ) it will be too late.
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posted
Kayla, I've never heard of PDD/NOS, but I looked up some info, YaleMedStudies , and it actually sounds alot like what my brother and sister-in-law are going through with their daughter. I'm sending them some sites to look at. Thanks.
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posted
Actually, foundling, if he hadn't spent three years in intense speech therapy he would have actually been classified autistic. The speech was the only thing he scored a point higher than autistic on in all their tests, but that pushed his overall score into the PDD/NOS category.
And, as a helpful tip, all the PDD/NOS kids I've run into seem to have a weird thing in common. The scream. And I mean an ear-splitting shriek. And they do it often. You have no idea how many times I've heard a young child doing that and I wanted to walk up to the parent and tell them to have their child tested because early intervention is so important. I've heard lots of kids scream and throw tantrums, but if you've ever heard this particular shriek/scream, you'd know there is a huge difference and it's quite unmistakable. Unfortunately. I don't know if it really is a sign/symptom of PDD/NOS or if it's just a quirk that the relatively small group of kid with PDD/NOS I've met have.
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posted
I have no words of wisdom to offer. I just can't read through this post without commenting on the obvious love that exists among the members of this forum.
DPR, you're an awesome Mom. I hope your daughter's appointment goes great. Any news will be helpful news, I think.
To everyone else who posted (Sara, I'd come and clean house for you if you needed it), the concern and desire to help is so amazing! I came home from work pretty disgusted with the world, and once again got my Hatrack reminder of the good ones out there.
dpr, I got the book in. I'll read tonight and post you something more thorough tomorrow. I'm down with a cold, so I'm staying home. Posts: 2919 | Registered: Aug 2004
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posted
The ped ordered about 4 different tests: IgA, IgG, IgE, a CBC, a full allergen panel.....I forget what test he is using, but it is a newer one with more accurate results than the RAST. We go back on the 21st.
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posted
Kayla, it's a loud, ear-splitting sound, isn't it? For no reason?
If that's it, I think I babysat a kid with PDD-NOS. At the time, I assumed it was an attention thing. I also had problem with him getting too aggressive while he played. When I told him what he'd done hurt me, he'd just laugh.
His parents are a bit lax on the discipline, so I figured it was all related. I may have to call my friends. Hmmm.
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posted
Avid, yes, it's for no reason whatsoever. I've never figured it out. It's really weird. Also, they like to play with other kids, but they don't really play with them. They play next to them.
Actually the fact that the kid you babysat hurt you and laughed is another sign. Lack of empathy is a biggie. It's not that they are mean, they just don't get the fact that other people don't feel what they feel. Like you know how when kids are little, they think that if they can't see you, you can't see them. If they cover their eyes, you can't see them. Weird.
But PDD/NOS kids don't understand that other people aren't feeling the same emotion they are. They don't understand body language, they can't look at someone's face and tell the difference in emotions.
My son gets the big ones, rage and laughing and crying. All other emotions are a bit of a mystery to him. We work on it. We often look at pictures and ask him what the person is thinking. We also stop a lot of movies to ask him how he would feel if that happened to him (whatever just happened in the movie.) But he knows a person is sad if they are crying. He knows they are mad when their brows are furrowed and are frowning. He knows they are happy when they are laughing. But he doesn't understand that someone can be sad and not be crying. He doesn't know what that looks like. He doesn't know someone can be happy and not be smiling. He really, really doesn't know that someone can be mad and not look furious.
He's been bullied for so long that we are torn now that he's teasing other kids. We are kind of glad he's finally sticking up for himself (and sometimes in very funny, clever ways so it's hard not to laugh or tell him he's very clever,) but at the same time, I always ask him why he would do something like that considering how much pain it's cause him.
He's still genuinely puzzled because he doesn't see the two as similar at all. When they tease him, he gets upset, but when he teases them, it's funny and he doesn't understand that it's just the opposite for the other person. To him, they shouldn't tease him because they should know that he's upset, but they should laugh when he teases them because it's funny.
Like I said, we're still working on other people's feelings.
He was pretty old the first time he lied to us. (he's 14 and it was just in the last year or two that he finally told us a flat out lie) It never occurred to him that he could lie. So, the first time he did, we were so proud at the progress he made, but mad (like normal parents would be) that he lied! On one hand, we wanted to high five him, but on the other, we had to punish him.
Just Monday night, he was telling us about Science class and telling us about this really cool thing the teacher needed a helper with. It was a long involved story that was convoluted as hell, but the thing that struck me was that the teacher picks someone who doesn't want to be the helper. Like if he needs someone brave and unafraid, instead of choosing from the hands that are waving wildly, he'll pick someone who looks afraid.
While I was impressed that my son figured this out (it only took a semester) I'm kind of bummed that he didn't figure out that the way to be picked is to feign a lack of interest. He's always the first one with his hand in the air. I asked him why he hadn't figured that out yet, and I could tell by the look on his face it was because it had never occurred to him. The sad thing is, that even now, armed with that information, he'll still be the first on with his hand in the air.
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quote:Also, they like to play with other kids, but they don't really play with them. They play next to them.
"Parallel play."
Kayla, your son has a great mom. You are pretty amazing, you know?
dpr, I can write again today, so I will write for you. *smile Yesterday my dominant hand's index finger looked like a red balloon, but the antibiotics helped, and the swelling is down. Whew!
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posted
I can't remember now if he played with me and his brother or not. I know he'd kick the ball down the hill towards me, but I'm not sure if he was kicking it to me or just in my direction.
I know he liked to play with other kids, but they had to watch him. When he was stressed out about moving, he, a three year old, beat up two four year olds. They were picking on him and kind of had it coming, but still.
I do remember he didn't listen when his mom told him not to do something unless she yelled. I bet he didn't know she was upset with him until she yelled.
Thanks for the great info, Kayla. I'll have to pass it on.
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posted
Kayla, I just wonder if you've read "The Curious Incident of the Dog in the Night-Time," by Mark Haddon. The central character is a boy with Asperger's syndrome (I don't know if that's similar to PDD/NOS but a lot of the symptoms sound similar) who is about the same age as your son is now. There's also a book written by a boy with Asperger's syndrome of about the same age called "Freaks, Geeks and Asperger's Syndrome" - the kid's first name is Luke but I can't remember his surname. A boy I knew at university was never diagnosed with any sort of problem but there were a lot of questions asked about whether he had some sort of autistic spectrum disorder, and that's what got me interested in reading about it - anyway I loved both of those books and wondered what you thought about them if you've read them. I think you're a fab parent, by the way.
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At this time there is a great deal of debate as to exactly where AS fits. It is presently described as an autism spectrum disorder and Uta Frith, in her book AUTISM AND ASPERGER'S SYNDROME, described AS individuals as "having a dash of Autism". Some professionals feel that AS is the same as High Functioning Autism, while others feel that it is better described as a Nonverbal Learning Disability. AS shares many of the characteristics of PDD-NOS (Pervasive Developmental Disorder; Not otherwise specified), HFA, and NLD and because it was virtually unknown until a few years ago, many individuals either received an incorrect diagnosis or remained undiagnosed. For example, it is not at all uncommon for a child who was initially diagnosed with ADD or ADHD be re-diagnosed with AS. In addition, some individuals who were originally diagnosed with HFA or PDD-NOS are now being given the AS diagnosis and many individuals have a dual diagnosis of Asperger Syndrome and High Functioning Autism.
If only he'd become fixated on something marketable! Unless Yu-Gi-Oh becomes something he can make a career out of, I'm not really sure what we're going to do.
posted
Wow, Kayla, what a lot of work you have put into advocating for your son. He is lucky he has you in his corner. I'm mentally filing the info; I work with pre-schoolers and see all kinds of traits.
PPD/NOS would not seem to fit Livvie- she plays very well with other kids, and her ear splitting shrieks have a "reason", (even if it's,"I can't get my shirt off by myself and I find shrieking easier than asking for help).
Sara- did I miss something? What happened to your finger? I thought you had a cold.
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Actually, I don't think he could have picked a worse one if he'd tried. Trust me, the irony of an agoraphobic having a child who really needs social training isn't lost on me. Posts: 9871 | Registered: Aug 2001
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posted
But you have the time and energy (and presence) to observe his interactions carefully and intuit what he needs, what he is thinking. It is so cool.
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