How to get the doctors to listen? New here, am wondering.

[vtheartmama]

Hello all, so here is my story, abbreviated version of course!

Part I

I have a 3.5 year old girl who has always been healthy and we thought maybe had a few sensory issues that would get better with time. When she was 3 she was diagnosed with progressive infantile scoliosis, the only potentially fatal form of pediatric orthopeadic conditions. She now has anxiety from her treatment, and her sensory issues have not gotten any better. She also has an IEP at school because of communication problems, like not answering questions correctly, repeating a question or answer multiple times, and changing topic's frequently. These are some of the things she flips out about:

Tight clothes
"slippery" clothes (her words)
"squishy" mud (again, her words)
dirty clothes
cracks in food (like cheese or bananas)
has to have 3 of everything (3 slices, 3 crackers etc.)
things HAVE to match (socks, mittens etc.)
will not eat hot/warm food
has to have certain amount of food in bowl (no spaces)
blankets have to go on in same order every night
flips out when her TV show stops
Very sensitive to sound/volume

These are just the things I can think of off the top of my head. She is a very sweet, polite and loving girl. She loves shapes, colors and abstract things and is very smart. She had to see a neurologist in order to get her Brain MRI for her scoliosis, and I asked the neuro about her repetitive questions, and she even did it in front of the neuro and all the neuro said was "she justs wants to make sure". I don't buy it and her GP says there's nothing really to be done about sensory issues. They don't harm her really it's just frustrating as a parent because everything has to be "perfect" or she flips out. Should I seek out other opinions?

Part II

I have a 2.5 year old son. He was born with 3 congenital heart defects and had open heart surgery at 3 days old, he is currently doing well with just a few minor residuals from surgery. He sees a Physchologist at a Neurodevelopmental clinic every year for follow up because of being on the heart/lung bypass machine. He has always been somewhat of a challenge and at his last appointment. she diagnosed him with a "Non specific emotional disorder".. He is a difficult child to disipline, he laughs when put in time out, intentionally does bad things to get attention (he gets PLENTY of good attention), I have never seen a boy throw such a tantrum if you just as much say "no" to him. We have to constantly tell him not to do the same things over and over, like draw on the walls, throw toys (across the room), or not run away in public. He does most things hoping to get some kind of reaction..and we have tried time outs, telling him no, taking away his toys, and ignoring him. His Occupational Therapist (OT) said he had "tactile defensivness" and gave him a brush thing, which he likes, and his sister loves. Is he just going through the terrible two's? I have nothing to compare it with because my daughter always listened well.

My kids see two different doctors because my daughter sees a GP and when my son was born they said he had to see a pediatrician, and neither of them are very receptive.

Thanks for any advice!

 

[vtheartmama]

To finish off the last post (had to distract the kiddos), along with his temper my son also has this thing where he likes to pinch and roll skin between his fingers. He still nurses and ever since a baby I have to constantly pull his hands away. If he gets angry he will smack his face over and over or smack his hands together. He is very social almost too social he will go up to a baby he doesn't know and pat them on the head, and he is very in your face I am not paying attention he will climb on me and put his face right in front of mine until I take him off or find something else for him to do..this is probably seperate but he also walks around with his fingers crossed in different patterns, sometimes it's his index and middle finger, other times it's his pinky and ring finger. In any case I suppose he is just a hyper aggressive boy but I thought it might not hurt to hear if anyone else is dealing with this and how they changed their discipline methods to actually work..; )


Me: Left the working mom field to become a work at home mom (thank god I would have been fired for all the doctors appointments!)
Daughter: Progressive Infantile Scoliosis Double S Curve 46/35 21 degrees rotation in 3rd body cast hoping to brace for summer
Son: Transposition of the Great Arteries, Atrial Septal Defect, Ventricular Septal Defect, OHS 3 days old Boston Childrens

 

[HaoZi]

Have you had them tested for autism? I'm seeing what I would consider a lot of red flags for it, esp your daughter.

 

[vtheartmama]

I haven't, although I have sometimes wondered about my daughter..she plays well with her cousins and brother, but she won't play with boys at school "because they are boys, I like girls". She will only go in the McDonald's playplace if there are no boys there or if there are no other children. I have no idea where this came from, maybe she got pushed and hasn't forgotten it. She is in EEE but the school said she wasn't autistic, although my sister mentioned it after she took her for the day and had a really difficult time with her...I guess I should get ready for yet another fight, it's been an uphill battle to get my kids the proper medical care they need. Thanks for posting.. : )

 

[TeDo]

After reading both your posts, it sounds like you have your hands full. The only thing I would suggest is to have both children evaluated by a Neuropsychologist. They evaluate all areas of functioning so you get a better idea of the underlying causes of some of the behavior. Once you know WHAT is causing it, you can figure out HOW to deal with it effectively. I would also look into a pediatric psychiatrist for additional help. In the meantime, I recommend the book The Explosive Child by Ross Greene. Although the ideas presented in there are great for tweens on up, the basics can be adapted for younger children.

I am glad you found us. You might also consider reading some of the Early Childhood ARCHIVES on the site for more help. You might find other things to help.

Welcome to the "family". Glad you found us but so sorry you had to.

 

[nvts]

Hi! Welcome to the crowd - I'm a moderator on the Early Childhood Forum and I'm attempting to put both of your threads together on one (easier to read ).

Beth

 

[vtheartmama]

Hi! So sorry I was a bit distracted and had to rush the first post but wanted to add the info from the second, I can copy and paste into a new post if it's easier?

 

[smallworld]

Your kids might be too young to be evaluated by a neuropsychologist. You might do better to seek out an evaluation with a developmental pediatrician.

Welcome! I'm glad you found us.

 

[nvts]

Hi! So sorry I was a bit distracted and had to rush the first post but wanted to add the info from the second, I can copy and paste into a new post if it's easier?

Oh, don't worry about it! I'm just trying something that I haven't done before - no biggee. I just think you'll get more replies if they're grouped together.

For what it's worth (and I know that I'm thus far not coming off as the sharpest knife in the drawer!) I agree that a developmental pediatrician would be well worth your while. If your gut is telling you that something isn't right, you need to listen to it. Most of us have found that following our instincts does the most good.

As far as your daughter's issues go, I would seriously consider having an Occupational Therapist as well as a Speech Therapist work with the sensory stuff. My 2 year old is progressing really well with them - she's got pretty wicked oral defensiveness (she didn't come off formula AND only handled stage 2 baby food at the 1.5 year mark). It's late, but it had a lot to do with a forward facing gag reflex, hypersensitive tastebuds, and low muscle tone in her mouth and face.

I would recommend that you keep a list of ALL of the behaviors and "quirks" for both kids. This'll come in really handy when you talk to the doctor. Some regular pediatricians often blow off our concerns as "nervous mother syndrome" when in fact we have a reason to be watching out.

Welcome to the crowd - it's a great group of people that really care, have a lot of experience and enjoy one anothers company. Make sure you hop on the Watercooler - that's where we talk about non-child stuff. A lot of cameraderie there!

Beth

 

[nvts]

It worked! The threads are merged - well there ya go! It's true that you learn something new everyday (and it's only 11:37 pm!).

Beth

 

[vtheartmama]

Thanks everyone, I think I will look into getting additional consults for my daughter..the school did an Occupational Therapist (OT) evaluation for her, a whole 1 page that used 1 test, the Peabody one, and said she had above average motor skills but low average visual hand/eye coordination like lacing etc. The report was not very informative. I am not impressed with the EIS in my area, my son came out of P.T with problems his Neuropysch (the one that said he has a Non-specified emotional disorder) noted and requested he go back into P.T, but I never got a call back from the local program and decided if it got worse I would have to go non-local. So far it's stable. In addition, my daughters scoliosis was missed by her GP, the Ortho specialist I requested she see because I had concerns, and my son's P.T when I asked her to look at her. She was diagnosed a year to late for total correction. So anyways, my faith in the medical system is a little shaky. Reading other posts and I am begining to wonder about high functioning autism. She does not make eye contact when talking, if she does it is for a few seconds before she looks away..(I actually have this same problem just never really thought about it before, it's really hard for me to keep eye contact with people for some reason, it just seems too intense) .
Great idea to start keeping a list as I notice things..this way I can have something to refer to in front of the doctor instead of looking like a complete moron..I do want my kids to just be kids with-o labeling them with a bunch of stuff but I also want them to learn behaviors that will let them grow up and have a great life with-o feeling like a social outcasts...

 

[HaoZi]

There are a number of us here that know or suspect we are also Autism Spectrum Disorders (ASD) as well. I'm one of them. And yes, there is power in the eyes, I believe this. Window to the soul? Couldn't tell you. But there is a lot you can figure out by watching the eyes, little signs, from microexpressions to pupil dilation and contraction. I tend to either be fleeting with my contact or far too direct with it. Sometimes I'm too direct on purpose just to make the other person feel as uncomfortable as I am. I found that learning about what I could discern from someone's eyes helped me make eye contact with strangers more, because in a sense it wasn't as personal, more like a science experiment.

I remember when I went to NYC in my teen years that few people made much direct eye contact. It was like observing a mix of domestic and feral dogs that weren't too sure of each other. My relatives from there told me that NYers tend to feel that direct eye contact means that A) you're a tourist (and therefore a target), B) you're on drugs, C) you're insane, or D) some combination of the above. Being as my Mom had never lost her accent, I picked up on the accent totally after 3 days, so I didn't sound like a tourist and had fun the rest of my trip making everyone else on the public transit system uncomfortable. I only recall one person that kept eye contact with me, an older guy in a nice suit, and thinking he must be quite good at his job.

 

[halaluani]

I haven't, although I have sometimes wondered about my daughter..she plays well with her cousins and brother, but she won't play with boys at school "because they are boys, I like girls". She will only go in the McDonald's playplace if there are no boys there or if there are no other children. I have no idea where this came from, maybe she got pushed and hasn't forgotten it. She is in EEE but the school said she wasn't autistic, although my sister mentioned it after she took her for the day and had a really difficult time with her...I guess I should get ready for yet another fight, it's been an uphill battle to get my kids the proper medical care they need. Thanks for posting.. : )

in my opinion, someone could help her with this issue over time. I don't see any need to create a label and end up on drugs because of this. It appears to point to her being afraid of being picked on. She'll be fine. Millions of kids experience this kind of fear and live to tell about it with a little help.

Best wishes,
Halaluani

 

[nvts]

in my opinion, someone could help her with this issue over time. I don't see any need to create a label and end up on drugs because of this. It appears to point to her being afraid of being picked on. She'll be fine. Millions of kids experience this kind of fear and live to tell about it with a little help.

Best wishes,
Halaluani

Welcome to the forum Halaluani...truthfully, I don't think that Vtheartmama was looking for a total medication fix. I think that she's had just about enough of not having the proper or thorough diagnostics in place even though she's jumped through hoops to try to get them. Many of the children DO require medication in order to learn how to work within societal boundaries. While medication may not be right for all kids, there's no shame in having to persue that course of action should it be necessary.

Beth

 

[HaoZi]

The school can't do a diagnosis anyway. That's up to doctors who are experienced in this kind of thing. Autism Spectrum Disorders (ASD) by itself needs behavioral and other kinds of therapy.
I remember back in preschool there was a substitute teacher in one day who had a kid on the spectrum, I'm guessing Aspie or high-functioning, about the same age my kid was, maybe a little younger. He was VERY sensitive to smells, and when my kid picked up a smell on their way to library before her kid did (and a few other little signs that I don't recall now), it was suggested to me that I have her tested for autism. I'm looking at my kid, who has been speaking in full sentences since before she was 2, knew shapes, colors, counting to 10, by both written words and pictures before 18 months, could spell her name, etc etc etc, and saying "There's no way my kid has autism! I have a sensitive nose, too, she must have gotten it from me, it's part of being gifted." (supersensitive nervous system and tendencies for Sensory Integration Disorder (SID)) And while yes, it can be part of being gifted, I've also come to learn (and accept) that many off-beat traits of gifted are also associated with Asperger's, Pervasive Developmental Disorder (PDD)-not otherwise specified, etc etc etc. *flashback to "The King and I"* And many Aspies are gifted, which makes it harder to diagnosis in a lot of cases. So now I wonder how many gifted kids diagnosis'd with ADHD really have (or also have) Aspergers. In looking back, I'd say at least half of my gifted class had a good portion of Aspie traits.

 

[vtheartmama]

Halaluani...if that were her only issue I would be in total agreement with you, but she has others. Medication is not even in the forefront of my mind right now, getting her to see the appropriate medical proffesionals in the first place and getting a diagnosis, if and only if one is necessary. Beth is right on (thank you, Beth!) I have had enough experience with doctors to know when they have done a thorough exam and when they have just blown me off, and so far she has not had a proper evaluation. When I came across this site I posted because it has been in the back of my mind for awhile now about having her see someone but I thought presenting her "quirks" to experienced parents would give me a better idea if she actually has something going on and what it might be, (and therefore pursue a medical evaluation) or if she's just a little unique. There is also a family history..her grandfather has an undiagnosed personality disorder (we have no contact because he's paranoid, seriously, but will not seek help), her grandmother as depression, anxiety and stressed-induced siezures (the kind that land her in ICU) and her immediate cousin has sensory issues and does joint compressions and brushing and is homeschooled.. I guess I shouldn't be too worried about labeling, she kind of already has one, it's called PIS, she will be dealing with it the rest of her childhood until she stops growing-it's hard to miss a body cast. She is very smart, knew all her shapes, colors, numbers way ahead of time..was 2 years old and starting making abstract shapes with her hands like triangles and circles and ovals and naming them as she made them and drawing whole people (she has actually regressed now that she's in EEE to just drawing lines, I have to ask her to make me a person).

Sorry I got a little off topic..I don't think she does anything that she needs medications for, but I feel like some behavioral therapies and Occupational Therapist (OT) might help her a little...in any case I made an appointment down at Boston Children's (both her and my son go there for treatment and follow up) to see a child pyschologist (who was recommended by my sons' neuropysch, because she only does cardiac kids) for february 28th..(there is a developmental pediatrician 1.5 hs north but it's easier to keep all there treatments in the same place) so I'll keep you guys posted as to how that goes..not sure what they are going to learn in 3 hours but we'll see : )

Thanks for all the input!

 

[HaoZi]

She's regressing... that rings a bell on a more rare form. Let me see if I can find what I'm thinking of.

Start here: http://www.childbrain.com/pddq4.shtml

I know there's another one I've seen in mention with the physical symptoms you've mentioned, not sure if I can find that again or not.

 

[vtheartmama]

Thanks for the link, HaoZi, it was really helpful..I did the Pervasive Developmental Disorder (PDD) test (which I know is not a diagnosis but just a guide) and they have Mild, Moderate and Severe, my daughter was 104 and my son was 126,both in the Moderate Pervasive Developmental Disorder (PDD) range. I guess we'll be delving into this world a little bit more to find out what's really going on, it seems so many diagnoses overlap with eachother how do the professionals keep them all straight? *l*

 

[HaoZi]

They don't always. And kids grow and change, diagnosis's can change, too (some of them). The complexity of it all is why you see neuropsychologist testing referred to so often, though that shouldn't be your only specialist.