Where to start to figure out what is going on with my dd? - long

[Ameena]

This will be long - I apologize. But I am hoping the wonderful moms of the HIVE can help me figure out what is going on with my dd & where to get help.

 

DD has always been a bit odd, but never quite odd enough to make it blatant - KWIM? When she was a baby, she was pretty normal - very bright, interactive, loving, etc. Had multiple food allergies & was delayed in eating solids. A bit ahead vocally, and instead of a first word she had a first sentence {I Love You - which makes sense as she was raised in a very loving home by myself & grandparents}. Never really crawled - she just started walking. Her only real quirk was bouncing - she loved to bounce. As in standing in her jumperoo / crib / anything she could hold herself with & bounce for HOURS. It was her way of calming herself, putting herself to sleep, etc. And Music - she had near perfect pitch & a huge memory for anything set to music. We noticed around age 1.5/2 that she had issues with making eye contact with people - she looks at the face but not the eyes if that makes sense. But it wasn't a big issue, and her pedi at the time said she would grow out of it{she didn't}. About that time she got really in to trains & anything with wheels - she liked to sit & spin the wheels on her trike instead of riding it. Still not a huge issue. She was resistant to potty training, but I said okay maybe she is a bit young. About age 3/4, stuff started popping up. Hand flapping when stressed, can't stand loud sounds / crowds / strangers, and started having meltdowns a lot. Could quote movies / books exactly & did so often. I said okay - still odd, but the pedi said yet again perfectly normal she'll grow out of it. Still very bright, very advanced for her age. Still having issues with potty training. About age 5-ish was when it was at it's worst - she didn't play well with other kids {I chalked it up to not having a lot of play experience with kids} & mostly played alongside others. Hid behind me any time there was a stranger nearby, wouldn't speak to strangers, etc. Still hand flapping when stressed, though I explained it wasn't proper behavior to do so & she would try to stop herself. About this time at a couple of health expos folks started to ask if she had ASD or something similar. We switched pedis, but same story "perfectly normal she'll grow out of it". Still having issues with potty training, though if left bare she would manage #1. Around age 6 though, she started to improve. Less meltdowns, better play skills, much less hand flapping. Now she's almost 8. Behaves 90% normally unless she is tired / stressed / sick, then you are at risk for a melt down. Still having issues with potty training - again if left bare at home, she can manage most of the time but has frequent accidents if distracted / playing. She is scared of automatic flush toilets, and hates the flushing sound so that may be making it worse. On a really good day she will use a potty away from home, on a bad day even suggest it & she locks up. She swears she doesn't feel it when she needs to go a lot, especially with #2. Can behave well especially if promised a "carrot" - i.e. if you can behave like a good girl in the XYZ office I will take you to the Disney store afterwards to look. In other ways very mature for her age - sometimes she behaves like a little adult. Has issues with things involving fine motor skills / dexterity - tying shoes, buttons, etc. Only recently began partially dressing self, and only with direct instruction step by step with lots of repetition. Doesn't understand the classroom dynamic & has issues behaving properly & paying attention in groups / storytime / etc. Has a lot of what I would call sensory issues - rubbing inappropriate things on the walls like finger paint, issues with tags / clothing, issues with loud sounds, etc. I took her in to our new pedi {Insurance changed yet again} & brought up all this - the pedi's response was "well I used to be a teacher & I don't see anything wrong with her". Pedi didn't even address the potty training issues at all. DD was having a good day that day - she was well rested, it hadn't taken all day in the waiting room for a change, and the nurse had given her a sticker after weighing {dd doesn't like standing on scales - never has}.

 

I don't know where to start. My gut is saying there is something going on here. Especially with the delayed potty training, despite MANY efforts. I'm at my wits end on that, and going bankrupt buying goodnites for her to deal with it. DD is beginning to be self-conscious about it, and has asked for help to have less accidents. But I don't know how to figure it out. FWIW, here the school district provides no testing / services to homeschoolers. We have medicaid which will cover any thing done in the private sector as long as they accept it, but only if I have a referral from the pedi I think. Not sure if we can bypass it and get an eval without that referral.

[Marie131]

I think you are right to be looking into this.  She sounds very similar to my son who just turned 9 whom we are seeking an ASD dx for.  I have a post in this section entitled "what could this be", you can check it out to see what our journey has been and see if you see any similarities in your dd.

 

I would encourage you to sit down and write out all your concerns.  I made a document that I brought to my ped w/ all my son's social, emotional, educational and physical concerns.  I also documented his prenatal and early developmental history and brought it all in to my ped.  She took it very seriously.  I think if you go in prepared, w/ your concerns all on paper they understand that your concerns are serious.  Parents know their kids.  They know when something is up.  If you think something is different about your child, well then you are probably right.

 

Have you read the Tony Atwood book?

[Jennifer-72]

Like Marie mentioned I would start with your doctor. You may want to see if she can refer you to someone who is more experienced in dx girls with ASD. Teasing out a dx expecially with high functioning children can be complex and is even more so with girls. I haven't read it, but I have heard good things about the book Aspergirls.

[kbutton]

I think you should talk to the pediatrician again. If you don't get anywhere with your ped, change peds. Some will give referrals even if they don't agree with you.

 

We have one of those 90% normal kids too. :-) He's twice exceptional--both gifted and Aspie. It's

[OneStepAtATime]

I agree with PPs, go back to the pediatrician but also document everything.  Make it one page so it is easy for the ped to skim through but detail issues, maybe a check mark next to something every time it happens so there is a record of consistent behavior challenges.  Make it clear that your child is high functioning but you very much believe that there is something going on and you want them to look into it further or refer you to a specialist.  Press regarding the potty training issue.  Be polite but firm.

 

:grouphug:  :grouphug:  :grouphug:

[Berta]

Get a referral to a neurologist. I went through the same thing with my son and it took until seeing a neurologist to get a dx of high functioning autism. He was seven years old and the neuro said he had a classic case of autism, which the pediatrician missed. 

[Lecka]

Pester the pediatrician for referrals!  In a nice way and everything, but when they say "not needed" try to respond with "here are the reasons a referral is necessary."  But be a little pushy, too!

 

Alternately -- possibly ask around if there is a pediatrician on your list who sees a lot of spectrum kids or who is known for being easier about giving more referrals.  

 

I think it sounds like you have got the information you need for a referral.  

 

Perhaps you could ask the pediatrician to give you the developmental screening that he/she would use in making a referral for ASD diagnosis.  That is what happened with us -- they had a form.

 

Where we went (and this was for diagnosis with ASD) the place required us to be referred from our pediatrician, they did not take kids without a referral.  So -- we needed it for the appointment, too, not just for insurance. Though I think our area (we are in Kansas) is not the same as other areas in this way.  

 

I think there are a lot of stereotypes about ASD, and some people think "well I am not seeing this stereotype" and so they rule it out.  But it is not true.  That happened to us also (my son exited from EI speech therapy, the speech therapist just didn't see it, later diagnosed with classic autism also).  

 

For us -- to some extent, having the diagnosis opened doors for services.  

 

 

[Marie131]

There is a screening tool that I brought into my ped, she found it very helpful.  For some reason, I can't copy and paste it but if you google "Sohn-Grayson online" it should come up.

[Lecka]

Oh, a friend's son was diagnosed last year at age *9.*  He went to pre-school and public school.  So ----- no, teachers do not always know.  

 

I think it can be for good reasons, not wanting to see a problem, but it is not helpful if it keeps kids from having help.  

[wapiti]

I would want to investigate possible medical angles to the potty training issue, especially since it sounds like it's just not within her control.  (is there constipation?  are there any unusual skin/hair marks at the base of the spine or in the gluteal cleft, e.g., sacral dimple?)

 

In addition to the possible ASD eval, I'd want to get an eval for SPD with an OT with an eye toward treatment.

 

 

[Ameena]

I would want to investigate possible medical angles to the potty training issue, especially since it sounds like it's just not within her control.  (is there constipation?  are there any unusual skin/hair marks at the base of the spine or in the gluteal cleft, e.g., sacral dimple?)

 

In addition to the possible ASD eval, I'd want to get an eval for SPD with an OT with an eye toward treatment.

 

She does have a wide, shallow dimple just above the base of her spine, but the coloration is normal. I've showed it to all her pedi's with assurances that it is normal. I know she complains / crys a lot more if she happens to get hit / bump that area, so it seems to be more tender than the rest of her spine. My father had the same thing, so it must run in the family.

 

No constipation - if anything I would say she doesn't compact if that makes sense. When she goes it's soft, but tends to be a LOT - kinda like geeze something that big came out of that little girl

 

 

Today was a bad day - 5 accidents and it's only 8pm. And 2 meltdowns.

[wapiti]

She does have a wide, shallow dimple just above the base of her spine, but the coloration is normal. I've showed it to all her pedi's with assurances that it is normal. I know she complains / crys a lot more if she happens to get hit / bump that area, so it seems to be more tender than the rest of her spine. My father had the same thing, so it must run in the family.

 

No constipation - if anything I would say she doesn't compact if that makes sense. When she goes it's soft, but tends to be a LOT - kinda like geeze something that big came out of that little girl

 

 

Today was a bad day - 5 accidents and it's only 8pm. And 2 meltdowns.

 

So sorry about your rough day.  IMO the potty training issues need to be addressed from a medical perspective as there are so many possibilities.

 

Hmm... I'm not sure what the rule of thumb is on a "normal" sacral dimple when it's combined with other symptoms (potty problems).  My ds had an unusual skin marker that the (young-ish) ped didn't know about.  When I asked her about it in light of some potty issues, she had us in the next day to take a look herself, and ended up ordering the MRI.  (Then again, the "old school" neurosurgeon said he wouldn't have ordered the MRI just by looking at it.  So apparently, the "new" way it is being taught to docs is different from the old way.  Neurosurgeon's perspective on whether to order the MRI fortunately didn't matter, because ds *did actually* have a tethered cord due to a filum lipoma.  It was surgically released six years ago, though we are still dealing with addressing issues.  The trouble with tethered cord is that nerve damage can be permanent.)

 

Just throwing this out there, but randomly, one thing that helps my ds with bedwetting is mag citrate (Natural Calm), though I'm not sure what happens when there is not constipation in the mix (too much can cause excessive softness).  My other ds (who doesn't deal with constipation) takes a small amount too for unrelated reasons, with no apparent difficulty.

[Ameena]

So sorry about your rough day.  IMO the potty training issues need to be addressed from a medical perspective as there are so many possibilities.

 

Hmm... I'm not sure what the rule of thumb is on a "normal" sacral dimple when it's combined with other symptoms (potty problems).  My ds had an unusual skin marker that the (young-ish) ped didn't know about.  When I asked her about it in light of some potty issues, she had us in the next day to take a look herself, and ended up ordering the MRI.  (Then again, the "old school" neurosurgeon said he wouldn't have ordered the MRI just by looking at it.  So apparently, the "new" way it is being taught to docs is different from the old way.  Neurosurgeon's perspective on whether to order the MRI fortunately didn't matter, because ds *did actually* have a tethered cord due to a filum lipoma.  It was surgically released six years ago, though we are still dealing with addressing issues.  The trouble with tethered cord is that nerve damage can be permanent.)

 

Just throwing this out there, but randomly, one thing that helps my ds with bedwetting is mag citrate (Natural Calm), though I'm not sure what happens when there is not constipation in the mix (too much can cause excessive softness).  My other ds (who doesn't deal with constipation) takes a small amount too for unrelated reasons, with no apparent difficulty.

 

We may try the Mag. Citrate. Maybe it will help. Curiously dd CAN hold #1 in her sleep with about a 90% success rate, if I have her go right before bed & she doesn't drink to much before bed. As long as I get her right up & to the potty, she normally can make it. But if I let her wake slowly on her own, she will go in the pullup before she is fully awake.

 

 

There is a screening tool that I brought into my ped, she found it very helpful.  For some reason, I can't copy and paste it but if you google "Sohn-Grayson online" it should come up.

 

Thank you for posting this. I just did it for dd & she scored a 168, which is Moderate to High. And it probably should have been higher - there were several things on the list that she used to do but doesn't do anymore.

[geodob]

The tenderness at the base of her spine, could be worth looking into?

With the Sacral vertebrae at the base of the spine.

Nerves from S2-S4,  are involved with control of the muscles related to bowel and bladder control.

 

Which raises a question about the tenderness in this area of her spine?

[Lecka]

This is something I don't know much about, but I have heard that kids can have a mass of poop that is stuck, and then diarrea-like poop makes it around the solid mass.  It seems like they have diarrea, but they cannot control their bowels for it. 

 

I think this is when kids go to a gastroenterologist and get an X-ray.  

 

I don't know what underlying reasons are that cause it to happen in the first place, I think sometimes it can just happen, sometimes there are underlying reasons.  

 

There was a thread about this not long ago.  There is a book that talks about this, that came out not long ago.  

 

I think it is something that you might rule out, or might be a problem.  

 

I mainly know one person with this experience, and they thought her son was behaving badly but really it was more of a physical problem.  He still has a hard time with the bathroom, though.  

 

I am also not sure if this is the same as encoporesis, I have known of kids to have that too, I do not know much about it, though.

 

But it could be something like that, possibly.  

[Lecka]

(I personally have had fecal impaction, though I did not have diarrea with it.  After I had a C-section I took pain medicine that slowed my bowels and I didn't take Milk of Magnesia like I guess I should have.  I went to the doctor and was prescribed an enema.  Fortunately one enema was all I needed.  But geez, not the funnest time.)  

[wapiti]

FWIW, the more I think about it, the more I know that if it were me, I'd be stewing about the tender spine thing combined with the *significant* potty symptoms.  (I just went through something recently with my dd that resulted in a normal MRI fortunately, but thanks to what I went through with ds, I was sorta losing my mind until I actually talked with someone in the neurosurgery office to confirm a normal MRI.)  Unfortunately, MRI is pretty much the only way to rule out a spinal problem of this sort, AFAIK.

[Tiramisu]

She does have a wide, shallow dimple just above the base of her spine, but the coloration is normal. I've showed it to all her pedi's with assurances that it is normal. I know she complains / crys a lot more if she happens to get hit / bump that area, so it seems to be more tender than the rest of her spine. My father had the same thing, so it must run in the family.

 

No constipation - if anything I would say she doesn't compact if that makes sense. When she goes it's soft, but tends to be a LOT - kinda like geeze something that big came out of that little girl

 

 

Today was a bad day - 5 accidents and it's only 8pm. And 2 meltdowns.

 

 

So sorry about your rough day.  IMO the potty training issues need to be addressed from a medical perspective as there are so many possibilities.

 

Hmm... I'm not sure what the rule of thumb is on a "normal" sacral dimple when it's combined with other symptoms (potty problems).  My ds had an unusual skin marker that the (young-ish) ped didn't know about.  When I asked her about it in light of some potty issues, she had us in the next day to take a look herself, and ended up ordering the MRI.  (Then again, the "old school" neurosurgeon said he wouldn't have ordered the MRI just by looking at it.  So apparently, the "new" way it is being taught to docs is different from the old way.  Neurosurgeon's perspective on whether to order the MRI fortunately didn't matter, because ds *did actually* have a tethered cord due to a filum lipoma.  It was surgically released six years ago, though we are still dealing with addressing issues.  The trouble with tethered cord is that nerve damage can be permanent.)

 

Just throwing this out there, but randomly, one thing that helps my ds with bedwetting is mag citrate (Natural Calm), though I'm not sure what happens when there is not constipation in the mix (too much can cause excessive softness).  My other ds (who doesn't deal with constipation) takes a small amount too for unrelated reasons, with no apparent difficulty.

 

 

The tenderness at the base of her spine, could be worth looking into?

With the Sacral vertebrae at the base of the spine.

Nerves from S2-S4,  are involved with control of the muscles related to bowel and bladder control.

 

Which raises a question about the tenderness in this area of her spine?

 

 

FWIW, the more I think about it, the more I know that if it were me, I'd be stewing about the tender spine thing combined with the *significant* potty symptoms.  (I just went through something recently with my dd that resulted in a normal MRI fortunately, but thanks to what I went through with ds, I was sorta losing my mind until I actually talked with someone in the neurosurgery office to confirm a normal MRI.)  Unfortunately, MRI is pretty much the only way to rule out a spinal problem of this sort, AFAIK.

 

I'm multiquoting here to emphasize I would not ignore the sacral dimple if there are any back or leg symptoms (pain or other sensations) or bowel or bladder problems. My had a very mild one that no one really noticed. I really thought it was part of normal anatomy because it blended in so well. It was only when something went wrong that the significance of it became clear, though this is all in hindsight.

 

We had a different problem that wapiti's, a spine vs. spinal cord problem, so it showed up with an xray. An MRI done after the xray showed the soft tissue effects. She did need surgery and it was very successful.

 

We were warned as we were waiting for surgery that if any bowel or bladder issues developed, we needed to contact the specialist immediately. So, in my mind, if you have the dimple, tenderness and bowel issues, you can't ignore it. FWIW, our pediatrician was clueless, too.

 

I have another dd with a mongolian spot at the base of her spine. I'm not sure if she has a dimple, actually. But because of the spot (we are caucasian and have no one else in the family with one), there is a chance this dd could have an underlying issue, too. But she never has had symptoms. If anything were to come up, like leg or back pain or a change in her posture or way of walking, I would make sure she could see a specialist right away. Having gone through this once, it's on my radar.

[srs]

I believe the book mentioned is called It's No Accident. It's a good read. Did not help us much, because our pediatrician missed cerebral palsy for five years. So yes, they can and do miss lots of things.

 

A large volume of soft poop can be a sign of constipation. An abdominal xray would give you a lot more info.

 

Have you tried timed voiding? Set a watch or timer, and have her go pee every two or three hours. We did this for years with my daughter with CP. She has just recently at age seven not needed it so much.

 

We got a referral to developmental pediatrics. It was a long process, but after seven years our toileting problems are well managed. Feel free to PM if you would like details.

[mamatohaleybug]

I know this thread is older now but I just wondered if you had an update. Have you had any luck in getting a doctor to take these issues seriously? If not, I would absolutely keep pushing.

[OneStepAtATime]

Also hoping you have found a path to some answers.  How are you and your dc doing OP?