Discouraged. This feels impossible :(

[Faithful_Steward]

Deleting because I have a lot of irl acquaintances who frequent these forums. Thank you SO MUCH for your kindness.

 

[Faithful_Steward]

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[PeterPan]

Wow, deep breath.  I so identify with you there.  My ds still wets, and he'll be 7 in the fall.  Pretty much the same labels (adding a few more actually).  I think the reason for his continued bedwetting is a retained spinal gallant reflex.  I'm not sure that's the case for everyone's but it's clearly behind at least part of it, as it is retained and does cause that.  

 

You mentioned military.  Do you have to jump through these hoops on referrals?  That's the frustrating part.  In your shoes, I'd be wanting an OT eval pronto and a full neuropsych eval at a clinic that can discriminate ADHD and ASD.  Whatever it takes to get that, that's what you want.  

 

And no, no one ever wants these labels.  But if the evals can get you some practical HELP, that would be good.  I know what you're talking about with the across the parking lot and the looks.  I'm reading The Explosive Child right now, and it's good, very practical.

 

Don't worry about easy on the eyes.  Add ice cream scoops, make it all go blurry and slurry...  :)

[PeterPan]

I'll come back and talk about the sibling thing.  I don't think sending him away necessarily solves anything (unless you think it actually is an improvement, which means an IEP, which takes 4-6 months to make happen and private evals to drive the ps evals and having the private evals completed so you actually know what kind of school situation you want).  I think you have to acknowledge their frustrations and get some help.  If you can't find a good situation for him, send them.  Kwim?  Or get help in the home.  Or physically get him out of the home more.  My dd is old enough, I can leave her with work and take ds to classes during the day.  We just leave, so she gets space to herself.  It's definitely an issue.  We also have mandatory quiet time in his room to give her more space.  And a separate floors policy.  (If I'm working here, you must be on the opposite floor.)  And we gave her a private office so she can get away from him.

[PeterPan]

Behavioralist.  You can do a counselor, but getting RDI or ABA or a behavioralist who can give you ways to make change and give him social skills instruction would be powerful.

 

Does your state have a disability program?  Some states now have disability scholarships for those who withdraw from the ps and give up their FAPE.  I'm not sure how many do, but definitely some do.  Ours does, and I think somebody said NC, maybe others.  Might give you more options.  Then you'd be looking for providers within the state system.

 

Just my tip of the day, but I'm all about calling people.  I call people, talk, learn what I can.  You always learn something and it costs you nothing.  

[Faithful_Steward]

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[Targhee]

I don't know for sure if it is connected but my DS with ADHD had bed wetting issues until 8 years old.

 

Now, military health care is something I can relate to and talk about. If you moved to a new Tricare region you may have a completely different health care company running your Tricare (with some policy differences). If you are at a hospital (Mikitary Treatment Facility) that's at least better than being assigned to a clinic in some ways - all your specialists are right there. However, you may have more success going on the civilian Tricare program to get access to those specialists.

 

My husband is an army doc - don't knock those military docs, they have some real dynamite physicians. That being said, the whole system is a frustrating mess - I've waited more than a month for a regular appointment, had my doc changed multiple times during pregnancies (and never once been delivered by my doc), had to jump through hoops for simple things, waited 6 months to get into OT, got approved for VT and later unapproved, never get to see my PCM (except for one time when I had a complete jerk - civilian - who claimed things in his notes which were not a part of our encounter - sometimes it helps that my DH can access my records)... Military health care sucks from a logistical point of view and I'm sorry for that.

 

Really I see two options: 1) public school so they will do screening OR 2) jump through the hoops with your doc. Since you're at a hospital there's likely a developmental pediatrician and a ped psych, both of whom you can request help from after your phone screening and family medicine appointment.

 

I know it is hard to handle a move, kids with needs (that you aren't really sure what they are), and a flawed healthcare system. You can do it, Mom!!! Best wishes!

[Tanaqui]

PS... can bedwetting in a 5 y/o be related to ADHD?

 

20% of all 5 year olds wet the bed, and 10% of all 6 year olds do. Each year thereafter, the percentage of chronic bedwetters declines, although there is a small percentage of people - mostly boys - who never do achieve nighttime dryness and continue to have periodic bedwetting through adolescence and adulthood.

 

Google suggests that ADHD is correlated with bedwetting. However, it also suggests that most parents of bedwetters do not seek medical help. Without looking at their work (which gee, no, I have better things to do), I think it may be possible that people who are already speaking to doctors about conditions such as ADHD may be more likely to talk about other issues as well. (Or there may be a valid connection between the two. Correlation may not imply causation, but it does waggle its eyebrows suggestively and gesture furtively while mouthing 'look over there'.)

 

[texasmama]

:grouphug:  :grouphug:  :grouphug: 

 

I had two bedwetters at 5, neither of whom had ADHD.  

 

I think it would benefit you to go to a counselor alone for support to unload all of this on a supportive, caring person.  That person might also have some suggestions for helpful resources, but at the least, you have gotten some support.  That is a lot to be dealing with, mama.

[PeterPan]

Well the trick, if you put him into the ps, is to go ahead and make your formal written request for evals for an IEP IMMEDIATELY.  Otherwise, if you just let them do it, they're going to have the teachers observe and may not start the process until 2nd semester.  As the parent, you have the right to make a written request immediately.  Just go in with documentation into that initially meeting so you can demonstrate the need for the evals.  

 

By doing that, they'll get the IEP done, and he'll get OT.  Won't be a ton, but he'll start getting it.  And they'll make changes in the classroom.  I was actually surprised at how much our ps would have done for ds if he were going there.  I have his IEP, and it's extensive.  None of it is technically as much as he needs, but the ps is not there to give you cadillac/premium service.  They're going to give you just enough to meet their federal obligation to eliminate barriers to learning.  In my ds' case, all his learning disabilities would be serviced (obviously), and then for behavior stuff they had weekly direct OT, weekly speech therapy, social stories, classroom modifications, the OT consulting with the teacher, picture schedules, on and on.  It was a LOT.  

 

I found the IEP process fascinating even though we're not going to the ps.  They just saw so much more in my ds of potential, things they could make happen with structure.  And honestly he IS better with herd effect.  Now he also gets worn out and I think the novelty would wear off.  But I'm agreeing it's not all bad.  I was really kind of swizzled there for a while, like wow look at all the things they would do.  In our case it wasn't a good compromise because he has significant learning disabilities on top of being gifted, a mix they couldn't service adequately (to my taste).  Like they could offer him one hour of tutoring a week in reading and I do 4-5 at home.  And that's times 3 learning disabilities.  But for the actual behavioral stuff, it was definitely an interesting process.  A LOT of that behavioral stuff gets handled by the OT, because they work on regulation, sensory, and just getting them to a place where they can function.  When my ds started OT, his behavior got more manageable within a month.  It's another thing to think about really, like what would happen if you just started getting some interventions.  With my ds the OT could get just enough change within a month that it put him into the more manageable category, where you're like wow we could deal with this...  

[Faithful_Steward]

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[Faithful_Steward]

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[OneStepAtATime]

Huge, huge hugs.  Goodness there is so much on your plate.  I wish I had some good suggestions. I don't, but I just had to post something in support.  I am so sorry that you and your family are going through so much.   :grouphug:  :grouphug:  :grouphug:

[Tanaqui]

Thanks! Yes, I should have googled first. It makes sense that it may be connected for my son. The child has never napped, even as a baby, so he sleeps hard at night. The doctor prescribed him something that I didn't have a chance to pick up or research, so wondering if there is a correlation was on my mind.

 

That connection makes sense to me as well. As an autistic individual (hey, this is relevant, hold on) I'm careful, though, about spurious correlations and I'll tell you why: Every day in autistic fora across the internet, somebody posts something along the lines of "Is anybody else faceblind/gay/lefthanded/atheist/really bad with directions/smart/blue-eyed/super sensitive to tags?" and they get a bajillion answers saying "Yup, sure am!"

 

Then they conclude that there's a connection between autism and whatever-it-is. And sometimes there is a real connection. Autistics are more likely to be faceblind than NTs. We are more prone to sensory sensitivities. Aaaaaand sometimes there isn't, but because of the way the question was phrased, it's hardly surprising you got a lot of "yes" responses. So now that I've been doing the autistic awareness thing for half my life, I try to be a little more chary with my "yes-a-connection" replies, which is why I carefully googled that one.

 

And no need to apologize for google. If I didn't passive-aggressively link to let me google that for you, you can assume that I loved doing it. (Actually, I adore lmgtfy, and sometimes use that instead of google. I like watching the animation. Don't judge me.)

 

[Tanaqui]

Oh, and I hope things get better for you! *hugs*

[Faithful_Steward]

OhElizabeth: Wow. I'm going to make some calls.

[Paige]

We're going through a Tricare/PCS nightmare as well. My DD had surgery before we moved, everything was approved, she was due to start PT by June 15th. So far, we still haven't been able to get her into PT because of the red tape of a PCS! I filed a grievance because they should know that people are getting hurt because of their inability to coordinate care when people PCS. Please file a grievance too- maybe if enough people complain they will listen. 

 

My best advice is to talk to a patient advocate or benefits liaison. Those people can often get things moving when the system says you can't. I don't think you have to agree to a 5 month wait to see a doctor unless there's nobody on post or in the civilian network who can see you sooner. I'm pretty sure the access to care says you have a right to specialty care within 4 weeks.I think, but you'd need to work with an advocate, that you have a right to see a non-participating provider if no participating providers can see you within 4 weeks. If it's just that everyone is booked (MTF, network and non-network providers), I don't know what to do- maybe call a civilian provider and ask to go on the cancellation list. I've had good luck with cancellation lists. 

 

If you just want a prescription for PT or OT can't your PCM write that based on your previous evaluations? We just told our PCM that we had a prescription for PT and she re-wrote it for us. The PCM is not qualified in any way to manage my daughter's PT, but the fact that it was ordered by someone who is qualified means that she can put it in the system for us at the new duty station without sending her to another orthopedic surgeon first. 

 

 

You have the right to a 2nd opinion, so if you don't like your new PCM's stance on your younger son's issues, you can see somebody else. You don't have to have your son's ADD managed by the PCM and can definitely get approval to see a psychiatrist. If the PCM won't refer you out, get a 2nd opinion, and if they still won't, call a patient advocate. You could also talk to the EFMP and see if they can help. I've heard they can provide some waivers for certain rules although they weren't helpful for us this time. 

 

 

:grouphug:  Moving is really hard! 

 

 

[Guest]

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Edited June 22, 2016 by Guest

[Targhee]

I think one trouble with OT and the like is that in many areas there are months long wait lists whether through MTF or civilian. We checked into civilian clinics and hospitals in a 50 mile radius and the shortest wait list was about 3 months.

[Beaniemom]

Double check me but IME you can self refer for mental health, let the mental health professional decide what evals are needed and they submit for approval to Tricare. This might open at least one avenue for you. We deal with Tricare as well and I am dreading that part of our upcoming move.

[Faithful_Steward]

We're going through a Tricare/PCS nightmare as well. My DD had surgery before we moved, everything was approved, she was due to start PT by June 15th. So far, we still haven't been able to get her into PT because of the red tape of a PCS! I filed a grievance because they should know that people are getting hurt because of their inability to coordinate care when people PCS. Please file a grievance too- maybe if enough people complain they will listen. 

 

My best advice is to talk to a patient advocate or benefits liaison. Those people can often get things moving when the system says you can't. I don't think you have to agree to a 5 month wait to see a doctor unless there's nobody on post or in the civilian network who can see you sooner. I'm pretty sure the access to care says you have a right to specialty care within 4 weeks.I think, but you'd need to work with an advocate, that you have a right to see a non-participating provider if no participating providers can see you within 4 weeks. If it's just that everyone is booked (MTF, network and non-network providers), I don't know what to do- maybe call a civilian provider and ask to go on the cancellation list. I've had good luck with cancellation lists. 

 

How did you file a grievance?

 

Poor thing. :( Surgery and no PT? I have another child who needs ortho surgery, too, but we waited until we moved because I was concerned about continuity of care.

 

And yes, as Targhee said, it is a wait list issue.

[PeterPan]

I think one trouble with OT and the like is that in many areas there are months long wait lists whether through MTF or civilian. We checked into civilian clinics and hospitals in a 50 mile radius and the shortest wait list was about 3 months.

We must have a glut or something.  Around here I can call and get in in a week.  But that's private, not through a hospital or clinic.  But we also apparently have some of the highest ASD diagnosis rates in the country in Ohio.  So we've got a lot of market driving the services maybe?  I don't know.  

 

My dad was in the Navy, btw, so we dealt with military medical care, which it sounds like was easier back then.  Don't envy you on that.  That's why I suggested you see what programs your state has, because in our state they don't ask about your insurance, etc.  It would allow you to jump that hurdle and get into service.  And you could pair what the ps will provide with whatever you can get your insurance to provide.

[Paige]

How did you file a grievance?

 

Poor thing. :( Surgery and no PT? I have another child who needs ortho surgery, too, but we waited until we moved because I was concerned about continuity of care.

 

And yes, as Targhee said, it is a wait list issue.

 

You can go here and click on your region, fill it out, and submit online. 

http://www.tricare.mil/Resources/Grievance.aspx

 

We couldn't wait to do the surgeries. 

[City Mouse]

Since I missed the original post, I can't comment on most of it, but I will share that my DS, who has only minor LDs, wet the bed frequently until he was 12. Right after he turned 12, we decided to try the medication. He used it for two weeks, and then stopped. He wet two more night after that then just stopped wetting. Over the past year he has had 2 more accidents, but both time he was pretty sick.

I can't say if it was the medication or just growing that did it. I was told that many late bedwetters stop at the onset of puberty.

[PeterPan]

Since I missed the original post, I can't comment on most of it, but I will share that my DS, who has only minor LDs, wet the bed frequently until he was 12. Right after he turned 12, we decided to try the medication. He used it for two weeks, and then stopped. He wet two more night after that then just stopped wetting. Over the past year he has had 2 more accidents, but both time he was pretty sick.

I can't say if it was the medication or just growing that did it. I was told that many late bedwetters stop at the onset of puberty.

Tell me about the medication.  What does it do?  And yes, dh was quite old when he stopped.  I forget if he said 7 or 12, but it wasn't a happy experience.  We've tried to eliminate all sense of issues with it, but I don't want to be so laid back that we fail to do what we can about it either.  In the case of dh, turns out he still has a retained spinal gallant.  I think what happens is the back begins to tighten and curve to keep the waist from touching, so what is actually happening is the body short-circuits a way around it, not that the problem actually went away.  Now dh is very stiff and tight there and finds being on his back painful, which I think is a consequence of so many years of the retained spinal gallant.

[City Mouse]

The medication that my DS used ws desmopressin. If I remember correctly, most people naturally have a hormone that decreases urine production when they are sleeping. The medicine acts like that hormone and causes the person to produce less urine (or maybe more concentrated urine) while asleep. The natural production of that hormone increases for some around puberty which could be what happened for my DS.

[PeterPan]

The medication that my DS used ws desmopressin. If I remember correctly, most people naturally have a hormone that decreases urine production when they are sleeping. The medicine acts like that hormone and causes the person to produce less urine (or maybe more concentrated urine) while asleep. The natural production of that hormone increases for some around puberty which could be what happened for my DS.

Oh dude, I did NOT know such a thing existed!!!  Well guess who's gonna have a chat with the ped soon!  So is this something that you took and then after a month went off, or is it something that you have to keep taking to get results?  Or do they wait until like 10+ before giving it?  Is 7 too young?  I mean, I really try to be laid back and go with the flow on this (sorry), but he's soaking through a medical grade diaper at night.

[texasmama]

The medication that my DS used ws desmopressin. If I remember correctly, most people naturally have a hormone that decreases urine production when they are sleeping. The medicine acts like that hormone and causes the person to produce less urine (or maybe more concentrated urine) while asleep. The natural production of that hormone increases for some around puberty which could be what happened for my DS.

Edited because I was wrong and don't want to spread incorrect info.  :D

[PeterPan]

TX, are you sure?  The one CM listed says for enuresis.  The one you listed is a tricyclic antidepressant.  

[texasmama]

TX, are you sure?  The one CM listed says for enuresis.  The one you listed is a tricyclic antidepressant.  

Yep, you're right.  I got my meds from the '90's mixed up.  lol  The one I was thinking of was DDAVP, a nasal spray.  It's the brand name for the med she listed.

[prairiewindmomma]

We have had kids on DDAVP; it is an amazing drug but it can take a bit to find the right dose.

[City Mouse]

Oh dude, I did NOT know such a thing existed!!! Well guess who's gonna have a chat with the ped soon! So is this something that you took and then after a month went off, or is it something that you have to keep taking to get results? Or do they wait until like 10+ before giving it? Is 7 too young? I mean, I really try to be laid back and go with the flow on this (sorry), but he's soaking through a medical grade diaper at night.

According to the Internet (because my memory Is faulty) the medicine does not cure the bedwetting, and it is supposed to be used for short term such as sleep overs and going to camp. For my DS, the plan was to use it for two weeks to find the right doseage, and then have it on hand for when it was needed. For DS that was primarily for Boy Scout camping.

We never made any issue at all about bedwetting at home so it did not bother either of us at home. I do think it helped my DS because a good friend of his back in Houston was also a late bedwetter. (She has Autism and dyslexia)I really think DS just grew out of bedwetting. My DH was a late bedwetter, and one of my brother wet the bed until he was 11-12. I remember all things that my parents tried with my brother from late night wake ups to alarms and punishments, but none of it made any difference. He just stopped wetting one day. Although I am happy not to have to buy pull-ups any longer, I sure am happy that that product is available.

[PeterPan]

Thanks CM, that makes more sense.  I didn't like what I was seeing with the sodium stuff and seizures.  Occasional or short term use would be better, given the possible risks and things I'd have to supervise to keep him safe.

[prairiewindmomma]

FWIW, it's used long-term with people (including kids) with diabetes insipidus. Our ^dd^ used it for that purpose.   Short term use for overnights (hello, hotels & camping) is better for the enuresis issues.

 

OhE, if you haven't already invested in medical grade cloth chux, I'd pull the trigger now. They are a huge laundry and life saver and they are much more secure and absorbent than paper chux for those diaper overflow issues.

[Heathermomster]

OP, I am sorry. Hang in there. I think I grimaced and gasped 10 times reading about your experience. My Dad retired USAF, and my Mom had a terrible time dealing with doctors for my severely handicapped sister.  It would be nice if the US gov't could manage the healthcare of military servicemen/women and their families better but NO!  And now, the US gov't has taken over all of healthcare.  

 

 

[Heathermomster]

For wetting, the book It's No Accident is worth reading. I seem to recall the author came on this board a couple years back.

[PeterPan]

For wetting, the book It's No Accident is worth reading. I seem to recall the author came on this board a couple years back.

Yup, read it.  We worked on that angle for a while, thought we were getting some improvement, but not.  Sigh.  I *know* some of it is the retained spinal galant, because I've watched it happen, where it was incredibly obvious the reflex would get set off and he'd wet and he did.  But like you're saying, maybe not just one thing.  I don't know.  

[nature girl]

I missed your original post, but I saw a talk by Dr. Amen who said nighttime wetting is extremely common in kids with ADHD because they tend to sleep very deeply and just don't sense bladder fullness. My DD is still in pull-ups, and she's an incredibly deep sleeper, I could yell in her ear and she wouldn't even flinch. I can't even let her fall asleep in the car because she'll wet even during a half hour nap...

[Faithful_Steward]

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[Targhee]

Hallelujah!!!

 

I'm so happy for you - I think I would have cried too!!!