Doctor holding meds hostage

[breezy1077]

Ok, I'll probably get flamed, but WTH. I need to vent. I'm not sure what the normal course is for obtaining meds, so please enlighten me before I go off on my DS's ped.

I'm not sure if y'all remember one of my old threads, but I've been at war with myself over whether or not to introduce meds to DS. He has a dx of PDD-NOS, and his attention span in school is nil (I've witnessed it myself, and it's completely different than the DS we get at home).

So, I finally broke down and asked his Ped. about some kind of meds to help with attention span. She refused to even discuss it with us until he had his 18 mo. re-evaluation, which he was barely due for. We asked her again to help us so we could get him started on something before the school year. The wait for a rushed re-eval was mid-sept....just to set the appt.

Well, she, the ped., put a rush in for us and we got in, but still won't have the results back until mid Sept.. We asked the ped if she could now prescribe something - she said not until she had the eval in her hands. The psych said he could send us to a doc. but by the time we got into see that doctor would be later than the current ped.

WTH, did she do this just to get more money out of us for her group of doctors? I mean, what if we had approached her about this wellll before the 18 mo. mark? I feel like we were just fleeced for $1000. And meanwhile, my son isn't getting the meds that may possibly help him - I say possibly because I'm still not convinced he'll be helped by them - but at least I'd know. ETA: DH just started on meds for Adult ADD, and it's like night and day for him. He's very anxious to see if meds will help DS too. (and this is from a man that won't even take Advil).

Sorry this is long, but I'm really starting to get peeved at the ped..

 

[Schmeck]

She really shouldn't prescribe anything until she has a chance to read the evaluation - how will she know what to prescribe until she gets all the info?

 

[breezy1077]

She really shouldn't prescribe anything until she has a chance to read the evaluation - how will she know what to prescribe until she gets all the info?

Because it's a RE-eval, she already has the original eval with full dx.

 

[bookwormde]

bet you would never expect to hear this from me but in this case I side with the Doctor.

If the initial evaluation was done at the age of 5 and was as “indefinite” as PDD-NOS then a new evaluation may very well indicate a more specific classification, some of which are contra indicators for many of the ADHD meds.

Just remember that most of the ADHD meds if approved today would carry a black label so great care in their prescription is important. Part of the evaluation should include an auditory processing (hearing and memory) evaluation. With spectrum children these processing limitations and their different EF system can easily be confused with classic ADHD. The real key is if the child can concentrate on certain things (typically visual input of their choosing or if extended involvement in anything is impossible)

I know I get frustrated but in this case 30 days is not too long to ask to keep from exposing your child to undue risks.

Just remember that while that I some cases these medicines appear helpful but mask the underlying cause of the problem which can be addressed in non medicative way thereby not committing your child to a lifetime of medications with serious side effects.

Take a breath and relax, at least that is what I do.

bookwormde

 

[breezy1077]

bet you would never expect to hear this from me but in this case I side with the Doctor.

If the initial evaluation was done at the age of 5 and was as “indefinite” as PDD-NOS then a new evaluation may very well indicate a more specific classification, some of which are contra indicators for many of the ADHD meds.

Just remember that most of the ADHD meds if approved today would carry a black label so great care in their prescription is important. Part of the evaluation should include an auditory processing (hearing and memory) evaluation. With spectrum children these processing limitations and their different EF system can easily be confused with classic ADHD. The real key is if the child can concentrate on certain things (typically visual input of their choosing or if extended involvement in anything is impossible)

I know I get frustrated but in this case 30 days is not too long to ask to keep from exposing your child to undue risks.

Just remember that while that I some cases these medicines appear helpful but mask the underlying cause of the problem which can be addressed in non medicative way thereby not committing your child to a lifetime of medications with serious side effects.

Take a breath and relax, at least that is what I do.

bookwormde

Thank you bookwormde! That makes me feel better, and makes perfect sense. I was looking at it from the standpoint that his DX was "fixed". I never considered that he might present differently on the spectrum - especially now that he's much more verbal. I feel much better with this explanation. I also posted this thread on the CB, where there's more traffic - looks like I didn't need to. Thank you!

 

[Karlzmom]

Breezy,


I know its tough to be a mom trying to make the right decisions about meds/dx/etc.

Not meaning to hijack your thread, but trying to put a context to my comments.

My oldest DS, now 16 was initially "dx'" as a toddler by the on post daycare based on his issues at the school. I knew there were "some" issues, but didn't see all they saw....he was put through testing more than once, but couldn't fully complete the tests..I was pushed to put him on meds.

Years later, and multiple meds as the school insists we "fix" the problems DS was having, we find that he is ADD, but its part of a dual diagnosis with Aspberger's [on the autism spectrum]. Along the way we tried every pill under the sun, biofeedback, diet changes, and lots of prayer.

I would never presume to question the dx that your doctor gave, but a lot of these spectrum disorders are not easily pinpointed as which exact one you have. I was struck by your mention that your DS's attention span is marketedly different at school than at home. There may be other things in play than simply an ADD spectrum diagnosis. One thing that can make case management so difficult is that you can find yourself stuck between educators who think they can "diagnose" and "recommend treatments", psychologists, who can be very good or bad at what they do - and regardless of their skill can't write the prescription, MDs, who may not be the actual primary case manager, but are asked to sign prescriptions by teachers/psychs/counselors/etc thru the parents who are just trying to do right by their child. Its a lot of pressure for the doctors who ultimately can have their licenses revoked if the are found to have failed to preform a good faith exam, & they can be prosecuted for insurance fraud if they file a claim without having a "medcal necessity" for the treatment based on their findings, not someone elses. For you, the parent it means frustration, multiple visits to multiple people trying to get everyone on the same page about something that's diagnosis is somewhat subjective and has major controversies about the appropriate treatment.

I don't have all the answers still, but would strongly urge you to look into any regional centers for support and information. We ended up taking DS to UCLA's neuropsych unit for diagnosis. Could someone else have done it, probably. For us, the ability to look at the school psychologist who tried to say at our IEP that our DS "couldn't be autistic" because "he plays chess just fine" and know that we were on firm ground to tell her and her boss that she didn't have a clue what she was talking about. Made our life much easier. The having someone who is coordinating your child's care, and the ability to not have to convince one person who's help you need that you know what talking about is a relief.

Best of luck to you & your DS.

 

[LuvsTinker]

Sorry this is so frustrating for you. I know all too well the PDD-NOS and lack of attention in school scenerio.

Most peds don't know enough about ADHD meds to prescribe.

We ended up going to a ped that specializes in developmental delays (because his son is on the spectrum). By the time we saw him, we had had many evals with different people performed.

Keep in mind that ADHD meds don't always work well with kids on the spectrum, we're on our 3rd that finally has helped. It's a very heartbreaking and frustrating path when the med does not work and causes side effects.

Best of luck and hugs.

 

[Tissa]

My ds's doctor will not prescribe his medications. He is seen by a Psychologist once a month that writes the prescriptions.

 

[breezy1077]

Thanks everyone!