Feeling Abandoned

iVillage Member
Registered: 02-17-2004
Feeling Abandoned
4
Thu, 11-01-2012 - 11:28am

Hello,

I need some guidance here.  Yesterday, DS5 had his neurology appointment.  We LOVE this neurologist as he takes a whole body approach to autism.  DS is very high functioning autism.  He has responded very well to nutritional supplements suggested by this particular neurologist.  Well, yesterday we were told there is a neurologist shortage right now (one retiring, one transferring, etc), so the hospital has decided our guy needs to focus on higher priority issues (such as seizures).  He said this was our last visit with him.  He is referring his autism patients out to behavioral psychiatrists and developmental peds.

I'm devastated.  First off, I've no idea what behavioral psychiatrists do.  My understanding is they put kids on meds and do counseling.  The peds in our area have been HUGE disappointments.  I finally found a regular ped who does not get in the way, so I am loathe to change her out.  But she is honest enough to say she knows very little about autism and follows my lead in this area.  In the ped. group is a developmental ped, whom we have never seen.  This neurologist has been the only one in our interactions to approach autism through nutrition and approach the treating the body as a whole.  By definition, wouldn't we need to keep a neurologist on our team?

I just don't know what to do next.  On one hand, yay!  DS is not a high priority issue.  He is doing really well.  He still has motor planning issues and is behind socially, but he's in a good place right now with all the supports we have in place.  On the other hand, it terrifies me to not have a neurologist overseeing a neurological developmental issue (autism).

The other part that bothers me is that DS is on iron and other supplements which this doctor normally monitors.  He's been low in several things for quite some time.  We've increased his dosage of things like iron to see if we can get those levels up.  NO bloodwork this time for follow up or to see if the higher dosages are working.  He said to take him off the iron and see if we see any behavioral changes.  If so, put him back on it.  Are you KIDDING ME?

DS asked if he outgrew this doctor.  We told him yes.  So he thinks this is all a great thing and he is the most awesome creature on earth.

I've reached out here in the past when our OT kept 'graduating' DS.  The board advised we find a new OT to specifically address the motor planning issues.  This board is also where I got emotional support and guidance for vision therapy.  Can I call on you again for this one?  I don't know which direction is up.

Thanks,

Karen

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Fri, 11-02-2012 - 2:38pm

I just wanted to offer up some (((HUGS))), that's got to be so frustrating.  I don't have much to offer in the way of advice, but just wanted you to know I'm thinking of you.  Can your pediatrician at least help with running the blood tests or will she not be much help with reading the results?

iVillage Member
Registered: 04-11-2012
Fri, 11-02-2012 - 2:47pm

My neice saw a behavioral pyschologist and it was nothing like what my sister had envisioned. The psychologist talked and played with my neice and then talked with her mother about her behavior and they worked on identifying problems or concerns. They then created a plan with different suggestions on how to help my sister with her daughter's stims, tics, discipline issues, etc. Each month she would check in and they would go over what appeared to be working and not working. The doc turned out to be one of the most valuable resources on her daughter's team.

My sister had to drive her daughter nearly two hours each way for appointments because there was nothing in her town. She says it was well worth it. It may really be worth your time and effort to check out a behavior psych. He or she may even be able to offer advice on the blood tests, etc.

iVillage Member
Registered: 04-18-2012
Fri, 11-02-2012 - 3:22pm

I can totally understand why you are feeling abandoned.  Once you've made a connection with a great doctor, it is hard to think of moving on to another.  My son visits a developmental pyshcologist regularly and I really like him (and we've never seen a neurologist at all!).  He relates well to my son (who is also has high-functioning autism), and genuinely cares about his future and his progress.  You may be pleasantly surpised with how well you'll like him/her!  If there are several in your area, perhaps you can interview them and find one that works best for your family. Wishing you the best of luck and please let us know how things turn out. 

iVillage Member
Registered: 02-17-2004
Fri, 11-02-2012 - 8:24pm

Thanks so much for the words of encouragement.  I spoke to his regular ped today.  She said she can run the iron bloodwork as he was low on iron for a neurotypical.  The big concern about that was 1) it's low and 2) it did not go up after being on iron for several months previously.  So we doubled the dose and it was supposed to be checked this round.  If the iron levels go up, then we are in better shape.  If it stays flat or goes down, then gluten sensitivities would need to be tested (inability to absorb iron or low iron levels can indicate this).  While we were running bloodwork, I wanted the gluten test run at the same time.  The ped would be able to help with basic iron levels, but she would not know how those levels would impact an autism brain/body.  The other things we watch are creatine or carnatine (I get those 2 confused) and vitamin D.  We have his wellness check soon, so we'll just get the iron work then.  I feel better about that piece.  Glad I grill everyone over every little test that is run!

I did not manage to speak to the developmental ped.  I did however reach out to a friend IRL who recommended the same guy.  She also recommended a physician's assistant nearby.  His children are on the spectrum, so he is really big into the nutritional supplements AND he understands.  So at least there is a lead there.

I am still waiting on word for the behavioral psych.  That one will be a tough call for me.  But from what you have shared here, it sounds like this person would serve the same role the ped. neuro. has served for us to date.  Oh please let us hope so.

Thanks again for the words of encouragement.  They really do help.