Emotional Regulation

I was really proud of Miss Iz yesterday.  She did such a great job handling emotions!  She's been dealing with pretty severe anxiety ever since her open heart surgery at seven months old and has been in and out of therapy since shortly before she turned two.  As she grows and matures, the manifestation of her anxiety changes.  Adding an anxiety med last year helped as well and we moved from her very long selective mutism stage into what I call the "Fight or Flight" stage.

One of the things we deal with is the fact that regular ordinary frustrations for her age can often kickstart the anxiety and then we go from 0 to 300 in a very short amount of time.  She does OT as well as meets with a therapist to help and she and I do a lot of work at home.  She had been making big improvements and then school just set her back to the point we pulled her out.  She's made great strides again and those fight or flight outbursts are getting further and further apart.  Yesterday morning W had OT and then we ran errands to finish off our grocery shopping for the weekend and next week.  She did awesome navigating the crowds (sometimes just having so many people around puts her on high alert and it takes very little to tip her over the edge), she handled being told "no" to things like a champ, she listened to instructions fairly well.  She needed some reminders here and there but nothing escalated and she chose appropriate ways to express the emotions she was having.  She used her words, did her breathing, when we needed to we simply moved together to a quieter part of the store, we talked things out.

We talk a lot about how we all have big emotions and that that is okay and normal and we are supposed to have big emotions.  But we have to choose how to handle those big emotions--we can't hurt others or ourselves or destroy things.  We talk a lot about making safe choices and that even grownups have to still keep working on things, too.  She may not always be in control enough to make the choices she needs to (which is why she's homeschooled now--the school was unwilling to step in when needed to keep her and others safe.  She knows that if she's out of control, I'll step in to keep her safe.  She doesn't like getting "tight hugs" when she's upset but she's a smart kid and when she's calm, she can tell you she needs them, even when she can't ask for them), but she's working on making them a habit so she doesn't have to think about them.  We practice when she's calm and she's applying her calm down strategies to other people in the house.  I was irritated with W this morning because he kept trying to climb on me and almost knocked my coffee over and I asked him to get down and go into the living room--Iz came over and starting rubbing my back in long firm strokes and told me that pressure input is really good for staying calm when you start to get mad LOL (Iz's response to W irritating her is usually screaming and crying and we are working on that because the loud wailing won't fix the problem--using  her words will be more effective because then even if W doesn't stop because he's two, I can hear what the problem is and come help.  I used my words like she is supposed to tell W to stop and go in the other room but she figured some pressure input wouldn't hurt).  She's a funny, sweet, thoughtful little girl :)

Much has happened!

I am shamefully behind (again) on updating so of course there is much to share!

Baby W had another swallow study done in the beginning of December.  We were hoping for improvement, perhaps even an end to thickening his liquids but, alas, this was not meant to be.  He had gotten worse in some areas, enough that technically he should have moved back to honey thick liquids instead of the nectar he had been on.  However, his GI decided to leave him on nectar because she was putting him back into the NMES feeding therapy and he responded so well the last time she felt he could stay on nectar since he improved on NMES last time.  So back to three times a week for three months!  We just started on month three so the end is (sort of) in sight.

I asked about possibly trying to go off Prilosec since Baby W's reflux seemed to have improved--she said we could do a trial and see how it went and he has been doing fantastic :)  We get some minor spit up maybe once or twice a week and even that is becoming less common.  I am cautiously optimistic in saying I think maybe we might be done with reflux meds.

The other big thing is GI ordered a sedated MRI for W--between the swallowing issues and developmental delays, she wants to get a look at his brain and nerves and all that to rule out some possible causes.  She said if I really wanted to, we could wait to see how he does with this round of feeding therapy because chances are the MRI would be perfectly normal.  My reply was that "chances are" is not our friend because our family tends to fall into the "somebody has to be the statistic" category ;-)  I told  her about Izzy's MRI (neurologist wanted one to rule out things but told us chances are it would be normal--nope, not normal) and that settled it for her--she wanted to get it now rather than wait for it.  With Mr. Piper living in another state for work, it was a bit of a job getting a time set up that he could be here for so I wasn't juggling all the other kids but we finally got it set up.....only to have to cancel because W has been sick for a couple months now.  He has had the neverending ear and sinus infection.  Because of his swallowing issues, I was told he has to be under full anesthesia instead of just sedation like my Busy Little B and Izzy so he absolutely cannot be ill.  Three rounds of antibiotics later and he got the all clear this morning to keep his second MRI date on Tuesday.  Again, it took some maneuvering to get Mr. Piper here for this so *fingers crossed* that he remains well and we can get this done.

My Busy Little B had another overnight EEG and oh, my, was this one so much harder than the one he did just before W was born a year and a half ago.  In some ways it was easier--he understood more and so was trying to cooperate and stay in camera and so we were playing board games and built with Lego and did puzzles and watched a movie (Ratchet and Clank--he chose it specifically because his older brother really wanted to see it and B figured he'd be jealous LOL).  He ate his weight in food, I think--they told him he could order a meal whenever he was hungry, not just at meal times, plus they had a family pantry where I could go get him snacks and drinks and he took the "eat as much as you want" to heart.  I'm not sure where he put it all but he's been eating everything in sight at home as well.  I've started calling him the dinner vacuum because once everyone is finished, he polishes off any food left on sibling plates :p  Sorry, went off on a food tangent.  Anyway, the hard part of the EEG was the gauze that held the leads in place--it made a sort of helmet with a strap and he could not stand it.  During the day, reminders not to touch, pull, or tug on it were enough--he was fussy and grumpy about it but was easily distracted and redirected but when night came?  He cried and screamed for such a long time--Mr. Piper took the overnight shift because Baby W still needs mommy cuddles to sleep and he said B was inconsolable.  He even called me so I could talk to B to try to calm him down but I'm pretty sure it just made B even more angry.  They survived, though, and B was so relieved when the EEG ladies came to take it all off.  No results yet, though :\

Poor Iz has been really struggling with her anxiety the last few months and just about her entire team is scrambling trying to figure out why and how to help her.  It seems as though every few years the manifestation of her anxiety shifts a bit and we have to learn new strategies to deal with it.  Right after her heart surgery, it was panic attacks so severe she'd hyperventilate and pass out.  Then came severe separation anxiety.  Then came selective mutism.  Now we seem to be entering an aggressive phase.  Thankfully everyone is very committed to helping her so her school team and medical team are all trying hard to bring her back to a more even keel.  I really appreciate how the school not only asks about what helps at home but they work to incorporate those things at school and also share what works at school so I can incorporate at home--that consistency has been helping and we are again having more good days than bad :) 

Developmental Pediatrician

Iz met with the developmental pediatrician for the first time.  He says her intelligence testing shows she's one smart little girl but her current abilities are way low and he thinks it all comes down to the anxiety she developed after surgery.  He asked permission to talk to the school and try to get them to make a medical exemption to bump her up on the wait list and get a spot for preschool and see if regular classroom experience can help her get past the anxiety (unlike her EI group where she made not a sound for over two years....) and if she still can't participate, he's recommending we try a very low level anxiety med.  He's in agreement with the neuropsych that its selective mutism but while therapy alone has helped improve things, its not enough.  He talked about maybe getting her into some other services as well--currently she's in OT to work on motor skills and sensory issues and she meets with a therapist every few weeks.  He mentioned maybe some PT for the low muscle tone and maybe speech.  Guess we'll see what happens?

Hey, want another diagnosis?

Yesterday Iz had her results meeting for her neuropsych evaluations and we now officially have the selective mutism diagnosis her last therapist and speech therapist were discussing.  So looks like we are heading back to therapy to help her with the anxiety and the resulting behavior issues.  I was not convinced she was ready to be set free when she was discharged last year so I don't mind going back.  She seems to like the boys' therapist so maybe we'll get lucky and she'll be the one they give Iz's file to :p

hey, want another diagnosis?

So speech.  We all know how well that is going--Iz rarely speaks.  In fact, she rarely speaks in most places we go.  Dr appointments.  Play group.  Specialist appointments.  Testing.  Even Grandma and Grandpa's house.  Wherever we go (or someone comes to us) where people not in our core family are present, she does not speak.  If we are lucky, she might grunt or point and maybe, must maybe, eventually talk a little. 

Our SLP is thinking Selective Mutism:  http://www.asha.org/public/speech/disorders/SelectiveMutism.htm

We already know Iz suffers from anxiety so it would actually not be surprising if she is suffering from an anxiety driven communication issue.  At this point, we are going to try and coordinate with her therapist to come to a speech session and see what's going on and she and the SLP can work together to come up with a plan to get Iz past her anxiety so she can benefit from her speech therapy.  She has 36 visits total approved by insurance and we've already used up 8 of them--Iz needs to get on the speech bandwagon soon!  If she's not participating in speech, insurance isn't going to approve another set of sessions when this one runs out :\

Today's visit started with Iz hiding from the SLP but she did eventually come out to play a little.  She insisted on wearing her coat and boots, something she hasn't done in several visits.  After she was done hiding under the table, she mostly pointed at things and grunted a few times.  Towards the end we got a few words but by the time she says something, its time to go!