has anyone dealt with Autism Spectrum Disorders (ASD) & major surgery?

[fiendish]

I am new here & desperately looking for help. My difficult child is 5 (Autism Spectrum Disorders (ASD)/asperger's, ADHD) and also has a congenital heart defect. He had 2 surgeries as a baby and we just found out this week he needs another open heart surgery. He is extremely anxious as it is and has a lot of trouble with sensory issues and is very rigid/OCDish about his daily life. His sleep is horrid. We just started a new therapist and are considering medications for the anxiety. He has some medication limitations because of the cardiac condition.

He just had an mri done under general anasthetic and did not react well, to put it mildly. he had a total freakout meltdown because of the IV and the tape and waking up in a strange place.

Has anyone been through this? Any recommendations for helping him through it, and helping the cardiac unit understand what he needs to get through it?

S.
mom of 5 y.o. difficult child (Autism Spectrum Disorders (ASD), heart defect) AKA
and fairly challenging hyper/explosive 2 y.o. girl child AKA 'the tornado'

 

[JulienSam]

Wish I had some specific advice for you... it must be scary for both of you to be facing this major surgery.

Is there a patient contact at the hospital or surgery center who might be able to give you some guidance? Or a local children's hospital might have some resources for you...

Good luck with everything...

Julie

 

[SRL]

Hi Fiendish,

We've been through a number of minor surgeries and I know how worried I was about my difficult child so I can just imagine what you're going through.

Are you familiar with social stories? Those can be written specific to the child's situation (pictures of the actual hospital, written specific to the situation) and can be very helpful to some kids.

Along those same lines, if information in advance would help prepare him, here are some books. If he's got a geekier side to him, dvd's produced for adults would be another idea.

My difficult child got more anxious with advanced information so I didn't give him too much notice in advance of his hospital visits.

http://www.childrensdmc.org/?id=492&Sensory Integration Disorder (SID)=1

When you meet with the anesthesiologist, make sure to let him/her know. They can take steps like give them something to put him out of it before going back and not putting in the iv until he's out.

Call the patient advocacy department of the hospital to talk to them about communicating his needs to the right people.

I'm mulling over the medication possibility. If he's extremely anxious in everyday life, it's a place you'll likely end up anyway. If you decide to go this route 1) do it early so you have time to adjust the medication and dosage if needed. My kiddo had a negative response to a medication and trust me, you want to be clear of that before surgery. I'd also ask around to find out who in the area is highly regarded with medications and go with the standout.

 

[fiendish]

The social story is a really good idea, thanks! We do some of that but I think it could be done in a more complete way. He is pretty geeky but I think maybe a bit too young for an adult-geared dvd on this subject.

For the MRI they gave him versed first and did the IV after. He was out by that time. The worst part is waking up with all the wires attached and feeling disoriented anyway.

He is extremely anxious in everyday life & his pediatrician suggested an SSRI (zoloft or prozac) but wants to try therapy first. He's been in therapy for short periods and I think he would react better to therapy if we could manage the anxiety first. I live in a small area and don't have a lot of choices for psychiatrists, but my own therapist put in a call to the child psychiatric office to get us a phone consult ASAP. She is not a child psychiatric expert but thinks we should probably try risperdal. I don't know if that has cardiac interactions but will certainly make sure of it.

I was really upset with his nurse on tuesday because she was totally unsympathetic to his sensory freakout--she even put a sock over his IV hand, which made it worse. You don't add more sensation. And she was very dismissive when he screamed he wanted it out. I am planning to have a very long meeting with them but does anyone know of any printed resources or anything that I can bring with me as a list of things we need or suggestions for managing his recovery? That's what I'm particularly worried about--the recovery. Thrashing around with your chest barely wired and glued together is really bad, to put it mildly.

 

[SRL]

You could even go to the hospital (or their website) and use actual images to help make it more realistic.

My kiddo has Sensory Integration Disorder (SID) so I'm highly sympathizing with your plight. Most of the time he came out of anesthesia fairly calm but the one time he didn't (mad and howling!) he was most bent out of shape about the IV. I am venturing a guess here but I'd think that it would be more routine to use some levels of sedation during recovery for kids who aren't at an age or stage that they can understand. I did find that when he was allowed to come out of sedation slowly in a dark, quiet room he did much better than at the let's get him up and out the door surgicenter.

If this were me I'd be making up a sign for staff near his bed saying he has Autism, Anxiety and Sensory Integration and then a list of suggestions.

Risperdal is an antipsychotic that has been approved to treat irritability/regulate mood in kids with Autism. Anecdotally I've heard parents say it's also helped with anxiety. From parents reports here it seems to result in fewer wild side effects than the antidepressants, but every kid is very different when it comes to responses.
http://www.risperdalautism.com/risperdalautism/

The other two medications are generally used to target depression and anxiety. Both can work very well when matched to the right patient. Prozac is used cautiously with children due to increased suicide risk but it's also been around the longest. Zoloft can be a good medication for anxiety. If it's not the right match for the individual it can result in some extreme behavioral reactions--which is bad if you're the ones going through it, but also good in the sense that you'd find out right away. We tried Celexa and Zoloft for anxiety and my difficult child was one that didn't get alone well with them so we took the long road in treating anxiety. I can see where in your son's situation it's more pressing to give him some relief.

 

[smallworld]

FYI, Prozac is the only SSRI that is FDA-approved for the treatment of depression in children. Prozac, Zoloft and Luvox are the only SSRIs that are FDA-approved for the treatment of Obsessive Compulsive Disorder (OCD) (a form of anxiety) in children. All SSRIs carry a warning about an increased risk of suicidal ideation in children.

I'm guessing that his medical team will keep him more sedated following the heart surgery than they did when he awoke from the MRI. When you wake up from an MRI, there is nothing to recover from (it's not invasive). Obviously, that's not the case with heart surgery. It's definitely something to ask the surgeon about prior to the surgery.

 

[susiestar]

If it is at all possible to have this done at a Children's hospital, I STRONGLY recommend it. I also recommend having the psychiatrist (with md) AND an occupational therapist consult iwth the staff, and you, for ways to help him through this.

They may have to keep him sedated for a few days, I would think, esp if he is likely to rip out an IV. I think they probably WILL have to put a sock or some kind of cover over the IV site, because it will need to be in for a while (or it seems likely it would need to be in while he is in the hospital.). You might ask them to keep putting EMLA cream on it (prilocaine/lidocaine cream) to numb the area with the IV so it is less bothersome - IF he will be able to handle these medications topically after surgery.

Hugs,

Susie

 

[SRL]

I just thought of something--you might post this inquiry on Wrong Planet, a discussion board that has a lot of adult members with Asperger's Syndrome. They may be able to pull up ideas from personal experience or just from living on that side of the fence that we couldn't.

 

[1 Day At a Time]

S,

Our difficult child was in a serious accident 5 years ago and he had his 13th reconstructive surgery last year. He also was finally diagnosed with AS last year. This means he went through numerous procedures and hospitalizations with no one (us included) knowing what was going on.

Hind sight is 20/20 but here's what we have discovered:

We had our greatest successes at the local Children's Hospital. I highly recommend going to one if you can. Also, There is some wonderful information at O.A.S.I.S (the online Asperger Sydrome Information and Support web site) for nurses that you can print out to give them. Wow, I wish we had that 5 years ago! It was really the nurses who often didn't "get it" - but then, neither did we...

The beauty of a Children's Hospital is that they have psychiatrists and tdocs on staff -also they usually have a children's advocate or children's "life" person on staff. These folks can help out tremendously, and they can help educate the staff.

I've never been a big fan of medications, but we reached the point where we really wanted difficult child sedated whenever something "big" was coming up. The psychiatrist put him on Zoloft and it was (and is) a Godsend! We also finally figured out that we wanted to avoid constant IV sticks - so everytime he had a procedure - we had a picture line installed under sedation. That way, he was never awake for an IV stick. His docs also let him remove his own picture line when it was time to do so... That way he was in control of the situation. I was kind of shocked the first time, but it was extremely successful.

Good luck to you! I'll be thinking of you, because I know from first hand experience (one of difficult child's hospitalizations was 3 months long) just how hard it is for a child with AS to be hospitalized.

 

[SRL]

fiendish, do you have a weighted blanket? We have one and it's calming not only for difficult child but the other kids and I will grab it sometimes too. They're pricey but the weight without the heat of a blanket pile has been worth it.

 

[GoingNorth]

I'm an adult difficult child. I'm both AS and bipolar (and in my late 40's).

A few years ago I required emergency surgery for an intestinal obstruction...I *freaked* in the ER. It took holding me down to get in a nasogastric tube.

Sedation freaks me out because I get disoriented (I am medicated for the BiPolar (BP) and am stable)

What helped a lot was that I was able to be my own advocate. I was able to tell them not to touch me while I was sleeping. Had them put a note above and behind my bed to tell them not to touch me without talking to me and getting an acknowledgement.

I don't know if you can use it for pain control with heart surgery, but what was helpful in my case was that they could give me an epidural that numbed the surgery area, hence not so much pain medicine.

I don't mind IV sticks and will for routine blood draws for medication levels and the like, tell them which veins to use, but after two weeks in the hospital my veins started to fry out from the IVs and blood draws.

I asked them to put in a PICC line. I LOVED that thing! Mine was done under local because like I said "sticks" don't bother me, and I wanted to watch it on the flouroscope (very cool, if you are into things medical). They did mine under a local and oddly, though they numb the skin and muscle where they make the incision, you don't feel them threading the tubing into the chest vein at all.

They sedate children, etc., for PICC line installs because you must be able to hold still during them.

The PICC line usually has two "lines" built in. One is used for administering drugs and feedings (if needed) and one is used for blood draws. BOTH are absolutely painless and all you have to deal with are two small, dangling connectors that are taped to the skin. There is none of the discomfort you get with IV catheters.

The only other thing they do daily with a PICC line is to flush it with saline to make sure it doesn't block up. That is painless as well, though a bit weird as medical saline has a metallic taste. It's odd as you don't think of tasting saline solution.

 

[fiendish]

Thank you! This is all very helpful.

I should mention that this is major open heart bypass surgery and has to be done at a children's hospital, in fact there are only a handful really qualified to do it. We have to travel 4 hours to Children's in Boston to have it done, which means we also have to be away from home for a while (which is a factor in itself).

I made him a weighted blanket a few years ago and he hates the dang thing. I should offer it up here--it's a thomas quilt, a 4 y.o. AS's dream blanket. Annoyed me no end that he hates it (we did give it many tries over several weeks).


The sign above his bed is good, although we are not planning to leave him for a minute. I am hoping they will keep him sedated for a while (they have to be sedated until they can be extubated, which depends on how they're doing after surgery. It was about 36 hours last time before he was extubated). They did give him versed (a mild sedative) before they did the IV for the MRI, so I'm sure they'll do that again. I'm really just worried about the time after he wakes up but before he can be unhooked. He'll probably be doped up on morphine too (like last time) but I'm not sure that will be enough to distract him.

I did put in a call to his pediatrician (since it will take months for the psychiatrist to see us) to ask about some kind of anxiety medications. He has been having nightmares where he screams that there is a "picture" on his arm and he wants it off. It takes forever to calm him down. On top of his normal phobia-anxiety and transition meltdowns he is also taking even longer to go to sleep (2+ hours) and is having these incredible manic episodes before going to sleep where he races around cackling and chanting to himself and we have to lie on top of him to get him to stop slamming into things. When we can get him calmed down he usually tells us he's worried about something, but can't say what it is.

 

[Lothlorien]

I'm just reading this today. Missy is not Autism Spectrum Disorders (ASD), but she has major anxiety and when she had an MRI, she was a wreck afterwards, for hours.

When she had her tonsils out, they actually kicked us out of recovery because she just kept screaming and screaming. Can you imagine....her tonsils/adenoids were just removed and she did nothing but scream. They eventually put us in a private room at the end of the hallway, away from everyone else because she was disturbing the whole unit.

I have no advice, but can certainly empathize with you. I hope all goes well for you.

 

[fiendish]

Yeah, Iain did nothing but scream afterwards too, even though he had been intubated and that makes your throat really raw. You could hear him everywhere.

We had another meeting with the cardiologist and he said that Iain would probably be in the hospital for a week, with the first 2-3 days total pain management/sedation, and then the next few days with more mobility. So I guess we're looking at probably 3-4 days where it will be really bad, as he'll be up and around but still have chest tubes, IVs, leads, etc. His therapist thinks we can do some short term medicating to get him through the surgery and reevaluate the need after that.