complete regression - does it end? | Autism PDD

Well, we hoped that things were going well. At 3 1/2 our little guy was talking in some sentences, starting to play independently and had joined an intergrated pre-school class. But, in the last few weeks, he has completely regressed to where he was 1 1/2 years ago. He does not answer questions, seems totally disengaged, can't seem to feed himself and is engaging in self-stimulatory behavior that we haven't seen in so long that we had almost forgotten it. Just wondering if this is ever going to end and where he may be if it does. No-one can figure out what is causing it. Personally, I think that this sort of behavior isn't necessarily caused by anything, but is just a part of autism, meaning that at certain points there is a complete breakdown in functioning. Am I wrong? Any thoughts would be appreciated. Thanks

I dont even know what to say, other than I am so sorry this is happening to your sweet little boy

DO YOU USE BRUSH / COMPRESSION THERAPY? THE REASON I ASK IS DEVIN STARTED TO REGRESS AND THE THERAPIST STARTED IT ON HIM AND THE RESULTS ARE AMAZING. HE IS NOW STARTING TO TALK AND IS INTERACTING WITH US AGAIN

JUST A THOUGHT

gRANDMA TO DEVIN 3 YRS ASD / SID

I am soooo srry to hear about this- It must be so hard to go through this

- is it just a phase he is going through - I ask becasue the last week R seemed very disengaged and stimmy but he was stressed out do to new visitors but spending a lot of one on one time and doing a TON of sensory things- he seems to be back on his slow and steady progress rate

I too would say sensory integration therapy might help.

OR it may be a developmental phase, and he will suddenly surge forward again ...

Thanks everyone. I felt really bad after posting my last message. I know we all have to hang in there and do the best we can. I think about you and your kids too.

Good luck to everyone. Thanks for the support.

This whole ordeal is one huge roller coaster ride that seemingly never ends. I think that when they are little, the dips take you for a loop because you are new to the "ride"...as your child ages (and progresses!), the parents are more experienced at dealing with the downswings.

I see a difference with Cole, he's not quite 7, but we don't have quite the emotional reaction when he regresses. I've also heard that a regression is the brain's way of focusing on one area that is about to make a big jump in capability, so its too distracted to "do that ole thing" any more.

People who keep journals about how their child is doing - or just jot notes down ont he wall calendare - are sometimes better at dealing with the swings up and down.

Hang on. The ride is not what you bargained for, but the tickets are two for one! You and your spouse both get to ride for the price of one...it gets better. Promise ya.

I feel for you

We go through periods here where it seems she takes 5 steps forward and 3 steps back...I would think its normal and will get better with time but it doesnt make it any less heartbreaking and confusing.

I have been told some asd kids this happens with but epilepsy/asd are not uncommon either. EEG's are not always able to find this either. That just means not at that time also. We had Daniel on depakote for a while and it did help him but Dad hates meds. [QUOTE=z's parents]I can't say that I can reassure myself that this is just another dip. It has been a month of bizarre and unresponsive behavior and after sacrificing pretty much everything we have, and all our time and energies for the past two years, I feel that we are pretty much at square one. It is relentlessly terrible. I feel like we fooled outselves into thinking that we could make a difference and now we're exhausted and hopeless. I'm ready to plan for the worst for the future.

I wish I had resigned myself earlier.[/QUOTE]
I feel so sad for you and want to send you a massive giant hug
I can't say that I can reassure myself that this is just another dip. It has been a month of bizarre and unresponsive behavior and after sacrificing pretty much everything we have, and all our time and energies for the past two years, I feel that we are pretty much at square one. It is relentlessly terrible. I feel like we fooled outselves into thinking that we could make a difference and now we're exhausted and hopeless. I'm ready to plan for the worst for the future. I wish I had resigned myself earlier.I am so sad for you right now. I can feel the pain in your post.

Please try not to beat yourself up. Anything you did for your child is
ALWAYS worth it. That's what we parents do. We try to help our children.

I am sure this is a very scary time for your entire family. You will be
constantly on my mind. Please keep us updated.

Remember to take care of yourself during this time, too. It's very easy to put
our own health aside when dealing with our children's well-being. Perhaps a
therapist will be able to help you through these very real and appropriate
feelings of hopelessness and grief you are feeling right now. Best wishes for
you.

z'parents

I'm sorry you're going thru this, it sounds a lot like my son Zachary. You need to see a neurologist that specializes in epilepsy as soon as possible. I'm not sure where you live, but try to see a neuro at a childrens hospital. We live in a small town, and have to travel 4 hrs round trip to see our neuro, but it is well worth it.

Zach was ahead in language then he started losing it around 2 1/2 yrs old. Six mths later he started strange behaviors we had never seen before (autistic behaviors). He also lost fine motor skills, and could no longer feed himself, or open screw top containers. He was just beginning to toilet train, and that completely disappeared.

Zach continues to deteriorate, but we know what is wrong now. He has an epilepsy syndrome called landau kleffner syndrome. He doesn't have many obvious seizures, and what is causing the damage is subclinical activity.

I'm not saying Z has LKS, just that you need to see a Dr. that can see past the autism, and see your child is continuing to regress. When going to see a neuro, see if your regular Ped., can write up a medical summary of Z, that will help a lot, and take all the medical records you can with you.

If you get the right diagnosis, there are treatments, from anti-epilepsy meds, steroids, IVIG, and even surgery(MST).

Currently Zach is getting IVIG, which is not able to stop the regressions, but he at least is able to recover more fully than without treatment.

Please pm me if you have any questions, and the best of luck. If you're in the U.S. I can give you some names of the best Drs., that specialize in hard to recognize epilepsy syndormes, and let you know where they practice.

Thanks for your reply. I am going to investigate the possibility that he has LKS. We looked into it before, but got nowhere. Our son had an overnight EEG at age 2 and it was completely normal, but perhaps we need to do another one? In any case, thanks for the e-mail.

Unfortunately the problem with LKS is that it doesn't always show up on an eeg. I have heard of some people finally picking up the pattern after 3 nights being hooked up. Sometimes the only time you will find the pattern is during a regression, and unless you can tell when a regression is hitting, there may not be time to get an eeg.

Zach's eeg's have always been abnormal in the temporal lobes, but haven't always shown the specific pattern they're looking for. The best tool is a qeeg or B.E.A.M., just like a veeg, but has double the leads and goes deeper, it's especially useful for picking up LKS.

You may have to push harder with a neuro that has some knowledge of LKS, it took us four neuro's before we found one with knowledge, and 15 mins into the appt., he said of course it's LKS. We had spent 2 yrs saying this must be LKS, but were dismissed constantly.

I hope you can get some answers soon, I know firsthand how painful it is to watch regressions like you described Z is having. Zach used to get them every 6-8 mths, now they're coming every 5 mths.