No specific diagnosis, on the spectrum

iVillage Member
Registered: 09-11-2004
No specific diagnosis, on the spectrum
4
Sat, 06-04-2005 - 3:48pm
I have two daughters...28 months, and 17.5 months. Both have various special needs...but I am here now about my youngest. There has been concern since birth with her about autism (no eye contact, not wanting to be held, ect.) However, after being diagnosed with Epilepsy we attributed everything to that. And we have continued to make excuses for the signs I think because we just couldn't handle another diagnosis added to the list. However, now that her Pediatrician has brought it up I know we should be concerned. I very much trust our Ped, so I will follow his advice. He feels that she is definitely somewhere on the spectrum, and went as far as saying he'll give me something that says that if I need it to get her services.


Our Webpage: www.aliandpeanut.com

Our local Down syndrome group:

iVillage Member
Registered: 06-25-2003
Sun, 06-05-2005 - 2:07am

OOOOhhh your babies are so cute! It muct be hard not to just pick up cuddle that little girl.

Pursue it now. This and every avenue. You cannot continue like this, and as studies have shown; for any kind of developmental delay, early intervention is absolutly key. You have a huge advantage in that your daughter is very young, and can make huge progress with the right therapies if started now.

It is too early to worry about what to say to the rellies. One step at a time: Worry about finding out what is going on first, then concern yourself with communication. Believe me, if there is something going on and you fail to address it in a timely manner for that or similar reasons, you will regret it for a very, very long time. (BTDT)

OK Lecture over.

My first question to you is what changed? She was doing well, then suddenly, this regressive pattern begins, right? Please look back over the family life and routine over the past few months and try to pin down *any* change which may have happened around that time. See if you can somehow reverse or compensate for the change, and if that helps. I really do mean *anything*. Just some examples from my own kids of how change impacted them:

* A tree removed from the back yard triggered my daughter's tactile defensiveness to the point where I could hardly dress her and the was the crankiest thing on earth.

* My DH started playing soccer on Thursday nights, and my DS develped Friday morning sensory issues regarding his socks.

If truly nothing has changed, I would revisit the meds question, as the meds were clearly instrumental in helping her previously. Maybe the doasage needs adjustment? As an aside: Have you checked out the ketogenic diet for epilepsy? Google it and see what you think.

I hope this help. Good luck and God bless. Cutiepies as they are; you have your hands full.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 09-11-2004
Sun, 06-05-2005 - 3:13am

Thank you Paula!


That has been my thinking...I know how important EI is, and I want to make sure she gets what she needs. I just wanted to make sure that it was justified before I decided to pursue it. Once the Ped brought it up I decide it was probably time. She is starting PT, ST, and we are scheduling a neuro psyche full day eval on Monday. I also plan to have them repeat her CT and MRI (since it's been 10 months since they were done.) and we will go from there. (Any other ideas of things to do?)


I have also been there done that.....I knew something was going on with her from birth when she was having seizures, but I let the Dr's continue to put me off. I regret to this day I did not force them to pursue it from birth.


I don't know if I'd go as far as to say she was "doing well." She did very well after being put on the seizure meds, as far as the seizures and the improvement in her personality, ect. It is hard for us to keep a strict schedule since we have so many therapies, and they have to be rescheduled when they get sick, Dr's appointments, ect. However, we do have a routine. We schedule therapies at the same time of day no matter what....Noon - 3pm. And, even on days we don't have therapies we are not home during that time. Whether we just drive, go to the park, ect...they know to expect that after lunch we leave. Rountine is a big thing in our house, as organization is the only way that I manage to keep things going smoothly. :) So for the most part the kids know what to expect, even without a real strict scheduled...which I would love to have if it weren't for all of the sudden things we have to do.


Sadly enough, there isn't much time in our house for change. The girls rooms remain the same, we don't reorganize furniture, DH works from home, so no change in schedule there...ect. Routine and organization keep us going...and if something gets moved and I can't find it that doesn't work. The girls don't get to spend a whole lot of time outside, the majority of the time in which they could be is spent in Dr's, ect. We have just recently been able to get them to the park, ect and being able to swing and run has seemed to slightly improve her behavior.


Her behavior started to worsen quickly after christmas....that was kind of a disaster all around as we discovered that my older daughter was oversensitive to lights, noise, ect...and she spent christmas screaming. The younger daughter just pretty much didn't pay attention most of the time, and within a couple of weeks she started to get violent, ect. At the time we were living in a very small house, and the girls only had about a 4x8 foot area to play in. I figured the behavior was caused by wanting their own space. The behavior continued to get worse. In February we moved into a very large house which allows for 3-4 rooms that can be devoted to playrooms/sensory rooms/rooms to sometimes play in. This gives the girls the opportunity to have their own space, lots of space, ect. It also makes it much easier to keep them safe having several rooms they can be in instead of them roaming the whole house.


After we moved and they had their own space the behavior temporarily improved and I thought I had been right about it being caused by them wanting their own space. I can think of NOTHING else which changed during this time. She had been on strict diet already so no change in food, no rearranging of anything, just the new house, ect. But the improvement was short lived and within a couple of weeks she was back to herself. I also can not connect that with anything. She eats the same things, gets the same meds, ect. Didn't switch out toys, or change her bed around, or move anything around in the house. My parents also didn't do any of the above. I continue to go over and over in my head to try and find out if there is something I am missing...and


Our Webpage: www.aliandpeanut.com

Our local Down syndrome group:

Avatar for cathby
iVillage Member
Registered: 05-16-2003
Sun, 06-05-2005 - 9:31am

Hi Chelsae,

What cutie girls you have!

I'm Cathy, I have a 3.11 year old DS, Jack Attack, who is PDD-NOS. He was typcially-developing until about age 2. I also have two girls (ages 7-years and 16-months) are typically developing.

Anyhoo, I think you should go right ahead and get her evaluated. There are so many parents who wish they had done so sooner. Don't worry that Peanut will be a challenge to the speech therapist. Believe me, I'm sure she's had challenging kids before -- she's not in it for the easy work! ;)

As far as dx. and the in-laws. I would say one thing at a time. I have to sugar-coat things for my mother as well. And lemme' tell you it's a pain for me to raise a special needs child whilst propping my own mother up (Hello, isn't she supposed to be supporting ME in this?) If Peanut does get a dx., we'll all help you with the grandparent thing. One site has a link to a "Letter to Grandparents" which is very explicit and helpful.

Oh! And please stop on over at the Dev. Delays board. There are several moms there with a lot of experience with epilepsy.

Welcome aboard,
Cathy

iVillage Member
Registered: 09-11-2004
Sun, 06-05-2005 - 1:45pm

I think that if we were to get a diagnosis I would call and talk to my MIL personally. I am just afraid that she is going to freak out that now both of her grandchildren have issues. (Even the though Epilepsy has been there, it hasn't been something she has seen much of, we don't see her much. These behaviors ect are very obvious and she has already started to see those.) We have been sugarcoating things from her for 2.5 years....and it is getting old. So I think I'm done with that...if she can't handle it she can't handle it.


I am on the Epilepsy board when something comes up with the seizures. :)


I'm anxious for tomorrow to call and schedule this...we will see how soon this woman can see her, I'm hoping it isn't an 8 month wait. If it's going to be then I think we may end up putting in rubber walls and flooring. (Very serious about that, not being sarcastic!) In order to try and help her not to hurt herself in the meantime.


Thank you!



Our Webpage: www.aliandpeanut.com


Our local Down syndrome group webpage: www.upwithdowns.org





Our Webpage: www.aliandpeanut.com

Our local Down syndrome group: