Newbie here and glad I've found you

[Renea]

Hello!

I'm a stay at home mom to two boys. My difficult child? is my 8 year old son. He has had issues since birth and after countless doctors, therapist, psychiatrist, developmental pediatrician and pediatric neurologist, the diagnoses that is sticking at the moment is Asperger's and ADHD. In the past he has had major sensory issues, extreme irritability and fits of horrible agression. He would get so upset over tiny things that other kids would have never even noticed and he would go through these fits of rage (daily) where he would hit, kick, scream, throw, pull my hair.. you name it. He would bang his head on walls, floors, tell teachers he wanted to kill himself. He is currently doing pretty good. He has been taking prozac for about 18 months now and that has helped stable him enough so that we could get him into therapy. Before the medications, he was physically attacking the therapist and we were getting nowhere. He hasn't had any change in medication dosage for over a year now and we have still continued to see improvement as time has gone by. Before the prozac, we tried risperidone, abilify and vyvanse. None of those helped and he had horrible side effects. He is currently homeschooled. We pulled him from school about three months into Kindergarten because he was having so many problems in the classroom. Our thinking at the time was that we would pull him for Kinder, have him thoroughly evaluated, get a diagnosis and get him some help before starting him in First grade the following Fall. I was definitely clueless about just how LONG that whole process would take! lol We're still homeschooling because it just seems to be a better fit for him. Things certainly aren't perfect and I still feel like our life is not "normal" but we're hanging in there. He has even started showing empathy in the past year and that to me has been MAJOR!

My only issue right now is the medication is causing him to gain weight and his growth in height is slowing waaaay down. Not sure if that's a side effect or not but it's still concerning to me. He has always been tall for his age so he is still above average in height but he is definitely falling off of his "curve". He hasn't grown at all in the past 7 months. I plan on talking about all of this to his psychiatric at our visit next month but I can't stop worrying about all of it. I worry about the thought of having to take him off the medication and him relapsing, I worry about withdrawal problems and I worry about the medication hurting his physical health if he continues on it. In a perfect world, he could go off the medication with no issues and be just fine... but I'm not so sure that would happen. It doesn't help that when my anxiety gets the best of me, I start googling things like crazy and then I just find all sorts of horror stories that make me panic even more. aaaaahhhh!

More about us... I've been married for 11 years to a wonderful man. He's in the military so that is adding to my stress too. We are currently at a non-deployable unit but we will be moving next summer and a one year deployment will likely soon follow. We live far away from family due to military assignment. husband has become my rock through all this and has really stepped up over the years and become soooo supportive. Which is good because he is about all I have as far as support goes!

We have a 5 year old son as well who I guess would be my easy child? He has been the most easy going child since birth which has been a true blessing!

Anyway, I'm glad I have found this place. There's so much more I could add to our "story" with our difficult child but I'm gonna try to keep things fairly short. I have felt sooo alone over the past few years and at times, when things have been really, really bad, it is horrible to feel like no one understands what you're going through.

 

[TeDo]

Welcome to our "family". I am so sorry you had to find us but am even more glad you did. The parents on this board have been my sanity for over a year now. There is NOTHING someone (or more than one) haven't already dealt with. Everyone here is very supportive, knowledgeable, and non-judgemental. You're gonna love it here.

Now, on to your son. Personally, I would ask for a drug holiday from the Prozac. We had a horrible experience with that as well as with Risperdal. If you think it's the medication, take a break from it. Our psychiatrist told me it takes about a month for Prozac to totally leave the body. Ask to try a month without and see what happens. As you are probably aware, parenting an kid with Autism Spectrum Disorders (ASD) is so very different from parentling a neurotypical child. Have you learned to "read" his demeanor? What kinds of behaviors were you seeing before the medications? My Autism Spectrum Disorders (ASD) son takes Strattera for his ADHD (we have had no problems in the 7 years he's been on it but others here have) and that is it. We are working on teaching ways to handle the unexpected, transitions, disappointments, and expressing feelings appropriately.

Others will be along to share their experiences and expertise. In the meantime, {{{{(((HUGS)))}}}} to you.

 

[Renea]

Before the medication days, he had a lot of sensory issues. His clothes couldn't get wet, things had to be in perfect order, noisy places would have him with his hands over his ears and then lashing out at everyone. He couldn't handle going to any kind of "kid" function. School, birthday parties, even story time at the library were almost impossible to attend for a very long time. He really wanted to go and would be SO excited but once we would get there he would get soooo overwhelmed by all the noise and chattering of other kids. He would get really frustrated, cry, lash out and just get nasty in general until we would just have to get up and leave. Then he would cry the whole way home because he had to leave.

He was a major perfectionist. He still is but it isn't as debilitating as it was back then. He couldn't color in a coloring book without throwing a fit. He would accidentally color in spot with a crayon he didn't want to use and then he would throw a huge tantrum over it. Same thing would happen with drawing, painting, playing with legos.. Anything that might not work out perfectly was a big source of meltdowns. Once I found him crying non-stop while trying to draw a happy face on a piece of paper. The big dilemma?? He couldn't draw a perfectly round circle for the face.

He hated being held, picked up, hugged, etc. Even as a baby! I have so many pics of him under one year where I am holding him and he has his arms stretched straight out from me and he looks like he is pushing away from me in the picture! We couldn't console him when he was hurt or sick. If I tried to pick him up and soothe him, that would often make things 10 times worse.

He's really smart. He had a speech delay and didn't really start talking until he was two but he walked early. He seemed to need to be moving constantly. He blurts things out to complete strangers. Talks about EVERYTHING to them. Even personal things. We've been working on this and he is doing better about it. This time last year I couldn't even take him in the grocery store without him going straight up to the cashier and just starting to talk about whatever happened to be on his mind at the moment. lol

My biggest mistake as a mom has been not pushing for a diagnosis from an earlier age. I did bring up my concerns. I started talking to doctors when he was only about 8 months old. Before that he had just been a very fussy baby but by 8 months he wasn't mimicking sounds, turning towards us when we talk or even really seeming to notice sounds around him. I thought he had a severe hearing problem. doctor did a hearing test and said everything looked normal. When he wasn't talking by age two, we were referred to a speech pathologist and speech therapy began. Sensory issues and irritability were a big problem at that age but doctors just said it was probably just the "terrible twos" and him being frustrated because of his speech delay. By three, he was kicked out of one preschool. By four, he was banging his head on the floor at the new preschool, hitting himself, doing horrible with any sort of transition and telling the teachers he wanted to kill himself. At that point we took him to see a developmental pediatrician who said his problems were "neurologically based but not enough information to make a diagnosis at that time. Possibly in the future, with age, a diagnosis would be more clear" ???? And so on and so on and so on for the past few years. I really wish I had put my foot down when he was just two years old and demanded answers and demanded help.

So now here we are. Things are definitely better and the prozac has helped. I'm just not sure it's a best bet longterm but I have no clue what our other option is either. I have looked into Strattera and I'm keeping it in mind in case he needs to go off this current medication and go on another medication in the future. We tried Vyvanse and that made things horrible but fortunately only lasted the one day. We tried Intuniv for about a month and I feel like it took us a good six months to recover from the one month he was on it.

 

[TeDo]

It sounds like he is VERY much on the spectrum. Do NOT blame yourself. You did what you could with the information you had and professionals that didn't take your concerns seriously. My sons were just diagnosed this year and they are 13. difficult child 1 had signs as an infant but I am the one that minimized them. Now I could kick myself but it's wasted energy and won't change anything. You are in a better spot in that respect than I am. I have to deal with the Autism Spectrum Disorders (ASD) diagnosis AND PUBERTY all at the same time.

I would highly recommend getting him evaluated and treated for the sensory issues by an occupational therapist. If you can get the sensory stuff under some sort of control, you may find that you don't need the medications. That is just my very humble opinion but it sounds like the sensory stuff was the "biggie" requiring medications in the first place. We started seeing an Occupational Therapist (OT) this summer and I have already learned a lot and I am seeing some progress with difficult child 1. She has found things and helped with things that I didn't even know fell into the Occupational Therapist (OT) category.

The blurting is embarrassing but also teachable. Sounds like you are doing a good job in that area.

You are doing a good job. You are seeking answers when you don't have them. That makes you a great parent. Don't let anyone tell you any different, including yourself!

 

[Liahona]

Welcome! I agree that you are doing a great job!!! And your difficult child does sound very much Autism Spectrum Disorders (ASD). I'm glad the Prozac is mostly working for you. How big is the weight gain? I've heard of horror stories too, but what is your child's weight gain? Sometimes kids put on weight before a growth spurt. You might want to ask you pediatrician if he is due for a growth spurt.

I'm also glad the homeschooling is working for you. I really want to homeschool, but circumstances are not favorable for that right now.

 

[BusynMember]

Hi there and another person with a spectrum kid who thinks you did a GREAT job and got his diagnosed early! That should help him as he is already getting help.

If the Prozac has helped him that much, if he were my child I would keep him on it. As far as I know, and three of us have taken Prozac, it doesn't cause a child to stop growing. Kids do have spurts...they grow, they don't, they shoot up, they stop, etc. But it can cause excessive hunger and weight gain. That is an issue with all psychiatric medications except for stimulants, which likely will not help your son. Prozac is not as bad as some medications on the weight gain issue. It's kind of a "necessary evil" in some cases...this weight gain.

Glad you joined us. Please keep us posted.

 

[Bunny]

Welcome! I'm glad that you found us here. From what you describe, your son sounds like he is on the spectrum. And I agree with Midwest Mom that is the Prozac is working I would stick with it. My difficult child takes Risperdal and it works for him, but it also has the side effect of being an appetite stimulant. Add that to the fact that he's moving into that "boys eat you out of house and home phase" and there are times when he just eats like there is no tomorrow. He's always been what my mother used to call "a long, tall drink of water", so the weight gain on him is not as noticable as it would be on other kids.

It sounds like you are doing everything that you can for him and I commend you for homeschooling him if that is what works best for him. I don't think that I would have the patience for that.

 

[buddy]

Hi from ANOTHER mom to an Autism Spectrum Disorders (ASD) child! You get the point now??? you are so not alone! (huge smile and hug)

We are doing the medication dance at our house too. It is very tricky because the weight gain can also make the medication effectiveness change of course. TeDo and I and many others (and many before us) are going through the puberty growth phase which really adds a "whole nother" dimension to this dance. My son is on Prozac too and it has not treated the anxiety it was meant to treat, but did help him access his emotions more appropriately (before that didn't sincerely hug, say I love you, etc...it was kind of rote). But as his aggression has changed lately I am wondering about whether or not we need to ditch it to see if it would help. Can always go back on it if we need to. Some medications you risk not getting as good of a response if you go back on. I haven't heard that about SSRI's but maybe others here have. It does happen with AP's and seizure medications for some.

Your post says to me that you are very in touch with your difficult child which makes his chances of going through these rougher patches and coming out the other side in a better place, so much better. I know for me, even though I know it is a rollercoaster ride, and there has always been UPS after the downs....I am always afraid that "this time" the roller coaster ride will be come a little train going around the park....in circles. I do a lot of self talk, and have really learned in just a couple of months that it is OK to ask for support from this board. I can't tell you enough how happy I am you are here and hope this place will be as valuable as it is to me.

 

[Renea]

Thank you all so much for the warm welcome! I look forward to getting to know all of you better.

 

[InsaneCdn]

Growth curves are misleading sometimes. And yes, I understand the panic attacks we get when difficult child has "issues" that appear to be side-effects of medications (but not necessarily... major nausea episode turned out to be a mild flu...).

Weight gain and growth. He's 8. I remember the see-saw we were on. Feet would grow. Then he'd put on weight. And just about the time we were worried about the weight, height would start, and I'd be buying pants every two weeks. No kidding. (He's doing that again now!) And the medications he was on had the side-effect of suppressing appetite! So I couldn't pin my worry on the medications back then. So... the cycle could be "normal but not average" if that makes sense... that's what they said about our difficult child. Most kids are more subtle about the see-saw, but it was still normal.

Welcome to the board!

 

[LittleDudesMom]

Renea,

A quick pop on the board this morning before leaving for work and wanted to stop and offer my welcome as well! You've found a wonderful place for support, information, and just sharing with other parents who have "been there". We look forward to sharing with you.

Sharon