Help I need help with my 4 year old

[karif]

I have posted here before a while ago. Things were going ok for a while but now I am in crisis. Josh my difficult child, is diagnosed with Pervasive Developmental Disorder (PDD), Intermittent Explosive Disorder (IED), odd, and pica. I really think that he has much more going on. His birth mom did meth and crack. He was severly negelcted before God placed him in our loving arms. We have been to several doctors including therapy called pcit training or parent child interacitve therapy. This does work to some degree but it is not very effective anymore. We have been on Respridol and Depakote for about 9 months now. We have tried several other medications also. The most recent had to be the worst, Lexapro. It made him very anxois, angry and fearful. I couldn't even leave the room he was in. It has taken a week to get it fully out of his system. Is is also regressing with skills and language. I finally got an appointment with a devlopmental specialis at UCI on Tuesday. All doctors so far think he has some gentic issues also but they don't know what. I was wondering if anyone could shed some hope or light on my situation. Also when I was on here once before someone sent me a link to a form that I should keep that has all my difficult child info on it . I really need that sample to type up for tuesday. Thank you all and blessings.

 

[FlipFlops]

I don't have any experience with anything you are going through, but wanted to wish you good luck. I know someone will be by soon that will have something useful for you. Hang in there.
PJ

 

[BusynMember]

Hi. I remember you. I'm the one with the fifteen year old (almost sixteen now) that was born under the same poor circumstances...drug exposure. I think I told you that it would be a long and rocky road and that ADHD or ODD wasn't the answer here. I'm not surprised he was diagnosed with autism as I was told this prenatal drug use can trigger it. I have a pretty positive post for you. Well, it will get more postiive as it progresses...lol. I also want to dose it with honesty, then hit ya with the good stuff.

Nobody can make a prognosis for your child. A lot depends on whether or not there is also fetal alcohol damage, which often does not show and will not show up on a genetics blood test. It's just kind of obvious as time goes on--the child repeatedly just doesn't 'get it' (as in life). We were fortunate that way as our son was not affected by alcohol, although he did ingest it pre-birth.

The best hope for your child is early, intensive intervention, not medication, although THAT can be a part of it with some kids. The biggest difference will be if you can get your child into Early Childhood and keep it up. I think seeing a developmental pediatrician is a good idea. A neuropsychologist would also be a good idea.

I think you have a long journey ahead of you with an uncertain future, but you can help his odds. My son is REALLY doing well considering how he started out. We truly thought he might live a hopeless life, and that is not happening AT ALL. You want hope? This child got all A's and one B on his report card. Yes, he gets some special help (although not that much). Yes, he still has high functioning autism. But he also has some friends, intelligence, and our goal for him now is a two year college. He may need some assisted living as an adult, but he'll be 80-90% on his own.

You made a difference in the life of a very needy child by bringing him into your family and loving him (I know that love--I feel it for my son). He is going to do MUCH BETTER than he would have done if he didn't have you. Take it day to day and find out which interventions he is entitled to through the school and community and put on your suit of armour because you may have to fight for his services. But it sounds like you are up to the task. Good luck!

 

[karif]

Hey thanks for the encouragement I need it. Blessings to all.

 

[karif]

ok so we were at a graduation party tonight. I planned not to go but my neighbor encouraged me to go. She planned on taking the boys with her so that my husband and I could enjoy ourselves. While we were there my difficult child got inraged and tried to go after a little girl for no reason. He said to her " I am going to kill you". Then tried to hurt her. We stopped him before he could. Then he said he wanted a gun so he could pretend to kill people. He is only 4. I am so very sad that he is doing this. I don't even know what to say to him or how to discipline him for this. My neighbor left with him then. I had to go talk to the girl and her mom. I am just so tired of explaining things.

 

[SRL]

Hi Karif,

Having a child in crisis like this is one of the scariest and most helpless experiences a parent can go through. Often they start downward spiraling due to some trigger (such as school anxiety or medication change) but sometimes parents aren't even able to put their finger on exactly what happened. Hang in there--I definitely want to give you hope but it takes patience and persistance.

The parent report you are looking for is right here.
http://www.conductdisorders.com/forum/showthread.php?t=10

If you've taken any video of the tantrums or other episodes, that's always good to take in as well.

If the doctors all think he has some genetic issues then shame on them for not referring you to a geneticist. Be sure and mention that to the developmental physician you're seeing.

When kids start to downward spiral--especially the little ones--it's common to see regression and/or new issues related to their disorders crop up. With these little guys you really need to take the same approach you do when you have a sick child in the house who is ornery and out of sorts and needs to get over this hurdle before they're up to speed again. Lay low on the expectations, keep everyone safe, supervise him all of the time (and I do mean all of the time), don't ever leave him alone with siblings or other children, and lock up anything that could be harmful such as knives, nail files, tools, pens, and if you keep any weapons in the house it's not a bad idea to store them off the premises. If at any time he becomes so out of control you think he's in danger of harming himself or others, transport him to the nearest ER.

Many parents will find that they won't be able to go places with their child at this time so tag team off if you can. Your goal right now is to keep him as calm as possible and for a lot of kids meeting up with the unfamiliar and unexpected is too much pressure to handle. If the new doctor can find the right medication things may turn around fairly quickly but sometimes it takes time for the kids to undo the behaviors that became habit during the downward spiral. Some children at this stage may benefit from pediatric day programs at hospitals so you might want to ask the doctor about that.

It's important to take time for yourself because nothing is more draining than a child in crisis. Take shortcuts like using paper plates and asking friends to do that extra errand for you. Get out of the house with a girlfriend or do whatever recharges you.

Hang in there. I hope the doctor you see on Tuesday will have some insights for you.

 

[tiredmommy]

You've gotten some good advice and encouragement so I'm just going to send a big {{{hug}}}.

 

[karif]

We were on our way to our appointment at the UCI behavioral pediatrician, on the freeway, when they called and cancelled the appointment. The doctor is out sick. I am do frustrated and disappointed. Yes I know you can't help it when you get sick. Now we are back on the waiting list in hopes of getting in sometime before September. The receptionist was not very sympathetic. She said " well I put you on the top of the list I really can't do anything else". I know she can't I am just mad and frustrated. I dropped him off at school this morning to another anxiety attack and kicking the teacher. Crying saying mama I want you not her. What am I to do?

 

[BusynMember]

Hon, ask the doctor's office to put you on the cancellation list so that if somebody cancels, you can get in sooner! (((Hugs)))

 

[SRL]

Call your pediatrician and ask him/her to make a call to push for the next available appointment.

 

[karif]

We are on the cancelation list and I have already asked the pediatrician to call. She said that just to be patient and we will get in. His mood is better today but he still had a hard time going to school.

 

[SRL]

If my child was in crisis and my pediatrician was telling me to just be patient when I was looking at an appointment 3 months away, I might be shopping for a new doctor. For a child who wasn't in crisis, that's fine, but if anxiety and behaviors are reeling out of control the pediatrician should be stepping up to the plate to give you some help.

 

[Giselle]

Is there any way possible to restructure your life such that he doesn't have to go to school/daycare or whatever he's going to at this point? Often it's just not possible, but sometimes there's a way. He's only 4, and lots of "normal" boys really struggle with maturity and rules at that age, and act out - setting up a negative experience with school in the future. From what you describe, and with his current psychological issues on top of that I can't imagine it's a good experience for him or others for him to be there.

 

[karif]

Here is the whole story. We have an appointment with UCLA on August 4th to see a dr. that specializes in children that have been drug exposed. We also have testing with a lady this Friday that is the Special Education director for ucr. She tests children and adults to find out what diagnosis they might have. We do have appointment's I am just frustrated with what happened yesterday. As far as going to school goes, I home school my other children. The decision to put him in the Special Education program at our local school district wasn't an easy one. I don't know what the right answer is. Do I let him give into his severe anxiety or make him go to school? He was fine yesterday after about an hour. They had water play and fun all day. He is already getting anxious about tomorrow though. Life sometimes is exhausting.

 

[BusynMember]

Hi again, Karif.
You have a few options.
You can pull him out and homeschool him until you get a diagnosis or keep him in Special Education. I'd probably keep him in school if I felt it was helping him. My bet, if I was taking bets (and remember that I'm a layperson) is that whatever is wrong with him, part of it is that he is on the autism spectrum somewhere (thus the severe anxiety). My son, with his similar birth history, is on the spectrum and got much better with interventions. He is now almost sixteen. Autism spectrum disorder is common in drug/alcohol exposed kids, but if that's the main problem then it can be helped. Hopefully it is. (Again, I'm just a layperson with an opinion).

Good for you, going to have him tested due to the drug/acohol exposure! That should tell you a lot. You're a really good mom.

 

[karif]

We went to the therapist today. We were supposed to get evaluated by the lady from UCR. I say supposed to because we went there and she was sick. I can't do anything but laugh and sigh at this point. The therapist did give me some good advice. She said if he doesn't want to go somewhere tell him that he doesn't have to go. This is a time to build trust and not to force him to go somewhere he doesn't want to go. She said it should resolve quickly. I hope so.

 

[susiestar]

Wlecome back! I have been wondering about how you were doing (all of you).

I am sorry that so many appts get cancelled because illness on the doctor's part.

I agree that I would be the loudest squeaky wheel until the pediatrician helped get us an earlier appointment with BOTH of these people. It is disgraceful to keep giving you the runaround this way.

medications are such a tough call, but they can make a HUGE difference, even in kids on the autism spectrum. medications are nto given to cure or "fix" the problems but they can help treat the symptoms so that you can connect with your child. They truly help with my son. Night and day type of difference when he forgets his medications.

I agree fully that your son needs intensive help ASAP and for a long time to come. Push whomever gives you results to put recommendations IN WRITING for you. That way you can use it with the school if it will help.

I hope you are remembering to take care of YOU. If you get sick then the entire ship crashes into an iceburg! So take time for you - visit friends, read a good book, watch a tv show or movie that you like, anything that recharges YOUR batteries.

Big hugs for all of you!

 

[susiestar]

I forgot to add this thought.

You say that the WW (walking womb) used meth and crack. If she is doing those, she is drinking. That is just how it is. And even ONE binge can cause permenent hard to the child. So be sure that you listen to your instincts and pursue treatment for that if you think it is needed - even if the "experts" say it isn't so.

 

[karif]

UCI called yesterday and made an appointment this friday. I am not holding my breath. I will let you know what happens. We are meeting with the school pshyc. tomorrow and the teacher. I am not sure what that will accomplish because the teacher refuses to see that he truley has a problem. Basically her answer is he is not severe for the more structered class but is having trouble in the class he is in. Oh well hopefully if we ever get an accurate diagnosis it will help.

 

[karif]

Had IEP today with teacher and school psyhcologist. I guess it went alright. I met his teacher for next year. She seems like a nice lady. They are going to send a behavior chart home everyday. They are also going to do a visual schedule and help me do one for home. I wanted to keep them in the loop on what was going on with him. I will keep everyone posted on Friday.