Newbie with Lots of questions :)

[judytor]

Hi everyone I'm Judy. I'm so happy I found this place as I've been looking for a support for a while now

Our ds4 is quite a little puzzle. He was born into our hearts when he was 8 days old. He was prenatally exposed to drugs and alcohol and his birth mother had a history of mental illness and addiction.

When ds was about 15 months old, he began exhibiting some pretty severe behaviors. He would tantrum over EVERYTHING if he didnt get his way. He actually began hitting me when he was about 7 months old

His behaviors in the last couple of years have included but are not limited to:

running away from me in stores, parking lots, etc
running into the street when we're at home and asking me if it scares me
hitting, kicking, punching the dogs
Using phrases like "I hate you" "You ****" "I want to kill myself"
throwing toys and hard objects both impulsively and purposely at me, the other children, (even a baby we had been watching).
spitting at me and the dr's
peeing on purpose when he's mad (he'll go pee on his bed or on the floor just to "get back" at me
biting his fingernails excessively (to where he's bleeding a little)
making animal noises when he's embarrassed and hiding under furniture
severe tantrums over everything
impulsive as all get out


He is seeing a psychologist right now for a neuropsychologist evaluation. He also sees a pediatrician who specializes in children with severe behavior. He is now on Risperdal and Lexapro (much to my disliking).

Right now....the dr's are stumped. (we've even seen a geneticist to rule out fetal alcohol effects and we have an appointment at a psychiatry clinic up at Cedars Sinai in Los Angeles but that's not til August)
They are thinking this could be bipolar but are leery of giving such a huge diagnosis.
His bio mom may have had bipolar.
So far he has diagnosis's of ODD, ADD, Generalized Anxiety Disorder (GAD) , and possibly conduct disorder.

My questions are.....does this sound like it could be bipolar in such a young little man?

The school district is not helping us yet because it's the end of the school year and they told us to come back in Sept. (they evaluation'd him last year and he was developmentally on track and totally held it together for his evaluation session so they didnt offer him services). How do I get the school district to see that my son needs help? His Dr. told me he needs to be in a special day preschool.

Lastly (for now), He absolutely CAN hold it together in certain situations. He does well one on one. He is able to behave and have fun and take turns but then without warning, he can get overloaded and snap. Does anyone else have a child like this?

(I'm also starting to notice a possibility of some learning problems. He is not color blind (had him tested) but he cannot recall the names of the colors RED, Blue and GReen......he also has a hard time with opposites)

Any input, advice, anything is appreciated here.....I'm a tired mama who spends every second of her day trying to keep ds safe.....(we also have three other children...one of which is legally blind....so yeah, I'm tired...lol)

TIA

 

[BusynMember]

Hi there.
Nobody here can diagnose your child, but I adopted a child who was prenatally exposed to drugs/alcohol and I have a few tips.
First of all, watch him and keep having him re-evaluated. At four, I think a neuropsychologist evaluation is probably best, although it may not be conclusive. It IS the most intensive evaluation he can get. Beware: Because my son was the birthchild of a drug addict, the doctors jumped both all over ADHD and bipolar. However, he has neither. He is on the high functioning end of the autism spectrum and is really doing well. Our adopted kids, with complicated birth histories, are very, very VERY difficult to diagnose. However I'd RUN not walk from anyone who diagnoses a four year old, with his history, with CD. That's not appropriate.
Since his birthmother used drugs, she also drank. He could have fetal alcohol spectrum problems, which is hard to find and diagnose. These kids tend to not learn "right from wrong" and have "swiss cheese thinking" as in they may know the alphabet one day, then completely forget it the next, then know it again. They actually have organic brain damage. There are other possibilities.
He COULD have early onset bipolar (but I'd be REALLY careful of that--very strong medications and it mimicks other things) or autistic spectrum disorder (high functioning obviously).
in my opinion you need to have a total evaluation for him and to get him into "early interventions" as soon as possible. Can't tell you how much this helped my son.
However, if you seek out a neuropsychologist, she SURE he knows how to spot alcohol affected problems too. We took my son everywhere--even to a private clinic that specializes in complicated kids--and finally got the right diagnosis. and help. But it can take time, so you may as well start now. I would not assume that his first diagnosis. is correct nor that it will be his last one. And with a child like him, I wouldn't trust a regular therapist, psychologist or pediatrician. He needs to be watched closely and evaluated often and helped with his symptoms NOW.
I wish you luck. This can be a very tricky ride. Nobody knows what pre-natal drug/alcohol exposure can ultimately do, and it is much harder to diagnose a child like this than another child. The only info you have is from the bio. mother and she could have lied. We have little info on son's birthmother other than she was on crack in the hospital and left him there, not exactly giving us much to go on.
How has his early development been? Did he talk/walk/make good eye contact on time? Potty on time? How is his speech? Take care and good luck. Be prepared for a long trip!

 

[smallworld]

Welcome!

You've gotten some good advice from MWM. Others will be along soon to offer their thoughts as well.

Just wondering: What doses Risperdal and Lexapro is he taking? How is he doing on the medications? Is he better, worse or about the same?

Again, welcome.

 

[judytor]

Thank you both so much for the advice.

I just wanted to clarify that we actually have been pursuing early intervention since he was 15 months. He had a psychiatric evaluation done prior to his adoption (he was 2 at the time) He was diagnosed with sensory processing disorder (SPD) and Regulatory disorder.
He has seen a couple Neurologists who told me he has "pre adhd". I think that's bologna because he doesnt present with typical adhd symptoms.

We just saw a geneticist a few weeks ago to rule out Fetal Alcohol Effects (FAE) and the Dr. told us it couldnt be fetal alcohol effects because he doesnt have ANY physical anomalies and had developed normally. (I know that contradicts other research but this dr. has published journals and works for a research hospital so it's kind of hard to dismiss him )

Let me just say I have spent the last 3 years researching about drug and alcohol effects, etc and I am stumped and frustrated. The school district is giving us ulcers (literally) because they wont offer him preschool services because he tested well last year. I wanted to have him reevaluated this year and they told me to call back in Sept because they are busy.

We saw one neurologist who told me that my son is "spoiled" and doesnt get enough discipline (insert screaming smiley here).

I am exhausted, frustrated and beyond the end of my rope. We just had to decertify from our FFA and move our foster daughter because ds's behaviors were threatening her.

Oh, the dose of Risperdal (now..it started out much smaller) is .7ml's in the am and .7 in the pm and 2ml's of lexapro in the evening.
This is from a mom who tries to eat as organic as possible and steers clear of allopathic medicine when possible....so I didnt go into this lightly

At first we saw some improvement and he is definitely sleeping better....but now it's almost like he's "breaking through" the risperdal...which is why they JUST started him on Lexapro last week. The dr's we are seeing now are wonderful....but they are stumped. He sort of looks autistic but doesnt fit all the criteria. He sorta looks adhd but doesnt fit everything......he is impulsive, has high anxiety, tantrums, has perverse behavior, etc.......
He looks to me like he has fetal alcohol effects.......but that's been "ruled out" by this leading geneticist so now I feel we're at a loss again.......

I guess I came here to vent too in the hopes of getting someone to say "I know EXACTLY what you mean" Thanks for listening and feel free to comment on anything......I can use all the input I can get

 

[BusynMember]

I want to tell you that you can only rule out Fetal Alcohol Syndrome. There is no way to rule out "effects." My son had genetic tests too.
Just keep on trying--that's all you can do.
I'd worry about those medications for a child so young. Are they helping.

 

[SRL]

Hi Judytor, and welcome.

Did they test for Fragile X?

 

[judytor]

Hi Judytor, and welcome.

Did they test for Fragile X?

Thanks Yes, they have tested for fragile X and we're waiting for the results .....

 

[meowbunny]

I don't care how many papers this man has had published -- there are NO physical effects to see in Fetal Alcohol Effects (FAE). Fetal Alcohol Syndrome (FAS), yes, Fetal Alcohol Effects (FAE), no. DUH!!!!

Sometimes I really would like to smack these so-called professionals to get them to wake up. He's spoiled? Well, good. He should be spoiled. All kids should be spoiled -- it's part of loving them.

If I were dxing, my vote would go towards Fetal Alcohol Effects (FAE). It certainly fits his behavior patterns. Almost ADHD, but not. Almost autistic, but not. Almost bipolar, but not. ..... Fetal Alcohol Effects (FAE) is frequently "almost but not" for many things. The genetic tests are good at showing Fetal Alcohol Syndrome (FAS), not so good at Fetal Alcohol Effects (FAE). It can basically rule it out but it rarely can say that it exists.

If it is Fetal Alcohol Effects (FAE), drugs are not going to help. They can help some of the behavior but it will do nothing for the Fetal Alcohol Effects (FAE) itself. It takes extreme behavior modification.

Good luck in your battles. I hope you get some concrete answers. It will help a lot in your treatment plan and fighting the schools for help. However, if you don't, go with your gut. It will be right more often than the pros. You are with him daily, you observe his behavior daily, so do what you feel is right for him and you. There will be times this will be diametrically opposed to what his SW, therapist, school counselor, psychiatrist tell you. Try their way. When it doesn't work, try yours.

In the meantime, welcome aboard. Glad you found us. Hope we can help.

 

[house of cards]

My difficult child had the same problem getting into the preschool disabled classroom. I went to a neuro and had a report written where they specially mentioned how appropriate he would be for a small theraputic preschool. The doctors report got my difficult child in. He is now 10 and no one talks of him not being in sp ed anymore. I could of had him in headstart but I knew he needed the small class size very badly. If I were you, I would level with the docs and tell them you are trying to get him in the program and can they write a report you can take to the school, good luck.

 

[judytor]

I don't care how many papers this man has had published -- there are NO physical effects to see in Fetal Alcohol Effects (FAE). Fetal Alcohol Syndrome (FAS), yes, Fetal Alcohol Effects (FAE), no. DUH!!!!

I thought the same thing. I even reworded my question a few times while we were there asking him if the cocaine or alcohol could have damaged his CNS enough to cause these sorts of problems and he kept insisting that drug or alcohol effects are not present UNLESS there is SOME physical anomaly. He was also basing his conclusions on ds4's bio mom's mental history. We know she suffered from depression (possibly bipolar).....so he thinks it is more likely this is a mental health issue

I agree with you. It's my gut feeling that many of ds's challenges are due to Fetal Alcohol Effects (FAE)......it's just hard to convince others around me when he hasnt been officially "diagnosed" with it, yk?

So how many of you are on heartburn medications? lol...

 

[SRL]

If this were me, for the school front I'd push whatever specialist I could to give any reasonable in the neighborhood diagnosis and write a letter leveraging for as much as possible in terms of services. Sometimes--not always--walking in with a letter from a doctor stating the child has ABC and need XYZ for services will convince reluctant districts to capitulate. I'd do that because for the most part Special Education preschool is very similar in terms of services for most of the disorders we see come through here. (Exceptions might be more speech, more Occupational Therapist (OT), extended summer services for Autism, etc.). I know this isn't what we'd all want but take what you can get to get school services established and then continue researching, keeping a journal, taking video, etc. so that one day you can hopefully turn this working diagnosis into something that's accurate.

Did they do an EEG--I now he's pretty little but we do see some very extreme behaviors in young kids with seizure disorders.

 

[judytor]

SRL~ Thanks for the advice Actually we are nearing the end of an 8 session neuro-psychiatric evaluation and we should have a report in hand within the next few weeks. I was planning on taking that to the school district however, now that it's summer, I was told (by the preschool sped dept) that I need to wait til Sept to ask for another evaluation.
I'm going to send a certified letter anyways with our request.

We havent had an EEG done. The pediatrician doesnt think it's seizure related......I'm wondering if we should push for one anyway?

 

[SRL]

Did the preschool do a formal evaluation or just a regular preschool screening?

 

[judytor]

They did a formal evaluation.

We actually just got back from the Dr. and she is STRONGLY suggesting taking ds through the ER up at UCLA. She is concerned about his behaviors and feels the Risperdal isnt doing enough. She also is concerned about our other children in as far as what they've had to "put up" with

I honestly dont know what to think at this point......hospitalization seems so drastic but the Dr. thinks it might be what we all need to get ds the help he needs sooner rather than later

 

[SRL]

I agree with sooner rather than later. This is pretty unusual for a doctor to recommend this route at a young age so I'd take the recommendation as a serious one. Just an FYO--it's more common for these little guys to get into a partial hospitalization program, all or half day and then come home at night.

Did she tell you that pediatric patients she's sent there usually get admitted? Very often we're hearing with the younger ones that they are observing them for a number of hours in ER and then releasing them. Frustrating, not to mention expensive! One thing it can do for you is put you on the short list to see a psychiatrist or for various programs.

Yes, I'd request an EEG--get as many bases covered up front.

 

[SRL]

Oh, I wanted to mention that a lot of parents here have used Melatonin 30 minutes before bedtime with no side effects.

 

[smallworld]

I agree with SRL about taking the doctor's recommendation seriously. It may very well open doors for more intensive help.

Good luck and keep us posted.

 

[judytor]

Thank you so much for your input I truly appreciate all the great responses.
We had a rough afternoon and wound up calling ds's psychiatric to see what she thought of the dr's recommendation. She agreed it was a good idea to take him to the ER.
When husband came home, I talked to him about it as well. He doesnt think we should go quite yet. He thinks it will cause way more trauma to ds to be away from us for any length of time than to try to get into a psychiatrist within the next week or so. I cant think straight so I'm going to sleep on it and see what tomorrow brings.
The hard part is, and I'm not sure if any of you can identify with this, but we have "normalized" ds's behaviors. Yes, he got ahold of a knife this morning and yes he waved it around and laughed about it....but he wasnt going to stab me with it.....it's a game to him.....it's a "lets see what kind of reaction I can get from mommy". The thing that gets me is that how far is he going to take that game? I mean today he's not going to try to hurt me but what about in a few months......
We've lived with ds's behaviors for so long that it's just normal for us to watch him throw a fit if he doesnt get his way every second of the day. It's totally normal for us to say to the other kids "Please just let N. have it....I know it's yours but just let him have it for a little bit". If we try to force the issue of sharing or force our will on him, he flips out and it escalates into a full blown tantrum/rage. I'm rambling.....I guess I worry that I'm making it out to be worse than it is but then when I describe situations to the psychiatric or the dr., they reassure me that those behaviors are NOT normal and they ARE concering. ......ack.....I'll keep you posted on what tomorrow brings Thanks for the support

 

[totoro]

Hi~ I just wanted to let you know that I was thinking about you and your family tonight. I hope whatever decision you make helps comfort and add some calm within your house.
Yes, we understand... I wish none of us did. We are here for you.

 

[SRL]

One thing to mention: when on inpatient most kids aren't as traumatized being away from home/family as you would expect. The staff really knows what they are doing, they're under 24 hour watch so they have constant supervision and attention, and often they wind up feeling safe and secure. There are exceptions, of course, but often it's the parents who feel traumatized.