Hi I am new to the site and need some advice

[ivas611]

I have not quite got the abbreviations down so pleae bare with me...

My DS will be four. We have always had a hard time with him since his premature birth. He attended a nursery school at two and did not adjust well. We were told by the school and family members that since he was an only child around teenages that he was just spoiled. By three, the school tried to work with him but he became increasing aggressive and difficult. I brought him to the psychiatrist and he suggested the book "The Difficult Child" and a child-self esteem program. That was a waste of time and money.
Since he had been care for by my sister in law (since birth) and she was losing patients with him, my husband and I decided to place him a dare care when at three. That was a mistake, he lasted a week. I was told to have him evaluated by my district and see if he could qualify for any of the special education programs. The tested very high for his age in language and comprehension but had delays in all of his other areas and required Occupational Therapist (OT) and psycholgical threpay. He is in a class with 10 boys and 5 teachers. His behavior has gotten worse. He does not socialize with the other children, he does not like being touched and hates anyone touching what ever item is his obsession that day. No transitioning capabilities, agressive, hitting, biting, cursing, manipulative, kicking, punching... I could go on for ever. I have not even touched upon what we g through at home. Destorys very thing and anything. Wholes in walls, breaks furniture, undoes the child locks and we find our things thrown on the front lawn... That is just the the beginning. He has NO fear.

Since he has started this school (which is 5 days a week for 6 hours/day) he has not sleep through the night. He is in bed at 8 and up by the way 2-4 AM. His behavior has gotten so bad that I have to change my work hours since I could not find anyone (including family) to watch him while my husband and I work and the school social worker requested I start looking at alternative since behavior modification classes, group and videos have not made a bit of a difference. 1,2,3, Magic is a joke in my house. I have a in home parenting counselor coming in a month, not that I think it will help and I had to video tape his episode for the school social worker and psychologist. They want to make sure that I am following the behavior management program they came up with and not making things worse by yelling or giving in.

I started taking him to any doctor that I could think of from allergists, ENT, sleep specialists and psychiatris and neuologists. After all the testing the psyc (the final doctor) said that my DS has ADHD, sleep disorder, possible mood disorder and possible mood disorder. The is recommending Clonidine for the sleeplessness and hyperactivity. Then we will see how things go. My appointment is Friday afternoon. To start the medication.

I can not seem to find any real information on the web and I stumbled on to this site. I am very nervous about this. Any advice would be very aprpeciated.

I have nothing against medication, but I wanted to be the last resort and rule everything out first.

 

[SRL]

Hi ivas611 and welcome to our forum. I read through your post and heaved a big sigh because I know there are going to be plenty of parents here who can relate to what you're going through. Nothing is harder than seeing a child not be able to function in their world.

The two specialists we typically recommend (in addition to speech and Occupational Therapist (OT)) to parents with young children are developmentaland behavioral pediatricians and pediatric neuropsychologists, neither of which I see on your list. Not that any specialty has the corner on accurate diagnoses, but these two tend to generally strike closer to the mark. Developmental peds take a widespread medical approach and the pediatric neuropsychologists do a lot of testing.

We are only parents here--definitely not diagnosticians--but what went through my head in reading your description was Asperger's Syndrome, which is the highest functioning form of the Autistic Spectrum Disorders. It gets missed or misdiagnosed very frequently by medical people when children are younger, because the kids are very articulate (unlike the rest of the Autism Spectrum Disorders (ASD)'s in which the kids show early speech delays). Kids with Asperger's Syndrome have "Little Professor" tendencies but also have a variety of other issues such as socialization, obsessions, sensory issues, anxiety/transition problems, etc. Did anyone bring up this possibility with you?
Here's a link about AS:
http://www.aspergersyndrome.org/

If this rings a bell at all (even if it doesn't fit completely) I'd suggest further evaluation.

Most of us recommend the book "The Explosive Child" by Ross Greene to give some parenting strategies. It sounds like your little guy needs soma major stabilization so lay low on everything but safety right now and be sure and check out the thread at the top of this board on the book. This will be a very different approach to parenting than any you've ever been exposed to before, but when nothing else is working, sometimes the best thing to do is toss out everything but loving the kid and keeping them safe in order to help them to a place where they can function with more "normal" parenting.

As for sleep, you might want to check into a natural product called Melatonin that many parents here have found helpful without side effects. You also may want to get a book called The Out of Sync Child by Carol Kranowitz to read up on sensory issues. I found weighted blankets and a mummy sleeping bag to be helpful for sleep with my kids.

Hang in there and lay low on discipline for now because it's likely he really can't help what's going on. I know it's exhausting.

 

[BusynMember]

I would take him to a neuropsychologist or a Developmental Pediatrician (I personally prefer NeuroPsychs). With the dislike or touch and uneven academics, I am thinking he could be on the high functioning autism spectrum (Aspergers). Here is an online test you may want to take to see how he scores. I would want to look at that before I jumped into thinking it was a mood disorder or ADHD (ADHD is usually the first diagnosis. given, very often hardly the last). Warning: School districts aren't the best at diagnosing things. Ok, here's the test:
http://www.childbrain.com/pddassess.html

 

[SRL]

One comment about the test at Childbrain: it's not accurate for kids who don't have speech delays. But it will give you some ideas of traits to compare.

 

[ivas611]

Thank you for both replies, SRL and MidwestMom. I really to appreciate the advice and the websites. I have appointments for the Dev pediatrician and Dev Neuo in March (earliest I could get). I am playing the insurance game right now. The doctors are on the insurance website, but no one seems to take my insurance.

I am getting tons of pressure to start him on the clonidine. Basically from those who have given up on him. It kills me. So far Autism Spectrum Disorders (ASD) has been ruled out but, I am not 100% convinced in that and the worst part is I had to bring it up to them. In the beginning, I spent hours on line looking up all of his different "symptom". That and Pervasive Developmental Disorder (PDD) were the only two that really seem to fit. My appointment with the psyc is Friday. Maybe I can see if I can get an earlier appoint with Dev pediatrician/Neuo Thanks again. I am so glad that I found this site. It is comforting to know that I am not alone.

 

[SRL]

Call the developmental pediatrician's office and ask to be put on their cancellation list. Appts don't open up very often but sometimes they do.

I'd also suggest contacting your closest Autism Society chapter. Parents there will give you the best options in your region for evaluation to rule out or confirm a diagnosis. Sometimes there are options out there (such as Autism Clinics on university campuses) that you might not be aware of.

http://www.autism-society.org/

Sadly, all too often it is parents that have to push doctors for a referal. They did a study a few years back and found that in half the cases it was parents who found out about Autism from other parents, teachers, or other resources.

No one, of course, can tell you what to do about the clonidine. Sleep is such a critical part of behavior management so it's important to address, but to address from all angles. Since the sleep issue worsened at the same time as starting the new school, it sounds like there's an anxiety component. Have you talked with the teachers about shortened days and then gradually increasing back to full time as he handles it better? Continuing to do the same thing when he's not functioning well will often cause a child to destabilize even further.

 

[BusynMember]

They ruled out Pervasive Developmental Disorder (PDD) for my son too. The fact is, very few professionals (other than NeuroPsychs) really know much about the high functioning kind. My son DOES have Pervasive Developmental Disorder (PDD), in spite of the early professionals pooh-poohing it. And he's gotten a lot better since he's had the right sort of help. I personalky, knowing what I now know, would never give into pressure regarding medication. I'm sorry I put my son on his so soon. They gave him ADHD medications and that wasn't even his problem, although they said it was at the time. I knew it was Pervasive Developmental Disorder (PDD) (sigh). So now I tell everyone to go to NeuroPsychs (which is different from a psychologist or a neurologist). They do very intensive testing and are more accurate than those who just guess by listening to us. JMO...good luck!

 

[ivas611]

I spoke to my reg pediatrician and he said a neuropsyc would not be able to help my son at this point (too young). I am going to look for one anyway. I did call the dev pediatrician and dev neuro to be put on the cancellation list. I also have an appointment on Monday for a nutritionist that has an alternative approache to behavior issues(referred by a friend of my mother). But, they were a bit pushy on the medication factor so I am a bit nervous. The dr is also a chirpractor, that makes me a bit more nervous that he does not really have the background (a dabbler). I do not mind exploring the holistic side but, I had a bad experience with a nutritionist that when I was pregant with my son. I had gestation diebetes and the diet I was put on made my diabetes go out of control and I went in to labor and gave birth a month and a half early. But, anything is worth exploring. I just wish my insurance covered it. This might be an expensive option but, it might be worth it in the long run.
Thankfully work has been slow enough that I am able to do research on the internet and make calls to doctors.

 

[SRL]

If you're interested in alternative approaches and are thinking possible Autistic Spectrum you may want to google DAN doctors. They go with alternative assessments, supplements, diet, etc. Some people swear by them while others find their kids aren't helped at all going that route.

 

[ivas611]

We were at the psyc this evening... I asked a ton of questions that I did not like any other answerhs. We settled on dexedrine (not sure if I spelled that right) and in three weeks, melatonin for sleep. I am still not thrilled. While everyone (husband, other family members and school are looking for a quick fix, I am just want him safe and healthy.

I finally got in touch with my friend who is a pediatrician in NC to see if she could recommend someone she might have crossed paths with while medication school here in NY. I want to follow up with the nutritianist, I know that's a long shot but, I can't see how it can hurt. At worse, he has better diet and eating habits.

Good news is we have had two good days with minimal outbursts and I am so thankful for them. Maybe a good star alightment (lol) I really miss enjoying him.

 

[ivas611]

Thanks again SRL... I will looking to the DAN docs.

 

[ivas611]

Today is day two on the dexdrine... OMG... My difficult child is sooooooo emotional!! He will get fixated on something and it is impossible to transition or even talk to him. He is more aggressive too. He threw a chair across the room and all of his draws out of his dresser. We removed the draws and the chair from the room. The dresser is bolted to the wall and he managed to pull the dresser from the wall and flip it over! All while screaming hysterically and cursing at me! He also only had three hours of sleep last night and a half an hour this afternoon.
I am thinking about try to give him a warm bath and some benydril and hopefully he will sleep. Has anyone had any experience with this medicine? The doctor wants me to wait three weeks before starting melatonin for sleep. I am not sure he will make it to the end of the week.
The first hour is the worse! His is so emotionally irrational, crying hysterically (mirrors PMS to a tee) and then he won't get off the couch. Then the fixation and the aggression begins. The agression just started today... maybe I gave him too much?

 

[SRL]

I would call the doctor first thing tomorrow, and not give him another dose until you've spoken with either the prescribing doctor or his pediatrician.

Personally I wouldn't give him any Benadryl. Give him the warm bath and plenty of fluids and let him wind himself down. Supervise him at all times.

 

[smallworld]

I'm so sorry you're going through this.

Stimulants like Dexedrine can increase anxiety and emotional reactivity. Especially if he already has anxiety, it can make it worse. I wholeheartedly agree with SRL about calling the prescribing doctor first thing in the morning and not giving him another dose of Dexedrine until you've spoken to him. Dexedrine may not be the right medication for him.

Hang in there.

 

[susiestar]

hi! I want to Welcome you! I am glad you found us. We are "just" parents here, but we have a lot of experience.

At your son's age, take anything they "rule out" with a grain of salt. many times things are later ruled back in. This is why we suggest re-evaluating children every 3-5 years. some things simply don't show up when they are young and do emerge as they are older.

I want to STRONGLY encourage you to follow your "mommy instincts" or "gut feelings". I know that the only times I made really serious mistakes with my children are times I ignored my instincts and went with whatever the "expert" said.

The "experts" are expert in a field of study. They have a lot of education in that field. But they only spend a very short amount of time with your child, ranging from a few minutes to a few hours. But YOU are the EXPERT on your child. You spend huge amounts of time with your child, and have for years. So your instincts are there for a reason - to help guide you to whatever your child needs.

I think evaluations are crucial. I also think that a Parent Report would be an excellent thing for you to put together. It is a report you compile that is all about your child. Everything from your hopes and dreams, the things you see and experience, medical history, and all the reports from the so-called experts. Years ago someone here developed it, and it was fine-tuned over time. You will want to work on it in chunks, rather than all at once. You will also want to have copies with you anytime you see someone about your child. You may or may not want to give them a copy of the report.

I also STRONGLY recommend having a photo of your child at the beginning of the report and at the beginning of each section of the report. It helps the "pros" put a face and a real person to the paperwork.

The parent report is also VERY helpful when filling out all that interminable paperwork for each new specialist. You will have all the info at your fingertips!

here is a link to the format for the parent report: http://www.conductdisorders.com/forum/showthread.php?t=10

This also talks about a multi-disciplinary evaluation. This is where a group of experts works together to test and evaluate your son and then figure out what is going on and how best to help him. We got this through an excellent Developmental pediatrician who insists that every child who is seen in his practice (now has over 10 doctors) is evaluated this way - takes 3-6sessions that are 2-4 hours long. This can also be found at Children's Hospitals and at major university hospitals.

Anyway, this is a lot of info. Be sure to ask any questions you have!

I do have a couple of books you may find helpful. the first is "The Explosive Child" by Ross Greene. Many, if not most of us here have gotten help from this book. The second is Love and Logic Magic for Early Childhood by Fay and Cline. I found this to be incredibly helpful. Actually I like the entire Love and Logic line - I even went to one of their seminars and found it incredible. You can explore all the books that are offered int he Love and Logic line by going to www.loveandlogic.com - they even have a book just for using L&L with special needs children!

 

[ivas611]

Thank you again. I called the psyc this morning... he said to give him 1\2 the dose I was giving him and try melatonin at night. Problem is I can not find anyone who sells the liquid form except online. He was much better today. Had his moments but nothing like the last two days. First day back to school tomorrow. I am a bit afraid! The best help I have gotten so far (besides this site) was not from any of the many doctors I have taken him to. It was the pharmacist at Walgreens by my house. He was great.

I did see a nutritionist today who does alternative methods and the whole time I kept thinking...this guy can't be serious. I am more concerned with the diet than the homopathic remedies. He gave a bunch of vitamins, supplements and a diet plan. I figured the guy might be quirky but what's the worse thing that could happen.. my son ends up with better eating habits (as well as my family). He said my son's aura is rejecting sugar and that is why he is hyper. I am opened minded but, either this guy thought, cha-ching here is a mother at he witts end lets see how far we can take this (does not take insurance) or he really is a bit off.

 

[SRL]

I'm glad he responded to you quickly and it sounds like he gave you a reasonable alternative. I suggest that you start keeping a log of medications and behaviors to keep track of changes.

GNC carries a children's version of melatonin. I think it may be a cherry tablet so if you have one in a mall you might try that. Also check with your local pharmacists because they can often special order from their suppliers fairly quickly.

 

[ivas611]

I checked with a handful of pharmacies and vitamin shops but, no luck. Even asked if anyone could order it. I am going to have to order it online. The wacky nutritionist did give me a sleeping aide for him. Of course it tastes like ****.

Yesterday was a good day and I am not sure if it was the lack of sleep, the lower dose, the new big boy bed or the sleeping pill but he slept through the night for the first time in, I can't remember. He woke up happy and I am hoping today was a good day. Of course I did not sleep out of fear that I gave him some thing that could hurt him.

I am not getting my expectation up but, I am trying to optomistic and take one step at a time. Try to remove most of the sugar from his diet that I can.

On a side note... I was doing some research on melatonin and found that it was not recomended for children but, Cat Nip was. Has anyone heard of this? I am just curious. I really don't think it would be a good idea. That's all I need is my three cats and my son spaced out on the floor chasing balls of tin foil .

 

[SRL]

I haven't heard of using catnip. I do know that we have had many parents here use melatonin sucessfully, with few or no side effects.

 

[jal]

Keep an eye on the behavior when he takes the stimulant. We have been through 3 doctors that told us our difficult child was ADHD and every stimulant he's been on has set him off in the way you describe your child. We unfortunately trialed about 15 over a 3 year period. I don't think I have one empty bottle. The newest psychiatrist diagnosis'd difficult child with Aspergers and anxiety and started him on the generic of Prozac (for the anxiety portion). If a child doesn't have ADHD a stimulant can set them off in a very bad and violent way. The first time my son tried one he destroyed a very large preschool classroom. Beware too, just from my experience, I was told that if he can't handle a stimulant than he's Bipolar. Well, none of the medications for Bipolar helped either. Good luck to you.