I'm new here

[Nancy423]

Hi there. An introduction and seeing if this would be a good place for sharing our story. I have a daughter who's been diagnosed with atypical mood disorder, anxiety disorder, ADD (which I don't believe) and we're still thinking possibly bi-polar or depression. She's been tested for many things but have no other absolute diagnosis. Current medications: all allergy/asthma related. Took her off all the anti-seizure and ADD medications.

She's 11, but the equivilant of maybe a 7-8 year old emotionally and acedemically. She's been in an LDSC classroom since the second grade. In the last 3 years she's been suspended 3-4 times for behavioral issues. (Once for biting the principal.) There was one day when the nurse and social worker had to hold her arms and legs down on the bed in the nurses office because she couldn't calm down. They threatened to call an ambulance and have her sent to the hospital. I brought her home, left her to calm down on her own and she was fine within 5 minutes. Principal said she was looking for attention and that I was feeding that. I hope you can believe me that my daughter is not doing this for attention and having someone say that to me was shocking.

We also believe she's clinically a cleptomaniac since the age of 3. She's been in and out of therapy since the age of 5 depening on insurance coverage. We found out the hard way this year that the current coverage is worthless.

She has been very well-behaved so far in 6th grade (I'm still seething over that decision in the IEP to move her forward) but she's already gotten 2 detentions for incomplete homework and being unorganized for class. (organization has never been her strong suit) There are times that I see her as a pre-teen but giving her too much responsibility isn't a good idea.

My journey has been difficult since being pregnant with her. I don't feel as connected to her as I do my son. And this year in May she got a fungal infection in her hair follicles and lost 95% of her hair. Luckily, most students and other people don't ask or tease so she's been fairly comfortable without a bandana on.

Does anyone know of an agency that could help with the costs of therapy?? I feel like such a failure when i can't get her the help she desperately deserves. I'm also looking for a local group so I can share my challenges we have with her and get some ideas on how to cope better and some better ways to deal with her "tantrums".

ok, and a stupid question....what is difficult child?

 

[tiredmommy]

Hi Nancy and welcome. difficult child = Gift from God... the child that brought you here. Have you looked into autism spectrum disorders or NonVerbal Learning Disorder (NVLD)? Just curious. One thing I would like to speak to is atarax. My difficult child took atarax for six weeks at age three. She began behaving very erratically and started stealing and hording items from around the house in her room. The behaviors disappeared within a day of stopping the medication. Also, antihistamines are known to cause cognitive dulling in children.

 

[Wiped Out]

Welcome Nancy,

You have found a great place for support. I would have been fuming at the principal's suggestion.

Who diagnosed your child? Pediatrician, psychiatrist?

Just curious if organization is not one of her strong points and she has an IEP what are they doing to help? Detentions don't sound fair in this case.

As far as help with costs of therapy, have you looked in to the Katie Beckett program in your state. It varies from state to state but here they just look at the child's needs and the child's income. My difficult child qualified for medicaid through this program.

 

[Nancy423]

I'd really hate to think that her issues might be traced back to her medications. No dr has ever said anything to me, and believe me, we've been to MANY. Name it and pretty safe to say she's seen one. I can't recall exactly when we put her on Atarax but she's been on it for maybe 6 years. We can't go more than a night or two without it because it's for her eczema. She refuses to use the ointment/creams (LOUDLY refuses) so we've stopped trying to keep the peace. We see her allergy doctor next month, but I'm sure he'll just refer us to the pediatrician. derm at Childrens again.

She's been diagnosed by a psychologist, psychiatrists and a neurologist (who said she's got brain damage that won't get any worse). We've seen a geneticist, endo, pulminologist, pediatrician derm, counselors, and several psychiatric's. School refuses to test her for dyslexia (her dad has it), but one of the doctor's may have said they agree. Can't remember. Sometimes all this stuff is too overwhelming for me.

We "tested" her for aspergers and autism. I remember doing some questionnaires. I think I remember her IQ being somewhere around 68. I think they shot down ODD too. I've read the book Explosive Child (gift from my mom the PsyD.) and thought it was fairly close to her behavior when she was younger, she's been fairly even tempered lately. Well, compared to the terrible 1-6 years!

We discussed the detentions at the P/T meeting last week. Her study hall teacher is supposed to be going over her assignment book before she leaves for the day to make sure everyhting is listed. I believe it's school policy for this - but I'm not sure. I've already told them that she's not good with- organization. It's like a mess just follows her everywhere.

She's had a couple of Spect scans done a few years ago. It shows some areas of her brain have no activity and others that have way too much, so we think her brain is trying to compensate.

I've never heard of Katie Beckett....I'll look into that, thanks!

What's NonVerbal Learning Disorder (NVLD)?

 

[totoro]

Non-verbal Learning Disorder (NLD) here is a great link with info:
http://www.nldontheweb.org/
Welcome!
Katie Beckett is a great way to receive help for a lot of people. We were denied but it can help a lot of people. I would knock on every door and call anyone you can think of in any state agency in your area. A lot of times places like- NAMI, CABF, CHADD, DBSA all have links and resources to local help and therapies as well as Doctors. Sometimes even if your child is not diagnosis'd with BiPolar (BP) but you suspect they can lead you to help. Or even if you don't think she has ADHD, CHADD still has great local resources and support. A lot of the members children have many other diagnosis's as well.
Here where I am, I went to an Adult Bipolar Support Group (I have BiPolar (BP)) but once there I found a bunch of info for support for parents support groups that I had not seen online.
Sorry you had to find us but again welcome and please keep asking questions we might be able to help.

 

[Andy]

Welcome - I can't believe the principal would say this is attention getting. When a SW at a psychiatric hospital told me that about difficult child's vomiting, I replied, "Yes, he is looking for help. We have been trying to figure out what is going on and no one is helping." He was looking for medical attention for his symptoms not attention from mom.

I would ask about more info in holding her down. That in itself would feed into her anxietys and fears and feeling vulnerable. Of course she wasn't going to calm down - she was not feeling safe. What training did these people have to know how to do a restraining hold? Ask for the SD policy on restraints.

I think detention for incomplete homework and bad organization is very harsh. Is there anyone during detention who is working with her on this or is she just getting punished with no teaching?

You can google your daughter's medications to search for possible side effects. You have gotten great feedback so far, hopefully there will be even more people on this forum to give you their experiences with the various medications - the more info the better and personal experience is better than the written warnings.

 

[BusynMember]

Hi there. Although you've certainly seen the gamut of professionals (as did we) I recommend taking the plunge once more and scheduling a NeuroPsychologist evaluation (this is way different than either a Neurologist or a regular Psychologist. It is very intensive and in my opinion very good--they catch stuff others miss and, more importantly, tend to be able to point you in the right direction for help (with us that was a great big FINALLY). My son got progressively better after his ten hour neuropsychologist evaluation in which, after 11 years of professionals having no idea what they were doing, he rightfully diagnosed high functioning autism (a lot of others had said "no" to that--a lot of that is because it takes a long time to diagnose it and most professioinals don't go deep enough with their testing). My son is doing great now. I recommend one more try.
Welcome to the board

 

[smallworld]

Welcome. I'm glad you found us.

In March, the FDA issued a warning about Singulair because it had been linked to behavior/mood changes and suicidal thinking. Here's a link to an article on that issue:

http://www.medications.com/effect/view/28409

What do you mean she has "brain damage"? That can change the picture of what you're dealing with.

You should check her IQ scores and post them (with subtest scores). A score of 68 is very low and also changes the picture of what you're dealing with.

Does she have an IEP?

 

[Nancy423]

Thanks for all the warnings about the medications. I'm clearly going to have to weigh the pros and cons of her taking them. It's just that she's always had mood/anxiety issues even before taking them. As for her other issues, can't say for sure if they developed before or after.

I'll check with insurance and see if we have a neuropsychologist in network. Wouldn't have known there was such a specialty.

As for brain damage - it was the Neuro's opinion and without any substantiating evidence. Only a quick physical and what I told him. No other doctor has said anything about it except for the Psychiatrist who did the spect scans, and he didn't say damage, just that certain areas which should have activity - don't.

You guys are a fountain of info and I appreciate it all!!! THANKS!

 

[smallworld]

Nancy,

If your daughter had mood/behavior issues before the medications, then it's probably not the medications. Please don't stop the medications without talking with a doctor qualified to help you make this decision. We're not doctors -- just parents who have been there done that and happen to do a lot of research! My own daughter takes medications for allergies and asthma because she needs them. But we have chosen carefully to avoid mood triggrers.

I believe the only way you can know for sure whether your difficult child has brain damage is with an MRI or CAT scan. It might be worth it given that a neuro suspects brain damage. Has she ever had an EEG to assess for seizures?

 

[Nancy423]

yes, we had a 24 hour EEG done at the house. Normal results.

smallworld, what kind of fish you have? My hubby inherited his brother's fish after he passed. We have a 110 gal tank with- a Ciclid, Gar, Plecostamas and feeders. My kids have gone thru many "pet" fish too LOL

 

[smallworld]

Nancy, now you've asked a question I can't answer. The fish belong to my son, and I have no idea what's in that tank. I'm not sure I even want to know.

 

[Nancy423]

LOL. I have to admit that the fish are my hubby's. I didn't want them. But my kids really enjoy them. My daughter loves to sit and watch them swim. The only reason I know what kind of fish we have is because the kids tell me. In fact, they named all of them

 

[crazymama30]

Just wanted to welcome you, and wish you the best.

 

[TerryJ2]

Welcome! You've got your hands full. Very bizarre that the pricipal said that.
I can't help you with-the $ ideas or the medications but I can send cyber hugs. {{hugs}}

by the way, what do you think made your difficult child calm down once she was home that day? Being in her own environment? What made her rage to begin with? It's important to know her triggers.

 

[Nancy423]

Thanks for the hugs, I really could use them

My opinion on that day is the school staff didn't handle her very well. As her 3rd grade teacher puts it she "shuts down". It could be anxiety, stress, frustration, whatever. We cannot pinpoint anything specifiic yet. When she's in this mode, the best way to avoid an escalation is to just leave her alone. Otherwise, talking to her or trying to move her just makes it worse. She'll get violent and lash out at anyone around, run down the hallways, scream, bite, hit etc.

The staff says that they can't work with the suggestions I gave them because she's disrupting class (I can't see how she disrupts class because she's sitting or standing there.....not responding) and they need to move her along. Well, it was their choice. She ran out of the school and I just walked normally to my car. The nurse and SW were running after her saying they were worried she'd run into the parking lot. Knowing my daughter, I wasn't afraid she'd do that, however, there could always be a first time. I got her into the car, got the seat belt on all the while she's screaming and hitting me. I drove the 3 blocks home and told her to go to her room. At that point, I didn't care if she just stood there in the doorway. Basically, it's the fact that I left her alone before trying to get info on why she shut down. We've just stepped over her tantrums when she was younger and would go about our normal business. She learned pretty fast how to calm herself down enough to cry or talk. I did notice that when I'm frustrated that the entire episode escalates cuz I'm sure she feels my emotions.

I have never liked the school district Learning Disability (LD) training. I've always felt they needed more training on how to handle issues like this. They never suggested sending her to another school for behavioral issues so I can't say they didn't know what they were getting into.

I was reading the PWS thread and someone suggested making a diary. I did one many years ago, but I'm thinking I should really start again. Trouble is, I don't hear about ALL the school issues anymore even though I've specifically asked the teachers to email or make a quick call home. they said it wasn't a big deal because they left her alone, and within a minute or two she was back into the class fine.

 

[Nancy423]

As far as help with costs of therapy, have you looked in to the Katie Beckett program in your state. It varies from state to state but here they just look at the child's needs and the child's income. My difficult child qualified for medicaid through this program.

Well, Illinois does not have this program - they have DSCC, which is for "Children under the age of 21 who are medically fragile and technology dependent and who would otherwise require care in a skilled nursing facility or a hospital." I'm finding this state is not very caring toward those of us in a gray area. (Income not enough, but can't qualify for any benefits)

 

[DDD]

Welcome aboard. Just a quick hello as I'm swamped at work. You've found a great place as the CD family is always ready to help...sometimes just be listening.

Executive functioning and speed of work completion should be addressed in her IEP. It's ridiculous to put her down for what she is incapable of accomplishing. It is the school's JOB to help her achieve her maximum capability. Does she have an IEP? If so, sound like you need to prepare for a review request.

Later, DDD

 

[Nancy423]

Yep, IEP'd since she was 3. She's had a BIP in place since last year. I think her review might be coming up - was she fall? no, she might be spring....

 

[Andy]

Restart your journal. Even what you do know will help. Then, tell the school staff that you are recording every single episode to present to a doctor.

Last year my difficult child had so many bad episodes of bad behavior that his teacher felt bad about telling me about all of them. She knew they broke my heart. However, she also said that the staff as a whole felt that it was important for me to know EVERYTHING. And it was. So, I did get to learn about every little bad thing that was going on and cried a lot through it all. However, knowing everything also helped me get him the help he needed. If I didn't hear from the school, I probably would have told doctors, "Everything is going fine in school." and he would not have received the help he needed.

I would also re-encourge you to research the SD policy and procedure on restraints. Demand that staff are properly trained. Demand a incident report be filed in her record and give to you every time they hold her down. (I would even ask for one on this last incident - they can be made after the fact). Show the report to difficult child's doctor and ask him/her if he/she thinks of it. I am just not sure that I am comfortable with it. It is sending me red flags for some reason.