Un-diagnosed almost 5 year old girl with "fits"

Angela - posted on 05/06/2010 ( 14 moms have responded )

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Our daughter, who is adopted, has had problems with outbursts, fits, impulse ans sensory issues since birth (she was placed with us at 3 months). She tested positive for cocaine at birth and they believe that the birth mother took every illicit drug known to man, as well as drank, while she was pregnant. She does not have Autism, she does not have Fetal Alcohol Syndrome, and she does not appear to have any neurological problems. The only thing she has been diagnosed with is ADHD. She is on meds (I didn't want to put her on meds but nothing worked and we tried just about everything!). She has improved, but still has fits, bullies, aggresses, acts on impulse a lot regardless of the consequences. When I say "fits" I don't mean tantrums. She will have episodes where she is screaming and crying uncontrollably for 20-30 minutes. She will kick, hit (she hits herself too), throws things and say nonsense phrases, usually over and over again. She can have these "fits" at anytime, sometimes over nothing.

She has a hard time getting control of herself and can't seem to calm down. She acts out - usually on her sister. She will make a loud noise occasionally (I think for stimulation), usually a scream of a nonsense word. She has inappropriate relationships with men, often calling my brother-in-laws "Daddy." She is VERY possessive of me and any friends she makes (she makes very few because of her aggression). Her relationship with Dad and other "authority-type" males is stand-offish. She often says she doesn't like Daddy and only wants me.

We are starting counseling for her, even though she is only 4. She is VERY smart and understands and communicates well. We're frustrated because she does not have a diagnosis, so getting services for her is very hard. We are worried that when she goes to Kindergarten next year that she will be labeled a "bad seed" and sent to the Principal's office often. She's in Preschool now and has 3 teachers, so if she acts out or has fits, one of them can remove her. That won't happen in Kindergarten. With budget cuts, there will be 1 teacher and no aides for 25 students. What we're wondering is: does anybody else out there have any insights or knows someone like this or can give us some advice? We aren't trying to "cure" her or "label" her; all we want to do is to try to figure out what's going on and help her to be able to calm herself and keep control. We've done the Love and Logic series and some of it has helped. Remember: we have been fighting with this issue since she was about 15 months old, when she was kicked out of 1 (of 2) day cares for aggressive behavior.

Thank you.
Angela

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14 Comments

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Erin - posted on 05/19/2010

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What meds is she on and how much? My son has ADHD and was not diagnosed till he was 6, they don't do anything any easrlier unless the child physically hurts hersef or severly hurts others! (It has to be very sever to be diagnosed before age 6)! My son was put on 10mg of Ritalin at age 6 and he had a very rough time in Pre-School and School up till grade 3! He was placed in a Learning Center at his school on an IPP! There is only 10 kids in his class and lots of individual attention and he has been making A's and B's and now loves going to school; he is 11 now! As she gets older it will get easier but the hard thing for my son is to make friends, he gets blamed for everything even when he does nothing! Hang in there and keep the faith and work with her teatchers when she goes to school and maby try requesting an Aid which hasd to be ndone months in advance before she starts school!

Mandee - posted on 05/19/2010

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We foster, and have considered adopting a child with similar needs. Children who test + for drugs at birth may not have FAS, but they have some of the same characteristics throughout life. They don't have Autism, ADHD/ADD, FAS, Neurology work-ups usually come back "normal" but they still face these issues. We are on daycare # 3 in the past year already with a particular child. You DO NOT have to have the child in a regular classroom if the 25:1 ratio is not safe for them or the other children. Even with budget cuts, there are options. You can feel free to send me a personal message and I can discuss further if you are interested.

Brenda - posted on 05/19/2010

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I have a child that had to have a kidney transplant at 5. She was a difficult little girl since birth. She has numerous sensory issues and is borderline deficient in Math. She has been tested by a Neuropsychologist who said she was borderlne ADHD. We put her on one ADHD medicine and she cried all day. The psychiatrist thought she was bipolar and put her on seroquel. She started having liver problems so they made me take her off the seroquel. The psychiatrist diagnosed her with a "mood disorder" She is now 12 and has been off Seroquel for about a year and a half. She still has small fits but they are something we can deal with. The fits she had at 5 years old could last for 30 minutes to hours and involved normally hitting, screaming and breaking things on impulse. Then I would have to hold her down until the fit would pass. The sensory issues were so bad, she had no tags in any of her clothes. We had to buy specific socks with no line in the toe and it could take an hour to get shoes on her feet in the mornings. I don't know what happened, but she is no longer medicated for the mood disorder because of the liver and most days we can actually deal with her. I thought in the beginning she would surely wind up in an institution. The psychiatrist did tell me that the moods would be back possibly when puberty began and when she went to highschool and then when she became an adult. We are able to function normally. I don't know if she grew out of it or what, but it has gotten better.

Jackie - posted on 05/18/2010

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Hi, I don't know if this will help you or not but I recently watched an episode of the show "Hoarders" on TV tropolis. The boy in the family had very strong sensory issues and fits of rage & violent outbursts( voicing negatory insults n death threats). The therapists that was assigned to the Hoarder, indicated that his schooling enviroment was different from home because of a loving therapist working with him at school, he had good grades and really strong friendships, but the enviroment at home was toxic because of her Hoarding. I'm not sure what she claimed the boy was diagnosed with but it was severe at most. Maybe search the website tvtropolis.com under the show hoarders. Hope this helps. Take care.

Denika - posted on 05/15/2010

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Angela,

I don't know which province you live in but what I do know is in BC there is not alot of support once you have reached the age of 3. Alberta is great, my aunt is a Teacher's Assistant there and they have special classrooms within a regular school for children with severe SPD/SID (Sensory Processing Disorder/Sensory Regulatory Disorder) I too am introducing my daughter to kindergarden in September. I have delt with the same sort of issues from birth and actually had my daughter diagnosed at Children's Hospital in Vancouver at 18ths-which is very rare to have such a diagnosis at such a young age. Do keep in mind that I kept a journal from about 1 mth old about everything that happened in a day, what we had tried, what worked one day and didn't the next, what she ate, what fabric she was wearing, tags or no tags, fabric of her bed sheets, almost anything you could think of. It was a real chore but it helped in the end. She was diagnosed with SPD, HD, Defiant, Hyperactive and at high risk for ADHD in the future. We have not medicated but worked a very long list of items to find what helps bring her down from what you call a fit. Some days it will work and other days we just have to let her go. She vomits often, she is very sensitive to light,smells,textures the list just keeps going, noise ect. I would really recommend reading "the out of sync child" you may be able to take some things and see if it helps. Good Luck and You Are Gifted, they are very bright children. I have learned that there are only a few types of people with the patience to deal with these children...keep up the good work, it will payoff in time.

Heather - posted on 05/15/2010

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The aggression could be caused by the meds? Just a thought. I've gone through similar things w/ my son (now 10) he's been diagnosed w/ many things over the years, I did put him on meds when he was younger, and took him off b/c of the increased aggression. He'd get pretty violent, and have the "fits" you're describing too. They would occur in the afternoon when coming down off of his meds.is when he'd get most violent... uncontrollable to him. I've heard the "bad seed" comments (and devil's spawn... demon child) all those lovely things. (can't BELIEVE the crap that comes out of some adults' mouths) anyways... the thing I've learned over the years.. is to control his environment as much as possible. If your daughter has sensory issues, learn as MUCH as you can about that. Also get her occupational therapy... with an OT who specializes in sensory issues. It works WONDERS. Plus they can teach you things to do at home, and things for teachers to do in classroom. Something as simple as a technique called "brushing" with a thearpy brush can calm my son for 2 hrs. There are many things that can be done to prevent the outbursts. Key is prevention. Things I have to closely monitor with my son (but it's different for each individual.. this is just to give you some ideas to start looking at) 1) diet. dairy, red and blue dyes, and corn all make him hyper beyond control. (keeping a strict food/behavior diary can help you determine if there are any foods affecting your child)

2) chaos vs calm. if our home is chaotic, or out of order. that sets him off. If everything is in it's place, especially in HIS room, which is his peaceful reprieve when he needs time to calm (something he's learned over the years) all is well.

3) routines/schedules have to be predictable to him. If he's expecting to do something at 3:00 p.m. he starts freaking out by 3:05 if it's not happening. If I know we're runing behind, I can verbally tell him, and explain that it's going to be later today, but have to give him several reminders, or he'll still freak out.

3) sounds. he is sensitive to sounds, someone mowing the lawn, an airplane flying over head.... his younger sister singing off key (LOL) or his brother yelling, even an odd sounding insect screeching from the yard... those things irritate him, it seems almost painful to him. I eventually invested in a good pair of noise reduction head phones to help him block sounds out when he seems to be extra sensitive.

3) smells. smells irritate him to the point of acting out too. he'll get angry, start acting a little stir crazy... pacing through the hall, or stomping hard as he walks.... may even start bawling.... just weird reactions... and if you can get him to calm enough to tell you.... it ends up being from an odd smell he can't stand. (last nights dinner in garbage in kitchen, when he's all the way in his bedroom, or a diaper in the bathroom garbage from his sister, or something someone heated up in the microwave that he can't stand the smell of) it's weird. but it's something we/he's learned that sets him off into a weird reaction. We don't cook fish in our house. Not an option. It makes hiim react.

Those are sensory issues. he also has issues with clothes, bedding, textures in his mouth. But those are easy fixes (once learned)

Good luck! BTW.. .kindergarten can work w/ the right teacher... but that's the same for any grade. With the right teacher, someone who takes the time to get to know and understand your child.. it can work. Otherwise, it makes for a hard year, but that's a whole other story!

Angela - posted on 05/13/2010

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my son kinda does the same things. he has been dx with ADHD implustivity and hyperactivity. so i have some empathy!!!!!! look into APD with also looks like adhd. as a counselor my self i would recomend having her do some play therapy with a counselor!

Lisa - posted on 05/13/2010

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Have you had her screened by an occupational therapist? ADHD never comes alone. She is fortunate to have a mom willing to dig deep for answers. If your child requires an aide even for behaviour issues is the school not responsible for providing one to keep her in an inclusive enviroment? I would look into her legal rights. Finding out exactly what she has may be the solution to the school "finding" the money for an aide. Labels for special needs kids do mean more $$ for the school. I know how frustrating this is. I hope you are finding some support for you and your husband as well. I walk in your shoes. Stay strong.

Sharon - posted on 05/13/2010

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My 3 year old does the same thing. I even had a Behavorial Spechalist tell me ( after 3 visits ) that there was nothing she could do and never came back. I want to start him in preschool but am afraid that he will do something horrible to himself or another child. I have 4 boys and he is ok when home with me alone ( unless I tell him "No" about something). He hits, bits, throws awful fits, throws things ( Big things). It's like a whole different personality.

Melissa - posted on 05/12/2010

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Is it possible that she may have an attachment disorder? I think that's usually more typical in children who are adopted out of bad situations when they are older, but it's still something to be aware of as she matures and her personality continues to develop. RAD doesn't look like a perfect fit right now, but based on several parts of your post, it seems like something you may want to look into with her therapist.

Sarah - posted on 05/11/2010

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angela,

I totally understand what you are talking about. I have a 14 year old son who has a mild form of autism AND an (as yet) undiagnosed mood disorder. We know that it has bi-polar features, but his current psychiatrist swears that he cannot be bi-polar. My son has periodic rages where he is basically homicidal and assaults the authority figure present. I have called the sheriff's department several times, and even after being cuffed and thrown into the back of a police car ( as a scare tactic) nothing changed. The last time he raged on me, I had a bruise on my arm that was literally 4x5 inches from a BITE. 5 weeks ago he raged on his psychologist and bit her--over a week later a mutual friend saw her and told me that she had huge bruises up and down her arm.

what you want to do is contact your local school and request an MFE ( multi-factored evaluation). This will allow the school to do evaluations to discover her strengths and weaknesses. Once this is done, you will be called into a meeting to discuss what accomidations they can provide so she can receive an appropriate education ( this is writing an IEP). This might be as simple as an aide in the classroom to redirect her or remove her from the classroom if s/he senses your daughter is getting over stimulated. It can also stipulate that your daughter HAS to have certain equipment or therapies during school ( therapies paid for by the school). A good resource for you would be to google "individuals with disabilities education act"--it is a federal law that lays out the rights you and your daughter have. I know, in Ohio, my youngest qualified for free preschool on a speech IEP ( idividual education plan). He has a speech delay. On his third birthday when he started school, he also qualified for a grant through the local board of developmental disabilities. The funny thing is, he is 4.5 years old and already doing kindergarten/1st grade level work ( reading and math). The board of DD is paying $300 for him to go to a preschool day camp for 3 weeks in June.

when your daughter is upset, does she get mad if she is touched? Some kids with sensory issues can be calmed by someone using deep pressure--this can be as simple as a big bear hug, or as complex as wrapping a light blanket snuggly around their body and squishing them ( my son will squeeze behind me on the couch and wait for me to lean back against him). The book that someone else suggested would be a great idea. Someone all but forced me to borrow her copy a few years ago and I found it so helpful that I bought my own copy of "the out of sync child".

Shannon - posted on 05/08/2010

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my 9 year old son who is a twin, his sister is fine sounds a like like your daughter,he went to regular school for 2 years but had a hard time, he has sensory problems he was out of the class alot and did not make many friends, he know is in the bocese class a class of 10 we also have him in counciling, he was finally dignosed with ocd, when he gets in to those rages they go on for ever becaause of the ocd he also has angxity angery issues and bipolor his dad has that and impulse control. we did not want him on meds either but i got lucky his dr. but him on some meds that are not addicting or anything strong. talk to your school before she starts and try to get her in the iep program they help alot. i know it is tuff noah still has potty isues at 9 to. try doing charts some kids learn better by seeing things. you just need to keep fighting for her because the school will not tell you what is avalable and you do not want to loose her noah is much better in a smaller class. i hope this helps and i do understand it gets very tirying and sometimes your other kids get left on there own because all your energy goes to your daughter
shannon

Alyn - posted on 05/07/2010

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Wow, you are dealing with a lot. I would check out the book "the out of synch child" by Carol Stock Kranowitz. Some kids with ADHD have sensory issues that need to be dealt with. Actually some kids are diagnosed with ADHD and it really is just sensory issues. This book was so great for me with my son who has Sensory Processing Disorder. We have been working with occupational therapist that has really helped. Just a thought, hope it helps!

Iridescent - posted on 05/06/2010

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It sounds like you've been down nearly every path, but have they ever done an fMRI (note the "f")? If not, you may want to request it as it will not only show the structure of her brain, but also which parts are functioning and how. It can sometimes show damage where other tests fail.

Since she's negative for FAS and Autism, and certainly seems to have more going on than a typical child with just ADHD, I'd continue researching. Since you KNOW she was exposed to drugs prior to birth, that's something that needs to be taken into consideration.