First post
Well, I went to register this morning and found out I had registered in the past. That is likely because I suspected BP years ago.
I have an 11 1/2 year old recently Dxas dealing with Severe ADHD, Mood Disorder (leaning toward BP), Emotional Disorder, Oppositional Defiance Disorder, and severe Learning Disability with Speech Delays. With sleep issues and sensory issues.
Apparently that combo can present as being on the autsim spectrum - PDD-NOS (Pervasive Developmental Disorder).
When he was about 15 months the Hyper activity began. Bouncing off the walls hyper. About 3 years old he started with these MAJOR mood swings. Extreme rages that would last sometimes 2-3 hours occuring sometimes 3-4 times a day. I was going bonkers. Some of these rages were so distructive... he once threw a sit-n-spin through our front window during a fit. Another time whipped a sippy cup that was not the color he wanted at my older son and we needed stitches. He would have these swings of extremeness, drama, no fear to raging mad at the world destructive fits. Always a complete extreme.
Since there is a family history of BP, I went to our pediatrictian with that. By that point he was 3 1/2 almost 4 years old. I printed out check lists for early on-set BP and pediatric BP. I was able to check off most of the list. The ONLY factor that he was not speaking yet. So, the doc pushed us toward Autism Spectrum Disorders.
I lived in denial of that and after several months of insane drama and fits I took him to an intake center. They also stated PDD-NOS (based mostly on the speech and the social interaction), and was told there isn't much I could do.
Ok... Switched peds and had a work up done and she did not see PDD-NOS only the severe ADHD. Later after more raging fits I made an appointment at a children's psych intake. "Have you ever considered Autism Spectrum Disorder" they stated after about 30 minutes... well now that you mention it...
We can't help you, go to Easter Seals. Ok, so we went. Nope, your kids does not show signs of Autism we can't help you. Ok, so we went back and said NOW WHAT??? We are at our wits end.
They treated the ADHD and set is up with a therapist. Their revolving door of therapists were not helpful at all.
New insurance - found an ADHD/ Autism screening specialist. This guy did a 10 hour in depth assessment. Nope, Did not see Autism, but the list I mentioned above. This is EIGHT years after I started this process! WTH!
Ok, so meanwhile, we pulled him out of school to Homeschool. He does NOT work within a group setting at all. After about an hour he shuts down and hides in the corner and I usually have to sit in or near the class so I can intervene. The psychiatrists and therapist are now trying to push him into the school. Ok, the last time I fought for an IEP I recieved a 2 page set of goals and objectives. Page 2 BTW was the signature page. His ONLY objectives were to complete classwork with a passing grade in English, Math and Science/Social Studies.
He is also Growth Hormone deficient. So, he would have been entering middle school last year at under 4ft tall and 45lbs with those issues. He was already being bullied, coming home with bruises. We were being told that because he did not mentioned this immediately to a teacher there was nothing they could do.
We only have ONE school for his grade level in our entire district. So our options for public school with an IEP are very limited (I.E. Non-Existent). I talked ot our special ed co-op and they are unwilling to help me until I re-enroll him full time on his current IEP. ARE THEY NUTS??? I refused. We are waiting for a meeting with the principal, psychologist and special ed teacher...
I know he needs more than what I can provide, but what if I can't get them to provide what he needs? I know, I need to get an attorney.
I am personally having a hard time with all this.
I am married, but my hubby is happy that it is this list over Autism, to him that means there is hope. But, I am scared. Even though I knew this all along,...
I have lost friends and family because of many of my son's behaviors. My older son is dealing with his own issues because of ALL the focus *I* need to place on my younger son. But, I don't have a support system. So, it is mostly me while hubby works 12 hour days.
Anyway, that is my story.
Hi Jenlynn - I'm glad you found us here and glad you posted. You will find a great support system here. It sounds like you have been through the wringer over the last 8 years - I get it, believe me. We have a similar story, only we've finally been able to find the help we need. My daughter is 12. What is your son getting for treatment right now? I know therapy is a revolving door - it didn't work for us until we started to see some stabilization. Is he taking any medications that will help with that?
Also, a little vocabulary that I found helpful in the beginning: "enroll" and "attend" ... not the same thing. I know you don't want to send him to school, but do enroll him under his current IEP so that you can proceed with the next steps. My daughter missed more than a month near the end of 6th grade (she just flat out refused to go) and that was when we started to get some of the modifications we needed to her IEP. Having an objective of passing all his classes ... I agree, how does that help? Aren't all kids striving to pass their classes? That puts all the responsibility on him and not on the school. I take it from your post that you live in a more rural area with fewer education choices? Does that mean there are no non-public school choices? Is there any kind of special day class in his school? It's hard in middle school, we were fortunate to have been given a NPS (non-public school) designation and found a therapeutic school for her. But the IEP, whatever the options are, should include accommodations for him that allow for supervised breaks from class when he needs it, it could include homework modifications, special seating - any number of details that will help him to succeed in school. If you go up to the Learn tab (above) and then click Education Corner, you will see a couple of items that will help you navigate the IEP process and suggest accommodations.
I lost family and friends too - but the ones that matter have come to understand. Also, for every fourth appointment my daughter has with the pdoc, I have one - it helps. There is also a lot of information in the "Getting Started" section - and that includes information on how to help siblings get through this. Take a deep breath and hang in ... we're here. I found joining a support group on the site to be immensely helpful.
Welcome.
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Shelle, 49 in So Cal - Celexa 20mg, Xanax 0.5mg rarely as needed
Family Response Team member and CABF Support 11
rmadmom@hotmail.com
Single Mom to Rachel, 12 - BP, anxiety, ADHD (or maybe not) - Lamictal 200mg am+Seroquel 50mg am/200mg early pm, Therapeutic School
We also have Birdie, the love bird - she bites; and Scarlett, the kitten - she does too
FROM CABF: Do not start, stop, or change medication or other treatment for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
Hi Shelle,
Thanks for responding :) I guess before you or anyone else reads my book below :) I do have a question. How do you respond when an issue comes up, a behavior a meltdown and someone asks "What's wrong with him (her)"? Before last Thursday, I have always been able to answer... well, he is on the Autism Spectrum, and I would get a knowing look and an "ohhh". and that would be that. How would I answer that now? Not that it some peoples business, but I feel the need with some of the issues to be up front with teachers and coaches at least until we get things worked out more.
I did not even consider the vocab between "Enroll" and "attend". When he was last enrolled, our attendance was questionable, however it was mostly different doc appointments. My concern is truancy. However, school has been in session for 18 days now and I know based on our doc (Pdoc, therapy, P-Endo, orthodontist) appointments, we would have missed 5 days (they consider it a full days abcense if you are out for 2 1/2 hours) and since most of our appointmens now are with different specialists, we are driving anywhere from 25-60 miles one way). Now... if we base different behaviors into the equation and how many times I was called in the past - I don't know. Make up for missing class alone is tough add in the homework (MY Older son was coming home with almost 4 hours a night - because apparently our district believes that loading the kids with homework will limit their time from the potential to get in trouble. The idea of trying to fit in 4 hours of homework with him after getting home from school about 4pm as his meds wear off...plus missed work. Nowing that his potential for meltdowns increases significantly after meds wear off.
We are not exactly in a rural area although it sounds like it. Our district is a closed district. Which makes it smaller than it needs to be. They would be SO much better if they were to consoladate with the one neighboring district in our State. However in our district we have about 1200 kids between pre-k and 12th grades. bordering cities share schools and their districts have open enrollment between several smaller cities so their one local highschool have about 1200 enrolled per grade level so their funds for special ed and other resources is substantial. The other bordering district is of one city of 30,000 but since they are in a different State we are unable to use their resources. I am sure that sounded all over the place. But we live on the Illinois/Wiscosin border and are actually considered more of a suburb of the larger city in Wisconsin and most of our utilities come out of Wisconsin, we are still residents of Illinois. When we moved here almost 9 years ago, my kids were only 2 and 3. The idea of a small school district interested us at that time. We also, since we are too small to afford them, we have a Special Ed Co-Op that focuses on several area districts. As far as I know, aside from a private school (in which we would have to return to the local public school anyway, locally we do not have that option). I am still waiting for the school to call me back to set up an appointment to discuss all this.
Treatment: As of right now he is only on Concerta 36mg and Respideral.25 (2x a day). We met a new therapist. Have an appointment with a new P-doc (although the therapist recommends our old P-Doc for Children issues over the new one), we meet the new one 10/5 and the old one (due to the fact that he is the only doc that accepts state care in the Northern Illinois area along with other referals his next available appointment is not until December 7th (For exisiting patients). So... i am thinking for the time, we meet the new guy. I did set the appointment with the old p-doc just in case. It was the old p-doc who also stated Autism Spectrum Disorders as well (or at the very least did not question the in-take assessment). So, I am not sure what he will do with the new MORE detailed and in-depth assessment that he DID NOT do.
Thanks!!!
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Mom to 2 awesome kids
12 yr old boy
11 yr old boy - ADHD, MD (leaning toward BP), ODD, ED, Learning disabled, sensory issues, speech delays.
How do you respond when an issue comes up, a behavior a meltdown and someone asks "What's wrong with him (her)"?
If its someone I like who I think is genuinely interested and can help (ie the dean of her school) I will say she has an emerging mental illness (or brain dysfunction) that has not yet fully manifested. Sometimes I will say she is developing bipolar disorder. It depends on their level of knowledge. I am often surpised to find that when I am up front, other people will admit the same about someone close to them.
If its a busy body who I think is judging me or my dd I will ask "Why, do you have a problem with the way I am raising my child?"
I wanted to answer that before I went on to read your book :)
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Karenj
Self: as sane as I can be everyday
A - DD (17yo) well adjusted, high functioning, motivated, successful, waiting patiently to go away to college
M - DD (13yo) Mood Disorder NOS (dx 4/2011) ADHD (dx 2nd grade), dumb high IQ, mainstream education with IEP/BIP, Seroquel 100mg twice daily - morning and bed time
BF - Live in boyfriend of 5 years, supportive and learning more every day
EX - Ex-husband, divorced since 2002, family history of bipolar, unpredictable and sometimes explosive
test post (from different computer)
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Shelle, 49 in So Cal - Celexa 20mg, Xanax 0.5mg rarely as needed
Family Response Team member and CABF Support 11
rmadmom@hotmail.com
Single Mom to Rachel, 12 - BP, anxiety, ADHD (or maybe not) - Lamictal 200mg am+Seroquel 50mg am/200mg early pm, Therapeutic School
We also have Birdie, the love bird - she bites; and Scarlett, the kitten - she does too
FROM CABF: Do not start, stop, or change medication or other treatment for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
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Shelle, 49 in So Cal - Celexa 20mg, Xanax 0.5mg rarely as needed
Family Response Team member and CABF Support 11
rmadmom@hotmail.com
Single Mom to Rachel, 12 - BP, anxiety, ADHD (or maybe not) - Lamictal 200mg am+Seroquel 50mg am/200mg early pm, Therapeutic School
We also have Birdie, the love bird - she bites; and Scarlett, the kitten - she does too
FROM CABF: Do not start, stop, or change medication or other treatment for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
Attachments
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Shelle, 49 in So Cal - Celexa 20mg, Xanax 0.5mg rarely as needed
Family Response Team member and CABF Support 11
rmadmom@hotmail.com
Single Mom to Rachel, 12 - BP, anxiety, ADHD (or maybe not) - Lamictal 200mg am+Seroquel 50mg am/200mg early pm, Therapeutic School
We also have Birdie, the love bird - she bites; and Scarlett, the kitten - she does too
FROM CABF: Do not start, stop, or change medication or other treatment for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
As far as what to tell people – if it’s someone in our lives (relative, teacher, good friend), then I tell them she is getting treatment for bipolar disorder. If they ask, I elaborate. If not, I leave it at that. Random people on the street or in the store usually don’t verbally say anything, but my response in those cases is, “she’s having a bad day, what’s wrong with you?” I can be a little, uh … blunt.
Well, I can’t speak for Illinois, but here in California, doctor’s appointments are considered excused absences and not truancy. That being said, when Rachel missed that month+ of school last year 1) her doctor wrote a letter explaining that school refusal was a part of her medical condition, and 2) it helped to open the eyes of the staff (and me as well) to determine that the absolute “least restrictive environment” was insufficient for Rachel’s needs. It was a part of the process that helped us land in a therapeutic school.
Something else you should keep in mind is that of the many accommodations and IEP can offer, decreased homework is one of them. My daughter would not do her homework until I was home from work (at 6), and then with making dinner, cleaning up, bath, and bedtime at 9 – there was just no way.
The special ed co-op sounds like it might be able to offer you a good alternative. I did the same thing – moved out of Los Angeles school district and into a smaller district. Once there, I learned that we did not have an ED program in any of the four K-8 schools, only in the high school (this was last year when Rachel’s was in 6th grade). They also have a co-op plan with Santa Monica. Unfortunately, Santa Monica didn’t have space for her (budget cuts), so we went forward with the NPS. But if there is a school included in this co-op that would be better for your son, I would definitely work toward that.
In looking at your treatment, one of the first questions I would ask the pdoc is about the Concerta. Stimulant ADHD medications can really exacerbate the meltdowns for most kids with BP. Ask about gradually replacing that with a mood stabilizer to work along with the Risperdal. If after you reach therapeutic levels on those you feel that an ADHD medication is still needed, then address it at that point. When deciding which pdoc to use, go with the one with whom you feel most comfortable – there’s sort of an instinct we have when it comes to our pdocs … you just feel who’s the right choice and who is not.
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Shelle, 49 in So Cal - Celexa 20mg, Xanax 0.5mg rarely as needed
Family Response Team member and CABF Support 11
rmadmom@hotmail.com
Single Mom to Rachel, 12 - BP, anxiety, ADHD (or maybe not) - Lamictal 200mg am+Seroquel 50mg am/200mg early pm, Therapeutic School
We also have Birdie, the love bird - she bites; and Scarlett, the kitten - she does too
FROM CABF: Do not start, stop, or change medication or other treatment for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
My daughter used to miss so many full and partial days of school. Sometimes from needing to sleep, sometimes from anxiety, sometimes migraines, sometimes from hallucinations. When necessary, her doctor would fax yet another letter with the date or dates, just saying she could not go to school due to illness. That's it. Short and sweet. There are new rules in place we did not have to contend with back then. It is almost like the school/govt. thinks if they bully us enough we can somehow change the situation and suddenly our child won't be too sick???
--"Naomi"
It's Not Mental
Older dd: formerly(?) teen-onset bipolar: After over 13 years - stable off psych meds over a year. Now fine on just diet changes and higher thyroid levels after healing - addressing gut issues/Candidal overgrowth while using EMPowerPlus and other supplements.
Younger dd: formerly(?) Childhood-onset schizoaffective, TS, OCD with disabling migraines since infancy. After over 15 years, is "recovered" for 4 years after treating endocrine issues, food sensitivities, gut issues, sleep issues, nutritional/mitochondrial needs.
My neighbor has twin girls, one being autistic. One of her girls goes to our home school district, while the girl who is autisic goes to a neighboring district. The neighboring district is a large one compared to our small one. Because the larger district takes in kids with special needs from other districts it is better able to create some unique classes that are a better fit. Normally kids in my area are not allowed to choose which school they want, but only when they have special needs are they given that flexibility. If your home school does not offer a program that fits, does a neighboring district have a classroom with a low teacher to student ratio with other students that have simililar needs, and are you allowed to send your child there?
We have an appointment with the school tomorrow afternoon.
I am very nervous. Our neighboring district does have some great classrooms for special ed. programs. The problem is fighting our home district to get that. I am going to look up the info on this site and go in with more proper info. Unfortunately, you are only allowed to send your child to a neighboring district upon referal from your current district or if you are willing (able) to pay the 8,000 a year tuition.
The Co-op... does not help unless you are already enrolled within your home district. It is basically a company that contracts out special ed services (Social Worker, Psychologist, Speech Therapists) to the local districts. They do not provide classes or services otherwise. So, they may have 1 person rotating between 2-4 schools a week. For example - This guy I have been communicating with at the Middle school. He works the Middle school Monday (AM), Wednesday (PM) and Fridays (PM). at the Co-op Thursday (PM) at the highschool Monday (PM) Wednesday and Friday (AM) and at the Elementary school between that. It helps that his schedule is posted online :) But the same goes for the other special ed Professionals. So, while in class if you need assistance you most likely have a para-professional (An Aide) helping with the day to day.
Shelle, like I mentioned the last pdoc was treating him under PDD-NOS and ADHD and using the concerta to treat his ADHD. But I see what you mean. The mood is more intense with the meds - However the frequency of the fits he has are less frequent since the pdoc added Respideral. Our assessment was done completely med free to get a more accurate assessment. We lost his meds during a road trip in Tulsa, OK, and ended up getting out to Riverside, CA and back to Illinois with only a handful of issues. The day after our return was the first day we met the doctor doing the assessment, and he stated if we could do 2 weeks in a car without meds,could we hold off until the testing was completed. When it was finished, since we still had the prescriptions in hand from the old p-doc we refilled them immediately. I will definitely bring that up to the new guy we see on 10/5.
Thanks! This wholely feels so much more managable.
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Mom to 2 awesome kids
12 yr old boy
11 yr old boy - ADHD, MD (leaning toward BP), ODD, ED, Learning disabled, sensory issues, speech delays.
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Shelle, 49 in So Cal - Celexa 20mg, Xanax 0.5mg rarely as needed
Family Response Team member and CABF Support 11
rmadmom@hotmail.com
Single Mom to Rachel, 12 - BP, anxiety, ADHD (or maybe not) - Lamictal 200mg am+Seroquel 50mg am/200mg early pm, Therapeutic School
We also have Birdie, the love bird - she bites; and Scarlett, the kitten - she does too
FROM CABF: Do not start, stop, or change medication or other treatment for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.