Yesterday, when I went to pick up Honeybunches' medications, I was told that they now needed prior authorizations. In talking with "P" the psych nurse practitioner, she described a "New horrible program which MassHealth has". They wanted prior auths for his Abilify, Clonidine and Tenex. He's been taking Clonidine since 2007, Abilify and Tenex since 2009. "P" said that she had to fight with them to keep him on Abilify, which she successfully did. They did not, however, want him on both Clonidine and Tenex since they are similar. Instead, tonight he went off them both cold turkey and onto Intuniv. He took it okay, after it passed his smell test. I am worried about Clonidine withdrawals, which I read so much about online last night but the pharmacist told me should not be an issue with Intuniv as a safety cushion. Here is more information about MassHealth's lovely new Pediatric Behavioral Health Medication Initiative. I am very concerned and frustrated. I spent much of the morning praying, reading bible verses and listening to worship music.
Showing posts with label medications. Show all posts
Showing posts with label medications. Show all posts
Wednesday, February 25, 2015
Wednesday, May 15, 2013
2nd opinion eval report
Last week I called the psychiatrist who did the 2nd opinion on Honeybunches meds, which the new pediatrician requested. I requested that they send the evaluation report to his current psychiatrist. Today at his appointment with her we finally got the results.
Some of the report goes back into his development from infancy and more. It is a pretty comprehensive 4 page evaluation summary. It begins with saying how Honeybunches "Is a very complicated boy and has an existing specialist for his psychiatric medication treatment". Next the doctor stated "As you know, these MCPAP consultations are not comprehensive psychiatric evaluations, therefore, I would like my recommendations to be seen as suggestions and ideas for further progress in his care rather than definitive recommendations". From there he went into his developmental history all the way back to infancy, which I provided him with as well as his psychiatric care history. He talked about his diagnoses (BP, ADHD, PDD-NOS, Receptive-Expressive Language Disorder and Anxiety Disorder). The doctor stated "I am not certain of the validity of all these diagnoses; however, mother describes his history to be very consistent with the autism spectrum disorder as well as having a very compelling overlay of significant mood disorder beyond the mood dysregulation which is ordinarily characteristic of autism spectrum disorders..." From there he went into his hospitalization and medication history. He then went into the family history noting that "His mother has been extremely well motivated to seek all the services that she needs to support ----'s development with his mental health and developmental disability."
Then finally he went onto his examination. He wrote "On examination I found --- to be a very pleasant and cooperative child. He had very apparent signs of autism spectrum disorder. His speech was monotone. He had repetitive verbal mannerisms. He had very poor eye contact. He did show a tendency to be somewhat perseverative. He did not engage in any age appropriate play activities, but was perfectly cooperative with talking. He had a tendency to be concrete in his responses. He had a positive mood throughout the interview. His affect was appropriate. He did not show anxiety. He did not have difficulty separating from his parents. He was not significantly restless or hyperactive. He was attentive to the interview and task at hand. He did not have any suicidal ideation. He did not have any signs or evidence of delusional thinking. He did not appear to respond to any internal stimuli. He was fully oriented. His memory was intact, actually very good for his age and for both immediate and long-term items. He had a reasonable degree of insight and showed normal judgement for his age. He had no tics. He did have some lip smacking movements, which appeared to be consistent with mild tardive dyskinesia. My overall impression of --- is that his history and examination is consistent with the diagnosis of autism spectrum disorder and I do think that there is a high likelihood that his diagnosis is complicated by the co-occuring presence of severe and significant mood disorder on the bipolar spectrum. Therefore, I am provisionally inclined to agree with both of these diagnoses of autism spectrum and bipolar disorder NOS. I do question the presence of a separate diagnosis of expressive-receptive language disorder as well as generalized anxiety disorder as well as ADHD, because I feel that these symptoms pertained to these additional diagnoses are attributed to his autism spectrum and mood disorder diagnoses."
He then goes into:
"I talked with ---'s parents about ideas about medications and I would be happy to discuss this further with his current psychiatric nurse. I shared with mother that the issue of the metabolic side effects of antipsychotic medications are the most important concerns in regard to medication adverse effects and the first priority should be to try to address this. I think it is very unlikely that the current trial of Seroquel is going to offer any advantages to the previous treatment of Abilify in regard to metabolic side effects. Regarding further directions in addressing the mood instability issues in the future, stage I would be to attempt a trial of discontinuation of Seroquel without adding any further mood stabilizing medications. It is possible that now that he is a little bit older, he no longer requires an antipsychotic medication to keep his mood under control. If he is able to tolerate being off the Seroquel and not on other antipsychotic medication, this would be optimal. If this is not possible, then stage II would be to consider trials of a secondary mood stabilizing medication other than an antipsychotic. Notably, he has not had any trials with Depakote, Tegratol or Topomax in the past and I believe that all three of these medications could be considered in addition to his current treatment with Lithium. If these medications do not work, then the third recommendation would be to very carefully and judiciously try conventional antipsychotic medications in very low doses. These would include potentially trials of haloperidol, Prolixin or Trilafon. These medications and doses could be more robust in their effectiveness and may not aggravate his tardive dyskinesia symptoms. They are much less likely to be associated with fatty liver or metabolic effects, then the atypical antipsychotics however of course his movement disorder will need to be closely monitored. After considering the relative advantages and disadvantages I would remark that I believe that the fatty liver is more serious of a concern than the risk of tardive dyskinesia, although admittedly tardive dyskinesia is also an extremely undesirable side effect. If none of these suggestions is helpful, then I would suggest considering further psychiatric consultation to explore other avenues for treatment." (Then he went into discussing some family history stuff regarding my stepson that I don't want to get into on here...) From there he said "Nonetheless, because of the strong family history of serious mood disorders on the mother's side of the family, I do think that it is reasonable to consider that bipolar spectrum disorder is an accurate secondary diagnosis in addition to his primary autism spectrum disorder."
When I emailed the regular psych nurse he sees after my appointment with this 2nd opinion doc telling her about his three step plan she immediately disagreed with it. I trust her judgement more because she knows Honeybunches much better. She did not agree that he would be okay without an antipsychotic. We did trial different ones in Dec-Feb which did not work out well at all, so he went back on Abilify but at a very low dose. She thought with his symptoms of Tardive Dyskinesia and Akathesia, that the old APs would be more likely to cause those symptoms. It did not sound like she approved of using them, which might be an agency decision. I agree that his ADHD, anxiety disorder and language disorder could go along with his Autism. I am glad that they clearly seen those the Autism and Bipolar, because those are what I have considered his main diagnoses for years now. I have always doubted the ADHD. I found it interesting that he seemed to think the autism was his primary diagnosis with mood disorder secondary from the way I understood what he wrote. The reason that was interesting to me, is because when he was three he got the Bipolar diagnosis, but did not get the Autism diagnosis until age six. I was happy to finally read this evaluation. IDK why the 2nd opinion's doc did not want to just give it to me. They were pretty insistent on only sharing it with doctors. That's why I am glad the current psych nurse is so awesome and gives me copies of everything lol.
Some of the report goes back into his development from infancy and more. It is a pretty comprehensive 4 page evaluation summary. It begins with saying how Honeybunches "Is a very complicated boy and has an existing specialist for his psychiatric medication treatment". Next the doctor stated "As you know, these MCPAP consultations are not comprehensive psychiatric evaluations, therefore, I would like my recommendations to be seen as suggestions and ideas for further progress in his care rather than definitive recommendations". From there he went into his developmental history all the way back to infancy, which I provided him with as well as his psychiatric care history. He talked about his diagnoses (BP, ADHD, PDD-NOS, Receptive-Expressive Language Disorder and Anxiety Disorder). The doctor stated "I am not certain of the validity of all these diagnoses; however, mother describes his history to be very consistent with the autism spectrum disorder as well as having a very compelling overlay of significant mood disorder beyond the mood dysregulation which is ordinarily characteristic of autism spectrum disorders..." From there he went into his hospitalization and medication history. He then went into the family history noting that "His mother has been extremely well motivated to seek all the services that she needs to support ----'s development with his mental health and developmental disability."
Then finally he went onto his examination. He wrote "On examination I found --- to be a very pleasant and cooperative child. He had very apparent signs of autism spectrum disorder. His speech was monotone. He had repetitive verbal mannerisms. He had very poor eye contact. He did show a tendency to be somewhat perseverative. He did not engage in any age appropriate play activities, but was perfectly cooperative with talking. He had a tendency to be concrete in his responses. He had a positive mood throughout the interview. His affect was appropriate. He did not show anxiety. He did not have difficulty separating from his parents. He was not significantly restless or hyperactive. He was attentive to the interview and task at hand. He did not have any suicidal ideation. He did not have any signs or evidence of delusional thinking. He did not appear to respond to any internal stimuli. He was fully oriented. His memory was intact, actually very good for his age and for both immediate and long-term items. He had a reasonable degree of insight and showed normal judgement for his age. He had no tics. He did have some lip smacking movements, which appeared to be consistent with mild tardive dyskinesia. My overall impression of --- is that his history and examination is consistent with the diagnosis of autism spectrum disorder and I do think that there is a high likelihood that his diagnosis is complicated by the co-occuring presence of severe and significant mood disorder on the bipolar spectrum. Therefore, I am provisionally inclined to agree with both of these diagnoses of autism spectrum and bipolar disorder NOS. I do question the presence of a separate diagnosis of expressive-receptive language disorder as well as generalized anxiety disorder as well as ADHD, because I feel that these symptoms pertained to these additional diagnoses are attributed to his autism spectrum and mood disorder diagnoses."
He then goes into:
"I talked with ---'s parents about ideas about medications and I would be happy to discuss this further with his current psychiatric nurse. I shared with mother that the issue of the metabolic side effects of antipsychotic medications are the most important concerns in regard to medication adverse effects and the first priority should be to try to address this. I think it is very unlikely that the current trial of Seroquel is going to offer any advantages to the previous treatment of Abilify in regard to metabolic side effects. Regarding further directions in addressing the mood instability issues in the future, stage I would be to attempt a trial of discontinuation of Seroquel without adding any further mood stabilizing medications. It is possible that now that he is a little bit older, he no longer requires an antipsychotic medication to keep his mood under control. If he is able to tolerate being off the Seroquel and not on other antipsychotic medication, this would be optimal. If this is not possible, then stage II would be to consider trials of a secondary mood stabilizing medication other than an antipsychotic. Notably, he has not had any trials with Depakote, Tegratol or Topomax in the past and I believe that all three of these medications could be considered in addition to his current treatment with Lithium. If these medications do not work, then the third recommendation would be to very carefully and judiciously try conventional antipsychotic medications in very low doses. These would include potentially trials of haloperidol, Prolixin or Trilafon. These medications and doses could be more robust in their effectiveness and may not aggravate his tardive dyskinesia symptoms. They are much less likely to be associated with fatty liver or metabolic effects, then the atypical antipsychotics however of course his movement disorder will need to be closely monitored. After considering the relative advantages and disadvantages I would remark that I believe that the fatty liver is more serious of a concern than the risk of tardive dyskinesia, although admittedly tardive dyskinesia is also an extremely undesirable side effect. If none of these suggestions is helpful, then I would suggest considering further psychiatric consultation to explore other avenues for treatment." (Then he went into discussing some family history stuff regarding my stepson that I don't want to get into on here...) From there he said "Nonetheless, because of the strong family history of serious mood disorders on the mother's side of the family, I do think that it is reasonable to consider that bipolar spectrum disorder is an accurate secondary diagnosis in addition to his primary autism spectrum disorder."
When I emailed the regular psych nurse he sees after my appointment with this 2nd opinion doc telling her about his three step plan she immediately disagreed with it. I trust her judgement more because she knows Honeybunches much better. She did not agree that he would be okay without an antipsychotic. We did trial different ones in Dec-Feb which did not work out well at all, so he went back on Abilify but at a very low dose. She thought with his symptoms of Tardive Dyskinesia and Akathesia, that the old APs would be more likely to cause those symptoms. It did not sound like she approved of using them, which might be an agency decision. I agree that his ADHD, anxiety disorder and language disorder could go along with his Autism. I am glad that they clearly seen those the Autism and Bipolar, because those are what I have considered his main diagnoses for years now. I have always doubted the ADHD. I found it interesting that he seemed to think the autism was his primary diagnosis with mood disorder secondary from the way I understood what he wrote. The reason that was interesting to me, is because when he was three he got the Bipolar diagnosis, but did not get the Autism diagnosis until age six. I was happy to finally read this evaluation. IDK why the 2nd opinion's doc did not want to just give it to me. They were pretty insistent on only sharing it with doctors. That's why I am glad the current psych nurse is so awesome and gives me copies of everything lol.
Thursday, March 14, 2013
Pdoc called
Bye Bye Seroquel. Hello again Abilify, but a
much lower dose. Pdoc emailed me back asking me to call her. It took her
so long to get back to me because she's been very sick for a couple
days. She was bedridden, but is getting better. She's decreasing the
Seroquel beginning tomorrow. Then she wants him on 1 mg Cogentin once a day and is putting
him back on Abilify starting tomorrow, but only 2.5 mg once a day. In the past he was on
10 mg, 15 mg and 20 mg. He was never on it so low. I don't think that
will work, but we'll see. She said we'll just keep a very close eye on
his liver enzymes through blood work. If that is not enough, she'll try
2.5 mg of Abilify twice a day. The next drug of choice she'd try is
Lamictal. She didn't want to try that now, because she said it's so
slow to work. She said it goes up in 25 mg intervals up to 100 mg 2x
day. She wanted to try the low dose Abilify 1st. She is against the
old APs (That the 2nd opinion pdoc mentioned) because of their side
effects. She doesn't want to use Depakote (Which is what she thinks Dr T
her boss lady would suggest and something the 2nd opinion doc
suggested) because it's metabolized through the liver. She didn't agree
with the 2nd opinion pdoc questioning his Bipolar, because as she said
"He clearly cycles" and Celexa made him suicidal. She also said she's going to research some of the
newer antipsychotics (New Risperdal and a few others she mentioned) to
see what she can find out about them and if our insurance would cover
them with prior authorizations. Insurance often denies requests for
various reasons.
Wednesday, March 13, 2013
Honeybunches Lip Puckering
The lip puckering stuff is even worse today. I
wrote to pdoc giving her another update, but still haven't heard from
her. I know she's going on vacation sometime this month. Maybe it's
this week. I timed him at 3 separate intervals today for two minutes
each. 1st time he had 58 lip puckers. 2nd time was 63 and 3rd time was
48. That is not good. I worry most about the social aspects of that
continuing to happen for him. What will the children at school think?
He doesn't even realize he's doing it. It happens when he's talking,
eating, standing, sitting, on the computer and anything else. That
doesn't seem to change it at all. It's getting a bit concerning because
although he had Tardive Dyskinesia on the Abilify, I don't remember the
lip puckering being this frequent. That time he also did tongue stuff,
that he's not doing yet. I asked pdoc how long the Cogentin should
take to work if it's going to. He had a pretty good day at school. He
did have a couple smaller incidents there. (Went on the preschool
structure "He knew he should not have been on". Then another time where
he got really mad, slammed his Ipad on the table, teacher said
something, then hestormed out of the room and put himself in the time
out space. After that he was okay the rest of the day his book says. At
home so far, he was a bit irritable right after school, but seems okay
now. He went for a walk with his oldest sister "Angel" (dd16) and did
well.
I just got an email from Honeybunches teacher. Part of it said: "Hi I forgot to write in his book today that his lips were moving constantly all day (the lip puckering) (1:1 aide) took data through out the day the worst one was 57 times in a minute. It seemed like it was interfering with his speech today. A couple of times, I had a very hard time understanding what he said...." another part said "His mood swings seem to be a little more stable he has been in a very good mood the last couple of days. He even let me hug him this morning. Although he was a little upset with me this afternoon when he slammed theI-Pad down on his desk and I took it and said in a very firm voice that is not how we take care of the I-pads. I think he was more surprised than anything. He made a be-line to the time-out room. When he came back he was fine. I made sure I praised him for acting appropriately in the classroom when he came back. Overall he had a very good day..." His teacher is good because she is also cautious about the Lithium being higher, asked if he needs to be drinking more water and if they should begin using his sunscreen now that the weather is a bit nicer.
I wrote to the pdoc about both the frequent incidences I've noticed, what the school noticed as well as what the 2nd opinion pdoc said yesterday. I'm still waiting for a reply.
I just got an email from Honeybunches teacher. Part of it said: "Hi I forgot to write in his book today that his lips were moving constantly all day (the lip puckering) (1:1 aide) took data through out the day the worst one was 57 times in a minute. It seemed like it was interfering with his speech today. A couple of times, I had a very hard time understanding what he said...." another part said "His mood swings seem to be a little more stable he has been in a very good mood the last couple of days. He even let me hug him this morning. Although he was a little upset with me this afternoon when he slammed theI-Pad down on his desk and I took it and said in a very firm voice that is not how we take care of the I-pads. I think he was more surprised than anything. He made a be-line to the time-out room. When he came back he was fine. I made sure I praised him for acting appropriately in the classroom when he came back. Overall he had a very good day..." His teacher is good because she is also cautious about the Lithium being higher, asked if he needs to be drinking more water and if they should begin using his sunscreen now that the weather is a bit nicer.
I wrote to the pdoc about both the frequent incidences I've noticed, what the school noticed as well as what the 2nd opinion pdoc said yesterday. I'm still waiting for a reply.
Tuesday, March 12, 2013
2nd opinion pdoc appointment
At the appointment it was Dr S (Who is the
medical director) along with two residents. It was well worth the trip
as he had new ideas. It went well. He spent 20 minutes going over his
developmental, behavioral, medication, diagnostic, family and other
histories. Then 20 minutes with Honeybunches alone. Then another 20
minutes with us going over his recommendations. Amazingly Honeybunches
did really well in there alone. I was nervous how that part was going to go, but agreed to try it.
Dr S believed that Seroquel was just as bad metabolically as Abilify so he didn't understand that switch. He actually thought that out of the atypical antipsychotics Abilify was one of the easiest on the liver, but he made it clear he did NOT think Honeybunches should go back on it. He said he'd recommend to do things with a three step plan as follows:
Step #1: See how he does with out any antipsychotic on less medications, by taking the Seroquel away and not replacing it with anything. (Which would just leave him on Clonidine, Tenex and Lithium). (He suggested this because of his "Fatty Liver" as the antipsychotics are the most likely cause.) I told him about the man in his belly who used to make him do bad things. He said because Honeybunches's older now it might not be an issue. He noticed Honeybunches doing the lip thing, which he believes might be TD or might just be part of his Autism. (Interesting, because Cogentin helps it, but this doc said it doesn't make true TD go away, because it would always be there even when coming off the offending med... I found that interesting too...)
(Hahaha... I can see suggestion #1 lasting only a couple days probably so that would be a very quick trial.) I think I'd trial that on a weekend or during the week of from school coming up in April, if the pdoc agrees.
Step # 2: If he can't handle #1, then add in a 2nd mood stabilizer such as Depakote, Tegretol or Topomax. Those are the three he suggested. I mentioned how I didn't think Tegratol would be a good idea because of his negative reaction to Trileptal. He said although they are cousins they are different so he should not have the same reaction.
Step # 3: If steps 1 and 2 don't work he said he'd suggest adding in a low dose "Old fashioned, conventional antipsychotic". The three he mentioned were Haldol, Perphenazine and Prolixen. He said although they do carry more of a risk with Tardive Dyskinesia, they'd be easier on his liver. He said just using a low dose of one of the old ones could be equivalent to the "High amount of Abilify he was on previously". He said the old ones take a fraction of the dose to be just as or more effective.
He said that the fatty liver is life threatening while Tardive Dyskinesia would not be. He believed that Honeybunches's ADHD, Generalized Anxiety Disorder, Receptive-Expressive Language Disorder and even possibly his "Mood liability" from the "Mood disorder" all could be related to his Autism Spectrum Disorder. (Notice he didn't mention BP and was surprised when I told him how Honeybunches was diagnosed with it at age three.) I asked him if children with Autism get suicidal. He said "No". Then I asked him about if he didn't have Bipolar would Lithium still work. He said it might. (I don't agree with him about the Bipolar being part of the ASD, but do agree with the ADHD, language disorder and GAD possibly being part of it.)
I wrote to his regular pdoc to see what she wants to do. I told her I trust her judgment a lot more than a doctor who only spent one hour with us. (No more than an hour as he was very strict on the time limits steady looking at the clock, which I hate.) I appreciate the new insight though.
I signed a release so Dr S can send a copy of the report to her too. So I'll see where this goes from here. It was good to have new ideas. The pdoc he sees regularly thought that the old APs would be worse for their side effects, which seems to be opposite thinking than this doc had. She made it pretty clear before that she didn't want to touch the old ones. I was surprised that he mentioned 2 mood stabilizers, but he said some children do really well with two instead of an antipsychotic.
Dr S believed that Seroquel was just as bad metabolically as Abilify so he didn't understand that switch. He actually thought that out of the atypical antipsychotics Abilify was one of the easiest on the liver, but he made it clear he did NOT think Honeybunches should go back on it. He said he'd recommend to do things with a three step plan as follows:
Step #1: See how he does with out any antipsychotic on less medications, by taking the Seroquel away and not replacing it with anything. (Which would just leave him on Clonidine, Tenex and Lithium). (He suggested this because of his "Fatty Liver" as the antipsychotics are the most likely cause.) I told him about the man in his belly who used to make him do bad things. He said because Honeybunches's older now it might not be an issue. He noticed Honeybunches doing the lip thing, which he believes might be TD or might just be part of his Autism. (Interesting, because Cogentin helps it, but this doc said it doesn't make true TD go away, because it would always be there even when coming off the offending med... I found that interesting too...)
(Hahaha... I can see suggestion #1 lasting only a couple days probably so that would be a very quick trial.) I think I'd trial that on a weekend or during the week of from school coming up in April, if the pdoc agrees.
Step # 2: If he can't handle #1, then add in a 2nd mood stabilizer such as Depakote, Tegretol or Topomax. Those are the three he suggested. I mentioned how I didn't think Tegratol would be a good idea because of his negative reaction to Trileptal. He said although they are cousins they are different so he should not have the same reaction.
Step # 3: If steps 1 and 2 don't work he said he'd suggest adding in a low dose "Old fashioned, conventional antipsychotic". The three he mentioned were Haldol, Perphenazine and Prolixen. He said although they do carry more of a risk with Tardive Dyskinesia, they'd be easier on his liver. He said just using a low dose of one of the old ones could be equivalent to the "High amount of Abilify he was on previously". He said the old ones take a fraction of the dose to be just as or more effective.
He said that the fatty liver is life threatening while Tardive Dyskinesia would not be. He believed that Honeybunches's ADHD, Generalized Anxiety Disorder, Receptive-Expressive Language Disorder and even possibly his "Mood liability" from the "Mood disorder" all could be related to his Autism Spectrum Disorder. (Notice he didn't mention BP and was surprised when I told him how Honeybunches was diagnosed with it at age three.) I asked him if children with Autism get suicidal. He said "No". Then I asked him about if he didn't have Bipolar would Lithium still work. He said it might. (I don't agree with him about the Bipolar being part of the ASD, but do agree with the ADHD, language disorder and GAD possibly being part of it.)
I wrote to his regular pdoc to see what she wants to do. I told her I trust her judgment a lot more than a doctor who only spent one hour with us. (No more than an hour as he was very strict on the time limits steady looking at the clock, which I hate.) I appreciate the new insight though.
I signed a release so Dr S can send a copy of the report to her too. So I'll see where this goes from here. It was good to have new ideas. The pdoc he sees regularly thought that the old APs would be worse for their side effects, which seems to be opposite thinking than this doc had. She made it pretty clear before that she didn't want to touch the old ones. I was surprised that he mentioned 2 mood stabilizers, but he said some children do really well with two instead of an antipsychotic.
So I guess now I just wait and
see what if anything his regular pdoc wants to do. While I am waiting, I
can wait to see if DCF comes to pay us a visit. While alone, Honeybunches
disclosed some old info about Shnooks doing something inappropriate to
him. DCF should have it in their file, because it was years ago
(2007-8ish) when I told them something might have happened, but they
blew it off because they said Honeybunches was not an appropriate child to
interview, gave Shnooks a screen which showed he was at low-risk to
offend and did nothing. Technically, I believe that this doc has to
file a report anyways, although I explained what I knew (Plus how we
were not exactly sure if anything did happen with Honeybunches) in detail. I don't
want to go into too many details about that, but Honeybunches didn't talk
about it since 2008 until last week when we were driving down the
street. We seen Shnooks. He said "Whose that? Oh yeah the boy who
_____". :( All I can say is I know we made the right decision not
letting that boy back into our house. I'm glad he left in 2010.
Sometimes I am mad at DCF for pushing for us to take him back in 2008
after I disclosed what Honeybunches told me back then. Shnooks was in their
custody through a CHINS, at an RTC which closed. They should not have
sent him back here. We never should have taken him back. Oh well, I
know we tried to give him a good life. So I think the doc probably did file, if for no other reason than to be a good example to his residents. Hopefully it will only go as far as DCF's desk, because it should all be in their records plus we haven't had contact with Shnooks since the Summer of 2010.
On another note, the Seroquel seems to be giving Honeybunches symptoms of the Tardive Dyskinesia again. School told me this morning that yesterday and in the few minutes he was there today before they called me, that they noticed lip puckering like he was going to blow a kiss and holding it there. I wrote to his pdoc, who got back to me quickly and put him back on Cogentin. That's one thing I love most about her. She always returns my calls or emails quickly.
Friday, January 4, 2013
Happy New Year Update
I realized it's been a couple weeks since I gave an update. We had a great Christmas. All the children were happy. :) Honeybunches sang "Jingle Bell Rock" Karaoke
with his aunt on Christmas Eve. That was so cute lol. :) On Christmas Day he tried waking up at 2:30 am to open presents lol. I made him wait. He fussed for a bit in his
room then got quiet. An hour later, him and his sister were trying to
watch tv in the living room. That was not happening. I made them both
go back to bed. He fussed for a few, then I guess went back to sleep
until about 5:30 when we finally opened them. He went to the gas station up the street later that day with his sister and came back with these for me:
He bought them with his very own money. It was such a special moment and so sweet. Another very precious Christmas moment was when Honeybunches asked me who his frog pillow pet
was from. I told him Santa. He said "Can I pray out loud or do I have
to pray in my head"? I told him either way. Then he closed his eyes
for a moment. I think he was praying to Santa lol. He has been very
thankful, appreciative and full of hugs today. He took a nap this
afternoon, which rarely happens but was greatly appreciated because
Mommy and Daddy napped at the same time.
Earlier in the day he asked me how he could say "Thank you" to Santa.
I told him that Santa will hear what he is thinking. We frequently
pray, saying Grace at dinner (Which he really never joins in to say
anything in) so I think that's where he got the concept of praying to
Santa. That was one of the times I want to always remember. So
precious!
He began the Geodon a day late, on the 27th. So far he's been fine. I don't notice any changes for better or worse. He seems pretty much the same to me.
I got Honeybunches a new pediatrician. He's awesome! We actually seen him today for a sick visit. When I mentioned he had a cold since November 8th they wanted to see him. Of course, his lungs sounded fine while we were there... BUT this doc was different. He ordered some blood work including IcG testing, RAST allergy testing to check for "Inhalant Allergens" and also checked his Vitamin D level because he said low vitamin D can aggrivate asthma. At the lab Honeybunches was impressed because they had toys. That made him like that place lol. The doc seemed surprised that Honeybunches has never been tested for allergies before. He said if he's not better in a couple weeks he is thinking on doing a chest x-ray. He also said he thinks Honeybunches should see an Endocrinologist along with their own GI doctor. Time to look up another specialist and what they do lol. I will keep his current counseling and psychiatrist where they are, but change his GI doc, Nutritionist and Developmental Behavioral Pediatrician to this docs network. The way the doc made it sound, everyone would be on the same page that way. How things have been going nobody wanted to deal with him and his cholesterol, triglycerides and weight issues. The GI doc would tell me talk to his psychiatrist. Psychiatrist tells me to talk to his primary care doc. Primary care doc said that is why she referred him to his GI doc. Having everyone on the same page sounds like it would be awesome lol. This doc said that maybe he'd benefit from Omega 3. I told him how he's allergic to fish oil. He said there is some other more condensed form. We'll talk more about all that at his intake visit at the end of February. He prescribed Honeybunches a different preventive inhaler as well as a nasal spray and wants to see him again in two weeks.
A little while after we returned home, the doc called to talk to me for about 15 minutes to get more history on Honeybunches~! That really impressed me. He said that he doesn't think Honeybunches needs the Nutritionist he's been seeing. He'd like him to see an Endocrinologist who "Deals with overweight children" at a major hospital he's affiliated with instead. He said once he gets Honeybunches' records, he'll get all this straightened out. He won't even wait for the intake appointment to get that referral in, just for his records. :) :) :) I am a happy Momma right now. I guess that's why it is important to listen to that voice inside that tells you it's time for change or that things just aren't right. No doc has ever called me to talk that long. I am even more impressed~!!!!
DH went to NYC until Monday evening for his sister's wedding which is Saturday. When we dropped him off at the bus yesterday, Honeybunches cried for a few minutes but has been okay since. He did awesome for me today at the docs, shopping and on our other errands. I hope the weekend goes as smooth as today has. I wish I could clone myself though. He gets so stuck on things. For example, he's into tracking where things are on Ebay that we ordered. He wants to check it about 20x per day and wants me to look each time. I was busy unpacking groceries and doing housework. When he wants me to look, he wants me to look now or he gets upset. Maybe he's more needy because DH is not home, so I did look almost each time to keep him happy.
The insurance company is giving us a hard time getting the 60 mg Geodon. The pdoc had to fill out a prior authorization to get them. She worked a way around it to get him enough pills for 10 days by getting 20 mg tablets and 40 mg tablets. He'll take each one twice a day to make 60. I can't understand insurance companies sometimes. It would be cheaper for them just to cover the 60 mgs. Doing it that way won't last long either though because the insurance only allows 60 Geodon pills in a month, even on the generic. IDK what we'll do if this all doesn't get straightened out in 10 days. We might end up back at square one.
He began the Geodon a day late, on the 27th. So far he's been fine. I don't notice any changes for better or worse. He seems pretty much the same to me.
I got Honeybunches a new pediatrician. He's awesome! We actually seen him today for a sick visit. When I mentioned he had a cold since November 8th they wanted to see him. Of course, his lungs sounded fine while we were there... BUT this doc was different. He ordered some blood work including IcG testing, RAST allergy testing to check for "Inhalant Allergens" and also checked his Vitamin D level because he said low vitamin D can aggrivate asthma. At the lab Honeybunches was impressed because they had toys. That made him like that place lol. The doc seemed surprised that Honeybunches has never been tested for allergies before. He said if he's not better in a couple weeks he is thinking on doing a chest x-ray. He also said he thinks Honeybunches should see an Endocrinologist along with their own GI doctor. Time to look up another specialist and what they do lol. I will keep his current counseling and psychiatrist where they are, but change his GI doc, Nutritionist and Developmental Behavioral Pediatrician to this docs network. The way the doc made it sound, everyone would be on the same page that way. How things have been going nobody wanted to deal with him and his cholesterol, triglycerides and weight issues. The GI doc would tell me talk to his psychiatrist. Psychiatrist tells me to talk to his primary care doc. Primary care doc said that is why she referred him to his GI doc. Having everyone on the same page sounds like it would be awesome lol. This doc said that maybe he'd benefit from Omega 3. I told him how he's allergic to fish oil. He said there is some other more condensed form. We'll talk more about all that at his intake visit at the end of February. He prescribed Honeybunches a different preventive inhaler as well as a nasal spray and wants to see him again in two weeks.
A little while after we returned home, the doc called to talk to me for about 15 minutes to get more history on Honeybunches~! That really impressed me. He said that he doesn't think Honeybunches needs the Nutritionist he's been seeing. He'd like him to see an Endocrinologist who "Deals with overweight children" at a major hospital he's affiliated with instead. He said once he gets Honeybunches' records, he'll get all this straightened out. He won't even wait for the intake appointment to get that referral in, just for his records. :) :) :) I am a happy Momma right now. I guess that's why it is important to listen to that voice inside that tells you it's time for change or that things just aren't right. No doc has ever called me to talk that long. I am even more impressed~!!!!
DH went to NYC until Monday evening for his sister's wedding which is Saturday. When we dropped him off at the bus yesterday, Honeybunches cried for a few minutes but has been okay since. He did awesome for me today at the docs, shopping and on our other errands. I hope the weekend goes as smooth as today has. I wish I could clone myself though. He gets so stuck on things. For example, he's into tracking where things are on Ebay that we ordered. He wants to check it about 20x per day and wants me to look each time. I was busy unpacking groceries and doing housework. When he wants me to look, he wants me to look now or he gets upset. Maybe he's more needy because DH is not home, so I did look almost each time to keep him happy.
The insurance company is giving us a hard time getting the 60 mg Geodon. The pdoc had to fill out a prior authorization to get them. She worked a way around it to get him enough pills for 10 days by getting 20 mg tablets and 40 mg tablets. He'll take each one twice a day to make 60. I can't understand insurance companies sometimes. It would be cheaper for them just to cover the 60 mgs. Doing it that way won't last long either though because the insurance only allows 60 Geodon pills in a month, even on the generic. IDK what we'll do if this all doesn't get straightened out in 10 days. We might end up back at square one.
Monday, December 24, 2012
Bye Bye Abilify.... Hello Geodon~!
Honeybunches seen the pdoc this afternoon. After looking at his most recent blood work from last week, we discussed possibly putting him on Geodon and taking him off the Abilify. She basically let me decide if we should leave things alone or if I thought we should change. After how concerned his primary care doc sounded on the phone and seeing his blood work for myself I thought it would be best if we did change. She told me that Geodon is gentler on his body, especially his liver. We are going to go up on Geodon slowly, then once he's up to where she wants him, then we will titrate him off the Abilify. Here is her plan:
Dec 26/27
20 mg 1x day
Dec 28/29
20 mg 2x day
Dec 30/31
20 mg am and 40 mg pm
Jan 1/2
40 mg 2x day
Jan 3/4
40 mg am and 60 mg pm
Jan 5 and ongoing....
60 mg 2x day
Then we'll wait 5 days. On January 10th, we'll begin titrating down his Abilify. Right now he's on 5 mg 2x day. Here's how she's going to take him off:
Jan 10-12
2.5 mg am and 5 mg pm
Jan 13-15
2.5 mg 2x day
Jan 16-18
2.5 mg once a day
Jan 19th stop Abilify
She was saying how we could go up to 160 mg on the Geodon if we have to. She was sharing with us how she recently went to a conference where they mentioned that Geodon seems to not work with children because doctors don't go high enough on it, so she wants to get his dose up there. So even when we get him where she wants him initially, there will still be room to go up. The pdoc gave me her cell phone # to call her, even over the holidays, if we have to. She is taking the nice chart/calendar she made me about his med titrations with her wherever she goes she said. :)
I am scared to change, but the time has come. She gave me a copy of his labs. They did a ton of blood work, but here are the concerning #s:
D. Bili 0.3 Should be 0.0-0.2
Cholesterol 240 Should be under 200
Triglycerides 352 Should be under 150
HDL 35 (Says that is low)
AST 88 Should be 10-36
ALT 131 Should be 24-49
His Lithium level was good at .9.
I hope things go well with this med change. Pdoc thinks Geodon would be easier on his liver as well as not cause as many issues with his triglycerides and liver enzymes.
Dec 26/27
20 mg 1x day
Dec 28/29
20 mg 2x day
Dec 30/31
20 mg am and 40 mg pm
Jan 1/2
40 mg 2x day
Jan 3/4
40 mg am and 60 mg pm
Jan 5 and ongoing....
60 mg 2x day
Then we'll wait 5 days. On January 10th, we'll begin titrating down his Abilify. Right now he's on 5 mg 2x day. Here's how she's going to take him off:
Jan 10-12
2.5 mg am and 5 mg pm
Jan 13-15
2.5 mg 2x day
Jan 16-18
2.5 mg once a day
Jan 19th stop Abilify
She was saying how we could go up to 160 mg on the Geodon if we have to. She was sharing with us how she recently went to a conference where they mentioned that Geodon seems to not work with children because doctors don't go high enough on it, so she wants to get his dose up there. So even when we get him where she wants him initially, there will still be room to go up. The pdoc gave me her cell phone # to call her, even over the holidays, if we have to. She is taking the nice chart/calendar she made me about his med titrations with her wherever she goes she said. :)
I am scared to change, but the time has come. She gave me a copy of his labs. They did a ton of blood work, but here are the concerning #s:
D. Bili 0.3 Should be 0.0-0.2
Cholesterol 240 Should be under 200
Triglycerides 352 Should be under 150
HDL 35 (Says that is low)
AST 88 Should be 10-36
ALT 131 Should be 24-49
His Lithium level was good at .9.
I hope things go well with this med change. Pdoc thinks Geodon would be easier on his liver as well as not cause as many issues with his triglycerides and liver enzymes.
Friday, December 23, 2011
Honeybunches medication and provider history
Age 3 1/2
- pdoc #1 put him on Ritalin. Made him rage 5 hours nonstop. Pdoc #1 diagnosed him with BP with Rapid Cycling, Learning Disorder NOS and ADHD Combined Type.
- Began counseling at local center. They graduated him lol.
- Pdoc #2 diagnosed him with Mood Disorder NOS (Told me it was against center policy to diagnose any child his age with BP even thought he met all the adult criteria). Put Honeybunches on Clonidine. Then Risperdal. Clonidine made him too sleepy during the day. Risperdal made him gain 65 lbs in 2 years. The Risperdal worked great in the beginning until the generic came out. Then it never worked for him again and insurance refused to pay for the name brand.
- Began seeing his counselor "L" whom he still sees today (Almost 6 years later)!
- Psych exam: 2 sessions 1 1/2 hours each. Diagnosed: ADHD, Cognitive Disorder NOS, Executive Functioning Weakness, R/O RAD, R/O BP, R/O ODD. Neither his counselor nor I agreed with the ADHD. I one I most disagreed with was the RAD though.
- Began seeing pdoc #3. He placed E on Lithium (Which has worked wonders... later on once it was raised to the therapeutic level). Unfortunetly he did not take E off his previous meds that pdoc #2 put him on. They had him in a mixed state.
- Honeybunches began trying to think of ways to end his precious life thanks to being on Celexa. Some of the ways he thought of were:
- Jumping in a pond
- Jumping off the balcony in our front room which we quickly got sealed off with a wall
- Asking if jumping out the window, lying in the street, getting hit by a car and smooshed like a bug would make him go to heaven.
- Increased aggitation. Aggressive to animals. Aggressive at school. Throwing objects. Unbuckling in vehicle. Running off or wandering a lot. Had to put alarms on the doors so we would know when he left because he was so quick and sneaky. He was always most aggressive with the children he liked the most. Very unstable at this time. Seemed to have no control over himself.
- Very quick mood swings. He'd go from happy, extremely hyper, to depressed, irritable or mixed hyper with depression so quickly. It was so heartbreaking. I remember he'd tell me "Sorry Momma. I tried to have a good day. I tried my best but my body would not listen."
- After his rages he always complained his head hurt.
- Major anxiety. Withdrawn a lot. Stores too overstimulating.
- Began seeing pdoc #4 at Tufts. He was awesome. Very understanding. He got us in contact with the CCSN at Tufts for further testing. I was sad when his contract ended and he moved back to CA.
- Honeybunches made 4 trips to different ERs in search of mental health services to be turned away. Finally on the last one he was admitted to his first phosp stay at only age six. He stayed for 15 days, well 16 if we count the almost day spent in the ER! Hospitalizing him was the hardest thing I ever had to do for him but also turned out to be the best. He's been a different child since then. Things are not perfect, but they are better than I ever could have imagined. In the phosp they diagnosed him with PDD-NOS. In the phosp they took him off his previous combo of Clonidine 4x day, Risperdal, Vistaril and Celexa. They changed his Lithium to the ER version, put him on Abilify and only gave him Clonidine at night. They tried taking him off that, but then he could not sleep.
- Honeybunches underwent extensive IEE testing at Tufts Medical Center. Testing included
- Neuropsych Eval combined with Educational Eval: Diagnosed with extensive varied learning delays, Nonverbal Learning Disorder.
- Speech Eval: Diagnosed with Receptive-Expressive Language Disorder
- Neurodevelopmental Behavioral Pediatrics Eval: Diagnosed with BP, PDD-NOS, ADHD, Generalized Anxiety Disorder
- Began seeing pdoc #5 also at Tufts. Seen her a few months then because Honeybunches continued doing well we decided to bring him to see somebody closer to home which brought us to pdoc #6. This pdoc put him on Tenex to help with what the school called his "ADHD symptoms".
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