Tuesday, October 8, 2013

Going Post-al

Post to Parent Group Monday, Oct. 7. 4:33 p.m.

We are a list to be called if there are any cancellations for the Neurologist which is unlikely, so we have 10 days until our appointment. We were, however, able to get a Psychiatric evaluation scheduled for this Friday. Hopefully we can make it through the week.

Today did not go well. My son decided he couldn't go to school today so my husband took him to the pediatrician to get his ears looked at. My older boys have 2 days off, so my eldest went along to help. Unfortunately my son did not allow the Dr. to look at his ears and put on a show.

We took our videos and write ups to all 3 doctors. It felt good to get our "homework" turned in. I was slightly disappointed to learn that the person trying to contact us was not for research but for a psychiatrist that agreed to take us on. I am happy that we can be seen this week. Looks like we're likely to meet our large deductible this year. Yea!

If anyone has any pros or cons for drugs to help with Miso, please let me know. I would like to be prepared when we go in. I'm pretty sure we will have no other option to get my son stabilized so he can be reasoned with. Praying for a "Hail Mary" play at this point. I don't see how we will be able to avoid hospitalization without a small miracle.
 Kristina - "I do agree that until your son can be calmer and more rational meds may be needed. But getting him to take them is another issue. It took putting my then 13 year old in an pediatric psych hospital for 10 days to accomplish this. She's now 16 and better with the meds etc."
 " .... Ugh. We have been in so many meds. Honestly we took her off everything but Zoloft. Then Xanax only as needed which is like flying, family dinners etc. This seems to be key in trying to deal with her miso. ...."
Bernadette - My heart is broken into a million pieces for you. Each person is different, so sad to say, you will have to see what works for him. Antidepressants and mood stabilizers did NOT help my daughter. They made her worse. Each time they convinced me to put her on an antidepressant, 3 weeks into it, she became suicidal. She attempted suicide each time.
Laura - Kristina, does the Zoloft seem to work or make any difference for her? We have been thinking about trying that particular one. It is amazing to me that so many Doctors seem uninterested in MIso and don't want to do the research to learn more about it.
Kristina - It seems to keep her level and more relaxed. It took a while to get her to the correct dosage though. ALSO when she would get her period OMG she was nuts. We ended up getting her B/C pills to keep her hormones in check and level non stop. 
Update:   Looks like we got lucky; Neurologist appointment has been bumped up to this Thursday. Psychiatrist appointment is Friday. This is shaping up to be an action-packed week!

 Post to Parent Group Tuesday 2:30 a.m.

Our pediatrician called this evening (last night by now) to check on our son. I filled him in. One of the areas of confusion/misconceptions about Misophonia is that of control. The doctor sees that there is some power to "turn it off" at school and in public and therefore thinks my son has control over it. I had to explain that control is an illusion and that fear of public exposure is what seems to keep it in check. By the time our son gets home he needs to release. I emphasized my belief that we are dealing with a neurological issue with a psychological component. Our doctor told me he has not had time to do much research. I told him about my support groups and that I am able to compare notes with people from all over the world. I also told him about the desire for doctors to join support groups & the Misophonia Association for information. At the very least, I asked him to make sure any interested researchers know that I want to get involved and help them unlock the mystery of Misophonia/4s.

I had a few thoughts I wanted to share here.

1. Pediatricians tend to be overworked and underpaid. Our doctor almost always calls us at night. He is dealing with so many different issues and Misophonia is new to him. He does not have much time for research.

2. I don't like the name Misophonia and either does our doctor. He says it reminds him of miso soup. Sometimes it helps to explain Misophonia as a sound processing disorder where the onset of puberty and the absence of Neural pruning creates miscued connections in the brain. I believe Misophonia to be a Neurological cousin to Autism. It wouldn't surprise me if one day this is part of "the spectrum" of S.P.D.s (sensory processing disorders.)

3. While Misophonia is a HUGE part of our lives and may not be as rare as first thought, this disorder is not on the radar of most physicians. We need to educate. I also have been advised to have a concise list to present to doctors. My husband and I made up lists of triggers and goals we want to achieve. (I made a timeline of triggers and added the page to my blog).

4. "Trust No One" - (from X-Files) - This is a bit of an exaggeration but I think we all have (or will) come to realize that we need to drive the process with our children. I value the information I am getting from groups which empowers my decisions. Do not be afraid to question diagnosis and prescriptions. Get 2nd & 3rd opinions if necessary.

5. Loved the group hug from my last post. I feel the love here! I know this group is saving me $$$ of therapy!

O.K. brain dump over and I will try to go back to sleep for a few more hours! <3
Patti: With my son, he's worse at home because WE, his family, are the worst triggers. I'm not sure your son is "dumping" on you when he gets home. I just think the triggers are worse at home because he is more emotionally attached to you. It is a very misunderstood condition, but talking about what they go through helps to educate people. No matter what category you put it in, people will still have trouble understanding why chewing gum sends our kids over the edge!!
Kristina: OMG!!!! I had a heated discussion with my mom today about this exact topic. She doesn't understand why my daughter doesn't act out in public. I kept saying it's the disorder and we are closest to her etc. She insists Jessie can control it. I'm so glad you wrote this!!!!
Leslie: I have always felt that in addition to my being close to my child and therefore her worst trigger, she reacts more at home because she has spent her whole day "holding it in". I am her "safe" person. My love is unconditional. She is comfortable to express herself and show her emotions at home without judgment.  

1 comment:

  1. The control issue is very misleading. It takes so much energy to keep from being exposed in public, when my son gets home, he's exhausted. It can also mean a bad tomorrow. I hope you all can get answers and help soon.