Skip to main content

PANDAS, Prozac, Buspar, Tics and Staying Positive



Good morning. It is Friday, 8:30 am and my mom came to the house and took our 6-year-old to school since DH has had to leave early this week for work. Both Ewen and Amira are still asleep. I'm sitting in bed on the laptop, letting them sleep because Amira was up in the night a couple of times and I want Ewen to have lots of time not twitching, which is only when he sleeps.  He did fall asleep last night at 9:45 though so I think now we are going on 11 hours! That is good since he was up the night before at 3am and didn't go back to sleep after that.

Both kids will be home with me today too since I told Ewen he could start school on Monday, and Amira's tutor's daughter is sick. So I won't be getting much work done I suppose today. Ewen has CBT this afternoon too which is good.

I don't know if bringing down his medicine dose to 3.5 ML's will ease his tics or not. I look up sudden panic disorder online and I can never find a match of exactly what happened to him. But when I Google, sudden onset of tics all I find is PANDAS, which is strep of the brain and it is something that happens to kids after they have been ill. His pediatrician wanted us to treat him for PANDAS anyway because all of the other pieces fit except for the fact that he wasn't ill before the onset of the panic and tics. So we gave him antibiotics for 10 days, but then DH and I decided to stop that because it seemed like there were too many medicines in the mix with the propranolol, inositol, prozac, antibiotics and probiotics. It was impossible to know what was making him feel good or bad at that point. So we took away the antibiotics and probiotics. But now I am wondering if those were the most important.  I would hate to give him antibiotics though if he doesn't need them, and have his body build up a tolerance to something he may need in the future. So we don't know what to do. His psychiatrist said that if he wasn't sick first then he doesn't have PANDAS, which is another reason we took him off the antibiotics. His pediatrician treats a lot of kids for it too and we didn't want her to be prescribing him the treatment to be a part of her test plan.

Perhaps we should do it. If Ewen doesn't get comfortable perhaps it is because he has this PANDAS business. But he didn't even test positive for strep, and he never has actually.

And then I worry he has a brain tumor, but that is probably just anxiety talking rather than reason. But he has had other weird things in the past, like Alice in Wonderland Syndrome and sleep walking and night terrors...then this sudden onset of panic and anxiety. He is just a Brilliant and weird kid neurologically and I hope that we aren't missing anything by not testing for a brain tumor. But we can't just give him something as serious as an MRI to calm my mama fears. It has to be medically warranted.

I want his huffing and patting to calm down. I want him to be able to sit and relax for a moment without having his brain occupied. Thank goodness for sleep, which is what he is doing right now.

So I gave myself a challenge this week. I decided I am not going to say anything negative to any family member about anything, for 4 days. I think that will help DH. We have to stay positive or we will end up falling to bits. Anyway, through it all, we are very fortunate that we have smart, sweet and amazing kids. Amira is doing fantastic on the Buspar with no side effects and she has stopped sobbing every day twice a day. She is calm and happy. That is wonderful. Maybe that is what Ewen needs too?

I just heard a huff. I guess that means that Ewen is awake.


Labels:

Comments

Post a Comment

Popular posts from this blog

Still Chugging Along

It has been almost a month now since the terrible effects of the prednisone.   This morning I gave 50 mg hydroxyzine and 500mg of phenibut and she still said she wasn't feeling great at 11:30am. So I gave her 3 droppers of Valerian Calm, which seems to offer a small boost of happiness sometimes.   I stopped her 5HTP and replaced it with 10mg of fluoxatine. But yesterday she said she was having a hard time peeing. So if that happens again we will have to re-evaluate.   After she is comfortable on an SSRI I want to start the minocycline antibiotic, but I don't want to do that until I get her SSRI support up incase the antibiotic makes her feel worse I read minocylcine can have negative psychiatric effects for some people). I have maxed out her supports with the phenibut and the hydroxyzine and have nothing left to give if the minocycline does something weird neurological too.  So to support myself, I took 20mg of fluoxatine (prozac) last night and feel w...
Post a Comment
Read more

Today's Basics and a Few Blessings

(Fish oil, probiotics, 4ml prozac, melatonin) Ewen did better today than the past two. He was just a little twitchy going to sleep and was able to hang out at Starbucks this afternoon without begging for a screen to look at. I told him I thought he had lost the ability to entertain himself so he said he was going to try. I told him last night that to go to sleep you have to be calm and let yourself think and then fall asleep. I said to make sure to keep Trash (what he calls his anxiety and OCD) out of it and he agreed. He still needs me to sit in there every night while he falls asleep. So I sit in his bean bag and play Clash Royal on my phone. Today he did well overall I think. I also wonder if it is because we are on the 3rd day after taking 500mg of Zithromax? He was huffing a bit today though, but not all day long and mostly when he was playing video games on his computer. I am still taking Prozac too and it makes me very sleepy. I could sleep all day. It is very hard to get ou...
Post a Comment
Read more

Out of the Hole

( 4ml Prozac, fish oil, 1/2 magnesium, probiotics, 1mg melatonin) Today Ewen went to a birthday party a couple of hours from home and had a lot of fun. He hung out with his dad a lot today which is what he used to do before he got sick. When he got sick he completely switched from Mike to needing me 24/7. He was not interested in hanging out with Mike. Daddy was all about watching soccer, playing soccer, enjoying everything that Ewen was good at and going out and having fun. Mommy was there to make sure he was feeling OK. So he switched from Mike to me. I realized this morning as Mike got up early to get Ewen's soccer stuff together and go to the store to get a present for the party, that he was taking over his old role as Ewen's care taker. I like that because Ewen has to be so active all the time that I don't have time to spend with the girls. So if Mike focusses on Ewen with his crazy social life and activities, I can focus on the girls and everything else. It was re...
Post a Comment
Read more