Archive for the 'medication' Category

So, we all have our challenges, right….

This blog is mainly about Mariella and our challenges with her asthma and her tummy “issue”. I do have an older daughter as well. I’d love to say that her life goes along swimmingly, with no problems…but I’d be a liar if I did. We’re in a nice, stable patch with her right now…but I thought I’d take the opportunity to tell a little bit of her story.

Abigayle was born in 2000. She was a month early, due to the fact that I was toxemic. I basically skipped right over pre-eclampsia and went straight to the doctor saying, “I’m surprised you’re not seizing already.” Due to my Gestational Diabetes, she was still a big baby (over 7 lbs) but she lost almost 2 lbs in the hospital before she came home. She behaved in the manner of most preemies. She was sleepy, she didn’t feed well, and she was cold all the time, but we got through it.
She was a good baby. Other than her little blip of RSV, where she spent 12 days in PICU, she was a healthy baby. She still has reactive airways, but it’s manageable.
Abby’s struggles are a little harder to define. At about 18 months old, we started realizing that her tantrums were coming far more often than a “typical child” By the time she was three, she was having tantrums upwards of 20 times a day. Some would pass relatively quickly, others lasted for hours. They often were about things as minor as the fact that I gave her the wrong purple cup…even if the purple cup I gave her was IDENTICAL to the cup she wanted.
She also stopped sleeping. She would be messing around her room until 2 or 3 in the morning, and then be up for the day at 6AM. We were all exhausted. I finally brought her to the doctor and asked, no, BEGGED them to fix her. She started on Clonidine at that point, and it was wonderful…for the first time in a long time, she was sleeping. It didn’t help the tantrums, or the defiance, or the other behavior issues…but at least I wasn’t so sleep deprived that it was IMPOSSIBLE to deal with them. It was still DIFFICULT to deal with them, but not impossible.
We started to just give in to whatever she wanted…anything to avoid a tantrum, or a rage. She went from being a sweet, cuddly, loving little girl to a child who was prickly, angry, and distant. We began seeing a therapist, who was basically useless. She would send us out to the waiting room, and then not tell us what was happening in the session. I’m all about confidentiality in therapy…for teens and adults…NOT a three year old. We left that therapist, and muddled through for a while, until we began seeing another therapist. This was a behavioral psychologist, and the therapy was as much for me as it was for her. He taught me tools to deal with the rages and the anger and the defiance. He also realized that she was beyond his scope, and that she most likely needed medication. A scary, scary thought when your child isn’t yet 5.
He helped us find a child psychiatrist who would probably be willing to prescribe medication for such a young child. We met with her, and we talked about all the possibilities. In young children, many of the psychiatric illnesses look the same. It was terrifying to hear things like “pediatric bipolar disorder” and “very early onset schizophrenia” along with the more “typical” diagnosis, like Oppositional Defiance Disorder and depression, and Autism.
Because I was diagnosed with depression in college, and when going over my history, the doctor mentioned that I probably should have been medicated when I was two…and the fact that Abby is a carbon copy of me at that age…we were pretty confident that we were looking at depression and anxiety. We made the decision to treat her with Zoloft. Within a month, things looked SO much better. She was still a challenge, and she still had rages and tantrums, but the severity and the sheer number of them went down. (It’s important to note that Abby’s first words were “Hi, Dada” into a pretend phone, at just over 6 months of age. Communication, or lack there of were never at the root of her tantrums…though, lack of ability to communicate are the typical cause of toddler tantrums)
In those early days, we still had real, scary things to deal with. When Mariella was about two weeks old, I came out of the bathroom to find Abby with a pillow over the baby’s face. When I asked her what she was doing, she looked at me, and said, “I’m trying to kill the baby.” There was also the time when she asked me something, and my answer was “not right now…in couple minutes” and she looked at me and said “I’m so sad with you, I’m going to cut myself into a million pieces.” So, I didn’t go to the bathroom alone for almost 2 years, and all the knives, including butter knives, were stored on top of the refrigerator.
Things a so much better now. I always know when she’s due for a med adjustment…she gets more irritable, more defiant, and rages more easily. These times are fewer and farther between, as she isn’t growing quite as fast as she was as a toddler and preschooler.
She was also diagnosed with ADHD at about this time, but we chose not to treat the ADHD at that time. It was hard enough to make the decision to start an antidepressant, I just couldn’t start a stimulant at the same time. She did OK in preschool, she had a horrible teacher in kindergarten, but first and second grade were also pretty good. In third grade, she started to really have trouble, so we made the decision to begin ADDerall, and it’s one of those times when I feel like kicking myself, and start waiting for the “Bad Mom of the Year” award to be brought to my house. She is doing so well on the new med.
We still see some ‘red flag’ behaviors, and I still wouldn’t be surprised if at sometime Abby is given a spectrum diagnosis. If she does fall on the spectrum, she is high on the spectrum, and is functioning well enough. She has a plethora of sensory integration issues, tactile defensiveness, and other such things. She struggles socially. Her psychiatrist said those things can also be attributed to the fact that she is gifted, so really who knows. A diagnosis won’t change anything…and we won’t persue it, unless we have to.
She thrives in school. She craves the structure that school gives to her. She flounders at home on weekends and vacations. I try to structure our day, but it just isn’t possible to do so to the extent that she would like. It makes it difficult sometimes, be we handle it.
Abby comes by many of her issues honestly. As I said, I was diagnosed with depression when I was in college. I was diagnosed with ADHD at the same time. There is a diagnostic tool call the Adult Connor’s Scale, and I answered every question appropriately for ADHD. The doctor looked at me and said…”you graduated from high school….REALLY?…HOW?” According to him, I was one of the most severely affected adults with ADHD that he had ever met. I have always opted not to be treated, because, well…”I’ve functioned well enough so far.” Though, according to Abby’s psychiatrist, I’m not functioning “well enough.” So I went to the doctor yesterday, and will be starting ADDerall tomorrow morning. We decided that it works so well for Abby, and she is so like me, that it will probably work well for me. I’m hopeful, and I’ll let you know how it all goes.

Argh…Parents just don’t understand!!!

M is HOME!!! I LOVE, LOVE, LOVE that my parents are willing to take her for the week, but I am sure glad to get her back when vacation is done.

According to M, Grammy and Grampy were compliant with meds…THAT’S good. She was told to Acapella at least every evening, especially on ski days. She told me that Grampy never gave her the Acapella. However, she IS six now, and should be asking for it, if I’ve told her she needs to.

According to THEM, she didn’t cough at all (I’m not sure I believe it) M said she was a little tight, but didn’t cough. She didn’t tell them because she was afraid they wouldn’t let her play.

The place they go has a great recreation room in the basement. Lots of open space, and it’s really good for running around. I did it when I was a kid, and I’m glad that my girls have been able to play there too. I WISH we had such a great place for her to run around and play.

I get so so so tired of my parents telling me how “great” she does when she is with them. It makes me feel like they think I’m making it all up. I have CT scans of the air pocketing in her lungs. I have X-Rays that show her occluded with mucus from top to bottom of her lungs. It was warm out, so no, her lungs weren’t going to rebel as hard as they might have if it had been freezing cold out. It was rainy and wet…not icy cold. It’s just so flipping frustrating.

My parents also need to learn that M, especially, will rat them out if they don’t tell the complete and honest truth. I KNOW that they did this not to worry me, but they told me that Mariella only “threw up the once” It’s not surprising, really…I’ve been waiting for a good blow for about 3 weeks. She has gone her longest ever without throwing up. M, however, told me she threw up “a couple times.” The jury is still out as to whether or not she TOLD anyone she threw up, or if she just took care of it herself. Two would be fairly normal, more than that, no. It will be curious to see if she flares now. It’s about 50/50, whether or not she flares after an episode.

I can’t believe my father forgot to bring his camera. No skiing pictures this year.

(and, about 25 minutes after I posted this, she started coughing. Somehow, I don’t believe she didn’t cough the whole time she was there. It’s a nice deep cough, not quite barky…so I’ll see where it goes.)

So….on a completely different vein….

How ’bout dem SAINTS!!!!!

We had a fabulous day with good friends, watched a great game…enjoyed the food and fun. It was a party weekend, M’s sixth birthday party on Saturday…Super Bowl on Sunday.

M seems to be doing pretty well on the new med. She’s coughing…but last night, she woke up and asked for a treatment, but then fell asleep before I even got out of bed…and no more coughing the rest of the night.

Of course, I feel like I’m starting a good flare. I’m working on prevention, hoping that I can avoid it entirely…but, it’s that time of year.

We’ve got allergy testing scheduled for both the girls. They have been asking for a pet, but we’ve suspected allergies…so before we decide whether to get a cat or not, I have to make sure that neither of the girls will suffer for having one. A…who is nothing if not practical said, “am I going to get all those pricks? Good…I wanted to get that…maybe THEN, we can make my bunny nose and drips stop. It’s really about time you did it, Momma.” Of course, she could have been nicer about it, but that just wouldn’t be A.

Even when I CAN, I don’t!

Sleep through the night, that is.

My parents took the girls for the weekend. A will be skiing today…I’m pretty sure M will be hanging out with Grammy…she was still looking pretty pathetic last night.

We asked M several times…Grammy, Grampy and I, whether she wanted to go, or stay home. She was adamant that she wanted to go to visit, but “maybe probably not go skiing” So, I packed them all up, got all their meds into their containers. Wrote them all out. (A mentioned that “wow, there sure are a lot of medicines written here, most of them are Sissa’s) I put them in their seats in Grampy’s car, and kissed them good bye.

About 3 hours later, my phone rang…I had forgotten to write down the antibiotic. Thankfully, dad thought to call, rather than decide just to give it to her. I guess when you are writing down 8 medications at 3 different times a day, it’s just human to forget the newest and most temporary one.

I climbed into bed last night, almost giddy at the thought of sleeping through the night. I fell asleep, and wouldn’t you know…my brain wanted me to wake up…and wake up I did. I actually got up to check on M. even though I KNEW she wasn’t sleeping in her own bed last night. Hopefully, tonight, my brain will remember that I don’t need to wake up.

The alphabet soup of my life

When I was in school for Occupational Therapy, we all joked that we talked in letters. Everything had an abbreviation, and we rarely used the actual words when we talked to each other.

As I was laying in bed last night, it hit me that I talk in letters again, even though I’m nowhere near the world of OT. Things like “q4 nebs” and PRN and TID fall from my lips as easily as singing my ABC’s. I often forget that not everyone understand what the heck I’m talking about. I was talking to a friend, and said “We’re doing q4 nebs, round the clock, so I’m up twice a night…I’m exhausted.” She looked at me as though I was speaking Swahili, and really, to her…I was.

I was filling in my “purse card” (the listing of all the medications the girls take, along with dosages) because we’ve had another med change…so I needed the card to reflect that. How sad is it, that between the two girls, I literally can’t remember the names or dosages of all the medication they take. A “only” takes 4 medications daily…M, at times, is taking 7 different medications. She’s been asking lately why she has to take so much medication, and how come it doesn’t really make her feel better. I hate that I don’t have the answers.