More Med Tweaking and A Belly Cozy from a Blogger Friend
Nothing much has changed. Our days begin to get really good about two in the afternoon. Until then Maizie continues to spend a great deal of time hiding under a blanket. Seeking shelter from the sun is her main objective.
Today we went to the neurologist to further work on tweaking her cyclical vomiting syndrome medications. Over the weekend we noticed major changes in Maizie's ability to control herself. She was easily angered and cried uncontrollably for no apparent reason. The hitting returned. Maizie has not hit for years so that was a shock. We had begun reducing the Lamictal so it was quickly apparent we need to go back up on it. The medication was used for what we thought was the seizures for the last few years. Since we began Lamictal Maizie's ability to focus and relate improved dramatically. We were not certain if it was from the Lamictal or from catching up some developmentally. I am sure it is a bit of both. However, considering the rapid decrease in her ability to communicate and increased depression over the weekend we knew something was not right. The Lamictal seems to be very helpful for Maizie to feel happy and able to communicate.
We raised her Lamictal back up and within a day she was feeling much better. The Topomax may be doing something since she has not vomited for quite a few days. She still does not feel well in the morning though and the triggers Maizie has discovered bother her as much as ever. The neurologist raised her Topomax slightly at our visit today thinking that will help her feel better in the mornings since she is at a very low dose. I certainly have my doubts about this but we have to try it. Once the Topomax does not work that will be two CVS/migraine medication trials and there are very few left. The doctor reminded us that because of Maizie's chromosome disorder the CVS will look differently. Please read this post titled A Diagnosis that explains more about Maizie's Chromosome Disorder.
Maizie's anxiety continues to be intense. She is working extra hard to control her environment which I certainly understand since she has been sick for so long. I must say that her need to control everything has become exhausting.
The nights are still her best time. Tonight Joe and Maizie went to see Horton Hears A Who. Maizie has been wanting to see this movie since she heard of it's release date. Maizie has very little concept of time but she loves talking about the release dates of movies. It is very cute.
Tomorrow I am watching her little friend Maralyn all day. That should make for an interesting time. Maralyn seems to be understanding of Maizie's need for alone time and is willing to entertain herself if need be. Mindy is dropping her off earlier than I ever consider waking up. Lord help me! I best get to bed early tonight.
Tonight I got a special message from Jacqui. Jacqui is a beautiful little girl who wants to help her mom make a hot water bottle cozy for Maizie. Both Maizie and Jacqui have cyclical vomiting syndrome. During the bouts they both suffer excruciating belly pain and holding a hot water bottle against the belly helps a bit.
Jacqui is so sweet to think of Maizie! If you have not visited In the Life of a Child please stop by and wish Jacqui well. She is in the middle of a CVS bout right now. We love you Jacqui! This is one of the many reasons I love blogging. If it were not for modern technology I know we would feel so totally alone in our struggle to help Maizie with her CVS. Jacqui's mother Michelle has offered me many tips and comforting words since learning of Maizie's diagnosis. I am truly thankful for her sharing their story.
18 comments:
I'm very happy that you have visited my blog and now, I have had a chance to visit yours and learn more about you and your dear Maizie. You are a rock of a woman...and have much on your plate. Maizie is a beautiful little girl and she is blessed to have such a wonderful momma! I hope the new mix of meds works a bit. Hugs from us...
You have such strength Marla. You probably don't see it and you probably don't feel it but you are amazing. Maizie is so incredibly blessed to have you as a mommy and vice versa.
Hi Marla, sorry to hear Maizie's not having such a good time right now. I was thinking back as I read this post and I remember vomiting alot when I first started topiramate, but then it did seem to settle down and start to work really well. Now I'm back off it I'm feeling or being sick more often. It definitely took several months for the side effects to settle and the med to work though. Good luck and I hope it starts to work soon, BG x
We recently saw Horton too. We really liked it. N1S also likes to tell people release dates of movies, games and whatever else he sees on TV.
Good luck with the meds.
I find myself, as well, although, again, my symptoms are not as bad, a bit obsessive about my triggers. I can only imagine what it must be like for her.
They had to raise the Topomax quite high before I saw any gains, but, of course, she would have serious side effects as well. Most of the side effects settled and they did raise it in stages.
Good luck.
I love Jacqui! I love that she is reaching out to help Maizie.
Hope M had a great time at Horton...we're going on Saturday.
Hope she's better soon.
xo
I'm so sorry Maizie's still having such rough mornings. Hopefully the slight increase in the meds will help her. The belly cozy sounds like a great idea! Hope you guys have a good weekend.
Charlie saw Horton with my mom and dad and liked it-----the hot water idea for a painful belly sounds like an excellent idea. I wonder if it might help Charlie with his occasional bouts of stomach distress. Thank you for introducing us all too Jackie, too!
Maizie is a night owl. We could have done with her being on the farm with us. I am sure she would love the lambs.
Take care, Crystal xx
how did Mazie like Horton? it's on our to see list as well.
i'll be thinking of you tomorrow. hope your time with Maralyn is fun for all.
Marla: you aren't alone. Jerry
hope Mazie enjoyed Horton.
thinking of you all x
What a post, I hadn't read about Mazie's diagnosis before. I am glad to ehar seh is vomiting less. I can;t go read Jackie's blog, osrry but with my vomit phobia it is all I can do to come and read yours, I couldn't do a second one. I bet it is nice for you to know you are not alone though! I sure hope that hot water bottle makes Mazie feel loads better. N3S is desperate to see Horton!
Hi Marla,
Just catching up on all your news.
I really hope the meds sort out soon... I know there is so much riding on what happens with them, in terms of quality of life - our prayers are with you all on this.
And what a lovely gift from Jacqui - just beautiful!
xx
PS - We saw Horton yesterday and loved it! (Jack kept up with the plot really well so that's always good!)
marla, just dropped by and did a little reading to catch up. You nailed it when you recognised the value of blogging for carers. It must be important for you to know that others have exactly the same problems, and to know how they go about tackling them. luv, ><
Maizie loved Horton Hears a Who and even did a little blog post about it. Too cute!
I read your diagnosis post from March and found it enlightening. You are fortunate to have Maize in your lives and she is lucky to have you.
As you know, my son was found to be a "chromosomally normal" male. I admit that I wish they found something. I still believe he may have a syndrome of some type and that it's rare and/or undiscovered. Maybe we should have gone to the Cleveland Clinic too. In the meantime, at least we have guidance as to what to do with some of the more concrete health issues he has.
I hope Maize's CVS bouts become father and fewer between or even better--disappear completely.
Take care, jml.
Genetic testing was helpful. We now know to look for more health problems than we would have otherwise. It explains why she never fit a diagnosis easily.
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