epilepsy
Should we go to the ER?
I’m not sad. I’m angry with Rett Syndrome. We are in a very strange and confusing place as parents – not just parents of a beautiful child with special needs; not just parents of a brave girl with Rett Syndrome; but parents of a little girl who struggles through more than any little girl should have to.
Rett Syndrome has clearly progressed for Magnolia. The battle has been nonstop and the stakes seem to keep getting higher. When I look at other families with individuals with Rett Syndrome, I wonder if their lives are the same. Are the stakes getting higher for them or has Rett Syndrome plateaued? It’s hard to know looking at social media. It seems to be individuals with Rett are either in the hospital and very sick or seemingly fine living their daily lives. I know we mostly post our adventures and positive moments. Right now, we squeeze in those moments between all of the other chaos that is happening with her.
For us, we seem to be in a strange place. Magnolia isn’t in the hospital, but life for her isn’t fine. She has been having a plethora of GI issues, her caloric intake is minimal and she most likely is getting a feeding tube in her belly (called a G tube). On top of it all, her seizures that went away for a couple of months are back. She is dealing with it all. She has been more emotional, frustrated and angry throughout a lot of the day; and it’s completely warranted. Life for her right now isn’t great. For the last month, on a weekly basis, we have had to evaluate whether or not we should take her into the Emergency Room. We have had multiple conversations on what her threshold is. We have talked to all of her doctors to figure out what the criteria is for each issue that is happening. Because they are all big issues. Seizures, how many until ER? Or how many days can she go without eating? What if she is still having a couple of Pediasures each day? How long without drinking anything? What if she is just screaming in pain? So many conversations for so many issues. It may seem like a no brainer to take her into the hospital should any of these issues arise in your typical child. But this is a daily occurrence. It hasn’treally felt like an emergency. So we make doctor’s appointments, suffer through the weeks leading up to those appointments. We live in the unknown until we see a doctor, and even then its a guessing game with the doctor of what to do.
I’m angry that we spend our lives maintaining and managing her care and pain because life is that difficult for her. I’m angry that I have a bag packed with clothes and supplies for her and I, just in case. I’m angry that I haven’t been able to look into camps for her because everyday has been difficult. I’m angry that with every hill we climb, there’s another hill on the other side. It’s not fair for her. At some point, there has to be a break for her. OK. I’m a little bit sad about it too.
Trying to live our best lives in the hardest of moments.
My heart broke, but not for Magnolia
Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark go away.” It wasn’t cruel, it was honest. She has been fundraising and hoping for a long time. She believes the time for her daughter could be gone. She actually told me that, but she hasn’t stopped fundraising. In that moment I was so sad, then mad. Sad that she had been through so much and was still fundraising. Sad that most parents with younger girls probably don’t stop and think about the parents of older girls. The parents that have gotten us to this point. Mad because honestly sometimes life just isn’t fair. And in this instance it truly wasn’t.
Her words were powerful, they weren’t meant to stir such emotions from me. She was genuinely hopeful for my daughter, but not as much for hers anymore. (Don’t judge her for her feelings, they are hers to have, and I understand) To tell you the truth, in that moment I felt a mother’s love transcend that of her child and onto mine. All of the hopes and dreams she had for hers, she was hoping for mine. I teared up, I started crying. I tried to hold my composure, but it was impossible. We chatted about her daughter and what she had been through. We chatted about Mags and what she had overcome the past couple of years. We chatted about a lot. In the end, I thanked her for never giving up. I cried in the car as I drove away. I told myself, for her daughter, I won’t give up either. Rett really does suck, but there are some amazing people that I meet.
Her story isn’t the only one. If you do anything today, stop and think about those parents that never gave up, continued to push through and fundraise, push the boundaries. They are Magnolia’s heroes, they are her angels, they are her hope.
Better belly happy mommy
If your doctor ever prescribes you Flagyl, know that you are about to imbibe a nasty liquid. Everyday for the past two weeks we had to basically hold a pep rally in order for her to take her belly medication. “Yay Maggie, Go Maggie, You can do it! Give me an M!” There were plenty of incentives, candy, gingerlale and wine (kidding I offered her a pina colada, I know how to parent) for her to take this medicine. Everyday twice a day it was a struggle. We got to the point that she would just cry and clench her teeth and push our hands away. But we got through it and guess what. Her belly is a bit better. After 9 months of having a bad belly! I’ll take this as a win! Give me a W! Give me an I! Give me an N! Go team Magnolia!
We still need to get bloodwork done but both her GI specialist and Epilepsy Neurologist specialist are happy with the results. So her neurologist also lessened her seizure medication again. Cross your fingers! We need to get rid of this brain fog symptom.
Never a dull day around here, now we focus on getting her to use her computer again. She is trying, but yesterday she was having a hard time navigating. I asked her if she remembered where the word she was looking for was. She didn’t remember. Is this a symptom of her seizure medication or does she not remember because she wasn’t using her computer, so she forgot. I’m not sure, but we will be modeling and putting a huge focus of our summer break on Mags communication. Let’s hope she gains it back, life is just better when she can communicate. Communication gives her confidence. Confidence can go a long way. Confidence makes for a happy kid, which makes for a happy mommy.
And fun instagram filters make for a happy kid.
One little pill
What a difference one little pill has made in our lives. Two weeks ago I lowered Magnolia’s seizure meds. She was taking 3 pills in the AM and 3 pills in the evening of Topirimate aka Topimax. She now takes 2 pills in the morning and 3 pills in the evening. That’s it, one pill. We have seen an increase in her energy, alertness, instincts and just overall better. She still isn’t using her Tobii as much as she was before the seizure meds but I’m hoping that she is just being stubborn. School year is coming to an end and we are really going to focus on reading and writing this summer and making her build her sentences with her Tobii. I’m hoping with extra attention, her willingness and ability to use her computer increases.
Maggie did have one 10 second seizure at horse therapy yesterday, but that’s it. In two weeks, one 10 second seizure. It has definitely been worthwhile to lower her meds. I wish I had done it sooner, but coulda, shoulda, woulda. And I didn’t know.
The other interesting factor in this seizure roller coaster ride, is the gut brain correlation. While talking to Magnolia’s epilepsy Neurologist, she mentioned epileptic patients have more seizures when they are constipated. A patient that is having GI issues (gastrointestinal) could see an increase in seizures, they are correlated. Well, well, well….Maggie has had a rough GI year as well, especially the past 6 months. We have talked to a Rett specialist, nutritionist and Maggie’s pediatrician. Her pediatrician had tests run. Nothing has showed up irregular. Not an infection, a virus, vitamin deficiencies, everything is normal. Well, its not normal.
On Monday we are going to a new GI specialist, she also specializes in kids with developmental issues. So hopefully, she is our missing key. Also, she hasn’t gained weight in two years. She just can’t seem to break 40 lbs. I’d say lucky her, but she needs to gain weight. I can’t seem to lose 5 lbs and she just can’t seem to gain it. I guess we both have issues, but hers actually matter.
We will take all of the prayers, good vibes, healing vibes, good juju, crossed fingers and good thoughts, our way. Its been a year of us battling her GI issues. If we can mend her GI problems, so many other problems will subside.
Seizures, part 2….
Today we are 10 days free of seizures (that we know of). After the last hospital visit and 48 hour video EEG, the doctor said they were happy with her meds. AJ and I were both happy, confused, and nervous. She didn’t have any seizures while we did the EEG, but we had still seen quite a few since she had started the meds. What the doctors were able to conclude is, her breathing issues don’t seem to be related to seizures (that we can tell). Which is interesting, because it really seemed to correlate. Her breathing issues have gotten worse and her seizures have gotten worse all in the span of a couple of months. It is very confusing to meet with epilepsy specialists and they seemingly are more concerned about her breathing than her seizures.
Right now, Maggie’s breathing issues happen continually all day long. She is either hyperventilating or breath holding until her lips turn blue and she collapses, momentarily passing out. When we had her first EEG at CHLA a month ago, it was registering as seizures, every 3-4 minutes. I took a picture when I saw the report on the computer, then panicked and asked a doctor if Maggie was actually having seizures every 3-4 minutes. It wasn’t seizures though, it was her breathing. She did have several seizures during the 24 hour EEG, but not as many as it seemed to me from what I was seeing on the screen. What happened is, the computer program was registering heightened abnormal activity as possible seizures. When the neurologist explained, I was obviously relieved. So when we returned for the 48 hour video EEG, the team decided to monitor her breathing as well. They informed me they had never done this before. Usually it’s separate, but they really wanted to see if they could figure out if there was a trigger, anything really. I didn’t think anything of it, just happy that they were really trying to help her, and doing something they don’t normally do.
I think I asked several people, EEG techs, nurses, a couple of doctors, if we really were the first family. Everyone said, they had never monitored both at the same time. They were all very interested to see the results.
Maggie was less than thrilled to have her head wrapped and also have tubes in her nose. There were some tough moments, when she would yank and pull and try to get everything off of her head. We learned, icepacks, to soothe the head wrap itching, a freezing cold room would keep her head from getting too warm, fun movies, singing songs and an occasional wrestling pin move to hold her down. This time around, it really helped that both AJ and Shelly were able to rotate in and be with Maggie a bit. And since we knew we were headed into the hospital, my mom was able to fly out and be with Grayden the entire time.
So that is where we are. 10 days seizure free. Still having breathing issues, but we have some leads/ideas of what to do next. We are exhausted but we are finally coming out of this 2 months of absolute craziness. Right now, we are taking everything day by day, moment by moment. That is all we can do. BTW – love you guys and all your support.
You can see all of the wires that were attached to her for tests. I can understand why she was frustrated, but at the same time when AJ and/or Shelly was around, she is all smiles. Mommy is definitely the boring one. And I think Grammy and Gray had a good time together too.
