Holiday Update

Hi everyone! Marleigh has been a regular at our pediatrician. They are fabulous and soo sweet to her. I have a lot of good news to report and a few minor setbacks.

First the happy update:
Marleigh has had no seizures since October 3rd when she started the ACTH treatment. Yay!! She has been getting an injection every day until this week - she now only gets poked every other day. We finish up the last shot on January 16th.

Our neruologist had us discontinue the B6 - she really hated it, it is nasty (I felt obligated to try it since it was just a vitamin.) It is supposed to be swallowed whole but Mar had to take it crushed and dissolved in milk. Yuck. It was a real pain forcing her to suffer through it every night so we are happy that we can skip it! And while I know B6 is just plain good for brain power, I don't think it had any effect on the seizures.

Marleigh has had the WORST diaper rash I, or our Dr has ever seen. It would not clear up and continued to get worse until she had 3rd degree acid burns (yes, her poo was literally burning her bottom) over 50% of the area covered by the diaper was open bleeding sores. Yes, OUCH! We have been battling it for over 6 weeks. I have felt a little like MacGuyver with all the different ways we have tried to keep the poo off her skin and the medicine on it without putting tape over open wounds. It would be comical if she wasn't feeling so much pain from it. But now thankfully it is healing - and I'm sure it is no coincidence that she is smiling a lot more!

Now for the not so happy news:
The ACTH in a small number of patients can cause blood pressure high enough to require additional medication to treat it. Our Nerologist said he has never had a patient on BP meds, so of course Marleigh has to be the first. Unfortunately, the first medicine (Enalapril) did virtually nothing to lower it, despite daily (yes daily) visits to our pediatrician and regular increases it remains high.

Last week we had to go see a cardiologist and have an ECHO and EKG which confirmed that her heart wall is thickening because it is working so hard to pump her blood. Not good. So now we have started another BP medicine called Lasixs (Furosemide) a diuretic. It is helping to bring her BP down but we had to have blood drawn yesterday to see if it was lowering her electrolytes too much - and of course it is. So now we are in a bit of a conundrum. On Monday she'll have her BP checked again and if it is staying in a reasonable range we'll draw blood again to see if she is still in trouble with the electrolytes - then we'll have to decide what to do. But if her BP is high, we'll just take her off her current medications and try something else.

Thankfully, the woman at the lab did an amazing job drawing Marleigh's blood. She got it on the first try and somehow even got her to stop crying. I used a numbing cream but it seems like it still hurt to get poked. Or maybe she just didn't like me holding her so tight - you have to keep her still so she doesn't pull out the needle.

Anyway, we are happy for all the good things that are happening and hopeful that we can come up with a good solution for the other bits.

I'll check back in soon, when I have new info. We are really looking forward to the end of the ACTH!

Hugs,
Erin