Update On Ella!

I think to do a full update on Ella I have to start back in August of 2022. Last August she had a seizure and we ended up being transported to Mary Bridge Children's Hospital via ambulance. From that stay the Neurologist decided to put Ella on Topiramate for her migraines. The nice thing about that medication is when taken in higher doses it can help with seizures as well. Thankfully Ella has never had another seizure. She even had a 48 hour EEG and her brain never showed any kind of seizure activity. 

Fast forward to this year and from February 6th - June 1st (almost 4 months) she had 4 puking episodes. It usually starts out as a headache and it always ends up with multiple times of her throwing up. On June 9th she had a Neurology Appt and we discussed her puking episodes and how at least once a week she was waking up with headaches. He didn't like that so he change the dosage of her meds. Her new does was 25mg in the morning and 50 mg at night. Prior to this she was only taking 25mg twice a day. 

Since June 21st until September 16th (Almost 3 months) Ella has had 10 puking episodes some times spanning two days. She has actually lost weight this summer. I believe at one point she was 112lb, but she went down to 105lb after one of her worst puking episodes. 

I have been in contact with her Neurologist and he doesn't feel like it has anything to do with the meds. They are supposed to help with her migraines. He suggested that we go see her Neurosurgeon to make sure it wasn't something that would require surgery. Her appt with her Neurosurgeon was on Monday, August 28th. The day we had the appt she was doing great and he said she looked great and didn't look like she was sick. He did look in her eyes and didn't see any swelling or pressure behind her eyes so that was good. He said the only thing we could really do was have an MRI to confirm that her ventricles were in good shape. He did ask me why I didn't take her to the ER during her latest puking episode and I told him that I was planning on it if she didn't stop puking by a certain time. Thankfully I was able to give her the anti-nausea meds that she's been prescribed and they finally worked and she stopped throwing up. We did set up an appt for an MRI on October 14th. 

The night before the first day of school, Sept 4th, Ella started throwing up again. She was still throwing up at 10am so I was done....I was taking her to the ER. 

She never did throw up again once we left the house. She felt awful though. She had a terrible headache. They gave her Tylenol and thankfully she kept it down. I hadn't even been able to get her to keep her anti-nausea meds down. They wanted to run some blood tests, but since she was dehydrated it was hard to get a vein. The first nurse was digging around her in left arm and couldn't ever get a vein. The second nurse came in and had better luck with her right arm. They also hooked up an IV and gave her a bag of fluids. This sweet girl is such a trooper. She wasn't even squeezing my hand when they were digging around in her arm. I told her later that she is going to be amazing at birthing a baby since she handles pain so well. 

They were able to get her in for an MRI at the hospital so canceled the one in October. Ella's Neurosurgeon came over and discussed the results with us. Her ventricles looked beautiful! That's super great news because it means she doesn't need brain surgery, but it still leaves us with unanswered questions. Why is she having these puking episodes? Is it because of her headaches or another issue altogether? Is she allergy to something else? Is it a gut issue? So many questions.

 She does have an appt with a GI Specialist, but they couldn't get her in until Dec 20th. I honestly feel like we need a Dr. House. I need someone to look at her overall health and figure out this mystery. Poor Ella's life has been greatly impacted by this. She was even scared to go to camp thinking she might puke. She has had to cancel sleepovers because of throwing up. She's losing weight when she should be growing! As a parent the not knowing and understanding what's going on with her body is maddening. I will do anything to figure out what's going on with my little girl. 

I did go ahead and make an appt for her with my Naturopath. She has been amazing with me and I feel like their might be a hormonal connection. I know that migraines can be higher for women during the years they have a cycle. My mom had terrible migraines until menopause and then she finally she got some relief. I do not think it has anything to do with her Hydrocephalus. I think there is something else at work here, but I feel like all the MD doctors are so focused on her Hydrocephalus they aren't able to see the forest through the trees. 

I think there might be a connection with food as well so Ella has started a food diary. We have found out there were things she was eating that had food dye that we had no clue about. I guess we had gotten a little lazy. One of the things that we found was the mystery Air Heads. She very rarely gets to eat gummy fruity candy because of dye. The mystery Air Heads are white so we thought they were okay when in fact they have red, yellow and blue dye in them...go figure. Also the seasoning packets in Top Ramen have dye as well. It's crazy what has dye in it. We also are wondering if it has something to do with her digestion. Sometimes when she throws up it will be hours after a meal and she is puking up fully intact macaroni noodles. That doesn't seem right. I'm hoping because we are keeping this food diary we'll be able to have a really good discussion with the GI doctor. 

There are still so many unknowns and like I said it's maddening. I just want my girl to be healthy and not have to go through all this. She has been through enough already! Please keep our sweet Ella Grace in your prayers. Pray for healing of her body, wisdom for me and Michael and the doctors involved.