Friday, July 31, 2009

Lola's EEG/Neurologist Apt

As I mentioned before, Lola has been having shaking episodes and after the one a few nights ago, it became important that we rule out seizures. The Allergist referred us to the Pediatric Neurologist at All Children's. We are soo lucky to live by such a great Children's Hospital. So they got us in today for an EEG and an apt with the Dr. They told me to bring her in sleep deprived so that she would fall asleep during the test. MUCH easier said than done. Lola does NOT sleep anywhere but her crib. Total opposite of her brother who slept anywhere BUT his crib. So I did my best. I took her in this morning and let me tell you, she does NOT like 25 wires attached to her head! It was pitiful and silly looking, knowing it didn't hurt her, just annoyed her. They hooked her up and I gave her a bottle and rocked her for about 45 minutes trying to get her to fall asleep. She never did. Luckily she was drowsy enough. About 30 minutes later we met with the Doctor and he gave us the results. They were fine. I took a short moment to thank God. I cant say I thought she was having seizures but I also cant say I was sure it wasn't and knowing is a great piece of mind. We talked for a while and he told me it sounds more like involuntary spasms or ticks. At this point, this issue had been bumped down to the bottom of my list. Obviously if there are any changes or progression with these episodes we will let him know. I still have a feeling this is somehow related to her GI problems.
I also have to say how much we appreciate all of the thoughts and prayers from everyone!! I have such amazing family and friends and I cant begin to tell you how much that means to me!!

The Allergist Apt/ Blog Title Change??

I really wanted to update yesterday but it was a hectic day and I just didn't have the energy. So here it is. We had Lola's Allergist apt yesterday and had a long discussion about everything that has gone on in the past few months. She wanted to do some SPT(skin prick tests) for the foods she has reacted to and for some foods she hasn't tried yet. Now in March we did some SPTs but they were all negative, which is common for FPIES kids. Remember that FPIES affects your GI only. I thought it would be possible for her to get a positive on the SPT with green beans since it gives her such terrible rashes, so I was anxious to see results. They didn't have all the foods she wanted to test for, so we are going to test the rest via blood work. She ended up having tests for Rice, Chicken, Carrots, Green Beans, Oats, and Banana. She had positives to Rice, Oats and Banana. They weren't even borderline, they were obvious positives. Banana was the worst which is interesting since banana was her worst reaction. Another big thing we talked about is the fact that she can have a food for days, even a whole week, before reacting. That's not very typical for FPIES kids. Then if she has the food again even weeks later, the reaction worsens. So here comes my curve ball. The Allergist suggests to me that this is sounding more like EE than FPIES. Whoa. Brief description-Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults. I will post a link too because its very hard to describe on my own at this point. We go to the GI on Tues to discuss and schedule an Endoscopy. This will show any damage and help us to get a possible new diagnosis. As of now, I am giving Lola a teaspoon of carrots everyday for one week, depending on how she does, increasing the amount slowly and keep good track of how much I give her and how she does with it. You would think I would be happy about giving her food again but honestly, a teaspoon of something is pretty much enough to make her mad! And who could blame her??
So at this point we are in limbo with a true diagnosis. I also discussed Lola's shaking episodes with the Allergist and she seemed to think we needed to get in for Neurology testing right away. I am about to update on that also.

Wednesday, July 29, 2009

This WAS going to be a good update

Okay the Nexium has worked soo well. Lola has done GREAT since starting it. No reflux symptoms, just a happy baby. Everything was going so well up until last night. As I was making Lola's bottle she sat on the floor watching. She then had her worst shaking episode yet. I actually had to go for her to make sure she didn't fall over and hit her head on the tile. She was perfectly fine after, happy as could be. So now I am more confused, if that was even possible. The reflux meds seem to be working great, but the shaking episodes are suppose to be caused by the reflux. Soo are the meds not working? Or is this something all together different? Is it possible that these are in fact seizures? I had not seen her shake in almost a week and then she has her worst yet.

Tomorrow morning is her big Allergist apt and I am so anxious. I have such a list of questions and things I would like to discuss. I am hoping for a plan of action. I honestly don't know what to expect at this point. That's all I have for tonight. I will update tomorrow after her apt.

Wednesday, July 22, 2009

Confusing but good but then more confusion

That about sums it up. Life has been pretty crazy so I havent updated as much as I would have liked. Oh well. Here goes. So we are still off all foods and that part has gone great. MUCH better than I had anticipated. We have had lots of family in town and stayed busy, so I really think that helped keep my mind off it. But I guess Lola doing so well has really made it easier. We stayed on the Prevacid for about a week but she started to get really fussy and spitting up more. So I didnt give her the Prevacid one day and she had a great day. Okay soo I stop giving it to her and she had a really great few days. So the reflux causes the shaking episodes and the reflux meds make her miserable. What the heck?? So no meds for a few days, she was happy as could be, with a few shaking episodes. Well then today, she was back to fussy and burping up formula, hiccups, just refluxing really bad. So I also tried small doses of Mylanta per Dr advice. It did nothing. I called the GI today and explained the past week. So he called in a new reflux med and I will pick it up tomorrow morning hoping for the best. Its like anything I guess, what works for some doesnt work for others. I believe Nexium is what we are trying, so I will follow up after giving it a try. Sooo No foods-Good, Reflux-Bad.

Friday, July 10, 2009

Day One

Today was the first day of Lola's 2 week, no foods trial. She will have nothing but her Elecare for two weeks. Honestly? The hardest part is trying to explain it to others and not being offended by the looks they give you. Like I am depriving my daughter of something? Lola, on the other hand, did great! She loves her bottles and as long as Mommy gets them for her, as she pleases, she is as happy as can be! I also think the Prevacid has helped a ton with her shakes, yay! We have lots of family in town this week and its been great to get my mind off this trial and Lola is loving all the attention!(since she never gets any!).

Monday, July 6, 2009

This Isn't What I had in Mind

For a couple weeks now, Lola has continued to have these screaming episodes, where its obvious she is in some sort of pain. Inconsolable for anywhere from 10 to 45 minutes at a stretch. We have been on the prevacid for about a week now.
Well today I figured out for sure that every time I give Lola green beans, she gets a very bad rash on her bottom. Its happened before and so today just confirms that it was the green beans. So I called the GI and explained everything. He said to stop the green beans and continue the prevacid for another week and see if there is an improvement with her irritability. If not, we will need to do a 2 week, no foods trial. Its been a tough day after that. After Lola was diagnosed and put on Elecare only, she was at her best. Her health and spirits were great. When it came time to start foods, I was a little nervous but very hopeful. However, things ha vent gone as smooth as I would have liked. After pulling green beans today, we are now left with only 3 foods at almost 1 year. Of course now those 3 foods sound so much better thinking about going no foods. I am pretty bummed about it all but I also agree that we need to get some answers. 2 weeks on her Elecare only is much better than ending up at the hospital again. And maybe, just maybe she will have a really great week and we will decide going no foods isn't even necessary. So for now, I will hope and pray for improvement and fast.

Wednesday, July 1, 2009

Today's Apt

I took Lola in for her apt at the GI Doctor today. We were there to discuss her shaking episodes. After talking about it, we are pretty sure she is having silent reflux, causing Sandifer's Syndrome.

[Sandifer's Syndrome is described as spastic torticollis and dystonic body movements found in infants and children and associated with Gastroesophageal Reflux Disease. Sandifer's syndrome is commonly mistaken for seizures but thankfully, has no neurological basis.]

I have been keeping track of when I see these episodes and they do improve when she is doing well on her foods. And they get more frequent before/during/after reacting to foods. It makes sense I guess. Of all the things, I never thought of reflux causing these episodes. Its actually a great relief for me. Soo he said we had two options, Go ahead with a 24 hour PH Test in the hospital, or give her a 2 week trial on Prevacid. I quickly chose option 2. After trialing a few different reflux meds the first go around, we found Prevacid to help her the most. Of course, like everything at the time, it wasn't simple. We had to have it compounded at the Childrens Hospital Pharmacy and insurance wouldn't cover compounded meds. I was really relieved when he told me she could be on the soluble tablets now. I also heard they work better(thanks L). And he gave me plenty of samples to last the two weeks. Woohoo for free samples!! I was more excited before I realized how hard it is to dissolve these tablets, but I will figure it out soon enough. She also loves the taste and that makes it MUCH easier.
Soo that's where we are at for now. I really hope this works out with just the meds and no invasive testing. I have to just keep a detailed calender and we go back in two weeks to discuss it. Of course now that I think back, there have been other signs that she was having silent reflux but I just missed it, I guess. Kinda feel guilty about it now. But we are back on track and I am so thankful for my healthy, thriving beautiful baby girl!