Monday, November 9, 2009

PH Probe Study




So we didn't end up going through with the endoscopy or biopsies(yay). We just went in for the PH Probe Study. Lola was admitted at Noon on Friday. They did the usual vitals and measured her to decide how far to insert the tube. Lola was her usual self and freaked out when anyone so much as looked her way. They actual kept bringing us into a "special room" so she would be more comfortable. Translation? She was freaking out and screaming so loud, they had to put her in a different room so she wouldn't scare the other kids! lol They inserted the tube and then we waited a bit. They did an X-Ray to make sure the tube was in the correct place. They said it was about 90% chance it would be. Sooo guess what? It wasn't. They had to go in and adjust it. Not a huge deal but of course she was crazy mad. I don't blame her. We got the tube tapped up good and then put braces on her arms so she wouldn't be able to get to the tube. She was so exhausted at that point she just slept. The night went well. As long as nurses, doctors or anyone in scrubs stayed at least 10 feet from her, she was fine. Since she is miss independent and wont let me feed her, I would take one brace off for her to eat and she left the tube alone. The actual tube has a recorder on it and a small machine on the end where I pressed buttons if she was sitting, standing, eating, sleeping or having reflux symptoms. Pretty cool actually. I brought her stroller and she really enjoyed going on walks and checking out the murals and fish tanks.
After a long night, we got up and went to the cafeteria for breakfast. Then we headed back up to the room and I was getting our things together, ready to leave in about an hour. She was snacking on her favorite, freeze dried apples when all the sudden, I hear her scream. I look over and she had ripped the tube right out. Oops. Luckily, we were close enough to the end of the test, so they just kept it out.
Of course she was thinking she should have done that a long time ago! She was thrilled to leave. Her big brother had a gift for her waiting at home. A new baby doll. She loved it. So now we just wait for results. Again, we really appreciate all the thoughts and prayers!

Thursday, November 5, 2009

Quick Update because I Should be Sleeping.

So we have successfully continued with corn! Yay! Good thing too because she loves it!
So tomorrow morning Lola will be having an endoscopy/biopsies. After that we will be staying at the hospital for 24 hours for a PH Probe Study. She will have a small tube through her nose, down her throat and into the esophagus. It has PH sensors and a recorder along the tube. Basically to just see if she is in fact still having reflux problems. I am dreading this and I know she will be miserable. I will update after and as always, thoughts and prayers are appreciated!

Thursday, October 22, 2009

Setback

I am pretty upset tonight. This post was suppose to be about how I made Lola corn muffins without egg or milk. It was suppose to be about how well they turned out. It was suppose to be about how much she loved her muffin. And there were suppose to be adorable pictures of her eating her muffin and covered in crumbs. But, its not going to be.
Instead it will be about how fussy she was today. And then a few hours later comes the icky diaper. And then about 30 minutes later comes the bloody and icky diaper. Poor little thing is hurting and now has a raw bottom. Holding back the tears after that diaper was not an option. Its almost like a pattern. She starts to do really well, I start to let myself think she is just going to be fine now and then something like this happens. And then I am quickly reminded of our past and how things can change with a simple bite of food.
I know I shouldn't, but its hard not to feel a little guilty when this happens. I gave her something, and then she reacted to it and is miserable. I know, I know, its a tough process. I wanted to make her happy. I wanted to expand her foods. And now this.
Okay, the pity party is over. Now we move forward. Watching her closely(like a hawk) tonight and calling the Allergist and GI in the morning.

Wednesday, October 21, 2009

Update and New SPT results!



Yes, its been too long since my last post. BUT, usually that means things are going well. Lola had an Allergist apt a few weeks ago and we decided to go ahead and do more SPT"(Skin Prick Tests). I really wanted to expand her diet and this was the best way to start. We had her tested for Beef, Turkey, Pork, Cow's Milk, Egg Yolk, Egg White, Red Apple, Corn, Soybean, and Wheat. She passed ALL of them!!! I was so happy. Of course as we have learned(the hard way) in the past, the most accurate test is eating the foods. This also was not a green light to try dairy or eggs. She is still considered at high risk for those foods, so we continue to avoid them. We did, however, get the green light to trial wheat. I was so excited and anxious because that is such a great food to have on our side.
I left the apt so excited to get started on new food trials. I went right out and bought wheat cereal. Sometimes the hardest part is not getting over excited and staying patient with the full week of trialing a new food.
So fast forward to now. She has now passed wheat and corn. She LOVES whole wheat noodles and sweet corn. She was not a fan of wheat cereal. I am pretty sure she thought it was for babies and she was a big girl who wanted big girl food!

Friday, September 25, 2009

And now this

Lola is continuing to refuse foods but now she is also refusing her reflux meds. I had to increase the dose but now she doesn't want it at all. She has always taken her meds like a champ. She liked them and would actually fuss when it was gone. This makes no sense. I did finally wrap her up, mummy style, and force some in her but it was rough. You probably heard the screams from wherever you are reading this. I left a message with the GI. Ugh.

Thursday, September 24, 2009

AHHHH Not sure what else to say

Yes, its been too long since my last update. I have been pretty busy. Lola has been pretty good. Fussy with some screaming fits but I was starting to think it was just the "normal" for her. Fast forward to this week. Sunday evening Lola refused to eat her solids for dinner. Weird but okay, she had her formula and went to bed. The next day I had planned to trial potatoes for the first time. I got them all prepped, she took a bit and started screaming, refusing any more. Okay fine, she doesn't like potatoes. Tried to then give her peas, which she has always loved. Nope wouldn't touch them and screamed until she had a bottle. Here we are Thursday night and not a bite of solid foods. I have tried everything. So yesterday I call the GI doctor and speak with the nurse. She spoke with the Dr and they told me to up her reflux meds. Umm what?? I did mention she started shaking a lot more the past few days and her reflux is flaring some from being only on formula again. But to me, that's logic. More liquids, no foods, of course reflux will get worse. But that does not answer why she just stopped eating? Her reflux was totally fine when she was eating and on her regular dose of Nexium. Now I have to give her even more? So okay, I will give it a try for a few days. But I cant stop thinking and trying to figure out why? The only thing that makes any sense at this point is that she figured out food is hurting her. I honestly am at such a loss. Rewind back a bit. We took Lola off foods for 3 weeks then she had an endoscopy to look into possible EE or something similar. It came back clear. So now she has been back on foods a while, do we scope again? I would rather have it done sooner since she has stopped eating again. If there is damage to see, I want to see it, not have it be cleared up from not eating. So that's where we are. I realize I started rambling a while ago, but that's just the way my mind is racing trying to figure this out. That's it.

Monday, August 24, 2009

Happy Birthday Lola!!


We had Lola's 1st Birthday Party this weekend. She turned 1 on Aug 12. In some ways, I cannot believe its been a year already. But in some ways, its been a long year. She has been through so much already. She is a very strong little girl and I am so proud of her! The traditional first birthday cake wasn't an option for us, but I wanted to do something special. After talking with her Allergist, I was given the okay to put a little sugar in her pears. So I made a Pear Sorbet type treat. She made a funny face at first, but I am sure because it was so cold. Next thing you know, she is shoving it into her mouth by the fistful. She loved it and it was nice to be able to give her a "treat". We celebrated her special day with family and friends and it was wonderful! She is so blessed to have these people in her life and we are so blessed to have her in ours!! Happy Birthday Lola! I love you so very much!

Sunday, August 23, 2009

Our Latest Concern

I mentioned in previous post that we got a phone call concerning Lola's white blood cell count. Her absolute neutrophil count was low. These make up for over half of your total white blood cell count. So we followed up with her regular pediatrician, since we had her one year check-up anyway. The night before we went, we got another phone call from the Allergist herself, concerned with this low count. She also told me that her and another Doctor had gone over Lola's medical records and noticed that a few months ago, her white blood cell count was low again. I was a little shocked. I can only assume that this was when Lola was pretty sick and that's why it was not something that raised a red flag. But now this has me even more stressed. We went and got more blood work done on Friday, so now we wait. If its still low, they need to find out what could be causing this. I am trying to take this one day at a time and not go overboard. I can also tell you this is NOT something you should Google. She also talked to me about possibly going back to the Neurologist since Lola's shaking has not let up and is a everyday occurrence. I don't know why, but for some reason, I think if her numbers come back low again, that somehow, someway it will end up being related to these shaking episodes. I cant find a connection, but in my mind, there must be one. Please remember I am very open to any and all ideas and suggestions. That's a big reason for me blogging. Maybe just maybe someone will read this and think of something that I have not? But for now, I am waiting on these results and praying. Lots and lots of praying.

IgE Allergies




This was our curve ball at our last Allergist apt. For some reason, I just was not expecting positive results for true food allergies. But we got them, and so now I am trying to educate myself on something I pretty much knew NOTHING about. So I have been reading my new book Food Allergies for Dummies. Its pretty good so far. And as if I didn't have enough things to tote around in a diaper bag for 2 kids, now we have to carry 2 epi-pens and benadryl. Obviously something much better to have in case. Praying we never have to use it, but having it is a nice piece of mind.

Tuesday, August 11, 2009

Friday, August 7, 2009

Trying again, not sure what happened with last post

Lola had her Endoscopy and biopsies today. But last night, we had a bit of a scare. I got a call from a Doctor(none of her own) who had read her blood lab results and was concerned with her white blood cell count. I called the GI doctor last night and he assured me it was okay and we would continue with the procedure as planned. Getting a phone call at 8:30 about your daughters white blood cell count being low is NOT something you ever want. Needless to say sleep was not an option last night and 5:15 came pretty fast. So we went to the hospital got checked in and Lola knew she was not going to have a good day the minute we walked into that building. I don't care what anyone says, she KNOWS that place. She clung tightly to me, giving VERY nasty looks to any nurse or doctor that so much as glanced her way. They did vitals and now it was time for the IV. I did tell them ahead of time that she was a tough stick to get. So sure enough the first nurse tries to no avail. She tried twice. Then the next, 3 times. Mind you, we are holding her down and she is screaming terrible, terrible screams the entire time. They tried both feet, both arms, hands. They sat and dug into her tiny body with needles finding nothing. They tried different size needles. Nothing. They finally called in the special "IV Team". They came in tried and asked if they could put the IV into her head. We refused. Okay I shouldn't say flat out refused, but we told them it needed to be a LAST resort. Finally, they got it. THANK GOD. This was over an HOUR of digging into my baby girl with needles. She looks like a pin cushion now. The black and blue is pitiful against her very fair skin. Its always difficult to watch your baby go through all that, but somehow, I manage to stay strong. I just know that if I am not strong for her, it will only make it harder on both of us. I told them I wanted to be with her until the last possible minute. Its probably because they felt bad about the IV, but they actually let me go back with her and put her under in my arms. Its actually nice to see her become so peaceful after all of that stress. I lay her on the table and kiss her little forehead then leave the room. Okay they pretty much kicked me out, but whatever. And now we wait. The wait was short. The doctor came in and told us what he found, or in our case, didn't find. She had no damage! I quickly thanked God. Of course the biopsy samples(he took 8) are what need to be examined for the diagnosis of EE(eosinophilic esophagitis). For some reason I am thinking were are not going to be getting this diagnosis. I will be praying a lot this weekend. We should get results the first of next week. We waited a while longer and they finally called us back to our little stoned baby girl! She looked so beautiful when I walked into the room and saw her so snug in her hospital bed. Again, I took a moment to thank God. She tried to sit up once she spotted Mommy and Daddy. She sat up, smiled and tipped right over to the side! It was pretty funny! Of course we had another small scare. The nurse told us they were about to give her some Apple juice. My husband and I both shouted, NO!! Yet another reminder of how scary food allergies can be. Its all over her charts and yet, they thought nothing of even asking first. Now, we aren't sure if it would even be a problem but we aren't prepared to take that chance. She enjoyed some pedialyte then threw the empty bottle onto the floor. She did well, so they let her have a bottle. I had it ready and she appreciated that with every sip! Everything went well, so we went home and she is 120%. They always tell you she may be sleepy for the rest of the day blah blah blah. Its business as usual! She was happy to be home and with her brother. A reminder to her that her brother isn't so bad after all! And now we wait. Hoping for results on Monday. I will update. Again, I cannot thank our family and friends enough for the thoughts and prayers. They are sooo very appreciated!

My Poor Little Pin Cushion







Lola had her Endoscopy and biopsies today. But last night, we had a bit of a scare. I got a call from a Doctor(none of her own) who had read her blood lab results and was concerned with her white blood cell count. I called the GI doctor last night and he assured me it was okay and we would continue with the procedure as planned. Getting a phone call at 8:30 about your daughters white blood cell count being low is NOT something you ever want. Needless to say sleep was not an option last night and 5:15 came pretty fast. So we went to the hospital got checked in and Lola knew she was not going to have a good day the minute we walked into that building. I don't care what anyone says, she KNOWS that place. She clung tightly to me, giving VERY nasty looks to any nurse or doctor that so much as glanced her way. They did vitals and now it was time for the IV. I did tell them ahead of time that she was a tough stick to get. So sure enough the first nurse tries to no avail. She tried twice. Then the next, 3 times. Mind you, we are holding her down and she is screaming terrible, terrible screams the entire time. They tried both feet, both arms, hands. They sat and dug into her tiny body with needles finding nothing. They tried different size needles. Nothing. They finally called in the special "IV Team". They came in tried and asked if they could put the IV into her head. We refused. Okay I shouldn't say flat out refused, but we told them it needed to be a LAST resort. Finally, they got it. THANK GOD. This was over an HOUR of digging into my baby girl with needles. She looks like a pin cushion now. The black and blue is pitiful against her very fair skin. Its always difficult to watch your baby go through all that, but somehow, I manage to stay strong. I just know that if I am not strong for her, it will only make it harder on both of us. I told them I wanted to be with her until the last possible minute. Its probably because they felt bad about the IV, but they actually let me go back with her and put her under in my arms. Its actually nice to see her become so peaceful after all of that stress. I lay her on the table and kiss her little forehead then leave the room. Okay they pretty much kicked me out, but whatever. And now we wait. The wait was short. The doctor came in and told us what he found, or in our case, didn't find. She had no damage! I quickly thanked God. Of course the biopsy samples(he took 8) are what need to be examined for the diagnosis of EE(eosinophilic esophagitis). For some reason I am thinking were are not going to be getting this diagnosis. I will be praying a lot this weekend. We should get results the first of next week. We waited a while longer and they finally called us back to our little stoned baby girl! She looked so beautiful when I walked into the room and saw her so snug in her hospital bed. Again, I took a moment to thank God. She tried to sit up once she spotted Mommy and Daddy. She sat up, smiled and tipped right over to the side! It was pretty funny! Of course we had another small scare. The nurse told us they were about to give her some Apple juice. My husband and I both shouted, NO!! Yet another reminder of how scary food allergies can be. Its all over her charts and yet, they thought nothing of even asking first. Now, we aren't sure if it would even be a problem but we aren't prepared to take that chance. She enjoyed some pedialyte then threw the empty bottle onto the floor. She did well, so they let her have a bottle. I had it ready and she appreciated that with every sip! Everything went well, so we went home and she is 120%. They always tell you she may be sleepy for the rest of the day blah blah blah. Its business as usual! She was happy to be home and with her brother. A reminder to her that her brother isn't so bad after all! And now we wait. Hoping for results on Monday. I will update. Again, I cannot thank our family and friends enough for the thoughts and prayers. They are sooo very appreciated!

Tuesday, August 4, 2009

So we had Lola's GI apt today and this should be the part where I talk about what happened and maybe give some answers to some questions. But, I got nothin. Okay maybe not NOTHING but not much. So 1 month ago, we had a diagnosis, a plan, something to go by. Now, we have none of that. We have gone 1 step forward and now 2 steps backwards. Its hard to explain, but whatever it is, I can and will handle it but not knowing is harder than anything. Yesterday we went and got her blood work done. 5 vials of blood and she didn't shed a tear! Amazing. We are waiting on those results. Today's apt was basically talking about where to go from here. Friday she goes in for an Endoscopy. If it looks okay, we will feed her as normal as possible (avoiding her reaction foods) and go ahead with another endoscopy in 3 weeks. Right now she is doing great. Of course I am anxious for Friday. Anytime she has to be put under is stressful. Any thoughts and prayers are appreciated! I will update Friday. Thanks!

Saturday, August 1, 2009

Lola's Day Off

Today Lola had a much needed day off. No poking, no pinching, no doctors and no nurses. Wait, I take that back, there probably was a bit of poking and pinching from her big brother. But it was a nice break from her 2 tough days. I told myself that I was going to relax today and try not to worry about things. HA!!! Well it started out nice. So about 2pm today, we were all home hanging out, my husband included, when Lola had a shaking episode. This was actually the first significant episode that my husband has witnessed. I was actually really really happy to have someone other than me see this. As crazy as it sounds, I got a sense of relief. And I think it also made it more "real" to him. Not that he didn't think it was an issue before but certainly seeing it makes it different. So then at about 7:30pm she has yet another, even longer episode. Now I am talking a few seconds here, but I assure you that seconds feel MUCH longer when you are watching your daughter shake involuntarily. This time, after the shaking, she froze up for about 2 seconds after. My husband has now seen 2 in one day. So while its nice that he has finally seen one, this also means they are happening more often. And that's definitely not a good thing. Of course these things always happen of the weekend when the Doctors aren't in. Not really, they happen all the time but I am more stressed just knowing they aren't as easy to reach. Obviously we are documenting the details of these episodes and I will be in touch with the Doctors on Monday. We have our GI apt on Tues but she also needs blood work and that will include checking to see if she has a possible electrolyte imbalance that could cause these. Soo other than that she has been in great spirits today. I also gave her the second hearty, okay not hearty 1 teaspoon of carrots today. She goes well eating them. I also feel the need to add that her smile can light up any room and I cant look at her without smiling!!

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!

Tuesday, June 30, 2009

So Far, So Good

Well cantaloupe is going great! Yay! She loves it and has been perfectly fine with it. We also got through two parties last weekend with no problems. That's always a relief! Lola seems to LOVE opening gifts. She was right up in the action while her brother was opening his. Soo I figure, as long as she has gifts to open at her party, she doesn't need a cake! Okay really, she wouldn't notice the cake thing anyway, its more about me. I will be able to enjoy watching her open gifts.
Tomorrow we go back to the GI doctor to talk about her shake episodes. This is something we have been monitoring and keeping close track of with her regular pediatrician but I now think its actually more of a GI issue. Her Pediatrician was having us keep track of them and if they didn't stop, we was going to have her tested for seizures. For some reason, I really felt like its not seizures but I also felt like it wasn't your typical baby twitches either. Of course it has been impossible to get any of these episodes on video. I am anxious to see what the GI has to say.

Thursday, June 25, 2009

Lola LOVES Cantaloupe/Crumb Anxiety

We gave her cantaloupe yesterday and I really hope it works out because she LOVES it! We have been waiting a little longer to trial a new food because of her last reaction to bananas. At least she does do really well with avocado, so that's a great food to have on her side. Nice and fatty too.
Her brother's birthday party is this weekend at our house and I have to admit, its a little stressful thinking about all those people and food. I believe I am starting to have Crumb Anxiety. Lola crawls around and loves to "treasure hunt". It will be fine, I am going to have designated food areas and everyone will be aware. It will be fun though!

Monday, June 22, 2009

Lola's Emergency Letter

This is the basic letter we carry for Lola. We keep them in her bag and anyone who may watch her carries one. I am blocking some personal info but this is the rest:



Dear Doctor (To Whom It May Concern),

The patient named above has a food allergy called FPIES, Food Protein-Induced Entercolitis Syndrome. This is a type of allergy that usually does not result in typical "allergic" symptoms such as hives or wheezing, but rather which isolated gastrointestinal symptoms.The symptoms of this type of allergic reaction include repetitive vomiting that may not start for a few hours (e.g., 2) following ingestion of the food to which the child is allergic. Even trace amounts can trigger a reaction. There is often diarrhea that starts later (after 6 hours). In some cases (~20%), the reaction includes hypotension and lethargy. The treatment is symptomatic and can include intravenous fluids (e.g., normal saline bolus, hydration) and steroids (e.g. Solumedrol 1-2 mg/kg) for significant symptoms. The latter is given because the pathophysiology is that of a T cell response.This information is being given so that this could be considered in the differential diagnosis of this patient in event of symptoms.
Of course, this illness does not preclude the possibility of other illness (e.g. infection) or even other types of allergic reactions leading to symptoms, so it is up to the evaluating physician to consider all possibilities. Similarly, the treating physician is encouraged to pursue any other treatments deems necessary (e.g. symptomatic such as epinephrine for shock, antibiotics for presumed infections, etc)

Friday, June 19, 2009

A Short Version of Our Story

I am just cutting and pasting what I wrote a while back. I still dont have the long version finished but this gives you an idea of how our journey began. I should also add that I love run on sentences, sorry in advance!

. My daughter Lola has FPIES. I am halfway through writing our full story and will share as soon as I finish. The short version is this. Lola was born Aug 12 08. Everything seemed fine at first. She was formula fed right away, and caught on like a champ. We started her on Enfamil Lipil. We left the hospital at the 24 hour mark because we were doing so well. When we got home she started spitting up a lot. Then that night the spit up turned into puke and lots of it. The next week things seemed to get worse. She was very very fussy and spent most of her time screaming. I took her to the regular Ped and we put her on Enfamil Gentlease. He told me to stick with it for a couple weeks so it had a chance to work. During these weeks we moved across the state as planned. So I found a new Ped and had an apt for her 1 month well being check. But days before her apt, she started getting a bad rash on her bottom. It wasnt your typical rash but more of just raw patches. No matter what cream or ointments I used, it wouldnt go away. Lola was getting more miserable everyday. Her bottom was just flesh and blood. I couldnt wipe her only rinse her. I took her to the Ped and he couldnt believe how bad it was. He said it was more like burns and gave us a script for a strong burn cream. He also thought she had some reflux so he started her on Zantac. Nothing helped, she got worse. She was always starving no matter how much she ate and had very foul smelling mucus diarrhea about 15 times per day. She was lathargic and what I can only describe as empty. She slept and if she was awake she screamed, a painful scream. She ate a ton and was still so tiny and pale. I knew something was very wrong. The Ped sent us to a Pediatric GI who agreed something was very wrong. We started on Nutramigan, but it didnt change a thing. She started to lose weight. She had an Upper GI and small bowel, that lasted 10 hours, they couldnt believe it. It made no sense. But her insides looked fine. She kept going downhill. We ended up in the ER at our Childrens Hospital often. She would spike a fever go completely white and just roll her eyes. They would do bloodwork and by the time the results came in, she was be better enough to go home. No answers though. One time she went to the regular Ped and she was not well and he told us to go to the ER right away but again no answers. At this point I was collecting samples from every diaper for testing. I had to line her diapers with plastic because there was nothing but liquid. At that point the GI told us CF was a possiblity and she needed a sweat test. The sweat test came back negative, only to learn that sweat tests arent always acurate and she would need full panal bloodwork and that would take a few weeks. She had an endoscopy and flexible sigmoidoscopy, and her insides looked okay. THen she had a stool elastace test and we got our first bad test result. Her enzymes were severly low. So they started testing for different diseases that could cause those results. In the meantime they did another stool elastace test and it came back normal. We were so confused. The GI promised he would do his best to figure this out and if he couldnt, he would find someone that could. She lost more weight, it was time to have her admitted to the Childrens Hospital and start serious testing. She had every test you could imagine. Ultrasounds, MRIs, lots of blood, a 48 hour fecal fat test, consults with lots of different types of doctors. They also increased her calories and fat in her formula to help her gain weight. Tests kept coming back negative and I would be relieved but at the same time, just ready for an answer. I forgot to mention that before the hospital the GI put her on Neocate and her butt healed but she was throwing up a lot and not gaining weight still. So at the hospital they started her on Elecare. After a few days, it was like someone took my baby and gave me a new one. I cannot begin to describe the change. She started thriving and became this happy smiling baby, I had never seen before. I cried the first time I changed a normal poopy diaper. She had never had normal poop. I knew my baby was sick but to see her doing so well told me how sick she really was. So thats when the GI talked about FPIES. We finally got into a Allergist that gave us the diagnosis of FPIES. Since its mostly gastrointestinal we see the GI as well as Allergist.

Tuesday, June 16, 2009

Our GI Apt today

Okay so we had Lola's GI apt today. I would say it went well. She is 18 lbs now, so that's great! The nurse said she couldn't believe how different she looked. She has really filled out and now looks just how a baby should look!
We talked about the different foods we have been trying and how unclear the results can be. I knew this process would be a challenge, but I had no idea how confusing it would prove to be. Basically, I am doing things just how I should, VERY slowly. He reminded me that the Elecare is all she really needs nutritionally and that should would be just fine with that alone. She does LOVE her Elecare! I am very thankful for that. I am not exactly thankful for 50 bucks for a 14oz can, average 2 cans a week, but I wont get into that right now. Maybe later!
So I have come to the realization that a birthday cake just isn't going to be an option for her at this point. I am trying really hard to not let that bother me(it still does). I keep reminding myself she doesn't know any better and her health isn't worth a small 1st Birthday ritual. I am going to have to get very creative with what few foods she can have. And maybe to make it easier on me, I will get her an extra little gift or something.
So nothing major, which is always good! We are just taking it day by day and I thank God everyday for that chance!

Jumping Right In

Okay, I am going to give a quick brief and then jump right in.
My daughter Lola had a very rough start after she was born, August 12, 2008. It was a rough road but she was finally diagnosed with FPIES, Food Protein-Induced Enterocolitis Syndrome. I will write about what it took to get the diagnosis when I get a chance. I am also new to this blogging thing, so forgive me! I figure its a good way to keep family/friends/Other FPIES Parents updated.
So anyway, Lola has a GI apt later today and we have a lot to discuss, so I am pretty anxious. I will try to update tonight.