Quick-ish Update

Sophia has been very, very sick the last few days. Between screaming, refluxing, not eating, having such watery diarrhea that it just runs out of her diaper and not sleeping because of all of the above we are all exhausted.

The doctor ordered some stool sample tests, which we handed in today, to test for rotovirus, giardia, another parasite, and some more things that I cannot remember.

Tuesday the GI decided to take her off all food besides her Neocate formula and rice cereal and we talked about direct admitting her to the hospital if her dehydration persisted. He explained that he thinks that this is all part of her non existent immune system. They gave me a list of things to get: sanitizing hand wipes, pacifier wipes (in case it drops on the floor), clorox/lysol wipes for the house.

I also made the appointment with the immunologist: october 10th.

Yesterday morning, Sophia was still in bad shape so the GI's office told me to come down and we will try this product by the same people who make Neocate. It's called Neocate Nutra. It is a semi solid, cereal like substance, that is completely hypoallergenic like her formula. Lemme tell ya, it is EXPENSIVE! A normal box of baby cereal costs somewhere around $2.99. The neocate nutra costs $35 a can. Luckily our GI's office is AMAZING and they gave us 4 cans!!!!!!!!!

Sophia ate the nutra twice yesterday and so far once today. She slept pretty good last night and so far today is less lethargic and fussy and is actually eating small portions of nutra and her bottle!

While the no food besides neocate & neocate nutra is by no means a solution, I am hoping that in-the-mean-time-in-between-time this is something that will help her stay as healthy as possible until we see the immunologist.

Bubble Girl

Our struggles with Sophia are getting, for lack of a better word, interesting.

It’s always nice scary when the nurse tells you that they are going to wait to discuss it any further because they don’t want to scare us with the possibilities.

Well the blood test came back last night and we received the results. The RAST test came back normal (DUH! We knew she had non-IgE mediated food allergies) and her CBC is normal. The trouble began when I flipped the page and saw that there were 3 highlighted portions letting us know she is low in her IgG, IgA and on the threshold for her IgM.

First thing this morning I called the GI’s office to see if they had gotten the results and if they needed to be forwarded to the doc at the conference. She said yes they got them and yes she was sending them to him and when he responded she would call me. She expected it to be after lunch before we heard from him.

I received a phone call 20 some minutes later. She explained that the Doc looked over the results and that Sophia is immunocompromised, meaning her immune system isn’t working properly. They explained that she is being referred to an immunologist and they will have a better idea of the why’s but for now she said that we needed to see our primary doctor to have Sophia looked over. She told us that when we get to the family doc that we needed to tell them that she can’t wait in the waiting room because she has a compromised immune system. We would also check in with them again after that appointment.

The appointment was useless but we did get medicine because Sophia has a yeast rash (again). They just told us that the immune system works like this and don’t take her to public places where she can get sick….oh and wash our hands a lot. <- I knew that! And we went home.

I am so glad that the nurses (and the GI) took the time to really explain what we should/shouldn’t be doing right now; last thing I wanna do is screw this up and end up getting her sick!

For now we have to:

Not take her to public places.

Frequent hand washing and hand sanitizer for everyone in the house.

Keep common areas of the home wiped down with Clorox wipes.

No sick visitors (or recently sick)

No church, daycare, school etc

Stay away from common allergens, smoke and keep water out of her ears.

When I asked (Yes I know I probably shouldn’t have!) more of why they thought she had such test results. She told me that it could be auto immune diseases…something about bone marrow and then said that it’s best not to scare me and just wait for the immunologist. Well consider myself scared!

I know that besides the really bad yeast rash (which came out of nowhere and went from nothing to really bad in a matter of hours) and her normal food/reflux issues she seems to be currently healthy.

Praying we can get in quick with the immunologist and get some answers!

Labs: IgG and IgA

With all the problems this past few weeks the pediatric GI ordered a full blood workup.

Yesterday night we picked them up and I turned to the RAST test results (because thats all I wanted to know) and as we though, they came back negative. As we spoke to the GI last he agreed she has non IgE mediated allergies.

Anyway I flipped through casually and noticed some things highlighted. IgA and IgG were very low. I didn't even know what that meant but knew it had something to do with the immune system.

This morning at 8:02am I called the GI's office and spoke to the nurse. She sent the results to our GI (who is out of town at a conference) and said it would prob be 4pm before we heard anything back.

At 8:46am I got a phone call back from the office. He took a look at the results and said that they are def abnormal and because of the IgG and IgA results she is considered immunocompromised and he is sending her to a pediatric immunologist as well as getting repeat labs with subclass to pinpoint the low IgG subclass.

So now we wait for a phone call sometime this afternoon to tell us exactly what we can/can't and should/shouldn't do until we wait for the appointment with the pediatric immunologist.

The nurse was trying to be helpful with information but really ended up confusing me more.

Doing my FAVORITE thing ever...waiting....

Flares, Blood Test and Upper GI

Sophia's reflux starting flaring last week. It felt as though we weren't giving her meds at all! She screamed the horrible, ear piercing scream that we haven't heard since she was put in the hospital at 3 months old.

Several phone calls to the on call doctor this past weekend and we added yet another medication, Reglan, to the mix. I had mixed feelings about it, but as the doctor said it would help with motility and "in theory" push food along instead of allowing it back up, I was willing to try anything. But then in the back of my mind, my "mommy voice" kept telling me not to give her that medication.

Good thing too. She was prescribed the incorrect dosage, which COULD have caused involuntary, seizure like movements.

Concurrent with adding the reglan (which she never took) he upped her prevacid (again!) to her current weight and that seemed to do the trick!

We also decided to cancel her PH probe. We couldn't justify taking her off all her meds for 2 full days prior to the probe, having the probe put in at POPS (pediatric outpatient surgery), making her wear arm no no's and have the probe in for another 24 hours. Especially when the end result would not help her treatment plan in any way.

We have talked with the doctor (through the nurse, because he is away at conference) and he decided that she needs to have a full blood panel done again, which she is currently having done right now thanks to daddy (yep, I didn't wanna see my baby being poked again!) ...Doc ordered a regular blood panel, an immune system response (something or another) panel and a RAST blood test <- again. Which is pointless in my opinion, because she has non-IgE mediated food allergies (which is a fancy way of saying they won't show up on the RAST testing)

So now we wait for the blood test results, and an appointment with the GI to plan our next move, which will most likely be an upper gi/ endoscopy.