Connector is shut down

Well at last update, K had just been seen by the pedi for strep yet again. We were told to start buffered C and immune glycerite. Well, in typical K fashion, she reacted to one or both of these items so we pulled them both for now and will slowly restart them.

K’s pedi also had us increase her clindamycin to 3x per day for Friday, Saturday, and Sunday. She also wanted us to decrease the Nystatin to 3x per day. This seemed to have gotten the tics under control.

On Saturday, Nonnie and Papi came up to watch K so L and I could go out for a date. We went and saw American Sniper and then went out for a nice dinner at Zac Browns restaurant. It was a great get away.

Yesterday, L and I had a Super Bowl party for 2. It was nice and relaxing and the commercials were great.

Today we had K’s hematology appointment. It was a bit of a disappointment. We saw a PA. She asked why we were there and I told her because she had 2 mthfr mutations and that her immunologist thought there might be a bone marrow issue. She says that she can help us with the mthfr issue but the bone marrow issue is out of her scope. She explains to us that the mthfr mutations are not an issue unless she has increased homocysteine levels. She said they will draw labs to check her homocysteine level and will adjust Meds if necessary when we get the results. She then said she had another hematologist look at her labs and they didn’t see anything of much concern except her IgG levels. They said those would be the immunologists responsibility at this point. So I was pretty frustrated when we left. Felt like a waste of time.

Anyway, on the way home, the downtown connector was shit down completely due to a suspicious device. We went 1/4 of a mile in 2 hours. It was insane. It took us 3 hours to get home and K cried the whole way.

At about 7:30 tonight, K’s immunologist called to follow up. He asked how the appt went and I told him. He said to follow up after her infectious disease appt next week and we will make a plan. That made me feel a little bit better.

Things have been hard lately. It seems like we go in circles and never really get anywhere. I know that we will eventually get to the bottom of this, but some days it’s hard to stay strong. But I will be strong for K. We have no choice but to continue fighting. We will continue to take it one day at a time.

Trying day

Today was a trying day for me. I knew waking up today that we would be going to see K’s pediatrician. We had scheduled the appt yesterday.

Well as soon as K woke up today, I knew something was off. K started ticking a lot. She had a tic the the very first one she had that lasted several seconds. She was having about 20 tics an hour. It broke my heart to watch knowing there was nothing I could do to help it.

When we got to the pedi, they did a throat swab for K. It came back positive for strep. Well K has been on both clindamycin and Augmentin for 8 days. The strep should be cleared by now. Not getting worse.

The pediatrician was a little at a loss as to what to do. She said that she was going to research it some more but also wanted me to reach out to K’s immunologist to see what his thoughts were. Her pedi also spoke with the naturopath that works at the office and she suggested starting immune glycerite and buffeted c powder so I picked those up today. I’m willing to try anything.

Once we got home and for K settled in, I called the immunologist and left a voice mail. He called back a little after 5pm and stated that he didn’t want to treat her strep and he wants to wait for infectious disease to see her. Her appt with infectious disease isn’t for another 11 days. Naturally I hung up the phone feeling more then defeated. I cried and called my mom.

I feel like no one is taking responsibility for K’s care and keeps passing her off to everyone else. No one other then her pedi wants to help her. I texted her pedi and expressed my frustrations. She said she was going to continue to do some more research today to try to help K.

I just heard back from her pedi. Yes, at 10:15 at night she emailed me back. She is truly amazing. Anyway, she suggested maybe giving a 3rd dose of clindamycin for the next 2-3 days to boost its effects and starting a course of omniceft or keflex. She also said there is some research to back using hypobaric oxygen therapy with PANDAS kids (which I am guessing she is now diagnosed with since she keeps stating it).

I am hoping by tomorrow morning we will have a solid game plan. I plan to call infectious disease first thing in the am to try to get her appt bumped up sooner.

Current meds:
Augmentin 5ml twice a day
Clindamycin 3.75ml twice a day
Nystatin 2ml four times a day
Zyrtec 2.5ml once a day
Nexium 10 mg twice a day
Methyl folate 1ml once a day
Vitamin D 2,400iu once a day
Theralac probiotic 1/4tsp once a day
Zinc 15mg once a day
Buffered C powder 1 scoop twice a day
Immune Glycerite 2 drops three times a day.

Something to remember

I sent this to a friend who has been having a rough few days. Her little girl is just like K. I wanted to post it so I can look back on the words I wrote when I am having a hard time.

We lay away wanting better for them and wake up praying they will have a good day but at the end of the day, they always give us those beautiful smiles and sweet kisses. They may hate the medical stuff and although they don’t understand it, they know we are not doing it to hurt them. We will continue to hold them down for procedures and blood draws. We will anxiously wait in waiting rooms time and time again. We will sit in doctors offices 2, 3, sometimes 4 days a week, we will watch our girls wake from sedation, we will try crazy rare foods, we will be our own iron chefs and play chopped with our 5 safe foods. But in the end, we are fighting for them. And we will always fight for them because those smiles, hugs, kisses, giggles and silly moments are what it’s really about

Pee problems

The last few days have been pretty good. K has been happy, sleeping well, playing, and continuing to bring smiles to our faces.

The only strange thing is that K has had less wet diapers then she typically has. Yesterday she only had 2 and today she only had two. This is strange because she is drinking the same amount, if not more. I contacted her pedi about this and she wants to check her out tomorrow.

In the feeding world, k is still LOVING her “pancakes”. She also got to try chickpea pasta tonight. We have to trial this because it has a few ingredients that k has never had before. I am anxious to see how she does. We made the pasta and put some green bean puree on it for a sauce. At first K was unsure of it. She played in it for a while but eventually ate most of what I gave her. I was so excited.

I will update after K’s appt with her pedi tomorrow. We are also anxiously awaiting her hematology appt on Monday.

Current meds:
Augmentin 5ml twice a day
Clindamycin 3.75ml twice a day
Nystatin 2ml four times a day
Zyrtec 2.5ml once a day
Nexium 10 mg twice a day
Methyl folate 1ml once a day
Vitamin D 2,400iu once a day
Theralac probiotic 1/4tsp once a day
Zinc 15mg once a day

Stumped by labs

So K’s immunologist called bright and early today. He said that he thought for sure that her pervious labs looked so strange because of lab error. He was shocked to see that her labs looked even worse this time and we’re done at a different lab. He said he still can’t believe she looks as healthy as she is. The way she looks on paper, he would expect her to have abscesses everywhere but she doesn’t. He said that he suspects there may be a bone marrow issue. He did not elaborate at all on it but made sure we had our hematology appt set up.

After that we got up and got our day going. K had some pear and chick pea pancakes for breakfast and some corn flakes. Then we just played a lot and hung out.

Later, k played in her high chair while I made some green bean and chick pea pancakes. I baked them this time and they are about the size of a quarter. K loved them. She ate 12 for dinner. It’s nice having a safe flour to play around with.

We also started concentrating k’s formula today. We will go slower this time then last time and hope that she will tolerate it. So far so good though.

On a side note, one of K’s sweet friends has been struggling the past few days. She has a lot of the same issues K has so we will just say a lot of extra prayers for S today!! Thinking of you sweet baby S!!

And I’ll end with some silly pics of K!

Current meds:
Augmentin 5ml twice a day
Clindamycin 3.75ml twice a day
Nystatin 2ml four times a day
Zyrtec 2.5ml once a day
Nexium 10 mg twice a day
Methyl folate 1ml once a day
Vitamin D 2,400iu once a day
Theralac probiotic 1/4tsp once a day
Zinc 15mg once a day

Pancakes!!

Well we had a fun weekend at Nonnie and Papi’s. K and I both got hair cuts yesterday!

K was such a good girl. We went to a place that does kids hair. The let us pick a movie for her and then she sat on a motorcycle and put a bucket of toys in front of her. She was awesome! Not a single tear!

Nonnie and I went to Buy Buy Baby yesterday and I got K a few new outfit and a new cup. She LOVES her new cup and this morning, she drank 7oz of formula out of it! That’s a first for her!

Today, K, Papi, and I went to Sprouts. I was so excited. I got a ton of nice meat for L and I. We are going to be eating good this week.

The most exciting part of the trip to Sprouts was that I found some good things for K. I found corn flakes, chick pea pasta, and chick pea flour.

When we got home from Sprouts, Papí and I make K pancakes. We combined her pear puree with the chick pea flour and thinned it out with pear juice and water.

K loved them so much. She ate 2 whole pancakes. I have never seen her eat so much of something of that texture.

K and I made it home safely and L made it home from Nashville in time to snuggle K to bed!

Tough day

Nothing really exciting happened today. L left for Nashville for work and I came to Nonnie and papi’s house for the weekend so I would have some help with K.

K did great in the car and was so happy to see Nonnie and papi. She loves them so much.

K had a very hard time settling in to bed tonight. We did her normal bedtime routine starting at 6:45 but K never fell asleep until 10:45. I have heard that Nexium can cause insomnia.

I am having a tough night. I know K needs the scope done to check for EoE to prevent further damage if she does have it but she seems to really be struggling with the Nexium. It is breaking my heart.

My heart breaks seeing where K should be in regards to food and where she is now. K is pretty much dependent on the bottle still and will eat some purees. It’s hard to watch babies that are 5 or 6 months old eat better then K. K will eat a few bites off of a spoon but mostly eats her food from a reusable pouch.

I know this is all part of the journey but some times it’s just darn right hard. It’s hard to think that your child is not “normal” or that there may be something “wrong” with your kid.

I will always love K for who she is. She is so smart. She always knows when mommy needs a smile or a kiss. Her laugh is contagious and her silly faces will make anyone laugh. She has the best vocabulary and is learning something new every day. She loves her books and her kitty and all of her stuffed friends. She is perfect in all of her own and unique ways.

But…some days are just tough. Some days are just harder then others. But we will get there one day at a time.

Meds on display

K and I just had a very low key day since both of us are feeling under the weather. We just snuggled a lot and played and hung out.

Yesterday, when I went to the pharmacy, they forgot to constitute one of K’s meds so I took it back today. The sweet tech that always checks is out very sweetly asked me what was wrong with K. She said that she has a daughter just a week older then K and this breaks her heart. I explained K’s FPIES and hypogammaglobulinemia. I guess I never realized how much medicine she actually takes until I laid it all today. So here it goes:

K is really starting to hate all of her meds and is fighting then really bad right now. She holds them in her mouth and then spits them out. It has been like wrestling an alligator lately but we will continue the fight because we know it’s what she needs.

We are headed to Nonnie and Papi’s tomorrow for the weekend since L has to travel this weekend for work. I’m sure there will be lots of “go-go” (wagon rides) and swinging and chasing kitties while we are there.

Current meds:
Augmentin 5ml twice a day
Clindamycin 3.75ml twice a day
Nystatin 2ml four times a day
Zyrtec 2.5ml once a day
Nexium 10 mg twice a day
Methyl folate 1ml once a day
Vitamin D 2,400iu once a day
Theralac probiotic 1/4tsp once a day
Zinc 15mg once a day

Well it was fun while it lasted

So first off, turns out K was not adjusting well the the increased calories in her formula so she is not failing Nexium. Yay!

Second is Emory finally called back and wants to set up an appt for next week. After consulting with K’s pediatrician we feel that K is getting great care with her current teams so we don’t want to change

K will be seen by infectious disease on Feb 9. to try to get all this strep under control.

And speaking of strep, K had a 101 fever and started ticking again. Took her to the pedi and she has strep again. And to top it of, so do I. Ugh.

Current meds:
Augmentin 5ml twice a day
Clindamycin 3.75ml twice a day
Nystatin 2ml four times a day
Zyrtec 2.5ml once a day
Nexium 10 mg twice a day
Methyl folate 1ml once a day
Vitamin D 2,400iu once a day
Theralac probiotic 1/4tsp once a day
Zinc 15mg once a day

Nexium fail?

Not much to update today because we didn’t do much. Just relaxed around the house. Only news is that K is either failing Nexium or having trouble with formula concentration. She has had terrible mucus filled diapers yesterday and today. Not good. I emailed her pedi and she said to stop the concentrating and see if that helps her go back to base line. I will also call the GI first thing tomorrow morning.

Current meds:
Augmentin 5ml twice a day
Nystatin 2ml four times a day
Zyrtec 2.5ml once a day
Nexium 10 mg twice a day
Methyl folate 1ml once a day
Vitamin D 2,400iu once a day
Theralac probiotic 1/4tsp once a day
Zinc 15mg once a day