plans

They are good to have, but sometimes hard to make.

Today at Kendall’s one year well child check up with Dr. Natalie, that was how it was. I love her. She continues to be one of the best people we could ever have hoped to have on Kendall’s team of doctors/care specialists. She looked at me and said, “clearly this isn’t going to be like most other one year check ups where we get to talk about all the fun new things they are doing and eating, so why don’t you just catch me up on where we are with miss kendall.” I was so relieved. i hate going through the questionnaires with the nurses at the beginning of the appointments.

No she can’t say two or three words.

No she isn’t standing indepently.

No she isn’t cruising.

No she isn’t really crawling yet.

No she can’t drink from a sippy cup.

how about you back up to the questions you asked me at her 6 month check up??? <Maybe I can answer some of those with YES! SHE CAN DO THAT!!!! *sigh* I know they’re just doing their job. And I know that Kendall is still making amazing progress, even if she hasnt’ met the arbitrary milestones that most doc’s offices use. And I know she will catch up in her own time. But it still gets you down, just a little bit, having to answer no to all their questions. All the time. Every visit.

So i had printed off a bunch of info from the internet to go over with Dr. Natalie, specifically with regard to some of the weird things Kendall can sometimes do that would prompt a call from me to their office for guidance and help.

We talked about the MMA and what ramifications it could have, what ER we should go to since our local one told us they can’t handle her anymore, what the plan would be for different situations related to a metabolic issue. Dr. N has had one other patient with a similar metabolism error, so I do feel confident that she gets what I am saying when I say – “she’s just starting to be off a little”.  We went over some of the test results that have been sent to her office and what they were for and whether some of them would be repeated to look for patterns, etc.

And then we came to the second part of her diagnosis, the mito component. This is still an unknown area for Kendall, as we don’t have the testing back to tell us how and to what extent her mitochondria are affected. I feel like if I keep telling myself that it’s only secondary, that i don’t have to deal with the ramifications of what could happen if it is primary, or more affected than we are thinking right now. It’s like maybe some part of me knows that mito will play a bigger role here than other parts of me are willing to accept right now. But I am all about denial so we’ll muddle through.

Unfortunately (or maybe fortunately?) I stumbled upon an awesome resource for primary care providers (typically the pediatrician) when dealing with a mitochondrial patient. It goes through an overview of how “off days” can present themselves, the fact that most parents DO recognize early signs that may not be clinically present in bloodwork or other testing, and that things can go from bad to worse in a heartbeat. It also went through system by system the things that can be affected by mito dysfunction, and how that would look during good times, and how it would look during stress/illness/off days. Reading through it was like reading through a manual on Kendall! So I printed that out, highlighted the parts that we have already dealt with or see consistently with Kendall, and brought that. I didn’t expect Dr. Natalie to be SO open and receptive to it all. I’ve brought info before to doctor’s appts and they were just not going to read it. Anything I have off the internet clearly could never hold a candle to their vast learned knowledge. Which is true, I don’t dispute that. But I need to have a link between med school and my every day life fighting as an advocate for Kendall. And the internet does that for me.

But not Dr. Natalie – no she DOVE into the papers, going through a few of the more important pieces with me (things like the fact that when I call and say Kendall has a fever, it’s not about the number, its about the fact that this is different than her usual 3-4 degree daily swing, or when I say I think she is looking dehydrated and she isn’t tolerating volume through her tube, that we need to get an ER plan put in motion, things like that). She said that she was going to personally read it, and then have each of her nurses read it and check that they read it. A notes synopsis would be entered into Kendall’s file and anytime Kendall’s chart gets pulled up, it will flag the nurse (or doctor on call) to read these notes that summarize all this info. She called the nurses into the exam room and they all were shocked that it was the same Kendall (we have interacted with most of them at one time or another!) – and Dr. natalie let me tell them all about her diagnosis and how I needed their help.

I told Pam and Faye (our two main nurses) – “thank you for talking me down before with different situations, you’ve both been so great at hearing me out. Here with this new info we have on Kendall, there will be times when I am calling and I don’t so much need actual advice, I just need a nudge in the right direction. I need to know, yes that needs further examination or no, we can probably ride this one out. I may call and just need you to call ahead to the ER because I’ve already determined that it is time for IV fluids, or I may call and want your opinion on groupings of random symptoms. It’s just hard to tell with Kendall some days, especially when she is fighting something viral that isn’t real clear in it’s symptomology.” They are such nice ladies. they reassured me I was doing a great job and that they would be there to help with anything anytime.

I mean how can you NOT love a ped’s office like this?

and then, the last part of our conversation was the hardest. We talked about immunizations and what was going on from an immunological standpoint. I told her that we were waiting on official word from the neuro once we get her EEG scheduled and get results from that as to whether or not she has “seizure-like activity” that would predispose her to further electrical activity when her body has the stress of fighting off the vaccines. On top of the fact that she continues to prove to us with her other physical reactions to vaccines (fevers, irritability that is very uncharacteristic of kendall, lethargy, not eating, diarrhea and/or just not pooping at all – all of which typically leads to a hospitalization within a few weeks. WITHOUT FAIL. No, the hospitalization events are not always directly attributable to the vaccine, but they ARE invariably tied to the stress her body starts to undergo every time we have tried to vaccinate her this year. AND FOR WHAT???? Her body isn’t even making any response to the vaccines!

when you vaccinate your child or yourself, you are injecting antibodies against certain diseases into your system. Sometimes a micro component of those antibodies are dead strains of the very thing you are hoping to protect your child against. And what happens in persons with regular immunological function, is that your body will have these antibodies enter their bloodstream and the “soldiers” of your blood and immuno system will “read” the antibodies and create little copies of it, realizing that it is a form of ammo against certain invaders.  These little copies are called “titers” (and I am skipping through years of high level medical knowledge here to try to simplify this into terms that I can grasp, so it may not be the most scientifically accurate here and should definitely not be searchable by any google bots so that no one else has to be subjected to my pseudo-medical knowledge!). Anyways – the titers are what is the hopeful end goal of any vaccination. Your body now has a mini-army to protect you against those specific invaders. And as you grow older, your titers continue to copy themselves, you stop licking the snot off your friends sippy cups (hopefully), your whole system matures a bit, gets stronger, and there you have it. Mostly healthy adults who wear themselves down and then wonder why they get sick. But that’s a whole other post.

anyways – so Kendall’s body has these little mini-invaders from the vaccines, but has no idea what to do with them. So it tries to mount a defense, but it can’t borrow too much energy from other places to do this, so her immune system just starts sending red flag memo’s all over the body – “You! Stomach – divert energy away from digesting food to come help us fight these invaders! BRAIN! – shut her down for a few hours so we can store up some energy to fight this next battle! ALL SYSTEMS MUST CONTRIBUTE WATER! Alert the fever Alert the fever!!!” But instead of reading the antibodies and turning them into covert spies and making good copies of them, her body basically throws the equivalent of nerf darts at them and lets them just meander their way through her body until they all die of lack of supply. And no copies of those invaders are ever made to help boost her own army of disease fighting cells. 

This is what I do not understand is so hard for her docs to comprehend. I am not anti-vaccine. I think they serve a GREAT purpose! I wish there was less money involved with some of the drug companies because I think we’d get more straightforward answers and products, but really, it’s not about the politics of it in this case. Vaccines work for 99% of the population and that is a great thing. YES kids like Kendall need all the protection they can get, which would mean we SHOULD continue to try to vaccinate her.

BUT THEY AREn’T GIVING HER PROTECTION!

We are shooting her up with these little toxins with the hopes that her body will kick in and do its part – but its not. So we’re just shooting her up with a very hard to process, illness-inducing placebo. It’s not that I am against the vaccines – I am against the fact that THIS plan isn’t working for Kendall, so why are we continuing to beat our heads against this wall? Either tell me she’ll be fine without vaccines, or come up with Plan B. Well, the problem is, they have a plan B, but it’s IVIG. And really, I am becoming more accepting of Plan B, because we’ve discussed that it would be only for about a year, through next cold and flu season. It would get us over that 2 year hump when most systems are mature enough to deal with the stress of vaccines without flipping out. It would cover so many more illnesses than just the vaccines, and would eliminate having to fight insurance for separate Synagis shots (against RSV).

but again, we are waiting for neurology to tell us that she may or may not have more seizures if we try to vaccinate her again before we make this decision. Her metabolic/genetic docs feel that vaccines are always the appropriate course of treatment, so they recommend that she continue with the vaccines (although realistically, I don’t think they have the whole picture of what is going on to make that decision. I think I just got the “party line” from them on their recommendations when I asked.) Immunology is willing to start the IVIG as soon as someone ELSE makes the call. And then there’s Dr. Natalie.

“That is the most ridiculous thing I’ve ever heard!!! WHY do they want to try to continue to vaccinate her even if its NOT seizures?!?!?! Clearly her body can’t handle it! START IVIG NOW!!!!” I was laughing pretty hard at her because she is just so “no non-sense” when it comes to certain things.

So we had a talk about the fact that if it were Dr. Natalie’s call, she would refer us to get a “port" (easily accessible IV that is permanently placed in Kendall’s chest) within the next week or so, so that we could just start the IVIG treatments sooner than later, as well as have that more easy, permanent access for any IV fluid boosts that Kendall might need. I was stunned to say the least. And relieved. And resistant. And a little bit…I can’t think of the right word. Ready? To do whatever we have to do to keep Kendall healthy – or at least MUCH healthier than last winter! So we talked about waiting to hear from Neuro (we have to get the stupid EEG test SCHEDULED first before they can even make a recommendation), but that Dr. Natalie would write up her recommendations and send them up to our care team in Milwaukee for further consideration on the matter.

It was a relief because while a part of me thinks that we will probably end up on this plan, it isn’t one that I would hope for for kendall. And yet, it would have probably fallen to me to be the one pushing for something to help ease the IVIG treatments since Kendall has a penchant for losing peripheral access (IV’s) at inopportune times, after going through the trauma of trying to get a line started in the first place. At LG on the peds floor (where every nurse is used to starting lines on small babies), we still have to have NICU or PICU nurses come start them (who are used to starting REALLY difficult lines in one lb babies), and even then they usually blow a few spots before getting one to stick. The problem is that by the time Kendall needs an IV started, she’s usually so dehydrated that her veins are starting to show instability. It’s a catch 22 for her. But anyways. The burden of advocating for Kendall as her only voice has again been lifted a little bit by Dr. Natalie’s plan and absolute committment to PROACTIVELY caring for Kendall.

Another plus to this plan (if indeed any of these can be counted as pluses when talking about putting a line into place in your baby), is that requiring nursing care would more than likely allow us to qualify for state services to help with easing that gap between what insurance covers and what we have to get out of pocket. It would allow us to have a nurse come to US with IV fluids if that’s what we needed (vs waiting in a germ filled ER where they may or may not be able to help us anyways!), especially as sometimes it really is just a matter of getting fluids throughout her body in a quicker manner than her crazy gut determining how much fluid to share with the rest of the body.

anyways – it’s not a perfect plan by any means. It isn’t one that will be put into place for a least a month if we do need to go to it at all. But it is at least a PLAN. It is something solid we can hold on to as hope that we can help Kendall better than just RE-acting to her crashes when they come.

Part of me does still hope we can just forget all about any of this kind of talk. Cause right now, she looks great. She has a slight yeast overgrowth around her tube stoma. Yeast can be a nasty little bug to get rid of, so we’re hoping that a nice tube of jock itch creme can help nip it in the bud. Next step if the cream doesn’t help is to give her one shot of yeast-killing antibiotic. If THAT doesn’t help, we’ll pull out a few big hitters and put her on a course of oral antibiotics. There is still some question that the yeast on the outside COULD indicate that she is dealing with a yeast overgrowth in her gut somewhere also (which would be why she is currently dealing with some nasty diarrhea and stomach cramping) – but right now, we’re all ok with hoping its just an external problem that is treatable without antibiotics. Kendall does not handle antibiotics very well (because her gut is already so sensitive to changes in its flora/bacteria), as well as we know that she rarely responds to oral antibiotics and ends up needing IV antibiotics and could start building resistance to some of the few that she responds to. So we have to weigh all of that against kendall’s health/discomfort.

But for right now, she’s good. She’s great actually. That, of course, can change with the blowing of the wind, but we’ll take it for this few minutes. BEcause at least there’s a plan, or a few of them, for what to do when that does change. And THAT makes all the difference in the world for my peace of mind, and ergo the peace of mind for the whole family!

So that’s our ped visit update.

terra

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