Eenie, meenie, miney, moe, to which doctor do we go? (Part 1)

That title is appropriate for two different posts, thus the “Part 1” in the heading of this one. In this post I ask, “To which doctor do we go?” as in which doctor are we going to see *today*. We have had a butt load of medical appointments lately. (My spellcheck doesn’t seem to like the term “butt load”, but I assure you that is the appropriate description). This week we have seven appointments between Colin and me, but that’s nothing. The record was ten appointments in one week between Colin, Noah, and me. We have several BIG doctors’ appointments in the next two weeks. That’s what I’m going to talk about in this post.

Hopefully soon I will also write the follow-up to this post. In that one I will ask, “To which doctor do we go?” as in which pediatrician are we going to take our children to now. We’re a wee bit angry with our current one, and do not plan on going back.

So, why have we been seeing so many doctors? Well, first there’s Noah. Poor little Noah. It’s been almost three weeks since he’s been in the hospital, but he still just does not feel well. He’s tired and he’s grumpy. Very.grumpy. And he’s having tantrums that are not like him. I mean, it’s not as though his behavior used to be perfect or anything, but last night Christian sent him to bed early and he sat in his room screaming and crying so hard we thought he was going to throw up, all because he didn’t want to brush his teeth by himself. He wanted Christian to do it.

It’s becoming very hard to deal with. We just don’t know what to do. Do we cut him some slack because he obviously doesn’t feel well, or do we give him time-outs and/ or other normal punishments so that we don’t get set in this behavior pattern? We don’t meet with the infectious disease doctor until next week, but I called today to ask if the fatigue and outbursts were normal. The doctor said that is not part of Kawasaki Disease, but all of the online parent forums say it is. Ugh. What to do, what to do?

Noah has another heart echo right before his follow-up with the infectious disease doctor next Thursday. If the echo comes back normal, the chances that he will have future heart issues due to the Kawasaki go way down. About 25% of kids who have Kawasaki have some heart involvement. When they receive the gamma globulin IV in the first ten days, that percentage falls to 5%. Since Noah had the treatment, but had it two weeks late, we don’t know what his odds are right now. We’re sure he will have to have future heart echos, but the one next week is a big one. Please, please, please let it be normal. If it is not, I think a padded room is in my future.

Then there’s Colin. In May, he was diagnosed with FAS by a developmental pediatrician, with a secondary pervasive developmental delay (PDD) diagnosis. We wanted a second opinion, so we saw a geneticist in July. The geneticist diagnosed Colin with alcohol-related neurodevelopmental disorder (ARND), which would not be as serious as FAS. (I think it is still considered a fetal alcohol effects (FAE) diagnosis, but don’t quote me on that one.)

They also did lots of blood work, including a full chromosome scan. Two weeks later they called to tell us there was a single gene deletion on chromosome 5. However, they would not tell us what that meant over the phone. We have to meet with a genetic counselor, and they could not get us in until tomorrow . Yes, tomorrow, as in FIVE WHOLE WEEKS after they called us to tell us about the chromosome deletion. No big deal. It’s *totally* reasonable to tell parents that their child has a problem with his genetic material and then make them wait five weeks to find out what that means, right?

Of course we have Googled “deletion on chromosome 5” and there are about 40 possibilities. There are a few we see that could fit, but nothing that really jumps out at us. Maybe the silver lining of Noah being sick was that we didn’t have time to worry about this gene thing, because now that the appointment is only 24-hours away and it’s the only thing on my mind, I am FREAKING OUT. At least we’ll be busy tomorrow morning, so it should go quickly. We see Colin’s nutritionist at 8:30am, then his occupational therapist and developmental therapist are doing a co-treat at 10:45am, drop Noah and Zoe off at my mom’s at 12:15pm, and then we got to the geneticist at 1pm.

Speaking of occupational therapy (OT) and developmental therapy (DT), we’ve been working with the therapists for a few months now, and they do not see that they are making progress with Colin. They suggested we look into an Applied Behavior Analysis (ABA) school for Colin. The developmental pediatrician suggested this to us back in May, but ABA is really intense and we weren’t sure that we were ready for that. We had hoped the weekly OT and DT would be enough. ABA schools are generally for autistic kids, but ABA can be used for many things, including the issues Colin is having (aggression, short attention span, easily frustrated, lack of focus, etc), and his PDD diagnosis means that the school would be covered by our insurance. Now I am interviewing schools, setting up evaluations, etc. (you know, in my “spare” time).

The OT said that maybe things would be different if I was a stay-at-home-mom. (She said it very nicely, but it was still the kind of stab-in-the-heart statement that gets my Mommy guilt going into over-drive.) Since I’m not a stay-at-home-mom, and since that’s not financially feasible (nor do I know that’s something I want to do), the kids don’t have much consistency. I mean, it’s consistent week-to-week, but not day-to-day. On Mondays they are with my mom, on Tuesdays they are with Christian’s mom, on Wednesdays I am home with them, on Thursdays they are with my mom, and I am home with them again on Fridays. They are also supposed to start pre-school part-time after Labor Day, so essentially they have four different sets of rules to follow. It’s fine for Noah and Zoe, but it is difficult for Colin.

We have mixed emotions about sending him to an ABA school. First, he’s only two, so we’re having difficulty thinking of our little baby being somewhere full-time that’s not with family, and in a really intense one-on-one program. We’re trying to at least work it out so that he would only go four-days-a-week, but we’re not sure if that’s possible. Second, we have qualms about him going to a “special” school for “special” kids. We just want him to be a normal kid. My hope though is that we get him the help he needs now, and that we give him the skills he will need to be on track when “real” school comes around. The doctors and therapists we’ve talked to keep telling us that we are lucky to have all of these diagnoses so early and that we are being proactive by getting help now. We’re told that we shouldn’t worry about the diagnoses, but that we should just make sure he is getting treatment for the symptoms. We’re also told that these diagnoses can be “removed” so that he won’t have to go to grade school with a label unless it is still necessary. It’s really tough to deal with though, and we are questioning ourselves all.the.time.

We also take Colin back to the developmental pediatrician that diagnosed him with FAS next week, and I’m not quite sure how to handle that appointment. We really like that doctor, and we think ultimately we would like to do our follow-ups with him rather than the geneticist, but do we tell him that we got a second opinion? Is that insulting? I mean, obviously we need to tell him whatever diagnosis comes from the chromosome scan, but do we tell him that the other doctor thinks Colin has ARND and not FAS? Then there’s the question of which diagnosis is best for Colin, FAS or ARND? I posted on an FAS parent support group, and the parents there unanimously said to stay with the FAS diagnosis. They say that the FAS gets him qualified for more services as far as insurance and programs in our school district than ARND would. On the other hand, it just doesn’t seem right to choose or advocate for a more serious diagnosis. Do we really want him to have that “label”? Ugh. This parenting thing is hard.

Finally, there’s me. I have a herniated disk. I also had a pinched nerve, but that seems to be better. So, now I just have back pain instead of back pain and excruciating pain down my left leg. I don’t think all of the stress from the past couple of months has helped with my back pain, as my muscles are just so tense all.the.time. I have been going to a chiropractor, sometimes three times a week. Sometimes I can only make it once because I just can’t work it into the schedule, and I can definitely feel a difference those weeks. The best part of going to the chiropractor is the eight-minute massage, but the therapist always tells me I’m so tense he needs me for an hour. An hour massage sounds AWESOME, but I just don’t know when I would do it. My birthday is coming up though, so maybe that should be my treat to myself. I’ll have to see if I can pencil it in somewhere, but I honestly don’t know when I would. I wish I could go get a massage sometime after the kids were in bed, but I doubt places open after 9pm offer the kind of  “massage” I need.

At least Zoe and Christian are healthy (excuse me while I go find some wood on which to knock). Zoe has been a little jealous of all of the attention her brothers have been getting though, so she keeps telling me, “Mommy, I’m really, really sick.” I tell her that if she’s sick, she should go to bed and get some rest. I don’t think that is the answer she is looking for.


8 thoughts on “Eenie, meenie, miney, moe, to which doctor do we go? (Part 1)

  1. You are dealing with so much and I don’t know how you do it. Your kiddos are SOOOOO lucky to have you advocating for them. Keep up the good work!
    I hope you get the answers you need for Colin and I hope Noah gets better soon.

  2. Holy moly… I don’t know how you do it! Then again, from your post, I sense you don’t know either. ACK! Sometimes I wonder how I do what I do and any little extra thing (like this nagging root canal problem) just throws me into a tizzy. How do I fit one more thing in? And I don’t have a kid(s) with extra needs.

    My thoughts on Colin’s needs? I’d get him the intensive help now and not worry about labels. Then, labels don’t particularly bother me. I toss them about (for myself) rather easily, using them as useful, tossing them when not. Also, I work with some adults with PDD and ASD and I think the earlier intervention the better. You are doing great, you know.

  3. I was able to talk to several people today about the schools. I just need to write the email.

    Hope all goes well tomorrow. I am thinking of you and the beer is waiting for you when you are ready!

  4. Hi there,

    1) Schedule that massage! Even if it’s six months from now you’ll have something to look forward to – even if you have to reschedule it – do it. It will help you and your entire family when you feel better physically.

    2) Guilt doesn’t help you meet your needs. You need to work right now and that’s that. No apologies needed to anyone or to yourself. You can reevaluate as needed but it’s doesn’t seem critical to quit your job at this time.

    3) Forget about labels. It’s all about the brain right now. Helping Colin develop skills that will help him for the rest of his life – the later he learns the harder it will be for him to make positive changes automatically without having to “think” about it. We’ve had to work with our son on his speech and it’s all about making his brain find the proper pathways.

    4) As an outsider the school for Colin seems like a no-brainer – again all about the brain. This will give him the structure and consistency he needs and help him develop the skills he needs to be successful.

    5) Tell your doctor about the second opinion – he should welcome a second opinion even if it doesn’t completely concur with his diagnosis. You need as much information as possible to know the best decisions to make regarding Colin’s treatment – the doctor should know that and you can remind him if he forgets this. Be honest and diplomatic – he should understand.

    Sorry I’m writing this quickly so hope doesn’t sound abrupt – my son is literally hanging from my shoulders. You are so smart and a great parent – don’t forget that. You know what’s best. Don’t doubt yourself! Take care!

    Jill C.

  5. Dang, girl. I don’t know how you’re doing all this right now. I hope find a little peace for yourself in the coming days. Just know I’m thinking of you guys and praying for the best outcomes in the your situations.

  6. I’ve started a couple of long-winded emails in reply to this post, eager to impart my vast mom-knowledge…but I realized that’s not what you need. All you need to know is that you have always done and will always do what you see as the best thing for your kids, and nobody can ask for more than that, right?

    I will say I saw red when I read the OT’s comment about being a sahm…how dare she judge? There are pros and cons to both sides of this equation which, I’m sure, you and Christian have painstakingly weighed. Again, you have always made thoughtful, informed choices for your kids, so don’t let someone else lay a guilt trip on you.

  7. Pingback: Genetic counseling and Colin’s 5q21.2q21.3 deletion (and colonoscopies and prostate exams) « My Minivan Rocks!

  8. Pingback: Eenie, meenie, miney, moe, to which doctor do we go? – Part 2 – and retractile testes « My Minivan Rocks!

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