Musings of a Marfan Mom

Baby J’s 6 Month Checkup

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Today was Baby J’s 6 month checkup, and it gave me a lot to think about. He’s measuring at a healthy 27” (75th percentile) and a smidge over 16 lbs (just under 50th percentile).

I love our pediatrician, but she got on my case about J’s eating and it was entirely illogical. She said since his weight has leveled off (he’s gained maybe 2 lbs in the past 2 months) she’s a little concerned about him getting enough milk. In the next breath, she said he really has to stop his nighttime feedings.

So wait…he’s not getting enough food, but I should quit feeding him?

She then went on to say I really need to start feeding him purees, preferably rice cereal, before bed. Let’s think about this. Rice cereal has no nutritional value. It has fewer calories than breastmilk. And at this age, solids are meant for tasting and experimenting, not for substance. If she were really concerned about J’s weight, she’d suggest I nurse him more and do fewer solids. (We haven’t actually started solids yet and probably won’t for another month, as we’re going to do Baby Led Weaning and J needs to be able to sit up first.)

I know he’s fine though, and I’m not going to change anything. My supply is great, he’s eating well, seems happy, and Marfan causes a very lean frame so a leveling off of J’s weight gain is to be expected.

Feeding issues aside, we left the office with two referrals. The first is for the sleep clinic at the hospital. Baby J has had some episodes of stopping breathing and then gasping while napping, plus he snores off and on and is a bit of a restless sleeper. Could be sleep apnea (common in Marfan), could be his reflux causing problems. We won’t know which without a sleep study. That’ll be in 2.5 weeks.

The second referral is for Early Start, for physical therapy. J still can’t push himself up with his arms or really roll over. He did do belly to back once on Tuesday, but the pediatrician said he should be consistent with rolling over now. He’s also behind with sitting up. I was going to wait a little while longer to call, but she seemed surprised I hadn’t already and said she felt it was important for him to be followed by a physical therapist, given his diagnosis.

Now I wait to hear back from Early Start, over whether they’ll accept Baby J. I’m trying not to think about the possibility of both of my kids being in the system. Obviously Mark & I will do whatever our kids need, but it would be more than ok with us if J can catch up without the extra help.

I was also fascinated by our pediatrician’s response to J’d borderline (?) physical delay compared to M’s significant speech and language delays. I had to circumvent our pediatrician to get him evaluated and assisted for what was clearly a problem, yet she readily offered extra help for his younger brother when I was only somewhat concerned. I think perhaps this speak to society-at-large’s view of disability…physical disabilities are in some ways more accepted than mental ones, especially if they are readily identifiable. It’s also another reminder that doctors tend to be trained to pick up on physical delays faster than other developmental delays (particularly speech!).

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9 Comments

  1. So glad that M & J have such a smart mama! Our pediatrician tried getting me to supplement H when he wasn’t gaining weight after 6 months. It made total sense to me though because he started crawling then. He was nursing whenever he wanted and we (regrettably I now feel) had just started rice cereal. Now that I know more, he was using the charts based on formula fed babies. H matched up nearly perfectly with the breast-fed baby charts from the WHO. Thank goodness they are encouraging doctors to use those as the standard now. Anyway, I just wanted to say I think you’re awesome. :) Hope you are well! xoxo

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    marfmom Reply:

    Thanks! Any idea where I can find a copy of the breastfed baby growth chart? I should also give her a copy of the Marfan baby growth chart…

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  2. Here’s the link to the WHO charts on the CDC’s site: http://www.cdc.gov/growthcharts/who_charts.htm

    Also, here’s an interesting article where the CDC documents the decision making behind recommending that physicians use the WHO charts until age 2: http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5909a1.htm

    I didn’t know there was a Marfan baby growth chart. That’s interesting. Good luck!

    PS-We changed to a pediatrician (from the family doctor we started with) when H was about 15 months old. We are so happy with the change, and she has never been concerned with his weight. It is such a delicate balance finding the right physician. :-/

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    marfmom Reply:

    Thanks! And yes, I’ve thought about switching too. But, she and the rest of the practice trust me on anything Marfan, which is not something all my own doctors have done, so that’s valuable. Plus, they’re great whenever the boys are sick. I’m going to play it by ear with what they say about his weight in the future.

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  3. I completely agree with your comments about docs quickly working with physical (but not mental) disabilities, and oh how I hate ‘developemental milestones!’
    My G had cranial surgery at 6mo and didn’t gain another pound for a year, teeth & crawling were delayed, everything was off. I was sent to nutritionists (who didn’t have children) and suggested I add oil, lard, and butter to everything I fed him, the most unhealthy thing I have ever heard. What they refused to hear was that he didn’t eat many solids due to his sensory issues and my fear of him gaining the food allergies myself & my oldest have. He’s always been at the bottom of the charts, hanging out at 30% and never going above 50% percentile. But at 13 he has suddenly grown 6 full inches this school year and has even more noticeable characteristics of Marfans… if only a local doctor would acknowledge it.
    My oldest has had strips added to his growth chart since 2mos, he’s always been above the chart. He’s now 16 and just shy of 6’4″ (with an arm span of 6’9″) yet the doctors tell me that he’s just a gangly teenager and refuse to authorize a simple blood test.
    In a perfect world pediatricians would listen more to moms, afterall we spend nearly every moment watching, worrying, and protecting our kiddos. I think sometimes they connect mom with uneducated homebodies. I’ve done more research & training for the health of my kids in the last 15 yrs than I ever did while in school or for any job.

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    marfmom Reply:

    So neither son has been given a Marfan diagnosis yet? Have they been able to have echoes? Have you checked the list of Marfan clinics to see if there is one near to you? That might help the process. I also think doctors are selective about what physical disabilities they pay attention to. Something like Marfan is so easy to brush off, because it’s rare and many physical symptoms can be found in the general population. Have they used the line “oh, Marfan is too rare for them to have it” yet? I get so angry when I hear people brushed of with that. Marfan is rare, not non-existent. SOMEone has to have it!

    And you are so right: we know our kids better than anyone. I feel like I should get an honorary degree sometimes, between everything I’ve learned about Marfan and the stuff I’m learning to help M. I’m sure you feel the same way about the things you’ve learned to benefit your kids!

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  4. no, nothing official. Jumped through all the referal hoops last spring with my oldest only to be nearly laughed at by the geneticist. I’ve been told that another friend’s local ped ordered a full genetic workup for her 16yr old, so I’m going to see if I can skip the ‘professionals’ and just get the testing done. He’s had an echo (that was clear) but my other son hasn’t and also had cranial deformities that I still worry are returning.
    It took until my 16yr old was 11 to get his Asperger’s & Tourette’s diagnosed, and even in that report the neuro-psych mentioned several Marfan’s qualities like his dispreportionate limb length, flat feet, muscle tone problems, etc.
    Another friend that just moved to CA has a husband & 2 kiddos with Marfans and she was the first to say something to me (along w/ an ENT), but they were the only known local patients here before they moved so I know there is just extremely limited knowledge here.
    I’m going to start making some appts again now that school’s out and I’m not running between work & 3 schools everyday, see if we can get something official done soon. Maybe set some trips for Spokane if needed.

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  5. Here’s the WHO standards and the inclusion criteria.

    (I tried to post this comment in reply to your question about where they were, but your “Reply” function doesn’t seem to work in my copies of Firefox or Chrome.)

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  6. Your pedi definitely isn’t making a whole lot of sense right now. 16Lb sounds great!! S was only 13lb 6oz at 6 months. At that point I had tried to go back to EBF the month prior and it was obviously not working so her pedi just said that I should start giving her a little bit of formula again b/c she need more calories. She did not tell me to stop night feedings at all. Within a week she showed great weight gain. She still nurses some at night at 8 ½ months and while I’m sure this time around I’ll be told she should stop- I definitely won’t be forcing the issue with her.
    As for the cereal- you’re right. Rice cereal doesn’t do much for babies. I totally skipped it with S and just gave her real food that I pureed. Poor baby still has no teeth so I haven’t pushed her really hard on eating a lot of chunkier stuff. I would love to give her more finger foods but she hasn’t quite figured out getting food into her mouth yet!
    You are the mama though and you know what your children need. If Baby J is growing well and happy then why change things?

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