Little Lennon Bug

25 Jul

This is what happens EVERY time I try to feed my daughter. Even foods she used to LOVE. Even (in desperation) “junk” foods:

Before you read further, go here and read about Lennon’s past diagnosis. Since writing that Lennon was briefly being seen by an OT for her eating issues. She was diagnosed with PTSD because of her cranio-facial surgery and hospital stays. I bought it at the time, but now I’m not so sure. She is back sliding – well, let me back up.

When Lennon first came home from the NICU shew as a GREAT eater. She would eat until she puked. She got really fat. Then she discovered that she could suck her thumb and ever since, eating has been a battle. She has gone through phases where she will eat and then not – after her surgery, for example, she lived on only dry Cherrios for about two weeks. Understandable.

It has never, EVER been as bad as it is right now.

She is down to 19 lbs (from about 21). She was in size 24 month clothing, she is now wearing size 6 month. My 22 month old daughter. Is wearing size SIX MONTH clothing. She’s a twig.

She does NOT need this – she has a heart condition!

I’m at the end of my rope and, honestly, spiraling into depression. I have no idea how to help her and I feel as though the doctors are not being much help.

This has been escalating for several months now and awhile back her doctor sent her to OT. We ended up with the same OT who we had for the girls in the NICU and I wasn’t very impressed with her then either. All she had us do was bring in food and feed Lennon in front of her. Most of the time she ate it – she was doing a bit better then. She saw her four times, for about 15 min each time, and just watched Lennon munch on pretzels. Then she discharged her.

That was a few months ago. Within the past month or so Lennon’s eating issues have spiraled out of control. She basically refuses EVERYthing. Even things she used to love. I’ve even tried offering her ice cream, cookies, etc, out of desperation – nothing. She. Will. Not. Eat.

On Friday we took her to her pediatrician and she is considering a g-tube, but isn’t ready to do it just yet. Next Friday Lennon has a swallow study and she will be seen by her cranio-facial team, a new OT, and a new developmental specialist (she has seen them before, to be screened for Autism – they always clear her, but she continues to struggle).

I am at a loss. All I know is that healthy children do not starve themselves to death. Therefore, SOMETHING has to be wrong. We need to figure out what is going on so we can help Lennon.

Here are some of my theories:

Chairi Malformation

– Severe reflux

– Autism

– the fact that she’s teething is causing her skull to hurt since she has had cranio-facial surgery

– something is wrong post-op (she has HUGE lumps and dents all over her head which via telephone her neuro and plastic surgeons think sound like a normal part of the healing process, but they want to check her out in person just to be sure. Her pediatrician thinks there could be a problem.)

– Since Lennon has multiple birth defects and was “different” even as an embryo (very small, low amniotic fluid, etc) it is possible that she has some genetic condition that we have not caught yet. We have not had her DNA run yet.


24 Responses to “Little Lennon Bug”

  1. roguesophia July 25, 2010 at 9:12 am #

    My heart goes out to you and your beautiful little girl!


  2. MFA Mama July 25, 2010 at 9:22 am #

    Oh, that is SO frustrating! If you end up going the g-tube route I’m here for you with lots of “parenting hacks” for that, but hopefully you can figure out what’s bugging her before it comes to that. Maybe her gut is reacting to something in her diet? Neocate makes flavored “juice-box” style drinks with elemental nutrition, which is the only thing for protein-allergic kiddos but I know they also use it for malabsorption, short gut, and miscellaneous GI weirdness. If it’s a sensory thing she may be more open to drinking and that could be a good way to get some complete nutrition into her while you guys figure this out. It’s NOT cheap but you can find it for sale on (of all places) e-Bay!

    • mrslala July 25, 2010 at 9:29 am #

      She has been on Pedisure for about a year and it was going well until recently. Now she will only drink about one per day, spread out over the whole day. The “juice-box” style drinks sound promising…I’ll have to see how I can get some of those. Thank you!

  3. Kandi July 25, 2010 at 11:42 am #

    I am HFA and have severe sensory issues. Can you try putting her thumb in pudding? I don’t like ICK on my hands at all but I dip my Paci in pudding. (yep still use a paci.) I love warm milk bottles or even warm flavored water. (you could add even more sugar) I too have other stuff wrong and My Mom said she can’t believe I am as large as I am since I eat like a bird. (getting medical help for my internal tummy issues is like pulling teeth). Because of the autism I can only offer help in this area. I also have trouble keeping up with where I comment so I don’t much. If you have questions you can email me and I get there every day or 3. xoxo, Kandi Ann

  4. Kandi July 25, 2010 at 11:45 am #

    Something else that I thought I should add. I cannot stand to be spoken to while I eat. It makes me severely sick to my stomach and I will not eat that meal. At all. Maybe move her to a different room and give her a variety (Not touching, ewww) of diff foods and walk away to where you can see her but her not see you.

    • mrslala July 25, 2010 at 7:57 pm #

      You may be on to something! She does seem to sometimes take a few bites when we ignore her. I’ll try that. Thank you!!

  5. Kandi July 25, 2010 at 11:55 am #

    Oh. and my mind is going fast. The biting may be caused from over stimulation. If you can, get her some place quiet after an out burst so she can settle down. I have been on my own, emancipated at 14/15is and just moved home a few mos ago (I am 40 now). I am self taught so I don’t have a lot of book stuff to send your way. Just what works for me. My nephew came over last night with a knife (day 3 of him being out of control) and I was still shaking hours after he left (he actually handed me the knife before leaving). I asked my Mom if she was still shaking and she said no she was fine as soon as he left. I know I am different, I used to live alone, I am learning just how different I am. :o(

  6. Laura July 25, 2010 at 12:25 pm #

    It almost looks like maybe a sensory issue could be involved. Maybe she gets overloaded when it is time to eat? My youngest does something similar when he gets overloaded, only he grabs his paci and stick it in his mouth instead of his thumb. Hope you can figure something out soon!

    • mrslala July 25, 2010 at 3:01 pm #

      She has sensory issues for sure, we already know this. The question is if that’s the only issue going on at meal time – how do we keep her from wasting away?

      Today she hate four marshmallows. That’s IT.

  7. battynurse July 25, 2010 at 12:33 pm #

    Hope you find some answers soon.

  8. Stephanie July 25, 2010 at 7:19 pm #

    Oh Lala…I’m so sorry for sweet Lennon and you. I know this must be causing you tons of stress. Do you read Trish? I can’t think of the blog name right now. Her son Robbie was a preemie and has had feeding issues. If you don’t read her but would like to start then shoot me a message and let me know. I will send you her blog address.

    I don’t have any real advice for you, and I’m so sorry. If she has SI issues do you think it could be a texture thing? Do you think maybe you could try some type of stress release activities before her meal time? Hugs and keep us posted!!

    • mrslala July 25, 2010 at 7:57 pm #

      I’d love the link, thanks!

      I think part of it is sensory issues – there have always been food (textures) that she won’t touch. But this is different. This is worse.

  9. Ms. J July 26, 2010 at 6:25 am #

    Honey, if only I could wave one of LP’s many magic wands for you and make this better . . . .

    Forgive me if you already have and I am just confused . . . is there an interventional therapist you can see? Somebody who can be The Captain of Lennon’s entire ship, pulling together all of this info and coming up with a strategy or plan? It’s overwhelming you, and it’s gotta be confusing with so many specialists either wanting to “Wait it out” or “try this” (yet again).

    Please think about seeing your doctor or a counselor for some relief or help, too – YOU need to be sharp and feeling empowered to handle Lennon, not to mention Evy, Nolan, hubby, the new job, house, and a thousand other things. Like they say on the airplane – put on your own mask first before assisting others, so you can think clearly and take better care of those around you.

    Wuv you.

    • mrslala July 26, 2010 at 8:34 am #

      Her pedi should be the one “piloting the ship” so to speak – but I don’t think she really “get’s” it. I am trying to find a way to send her this video becuase all she ever sees is a little girl who is maybe a little bit nervous to be in a doctor’s office and all she has to go on is our (Hubby and I) word. Not that she doesn’t believe us – she does and is taking action, but I wish they would move FASTER. Something is obviously wrong with my kid. Healthy children do not starve themselves. =(

      As for me, I need many things – none of which I have time for. ::sigh:: lol

  10. Aunt Becky July 26, 2010 at 2:30 pm #

    Aw hell. I’m so sorry. I don’t have advice and I don’t know why. I’m just sorry. My two big kids have eating issues because they have CONTROL issues, which is not serious. I’m sorry and I’m here if you need to talk. You have my email address.

    Much love. Please, let me know if you want to talk.

    • mrslala July 26, 2010 at 5:55 pm #

      Thank you. I really do appreciate it. If memory serves, you have a son on the spectrum, don’t you? Did he ever have “food issues”? I know you said control issues…but nothing like this, eh?

  11. Kristin July 26, 2010 at 8:09 pm #

    I am so sorry, this sounds incredibly incredibly hard. I have no experience or advice, other than to trust your gut and keep seeking help until you find it. Big hugs from another twin mama.

  12. annacyclopedia July 27, 2010 at 12:59 pm #

    Oh, sweetie! That all looks and sounds incredibly worrisome and frustrating. I can only imagine how hard it must be to muster the energy and strength to advocate for your little Lennon when you have to face that every mealtime. Big hugs to you, and I hope you find info and help very soon!

  13. Orodemniades July 27, 2010 at 4:18 pm #

    My heart just breaks for you – she’s been through so much, you’d think something would go more easily for her.

  14. Two Makes Four July 27, 2010 at 5:02 pm #

    Lord, I haven’t checked in for ages. How the hell are you?

    I’m at a loss what to say other than I’m so sorry. I can’t imagine how frustrated/at the end of your rope you must be. I would go NUTS.

    Off topic: When did Nolan go and grow so much?!?

    • mrslala July 28, 2010 at 9:18 am #

      He is enormous, isn’t he? We just had all of them weighed. He is 20 lbs!

  15. Sarah July 28, 2010 at 7:20 pm #

    Okay, i am finally de-lurking. I have been checking in for awhile now, dont really remember how I came across your blog in the first place though. Please forgive me if this sounds stupid, because it may be a suggestion that you have already tried or wouldnt help but I thought I would offer it in the off chance it might work. We struggle in our house to get our little girl to eat(though things arent as severe with our daughter, my heart goes out to you) and in researching ways to get her to eat I ran across this womans blog who has taken preparing her childrens meals into an art form. She crafts themes for their lunches and dinners and uses all kinds of items to further her theme. For instance for the 4th of july she used a panini press to grill stripes on a grilled cheese sandwich, which she then served with fruit skewers of rasberries alternated with blueberries. Now, in no way am I that crafty but what I did take away from her site was that turning food into something fun would interest my daughter in eating it. I make her sandwiches into shapes and skewer her fruit in different patterns, I put sprinkles in her applesauce and yogurt and it does seem to help peak her interest in eating. I guess what I am asking you is- if you cut her sandwich into a heart or turned her pancake into a little face- do you think she would eat it? Also, what if you let her feed you little bites of food, do you think she would let you feed her in return? Please forgive me if these suggestions are off base, I only mean to try and help!

    • mrslala July 28, 2010 at 8:21 pm #

      THANK YOU for delurking and THANK YOU for the advice. I will try anything to help my poor little monkey. At this point – I’m getting hysterical. I even sent that video to her doctor and got NO response!

      I love the idea of adding sprinkles to her food, I will pick some up tomorrow.

      I don’t think she will care much for any other sort of special presentation – it might actually freak her out…Well, skewered fruit sounds like it might work.

      As far as feeding her and then letting her feed us – we do that a lot. No dice. She LOVES to feed us but as soon as we try to “give her a bite” she does what you saw in the video.

      We’ll keep trying.

      Thanks again. We *really* appreciate it. ((hugs))

  16. Theresa July 29, 2010 at 5:42 pm #

    I have no suggestions, I wish I did. Just wanted to let you know I was thinking of you and hoping that you get to the bottom of this soon.

    I was so happy when things were headed up and in a positive direction for you. You and your beautiful family need a break!

    I hope one of the many wonderful suggestions above help or that the medical professionals are able to get things headed on the right path, especially to get Lennon eatting again.

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