It’s Been One Hell of a Rollercoaster Ride March 11, 2009
I don’t even know if I can sum up my feelings on the events of the past few days properly. We’ve definitely had some highs and lows.
So, we tried the Alimentum formula with Adam this weekend, and things went from bad to worse. It was not good at all, so back we went to the Neocate.
We headed back to National Jewish on Monday and sat down with the team to discuss the plan for the week. At that point Adam was still reacting and still a mess, so we definitely needed a plan. The doctors decided that it would be beneficial for Adam to have a 24 hour PH probe study done in order to see if he was still having reflux problems that could be contributing to the situation. The PH probe study has to be done while you’re in the hospital, so Adam and I ended up staying overnight Monday night.
The probe results showed that Adam’s reflux is borderline, and the doctor didn’t think reflux meds would be necessary. We also got Adam’s biopsy results back Tuesday afternoon. They all came back normal.
The really valuable piece of info we gained came as a result of the fact that they had Adam on Neocate only for the 24 hours of the probe. To say that he started doing better would be a vast understatement. We finally got to see our happy boy again, and it was so nice. Even with the probe still down his nose/throat he was running around, smiling, laughing, talking up a storm, and his other reaction symptoms started calming down.
So, what did that tell us? Well, it told us that he wasn’t reacting to the Neocate like we thought he was. He was either reacting to his barley cereal or applesauce. I honestly don’t think we would have been able to figure that out without him going Neocate only for the 24 hour probe.
(Side note: Someone asked in my comments what symptoms Adam displays when reacting. We he eats a food that his body doesn’t tolerate several things happen. The eczema on his cheeks flares up badly. He has major sleep disturbance to the point where he can’t sleep through a sleep cycle causing him to get up every 45-90 minutes. He can’t even sleep through a nap. His poop gets mucousy and foul, and he gets a resulting red ring diaper rash. He refluxes. He bites because he hurts. He gets super fussy. Not just toddler fussy, meltdown fussy. He screams and screams and is just a total mess. And when things get bad enough he starts refusing to eat. Basically, he turns into another kid altogether.)
So, the Neocate discovery was the high. Now for the low. Today we headed back for a group meeting before we head back home tomorrow. We could stay longer and do food challenges here, but we’re ready to go home, and it will be easier to do them at home anyway. So, in this meeting we immediately got blindsided by an allergist who we had never met before, and consequently had never even set eyes on Adam before. He proceeds to tell us that there’s no way that Adam’s symptoms can be food related. Basically, we’re just making all of this stuff up.
The people here have not gotten the whole non IgE thing from day one. To them if Adam’s skin doesn’t puff up during a skin test or he doesn’t have eosinophils present on his biopsies then there can’t possibly be anything going on in his body related to food. I wish I could express my frustration at dealing with these people, but I know I can’t come close to describing it.
They didn’t stop long enough to listen to us or to watch what was going on with Adam while we were here to even try to understand. They are just writing us off as crazy parents.
I am trying my hardest to focus on the fact that we know him. They don’t. It’s clear as day that Adam reacts to foods. Clear as freaking day. Just because I don’t need to tote around an epipen doesn’t mean that there’s not something going on with him.
So, yeah, a great day, huh? Do these people think that we would have gone through what we have if we didn’t have to? Do they think that our efforts to add in new foods to Adam’s diet for the past 18+ months were a joke? Do they think we spent thousands upon thousands of dollars and spent time away from home that we didn’t have (especially for Dan and his work) to make this trip possible for the hell of it? Why would we go through all of this if we weren’t trying to help him? I just don’t understand.
So, we are getting on a plane tomorrow, and I am so freaking glad. I cannot wait to get home and put all of this behind us.
We do have a plan for going forward, and it’s one that we will be carrying out without the folks here in Denver looking over our shoulders with disapproving eyes. Once we figure out the barley/applesauce thing we will be starting food trials again. The dietician here was the one helpful person we met with, and she helped us come up with a plan for introducing which foods in what order.
It wasn’t a totally wasted trip, because we’re bringing home a little boy who now has a solid base of nutrition that he is tolerating. The Neocate provides his nutritional needs, and we can work from that base to expand his diet with other foods. We have made progress even if we had to deal with people and a situation which was very disappointing. I just wish we would have had a more positive experience. It’s hard enough to deal with all of this stuff as it is.
- Posted in : our main man
- Author : amanda
Comments»
she reported you for what? WTFH? of all the stupid ridiculous notions. I’m gobsmacked.
SO so so so happy that Adam is tolerating the Neocate I’m so glad you have your little boy back.
I wish I could say more but I’m still spinning by that stupid bint reporting you. her ignorance is outstanding, love you kiddo and while we aren’t the childrens welfare officers we here inside your computer know you are a great mum and only ever want what is best for Adam. Proud of you for not smacking her upside the head.
My God–I’m horrified for you. I’m glad Adam’s getting some help, but it’s appalling that you should have to go through all this to get it.
Good god, these medical “professionals” are so typical and it’s sad. Can’t find out what is wrong? Then there is nothing wrong and it’s all in your head. What bullshit. YOU know Adam. End of story and YOU know that there are things that trigger him, I’m wishing that things had gone better, but I’m glad for the Neocate. I’m sad that they would have the gall to call CPS on parents OBVIOUSLY trying to make their beloved son better. I’m so sorry Amanda. Ignorance and “holier than thou” medical professionals would do well to get a grip and figure out they don’t know everything. I’m sorry that things did not go as hoped. I’m glad that the dietitian was at least some help and you guys WILL get through this. I have friends with medically sensitive girls and both of them have similar problems but not quite as extreme. Although they both had delayed speech, they are happy, smart kids, and as they’ve gotten older, they’ve been able to tolerate more foods. They still react to protein in an extreme way, but they finally found a protein source that worked for them. And people thought they were crazy too.
Amanda, I haven’t commented for a really long time, but this time I couldn’t not say anything. I am APPALLED for you. Absolutely furious! I pray that everything starts to turn around really, really soon. All three of you more than deserve it.
OMG! I’m so pissed off FOR you! Reminds me of MY experiences with doctors in Denver. Is it the altitude?? Keeping everything crossed for you. I can’t even imagine. Your story always puts me in my place when I “struggle” with toddler food issues. One question for Mr. Allergist. If people with Celiac’s react to food with gluten, but don’t have an allergy, why can’t Adam be reacting to food without an “allergy?”
I am so mad on your behalf that I could spit. What a raging bunch of a*holes. That’s right, parents who “neglect” their children forego their own personal nutrition, travel to another state, seek as much professional help as possible…I’m sure you’ve already got it covered, but if you need someone to go “mean lawyer” on them (Denver and/or TX social services), please let me know.
I am so glad, though, that the Neocate is working, and I hope that it’s just a great first step towards a fuller diet and happier boy. He truly is a gorgeous, sweet little man.
Wow! I’m so sorry. I can’t imagine how upset you must be!
I am really glad about the Neocate. And I am crossing my fingers on the food trials.
OMG! I cannot even believe those doctors! That’s ridiculous. It annoys me when medical professional just stick to their guidelines and judge on those rather than understanding the situation. That being that you two are the most caring parents out there. I can only imagine how upset you are and that is just ridiculous.
I am happy to hear about the Neocate and am happy you are heading home. Good luck on the food trials!
Great news about the formula!
As for the rest, I am LIVID for you. After having such hopes that they may actually be able to HELP then this. GAH!
OMG. I’m the one who asked about his reactions-let me just go on record that it absolutely was not from a place of doubt! I could just tell that it wasn’t an epi-pen reaction from what you were saying, and yes, therefore not IgE mediated. That doesn’t diminish the symptoms nor the reality of they’re connection to diet.
I am happy that the neocate will give you a safe base to work from, I know that has been one of your biggest obstacles. I can not believe that you had to go through the whole mess though to come out with that pearl of knowledge. Unbelievable.
Adam is lucky to have such great parents willing to do everything possible for him. With the neocate, hopefully the food challenges will give you a slate of foods to work with. Poor little guy, to have food make you feel so bad.
I want to say this as gently as possible, but — maybe the doctors have a point? I don’t mean about reporting you to social services, which is ridiculous, but is it remotely possible that some of Adam’s reactions are in fact not physiological, but are emotional (and ultimately temporary) reactions to being given “new” food after living on just a few foods for so long? It seems worth considering, and not just rejecting the opinions of respected medical professionals out of hand.
Yes, you know him best, but you also are so close to the situation that you inevitably don’t have a lot of perspective, and you’ve been emotionally invested for a long time in the idea that your breastmilk (and all the sacrifices you’ve been making) is the only thing keeping him alive. I think psychologists would also say that your anxiety about giving him new foods (not to mention your ambivalence about quitting breastfeeding) could be rubbing off on him, and potentially making both him and you hypersensitive to every symptom. Kids throw tantrums and have bad nights. New foods feel strange in their mouths and tummies, and they don’t like it. Poop smells bad, and kids’ poop changes as they grow. Not every problem is attributable to food.
Again, it’s difficult to say this gently and I’m sorry if it’s coming out the wrong way. You are clearly an amazing and loving mom. But I really think it might be helpful to spend some time with the notion that if a team of some of the best specialists in the field don’t think there’s anything seriously physically wrong with Adam, it might be time to rethink your own attitude and approach to the problem.
Having been reported by health care “professionals” when my youngest was little, I totally understand. We had a lot of the same issues and a lot of the same experiences with doctors. We were completely blessed to find a pediatrician who did NOT think I was making him sick on purpose and did some digging. My son was determined to have Celiac Disease and has been amazingly healthy (for him) since he’s been gluten free.
As soon as we got a positive blood test I took it into the doctors who had reported me. Told them to kiss my ass. Best day of my life…
Amanda- I’ve been a long time reader and this is my 1st comment. I’, appalled that they reported you and wanted to offer support. One of my kids was on Neocate for 15 months and it was a lifesaver. FYI - in a lot of states insurance is required to cover the Neocate. I’m sorry you didn’t get the answers you were looking for and hope things improve.
JenH that is absolute claptrap. Have you been following this blog for long? because if you have you’d know Amanda has nothing but the best intentions towards raising a happy healthy child. She is not causing this by breastfeeding, nor is she causing this by only giving Adam foods that his little tummy can tolerate. I strongly suggest you go right back to when Adam was born and read or re-read every post relating to his feeding. Then if i may be so bold go look in a mirror and repeat “i am a thoughtless idiot to be so cruel to someone who does not deserve it”
I have to respond to JenH as well. Doctors aren’t always right and don’t always know, and blaming the parent seems to be their only way of getting around it. Rather than admitting that they didn’t know what the cause was. My friend’s son suffered mild seizures for years while her pediatricians told her it was anxiety related behavior and she was making it worse for him by focusing on it. Low and behold after finding the right specialist to do the right tests, he has a seizure disorder that could have been treated years ago.
Unless you have lived this situation, making a comment like this is just incredibly hurtful to someone going through what Amanda is going through. I’m sure you were coming from a place of caring but you’ve done exactly what doctors do - because you don’t understand it, you blame it on the parents. Amanda deserves support, not condemnation.
Jen(14) — Yes, I’ve been following this blog for (literally) years, since Amanda was pregnant with her son. Also, if you actually took the time to read my comment carefully, you would notice that I specifically cited the sacrifices Amanda has been making for Adam in breastfeeding him through his difficulties for so long, and that I called her “clearly an amazing and loving mom.” I don’t think that indicates any lack of awareness about the situation, let alone “cruel[ty]” or “thoughtless[ness].”
Like everyone else here, I said that I thought the social services thing was ridiculous. Your comment attacks strawman arguments that I did not make; I by no means made any criticism of Amanda’s intentions, nor did I suggest she was “causing this by breastfeeding.” I only suggested, as gently as possible, that there might be another way of looking at the situation, and that the medical professionals might have a point.
This is obviously an anguishing and difficult situation for Amanda. If she feels she’s best served by only hearing an echo chamber of “doctors suck - you’re doing exactly the right thing,” then she’s certainly free to delete my comment. I don’t think echo chambers are particularly helpful, though. Yes, support is important, and cheerleaders are important. But I know that sometimes in my own parenting I’ve heard perspectives that I didn’t want to hear, and while they irritated me at first, some of them actually turned out to be helpful. At the very least, sometimes they gave me a little outside perspective, even if I ultimately decided to keep doing what I was doing.
That’s all I have to say about this. I’ve made my point. Amanda, I wish you and your gorgeous son nothing but the best, and I’ll continue to root for you and follow your progress.
I would say that a strongly-worded letter is in order. My god.
Cheers to the Neocate. Let’s hope it continues to work, so you can eat a big juicy steak again!