Well, the reduced vomiting thing was short lived. Grayson has woken up the last two days puking, despite the farrel bag and elimination of the medicine I thought was making him sick. Then tonight right after his bath, even before I could get his diaper on, he started retching, screaming and vomiting, and it felt like forever before I could get him to stop.
We saw the GI doctor this morning. Unfortunately, we got almost nowhere. And I like this doctor, I really do, but I was really frustrated with him today. When I told him Grayson has really been struggling since his procedure, he had no idea what procedure I was talking about. And there was no mention of the multiple calls I had made or the conversation with the on-call doctor I had last week. I get doctors have a lot of patients and a GJ placement probably isn’t that memorable to a doctor, but come on. At least look at his chart before you come in the room to jog your memory!
Even though Grayson has not vomited any formula in a month (thus getting more calories, right?), he weighs the exact same amount as he did before he got the new tube! I just don’t understand that at all, but we are going to gradually increase the rate of his feed to see if that gets him to gain some weight. As for the continued vomiting, he offered no real explanation or solution. His reasoning is this is all about G’s lack of motility, so he wants to put him back on the same medication he’s been on three times before (and really made no difference). He’s also putting him back on Prevacid to reduce the acid in his stomach.
I’m thinking about making an appointment with another GI, just to get another opinion and maybe some different ideas. I hate dragging Grayson to even more doctors, but I feel stuck where we are with no real hope of things getting better.
Then in the back of my mind I remember Grayson’s diagnosis. A disease with no treatment and no cure. Am I just getting upset at doctors when really there is nothing they can do? I just wish more doctors seemed more invested in my child, in what we go through every day. I wonder if they even think about Grayson in the weeks between his appointments. Today, a therapist Grayson worked with over a year ago came to visit him, just because. This therapist filled in for G’s regular therapist when she was out for a surgery, maybe 6 weeks. She was a sub, and yet, she checks in with us every few months and came to see Grayson today.
Sometimes I wish his doctors acted like they cared so much.
Poor little dude, sorry to hear he is still vomiting as much. It must be so frustrating for both of you. I think it is very impersonal and unprofessional for the doctor not to take the time to jog his memory about each of his patients, especially such an adorable little boy. I am sure he is a nice person but seriously how could you forget that adorable face? I agree that it wouldn't hurt if you got a second opinion. I think a fresh perspective would be great. At the very least you would know that you were doing everything you could. That's nice to hear that the therapist still checks in on you guys, I don't blame her.
I'm so sorry things are still going so poorly! I think you should DEFINITELY find a new GI doc. My suggestion would be to try TX Children's (specifically Dr Reid). That being said, there may not be much they can do (many kids with mito just do this)! I have no clue what meds you've already tried but I would try all the nausea meds (none of which worked for Reagan), then try the meds for cyclic vomiting syndrome (periactin, amitriptyline, nortriptyline). If it's just reflux then a fundo might help (we chose not to do one because Reagan's nausea would have persisted and she would have just blown it).
Aww, man! 🙁 I'm so sorry. We see Dr. Redel at TCH and I have always really liked her. K is not just a GI tract to her, she always takes her time, asks me about EVERYTHING in K's life and goofs off with her.
Oh, that sounds so frustrating. I can't even imagine going through that. I hope you find answers and that Grayson gets some respite from the vomiting. Abiding with you.
Hi,we share the same faith as you,only that our both children are having Leigh disease,you can read our blog alsohttp://ourlivesninaanddarinandourstory.blogspot.de/i will like to ask you and to suggest,wich mito coctail are you using?We are since Septembar with our daughter Nina on the EPI trial but before she was vomiting since she got her GJtube in January, every day 3-4 times untill April since we started using Idebenone,than the vomiting stoped right away and no big problems since than,maybe you are familiar with that but i can tell you that the GI sistem is also afected with energy need and free radical overloading and Idebenone really works compare to coenzyme q10 and some other vitamins, we hope that you'll be able to enroll Grayson on the EPi trial as wellbig hugsNina,Darin Tanja and Blasko
Ugh, I'm sorry.I second the above suggestion to try all the anti-emetics (come on docs, throw the kid some zofran!). Periactin did make a big difference here, but only when we use it in a massive dose. We need to be on reflux meds, not because he has reflux, but because his stomach can't empty the amount of acid he creates. Can you drain him all day?Hang in there. It's so frustrating and exhausting.
I hate this for you – it's awful that things aren't getting better for Grayson. I do think that your doctors think of Grayson between visits – I mean – who couldn't?
I agree with those commenting that maybe it IS time for you to check into another physician. I admit that until I found your blog I had never heard of Leigh's disease, so I have no experience to draw from. I have prayed for your precious Grayson many times and I will continue to pray. I also pray for YOU. That God will direct your path, and bring those into your path who can help you and Grayson. As a mother myself, my heart aches for you. I AM PRAYING!!!!!!!!!
Poor Grayson! I'm so sorry to hear he's still having such a hard time. He'll be in my prayers. Do what you feel is right for G no matter what anyone else says or thinks. Remember – you are his only advocate! HUGS!!
Boo, so sorry things aren't getting better and how frustrating about that doctor!? Praying for you guys!
Oh no! So sorry that it is not getting any better, perhaps it is time for another opinion, perhaps someone new will have new ideas! So very frustrating and makes for yucky days…hope it calms soon. Thinking about you as always. xoxo-
I think a second opinion is always a good thing. Especially when dealing with something less than common. The more specialized a physician becomes, the less caring they seem. It's like the compassionate part of their brain gets squished out by all of the knowledge they gain. Unfortunate. I bet they do think of sweet Grayson though. I haven't done family practice in 2 years and I still think of many of my patients. He has to make a huge impact on them. I pray that you all get answers soon and Grayson can start gaining weight and doing better!