Our doctor's appt went well this morning. I feel VERY confident that Dr. S is on top of things, researching EB nutrition, g-tubes, and talking to the right people. He had even already emailed with Dr. Fine!!
But, because there's just kind of a natural plateau around eight months and Jonah's not losing weight, he's still in the wait and closely monitor stage. He said things will change if he starts losing weight, stops eating in his sleep, or goes a few more weeks without any weight gain.
He's talking with the surgeons and anesthesiologists at Brenner's so we can go ahead and get everybody up to speed and start discussions of what would need to happen if we did have to get the surgery.
And he's been started on Periactin just to see if it might work. Periactin is an antihistamine that also increases appetite. He just wants us to try that before we take more drastic measures.
So that's where we stand right now. No plans for surgery in the immediate future, praying that the Periactin will work at increasing his appetite and that Jonah will show interest in solids... especially the yogurt which has lots of nourishment value (as opposed to other stuff that's more just getting them used to eating food.)
Thanks for praying!
38 comments:
For what its worth. Miles is on Cyproheptadine that sounds like the same thing as the medicine they put J on. Its an internal antihistamine that is supposed to increase appetite.
but he is on it because he has a butt load of allergies. Has a protien allergy ever been discuessed? could that be the reason for his gushers???
I'm glad you guys had a good appointment.. Hopefully things will turn around soon... Hang in there little Jonut...
Well that sounds good! I am praying for him and your family! I hope he gets an appetite with the medication!!
I think it's great the doctor is talking to others so they know what to do in case he needs the tube! That's is awesome!
I am sure you are quite relieved. Isn't it great that the doctor is consulting with others. Doctors who acknowledge that they can learn from others are the best kind!
Prayers of gratitude & continued health
My daughter was put on Periactin (cyproheptadine) for a while when she was diagnosed as failure-to-thrive because of poor weight gain. That stuff really worked for her.
Also not sure if this makes you feel any better but my youngest son was 17lbs 4oz at 9mos and only weighs 18lbs 120z at 13mos. As for my oldest son he was 17lbs 5oz at 9mos and 19lbs 8oz at 1 year. Perhaps Jonah is just "resetting" his growth curve, but I will continue to pray that his eating improves. I know how much weight gain, or a lack there of, is worrisome even for someone like me who has 3 healthy, albeit small, children. Thinking of you a little Jo-nut =)
YEAH for eating! Glad things went well and it sounds like your doctor really has his ducks in a row...quack, quack!
Have a great Wednesday and I will see you two on Friday:)
Love & Hugs, Aimee
I hope he starts to love yogurt. My son's acid reflux greatly improved when he ate yogurt daily. My husband even eats it daily now and no longer needs his reflux meds.
So glad to hear a good report! Praying that yogurt and Periactin are just what Jonah needs to get him over this hump!
that is great news!
I am with you on the eating frustration. My 14 month old has decided she does not like food. She will eat a decent breakfast and drink milk but the rest of the day is a fight to get her to eat. I could not imagine the stress you have with Jonah not eating.
Praying that the medicine does the trick!
Oh how wonderful! Keep eating that yogurt, Jonah man!
I hardly comment at all but felt led to today. So happy that your doctor is on top of his game! That's great! And so happy that surgery and all the worries that go with it have been put off. Good news!
Our boys love yogurt! Have you tried the drinkable kind? YoBaby makes some in peach and banana flavors. Or the Danimals kind with the monkey on the front. (Our boys call that monkey juice!) We just put a straw through the foil on top and give it to our 10-month-old and he loves it. Not sure if it would be easier for Jonah to drink rather than take it by the spoon. Still praying for you guys. Oh, and it's totally true about resttting their growth curve, especially babies that had breastmilk early on. My boys all went from 97, to 90, to 75 percentile, and then averaged out around 50th percent. Hang in there, mama! You're doing a great job!!
YAYYYYYYY..... i am so happy for the results of the GI appointment!!! I will be praying for jonah to start eating and gaining weight!!!! I love you Jonah!!! Lots Of kisses!!!!!
A thicker yogert that my babies love and is easier to get more down b/c it is not so runny is Yoplait Thick and Creamy. i loved it for my babies. I don't know if it will work for you and Jonah. just thought I'd throw it out there. praying for you and Jonah.
I've always been told watch the baby not the scale.
I hope the new med works for him.
Is there any way to get him to a different formula that tastes better and might increase his desire to eat?
That is WONDERFUL news! We will pray that his appetite grows.
Thank you for the updates. To think of us during these times is extremely generous.
Answered prayers!!! You found the right doctor you have confidence in, AND you found out that it is ok as long as Jonah is not losing weight, and you feel better that there is some medicine to try yet.....no lost hope yet! Keep on a prayin'!!! He hears!!!
I'm glad the appointment went well. Have you tried to give Jonah a "spoon" or something similar he can safely hold while you feed him? I would just keep at it. Feeding him at regular meal times every day and don't give up. Also I wouldn't let him see you upset or frustrated when he won't eat, I know he's really little but sometimes kids just get a kick out of being in control. My son had bad reflux too and most days it seemed the whole entire bottle would come back up, actually I think it looks like a lot more than it is. At 11 months it stopped suddenly. He was never on medication for it because his doc said as long as he's gaining weight, he's getting what he needs. Good luck and keep on feeding him.
Awesome News for Jonah! I agree about the yogurt. My kids loved it too and never turned it down. Yoplait has a custard style yogurt that is calorie dense (about 200-250 calories for a small cup) and it is absolutely delicious. My favorite is the Vanilla as it tastes a lot like cheesecake! We will all keep the prayers coming.
I'm sure having more confidence in your doctor is a relief. Still praying that this is just a phase and the new meds help.
So great. Somehow I feel peace for you about the wait-n-see. All the concerns are so real but even in the midst it is always on God's time. Hope the meds kick it in and though J is not the same, I think a lot of us saw that plateau and got concerned with our own. We'd like to lose a few pounds but we like those fat babies :) A friend showed me YoBaby meals the other day. Yogurt with apples and sweet potatoes or pears and peas. My girl likes them so far. Prayers at ya.
Not that I don't think about you guys all the time anyway, but this morning I couldn't get you off my mind. See, I knew you were at the GI at the same time I was having my swallowing test done and then I went on to see the dermatologist.
I guess it was just an EB doctors kinda day!
I am so relieved for you guys that you don't have to make this decision right now. So glad that you have some other options to try first.
As for the puking - I'm sure I've already said this, but my now 3 year old did the same thing for her first full year. She was diagnosed with something called "lazy stomach", my husband and my brother both had it too. Apparently its pretty common. Basically, the stomach isn't fully developed and they just puke - all the time! At exactly a year it all just quit - all on its own, no meds no nothing. My mom and my mother in law said the same things happened with my husband and brother.
I hope he keeps on eating and taking in fluids!! Go Jonah!!!
Again - please feel free to call anytime!!
Janel
I am so glad to hear that the surgery has been postponed for now. You know some babies just don't love baby food and Jonah is old enough that you might be able to try finger foods. It might get him more interested in real food. Mashed up bananas, real sweet potatoes, cheerios. Just a thought and I am always praying for you all. I am hoping he starts gaining soon.
Yay! Praise God that the appointment went so well! We went through a similar thing with our son about a year ago- SO close to getting the tube, but then with the addition of Periactin and also a calorie supplement called Duocal, he started gaining weight again, very slowly, but enough to keep him away from a tube. Praying that the same thing happens for Jonah!!! You might check into the Duocal- it is a tasteless powder that adds 25 calories of carbs and fat per scoop, and the scoop is really little. It's worth a shot. Anything to avoid the tube, right? :) Best of luck, and many prayers!
glad you guys had a good appointment! Hope everything turns out for the best, and there isn't any surgery!
Praying he becomes a starving boy and eats and drinks a ton for you! His new pix are so adorable!
Sounds like a great reassuring appointment. Hopefully J will decide to eat a lot over the next few weeks.
That's great news! It sounds like your Dr. is doing a great job, and that's definitely an answer to prayer. Thanks for keeping us updated!
~Amt
Praise God for no surgery right now! Will pray that Jonah's appetite will increase and that he'll at least grow to love yogurt!
Am also praying for you and Matt - that God will continue to give you wisdom and peace.
Love,
Laura
Just so you know you are not alone, neither of my children were the slightest bit interested in solids until 9 months of age. I know there is a greater urgency with Jonah for EB nutrition, so I hope he will hit that "moment" of LOVING food real soon while you are waiting till the next weigh-in.
Also, as I've seen a couple of other parents mentioned here, my daughter had reflux where she had daily gushers even when medicated (and silent reflux too), and it went away between 11 and 12 months (which is when the doctor said the esophageal sphincter had developed enough to stay closed so that everything wouldn't come back up).
I'm praying that he'll start gaining weight soon, and reflux will end soon, so that all of these nutrition issues will no longer be worries in the near future.
Melanie (Warner) Peden
we are so glad to here everything went well!keep us up to date!
love you
Erica
Yeah for answered prayer and a good report. It's been amazing watching God at work with you and Matt. You were so prepared in case he needed the g-tube, but God said, "Nope" for now! Glad to hear the doctor is getting up to speed on everything and you are more confident in him.
Go Jonah go!!!!
So glad you got this kind of news! My daughter was on the same medicine. She refused to eat much from age 9 mos to 5 years old. I thought I would go NUTS worrying, and I cannot imagine the depth of your worry with eb on top of the eating thing. The med did help her appetite. Just keep persevering. You are doing such an amazing job with your sweet little boy. He is just beautiful!
If you are talking about the "Dr. S" as in Dr. "name that makes you think of Halloween"... he is GREAT! And his associate Dr. H at Baptist is GREAT as well. I have two children that see them both for choking issues, and they have been the best.... very caring and open to other doc./and parent ideas. Your boy is in great hands: 2 wonderful Physicians and the 1 GREAT Physician! God bless!
AWE.SOME.NESS. Nothing better than feeling our babies are in good hands. Will continue to pray!!!
YAY!!!! =)
Wishing Jonah a late Happy 8th month Birthday, he was adorable in that picture. Glad all went well today, hang in there. I continue to read your blog and keep you in my prayers, just don't comment as much. Take care and May God Bless.
What good news, sounds like God has sent the doctor you asked for right there to you! Praying this new med will make Jonut hungry, and he will eat peacefully, with out any gushers!
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