Talked to Early Intervention today

[Anonymous]

Sorry for the delay in replying. I’ve been super busy with work, and dh has been hogging the computer so that I can’t get on much.

Christine, the doctor doesn’t want us to use periactin because it’s not part of the protocol they use here for getting kids to eat. In fact, periactin here isn’t certified/licensed for use with children. It’s just one of those differences with the FDA, like we can use domperidone here for motility, but you guys can’t. Because it’s OTC, I can try it on my own, but I know nothing about how it should be dosed, and I worry that maybe it’s formulated differently somehow, and that Hailey could be harmed. That’s why I want a doctor’s OK before doing it myself. If something happened to her becuase of it being different than the US med somehow, it would be terrible.

As for going to the US, I think in the end that’s going to be the only option for us. There are so many feeding clinics available to you guys that I’ll have to look into which option is best for us. Denver is certainly a good one b/c my parents are there, but they are also very busy, and would not be able to watch the kids, and probably wouldn’t want longterm guests either (my step father has two jobs, and my mother is principal/director of a private school, as well as doing her PhD in her spare time… so very busy, and not much time for noisy kids. Because we’d have to travel, I need to find a short program that gets fast results. I can’t stay in the US for very long. We don’t have any such clinics in any of the other provinces- Toronto is one of the busiest cities in Canada and we have access to one of the top children’s hospitals in North America. But even Sick Kids hospital in Toronto only has a program for tube weaning, and they won’t take Hailey. That’s where our GI is, and anyhow, the best advice she could offer was to give Ranch salad dressing and to spend lots of time playing with food, so that’s clearly not the program for us.

Thais, yes I did read about the Clinic 4 Kidz on the other site, and I pmed her to ask more questions. I have been interested, but pretty sure that I read on their website that they are not based in Canada, but plan to try again. As for not being stressed out and being able to calm down about the situation, I don’t know how much that will happen until we have the right help. We’ve been going through this for so long now, and I don’t want to have a 3 or 4 year old on my hands that still has a severe reflux issue, that pukes all the time the slightest thing is off, and that doesn’t eat. I’m so happy that after all her therapies we are now seeming to be on track and that even her speech has picked up and seems to be normal as far as I can tell at this point. But we’re still left with the same issues that we’ve had since she’s been 2 months old, and I’m feeling strained and tired, as I know that you can relate. Given how long this has been going on, I realize that these problems are not going to correct themselves, so while I’m so thankful that we’re not dealing with worse at this point, I also think that things should definitely be better than they are.

Heather, thank you for the thoughts and ideas about raising the money to go down. When we find the right place and the right time, we will find a way to get the money. We have some savings that we can deplete, and I don’t know how far it will take us, but we’re not quite there yet, so I’m trying not to worry about any logistics.

Sue- the situation that we’re in sounds quite similar to what you’ve been through with Alexis. Except the amounts that you describe her eating at Hailey’s age are much better than anything we ever come near, which reinforces my concerns that our problems with feeding are worse than people are acknowledging. I’m glad to hear that she’s eating quite a bitter better now.

Sarah, HUGS. I hope that you can get Isaac some help soon. Feeding problems are so exhausting.

Thanks everyone.

[Anonymous]

Lori- Definitely find the help you need! The amount Alexis was getting at that age was low, and it was a very stressful situation for everyone. If Hailey is worse than that, she really needs feeding therapy, since Alexis at 2 1/2 is improving and currently recieving therapy via speech therapist. You are right you don’t want an older child not eating correctly. I think Alexis is finally able to enjoy her food.

Sarah-I hope you as well can get the help for Isaac soon too! Many people just don’t understand that our kids just won’t eat! Stay Strong! It is very exhausting, but it will get better!!

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