Sorry, it has been so long since I posted. Hello to everyone new to these boards. I am sure knowing others are out their like you makes life a little easier.

I have been so busy with the three kids being home. I never get a break. We go from about 8:30am to 9:00pm most days, practice (swimming baseball) to the pool, to games or meets. I try to keep Anthony on a good feeding schedule but it has been really hard.

Anthony(25 mos) is still the same, some days good and some days bad. After we had his last disaster of testing (the video swallowing study), the GI nurse practitioner called, they pretty much have given up on him. They do not know what to do for him. So I called my county (Early intervention) and they came last weds. to meet with me and Anthony. Four woman came he had to qualify in two categories. Weight was a immediatly a qualifier and they qualified him in speech. So once a week they will come to my house for speech therapy and nurtrition. He still eats only about 700-900 calories a day and weighs about 24.10 pounds. He lost a little weight in the begining of summer we all have a stomach bug. But he still does not eat alot. I really still worry about him. My next appt. is with my Pediatrician in two weeks to consider taking out his toncills and adnoids. I feel this will help him, since my older son had the same issues and is better since his surgery. It is funny how people react though, we belong to a swim club so some people have not seen Anthony is a year. Most know of his problems but some are rude and just do understand why he has "not gotten over this issue yet" HELLO are you kidding my. I just roll my eyes and go on with life. One day at the pool he swallowed some pool water and gagged, then proceded to throw up in my beach towel. You should have seen the others react. I was like see what I have to deal with.

After reading this post over, I does sound depressing, but Anthony is a great loving child with a big smile everytime you see him. He is very determined to keep up with his older brothers and most times he does. Reflux does not hold him back, I just wish he was better.

Have a great day.

Sharon

Nice to hear from you again, Sharon! You're among the many parents on these boards who wish that their child(ren) no long had to deal with reflux. I'm glad to hear that you've been able to get some help on board to help Anthony. Has he started to say any words yet? Evan is just starting out with a few words now.

It's really too bad that people react so negatively when our kids reflux. To us, it has just become a normal part of our day.

Please let us know how your ped. appointment goes.

Janette,

The weird thing is yes Anthony talks alot!!!. You may not understand all that he says, but I just ask him to show me what he wants. The Speech Therapist said she thinks his throat is too narrow and that would explain his difficulty in speaking. Making the toncill/adnoid problem more of a reality.

His favorite saying is "Oh Man" from Dora (Swipper the Fox saying) it is so funny when he says it. Another favorite of mine is when he gets mad a someone, usually his brothers he says, "Bobby mean" or "Ryan mean" and of course sometimes "Mommy Mean" when I do not let him do something. He is such a funny child to have around.

I will let you know how the ped appt goes.

Thanks for all your support.

So I called my peditritian today to talk about Anthony since he has been sleeping in my room for the past few nights, we painted his room. He sleeps horrible. I have a monitor on him, but I think he wakes up and I fall back to sleep faster because he is not with me. And since he was right beside me I heard everything. I told the Ped. he wakes up and he breathes really heavy and snores. When he sucks his thumb he has to take is thumb out to breath. So he is not breathing through his nose. I told her maybe his airways are obstructed and thats why he does not eat. Told her he eats only 600-700 calories a day.

I was shocked, in her report from the ENT back in the Spring, he reported Anthony had inflamed toncills and adnoid inflamatory. He was a good canidate for surgery. I was so silent but almost screamed. So my ped told me to contact the ENT and get him in for a follow up. Guess when the appt is? Sept 20th. Recalled my ped to try to get me in earlier.

Just a little vent.

Sharon

Wow Sharon...so did you question why it took this long to find this info. out? Did they think it was gonna get any better by just sitting around and doing nothing? Geez, poor little guy, it sounds as though they may have been able to help him out months ago...That must be so frustrating, I'm sorry to hear. But, maybe now he can get the surgery done and it will be the beginning of some better days. Keep us posted...

Sorry,I have not posted, it has been on busy summer. School starts in two weeks and I cannot wait to get back to a real schedule.

But good news, I had been calling Childrens Hospital to see if I could move Anthony's appt. closer ( it was on Sept 20th). Well today I called and there is a opening on this Wednesday. Thank Goodness. Again he slept with me last night, he climbs out of his crib now (not good) came into my room at 2am and slept with me. He is really struggling to breath at night. I think in 6 hours we got 3 hours of sleep. Husband slept downstairs, I got knocked in the head all night. I hope we can schedule surgery for his toncills, then after that I am taking him to a new ped. I really am still upset about not being told they recommended surgery.

We started early intervention, and a feeding specialist comes once a week and a nutritionist comes once a month. They want me to not feed him so many bottles, he gets about 4 (8oz) a day, its hard. Sometimes he screams for his bottle, and I want to feed him a meal.

I will keep you posted.
Thanks
Sharon

Sharon,

I'm so glad to hear that they moved up Anthony's appointment. No one (especially a child!) should have to wait so long to see a doctor! We've had problems with them too. (For example, Evan's ped. was supposed to call a week ago and still hasn't. Since he's not refluxing badly anymore, there's really no point in taking him in to see if his meds. should be upped...Grrr! Dumb doctors!)

It's great that you've been able to get a feeding specialist and a nutritionist in. I'm sure it'll be a huge help. Maybe giving your son a bit of water or watered down juice in a cup would help when he's thirsty just before eating. That's something that we've had to do with Evan, as he won't eat if he's thirsty.

Good luck with the appointment Wed. and please let us know how it goes.

:cry: Well we went the the ENT early this morning, it was not what I was looking for.

First he asked he how he was doing, I told him he eats very little solids and gags on alot of food. He looked in his mouth and thought his toncills were a little enlarged. So they took an exray of his adnoids and they were fine. So the ENT wants him to go for a pulminary sleep test to determine if he has sleep apnea or if the relux is waking him up at night. He told us that it usally takes 2-3 months for an appointment. So now I am mad. They are going to make this poor child wait more time to do something. Unbelievable.

I tried to explain, okay we wait to do the study, but that still does not explain why he gags. He had no explanation and pretty much said we would have to wait to see if sleep apnea is a problem and then go from there. I asked to have his toncills out, no go.

So here we are again, no one is willing to help and I think this really sucks (sorry, I am really mad right now.) :x Meanwhile he will continue to wake up, sleep with us, and go on gagging on food. How sad is that.

I have a call into my pediatrician for some help.

Thanks for letting me vent.

Sharon

:cry:
Thanks for letting me vent.
No problem! We all need to do that from time to time, especially when we're dealing with doctors who just don't understand what our kids (and us) are going through daily.

I hope that your ped. responds quicker than ours is. It has already been 9 days since I first called his office. I've already called four times and will be calling again in the morning to see why he STILL hasn't returned my calls. His receptionist says she wrote to call me on his schedule for the day.

Janette,

Thanks for your replys. It is very frustrating when you want action, and you feel helpless. The water suggestion is good we do offer water or juice, usually he wants it with no lid, like big brothers. I use a straw, the therapist said sucking is good for his mouth muscles.

I cannot believe it has taken so long for your ped to call you back. That is just rude. I know that they are busy, but you you called for a reason. I cannot beleive the lack of patient care. It really has gone down hill.

I hope you get a call soon.

Thanks
Sharon

Lack of action from doctors is so frustrating and, as you said, RUDE! I hope the call will come soon too. I called the ped.'s office for the FIFTH time in the past one and a half weeks this morning. He was busy with another patient, so they wouldn't let me stay on hold and wait for him. The receptionist said she'd tell him that I had called again, but who knows what good that will do. I'm tempted to request a new pediatrician for Evan, but this one is one of the top three in the area, and there's a long waiting list to get in to see the other two. I wish that this doctor would just understand what it's like to live with a child who is sick with more than a simple cold or the flu.

Jeannette,

I really hope you got your call back from your ped. Luckily my ped called back today. She wants are next move to be seeing the Diagnosis Center at Children's Hospital. The will take all his records, test results and interview his ped, Gi and ENT. Then the try to figure out what is wrong with him. My appt is on Sept 13th. My ped told me that this is a last resort, so I hope it goes well, meaning I hope they find something wrong with him. Maybe I should just convince myself it is in my head, just like they doctors tell me.

Today I was with friends I had not seen in a few years, they know all about Anthony's problems, but never saw him in action. Well he preformed very well, they were stunned to see him gag and the reflux come up and go down. I think when people see your problem they definetly understand it more. After two episodes of reflux within an hour, he fell asleep for an hour or so, then he started snoring loudly. They questioned why the doctors won't/can't do anything, I said I don't know. Why does every mother get that he needs care except for the Doctors.

The bright side is I go on vacation tommorow to the Jersey Shore with my family and my mother. So have a great week and I will post when I get back

Good night.

Sharon,

I did finally (after 11 days of feeling like I was pestering his secretary!!!) hear back from the ped. I was right. It's definitely environmental allergies that are setting of the runny nose and hence the reflux. I had already put Evan on an antihistamine, which is what he suggested to do anyway. No sense doing allergy tests, b/c knowing what plant/dust/mould/etc. sets off the allergies won't change how I'm already treating it.

What is an ENT?

It's definitely only when caring friends and family see these kids in reflux mode that they can begin to understand what we go through daily. Hopefully the tests at the Diagnosis Centre will give you some answers. Are they doing genetics or just reflux tests?

I hope you have a great week of holidays![/i]

Janette, an ENT is an ear nose and throat doctor. Did they suggest Periactin at all for Evan? It's an antihistamine that has the side effect of increasing appetite so if he needs an antihistamine anyway, perhaps that would have a double benefit?

Sharon, sorry that you seem to be getting no where in terms of answers from your doctors but I know all too well what it's like, you are certainly not alone. After four years of waiting for answers for Shae I have just given up asking questions. :roll: I certainly hope you have much better luck than that! :wink: Keep us posted.

Roni,

Is Periactin an over-the-counter drug or would we need a prescription?

It's by prescription unfortunately.

Hi everyone,

We I think I am back on schedule, vacation was not the best one but it was good to get away. Anthony hated the ocean, there were a couple of storms out to sea so the water was really choppy. He hardly ate except for his formula couple of times we had major vomiting, once at a resturant. My mom was exhausted from helping me with him. My older boys started school. My middle one went to Kindergarten, I cried he ran on the bus.

I saw the Diagonstic Center today. Very nice doctor, I had faxed Anthony's records (all 62 pages) to him last week, so he was able to review everything before we got their. For his diagnosis, Anthony has bad a hyperactive gag, reflux and Delayed Gastro empying, no suprise their. But he sat me down and I cried when he told me there was nothing he could do. He can help his symtoms but we are going to have to live with it. It cannot consume our family.

Now, I would have been really mad if he wasn't so sympathic about our situation. He said, you have been to every specialist, feeding team and gotten every test you can for him. Anthony is just this way, it is not your fault or his. I was really upset, but deep down I guess I already knew what he was going to say. I have to stop letting it consume me. He understood the stress of having a child with needs, he has one. But I think he is right. He said that Anthony may outgrow this, but he may not and we will have to learn what foods he can or cannot eat or that trigger is hyperactive gag reflex. I told him it was hard to bring him places because I am constiently worried he will vomit. He understood and thought that any parent or adult who gets mad at Anthony for vomitting is just selfish. He did gain a little bit of weight he is now 26 pounds.

For now we will have just one more test the milk scan to see if his reflux and DGE has improved or worsened since last summer. Then he will adjust his meds and we will go from there. He also wants me to keep him on formula and what we call "safe" foods. The foods Anthony usually does not gag on (believe me there are only about 6).

Sorry this is so long.

Sorry about the news Sharon. Unfortunately, that's just reality for many of us. It took me a VERY long time to come to the realization that your doctor discussed with you. Eventually you will and you will become better at managing it and living with it, without letting it consume your life.

Try not to let his throwing up in public get to you too much. Shae has thrown up in every public place we've ever been in within a several thousand mile radius. Many times, I haven't even had towels with me to clean it up. Just recently, I was in the flooring store trying to pick out flooring, (without a towel) and she began to barf all over the floor. I stopped mid sentence long enough to ask for paper towels then continued discussing the flooring options with the salesman while she continued to throw up. We talked while he passed me paper towels and I cleaned it. This is life. He looked at me a little weird but who cares. Sometimes, I use the opportunity to try to educate people, you know more awareness and all that, but mostly I'm just too tired and busy to field questions so I pretty much act like nothing is happening and hope they don't ask.

Anyway, please keep us posted.

BTW, Shae starts nursery school tomorrow and I'll likely be crying me eyes out :oops: :roll: so I feel for you sending your middle one to school.

Sharon,
As hard as it is to have a child with reflux and other special needs, you really do eventually learn to make it a part of your daily life with the adjustments necessary and without letting it consume your whole life. The overnights in motels that we did with Brandon when he was only 3 months old, didn't happen with Evan until he was 2 1/4 years old, but we also managed to do a family camping trip with the boys for the first time ever this summer.

What I'm trying to say is that you do learn to live with reflux and the various special needs, and you soon don't think much about the daily adjustments to your life. After a while you'll get used to explaining that Anthony doesn't have the flu, that it's not contagious, and that it's just a medical condition that he has. Like Roni, I'm finally past the stage where I worried about where and when Evan will vomit, and I just go out with him anyway.

BTW, how old is Anthony now?

And Roni, that's so exciting that Shae is going to start nursery school tomorrow. You'll have to let us know all about it, and maybe even post a pic. of her first day. Is she 3 1/2 or 4 by now?

She was four in May...I am excited for her but sad that she is growing up so fast. I have to try to remember to take a picture of her, I'll be sure to post it!!

Roni,
Does Shae also have the option of going to Junior Kindergarten out in your province?

Thanks Roni and Janette,

You are right, I do have to go on with life and just exept the fact that he is a vomiter. Anthony is 27 months he was born on May 22, 2002.

Roni, I had a similar experience to yours at the store. We were in a convience store and Anthony started to cough and next thing I knew vomit was everywhere. The people around me ran for cover. You should have seen the looks on their faces. The funny thing was it was not women in their works suits, it was two construction workers who offered to help. The men were great about it joking and all with him after.

May I ask what is junior kindergarten. My preschool has a pre K where you are an older 4 or 5 year old not ready for kindergarten. Anthony will go to preschool next September when he is three.

Janette, is Evan in a preschool, I know around here parents usually put there kids in at two, but I never did.

:lol: LOL Sharon, at least it keeps life interesting!

Shae keeps calling it kindergarten, I figured it was the American coming out in her b/c there is no kindergarten here, I thought it was just an American thing.

Evan had one of those instore cough and vomit episodes a couple of weeks ago. I just explain that it's his medical condition and that it's not contagious. The young female clerk at the dollar store was very helpful and quickly had napkins for me, and was going to wet mop the floor later.

Roni,
I can't believe that there is no kindergarten there! Do the kids in your area just start school in grade one then? Is there kindergarten in other parts of your province?

Sharon,
I didn't bother putting either of my kids in preschool either. Brandon went to a babysitter part-time until Evan was born. I've been home ever since and can do much more of Evan's therapies than he would ever get in a preschool. Since I'm at home, the cost is also a factor.

Our school board, and at least some of the others in our province, has a 2-year Kindergarten program--Junior Kindergarten followed by Senior Kindergarten. Brandon went to JK last year at age 4 and is in SK this year.

Well, technically I guess there is kindergarten but it's called primary here.

I guess what I'm trying to ask is...Can 4-year-olds in your province go to the first year of a two year publicly funded Kindergarten program or do they just have the one year program at age 5?

They can start the nursery school as young as three and go until they are four but and it's not funded, it's like $80 a month. That's all there is here, they will start grade primary at age five regardless of whether they go to nursery school or not.