Posted By Posting
Jul 24, 2008
3blues21pink
DS #1 (7/05) - Just ReDX'd Refluxer! Prevacid Solutab starting 4/8/09. Lots of food and environmental allergies. Autism, Sensory Processing Disorder, Speech Delays, Developmental Delays, Severe Muscle Tone Weakness.
DS #2 (1/08) ReDX'd refluxer. Milk and soy allergies with Soy Lecithin allergies. Oat milk drinker, Rice protein powder, DHA, and vitamins added for bulk and needed nutrition. Weak muscle tone, slightly developmentally delayed, SPD confirmed.
When It Rains, It Pours
We finally saw the light at the end of the proverbial tunnel, but I feel like it's a train looming down on us. Sigh. My youngest was doing well and yesterday was horrible for his reflux. Today is not fairing much better. We hear the noise and then it's everywhere. For instance, between 3:40pm and 6pm yesterday he refluxed (a very good amount each time) 6 times. We have an unrelated doctor's appointment today, so I will talk to him about it then. Then I had to deal with ECI and their lack of help. One issue we are dealing with with our youngest is sleep. He doesn't sleep, that's the issue. They gave me quite a few things to try with him and none are working. Our COTA is out of town so I called asking to speak to one of the other two workers on his case. Some lady I have never spoken to and have never met called me back. She didn't have any of his information. I told her I needed some more ideas to help with this sleep issue because it was getting worse and the poor baby needs to sleep. Her advice? Get a sitter (yeah) and she would have the counselor come and talk to about about dealing with the fact that our son has special needs. Hello, I called them because I realized, on my own, that my son has special needs. I want them to help, not just counsel me on dealing with that. I am dealing with it, now you help me help him. Sigh. They still haven't brought out his therapy items (weighted blankets, snugglers and so on). I ask about them, they tell me they see it on his IFSP and remember the conversation and then act like I am speaking another language. We do have speech evaluation set up for my older son. I am hoping we can get him some very good help because he's nearly incapable of communicating with us at this point.
Jul 24, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I am so sorry you are dealing with all of this right now! I am sure it is frustrating not to have anyone helping with the things you need for your son!

Please let us know how the DR's apt goes today! We will be thinking of you.
Jul 24, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
The old, "I'm not crazy, there is something wrong." Is there something you can do to get them out their faster? Do you have one of those news teams that investigate? They have them here and they are always going after state agencies and landlords, contractors, etc, when they screw with people.
Jul 24, 2008
3blues21pink
DS #1 (7/05) - Just ReDX'd Refluxer! Prevacid Solutab starting 4/8/09. Lots of food and environmental allergies. Autism, Sensory Processing Disorder, Speech Delays, Developmental Delays, Severe Muscle Tone Weakness.
DS #2 (1/08) ReDX'd refluxer. Milk and soy allergies with Soy Lecithin allergies. Oat milk drinker, Rice protein powder, DHA, and vitamins added for bulk and needed nutrition. Weak muscle tone, slightly developmentally delayed, SPD confirmed.
His appointment went well. And, ready for it, just as I said, there's nothing wrong with him medically. But at least I did my part so I can now hammer them to do what they need to do for me. I wonder if it was a stall tactic thinking I wouldn't get in to see the doctor so quickly. I did talk to him about it and he put, in his chart, an official diagnosis of SID. And he gave us a script to get an evaluation at a sensory rehab place that's supposed to be excellent. I called them in his parking lot and they have to check a few things out as they are not sure if they take kids as young as he is or not. Sigh. Great. She is calling me back by tomorrow. I also called ECI back and left ANOTHER message telling them that we had confirmation from our doctor that he's perfectly healthy and I needed a call back today from the therapist to give me ideas on how I can help him sleep and to tell me what day this week I can pick up the weighted blanket (I figure if they don't have one in the office, as least they will order it finally.). I am still waiting for a call back. We will see. Thank you ladies for thinking of us. Boy we sure need that support during this time.
Jul 24, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
That's really sad that they are telling you how you need to handle your end but they aren't even handling their end. I think that's what I'd tell that very helpful lady. I really am sorry. I wish I could help.
Jul 24, 2008
3blues21pink
DS #1 (7/05) - Just ReDX'd Refluxer! Prevacid Solutab starting 4/8/09. Lots of food and environmental allergies. Autism, Sensory Processing Disorder, Speech Delays, Developmental Delays, Severe Muscle Tone Weakness.
DS #2 (1/08) ReDX'd refluxer. Milk and soy allergies with Soy Lecithin allergies. Oat milk drinker, Rice protein powder, DHA, and vitamins added for bulk and needed nutrition. Weak muscle tone, slightly developmentally delayed, SPD confirmed.
I called ECI to ask about help with his sleeping issues now that we all knew there was nothing medically wrong with him. I was told that if a crib weren't so small we could put a car vibrating seat pad in there. But it shouldn't be on except when he's awake. Yeah, that would tick him off royally. Other than that, get a babysitter and the counsellor will be here next week to help us come to terms with the fact that we have a special needs child. I kid you not. It took me 3 phone calls, the woman I WANTED to speak with ignoring the message and going home at 4:15, and going over the entire thing again to get that advice. The good news is, I have a call into the rehabilitation place and they will be calling tomorrow.
Check with your
doctor first!