OT--help me talk to my Pediatrician please! update#11!

[JoBird]

This may be a bit long, but I am in need of some help for my DD, age 4. I don't exactly know if she has a problem or if it's her personality. This is where I need advice from all of you.
She has always been a picky eater, but I am beginning to believe that there is much more going on with her. There are only a few things she will eat, here is alist:
scrambled eggs, PB&j, Orange yougurt (nothing with lumps or bumps in it..smooth only), macaroni and cheese-Kraft only-, ice cream, crackers, chips, any soft bread but not crumbly-type bread (biscuits, or cornbread are out), and Chic-fil-a sandwiches.

That's all. The only protein she ever gets is eggs, eaten every day and pnut butter and the occasional chic fil a sandwich. No vegetables, no fruit. She has been this way forever. I thought that it was only pickiness, but I think it is a deeper issue. She gags at anything she smells to the point of throwing up. She even thinks things that would normally smell "good", stink and she gags (perfume, some flowers). It is very sad to me... she is hungry all of the time and irritable. I try not to make a big deal out of it , so it doesn't become a power struggle, but she truly is terrified of food. She starts crying and says, "It will make me throw up, Mommie" and then she exhausts herself and will go off and fall asleep.
My question is Do any of you have any insight to these symtoms with your children and what did you do for them?
I have an appontment with her Pediatrician in two weeks, but I am worried that he isn't going to understand how worried I am about this. TIA for any help.

 

[KathyRN137]

Hi!

You didn't mention any other behavioral or developmental concerns, so it seems that your DD may be "sensory defensive" when it comes to certain odors textures. There could be many explanations for this.

First, let me share with you that I have an autistic DS (8yrs) who has similar issues (not that I think your DD is autistic, just that I know where you are coming from in this area). Also,I have been an RN for 20 yrs and have worked in a Doctor's office for the past 5 yrs, so I do have some advice about how to talk to your DD's pediatrician.

Primary care physicians are under a lot of pressure to see as many patients as they can each day because of the current reimbursement system dictated by health insurance companies and managed care. This is why your doctor may appear rushed and why his office is probably overbooked and it takes so long to get an appointment. It stinks, but that's the way it is. My first bit of advice is to call the office and ask to speak to THE NURSE. Explain that you have some extra concerns that you wish to discuss with the doctor and request that EXTRA TIME be booked for DD's appointment. She will help you to arrange this with the reception staff. Try also to get an appointment for EARLY IN THE DAY. The doctor gets more and more behind as the day goes on and will tend to spend less and less time with each patient. He will be more relaxed and will be more open to talking about your concerns if his waiting room is not backed up yet.

If you are able to bring another adult with you to the appointment it will help. It will be easier to have an uninterrupted conversation with your doctor if you have someone with you to supervise and attend to your child.

WRITE DOWN A LIST OF YOUR ISSUES and bring it with you for reference so you don't forget anything. The doctor will want to know WHAT the problem is, WHEN it began, and WHAT aggrevates or relieves it. (i.e. does it get worse in the evening when she's tired or is it the same throughout the day).

Don't be suprised if the pediatrician recommends that DD be evaluated by a specialist MD (like a gastroenterologist or neurologist), or a speech therapist (for a dysphagia [difficulty swallowing] evaluation). That would be routine given your DDs symptoms. Don't worry about tests. Tests don't necessarily mean the doctor thinks there is something very wrong, they only serve to give the doctor more information so he can plan her treatment.

Good Luck, and let us know how things turned out!

Kathy

 

[SueM in MN]

I totally agree with what has been written.

A year ago we went to WDW with my niece and her 3.5 yr old DD. She had some of the same issues as your DD (in fact, almost all of them). My niece sais she frequently gagged (or said she was going to throw up) on some food. She would only eat a particular brand of mac & cheese, didn't like anything with textures, strong smells or either really cold or hot. Eating took her forever and she preferred to wait until we got back to our resort to eat something familiar (we were staying in a 2 bedroom at OKW). Luckily, we also ate breakfast before we left. One of the things she had for the very first time in her life at WDW was ice cream.

My niece had her checked out and the little gilr was very sensory defensive. She worked with an OT to de-sensitize the little girl and after 9 months of "work", she is much better.

 

[Stacey2grls]

I know what you are going through . My DD who just turned 6, has had this problem since the age of 2. She would gag constantly around certain foods, or smells. She has refused to eat breakfast since she was 2, (her stomach was always queasy in the morning). Until yesterday morning for the first time in almost 4 years she had a piece of toast for breakfast! I can say that it gets better, but like the above poster wrote, write down anything important that you think the pediatrician needs to know. I also think it might be a good idea to take your daughter to a Pediatric Neurologist or Developmental Pediatrican. I am not trying to scare you, or be negative, but, these doctors are experts, and they might calm your fears and explain the situation better than a regular pediatrican. Best of luck to you and your daughter.

 

[hookedup]

I know what you are going through. I does sound like a possible sensory issue. I have a darling nearly 6 yr old ds with some serious sensory issues.
You may find that as you start to educate yourself more about sensory stuff you will notice more things about your dd that connect more dots for you. It's also true that some sensory issues show up more as regular developmental milestones are approached or missed.

It can be hard to approach this with a pediatrician. Depending on how what sort of relationship you have and the MD's approach to sensory processing issues. As others mentioned you may be referred to an OT or neurologist for further evals or tests. I was really worried when my son had to have an MRI but it was to rule out other issues and frankly once it was all said and done I was happy that we had done it. The one thing you don't want to hear is the "wait and see" from your ped. if that is the response you get I suggest getting a second opinion. If you child has sensory issues the sooner you help her the better she will adjust.

I highly (and I mean highly) recommend the books "The Out of Sync Child" by Carol Stock Kranowitz and the book "Raising a Sensory Smart Child" by Lindsey Biel. I also recommend the book "Quirky Kids" by Perri Klass MD. All of these books give some good advice about talking to your doctor, finding the right doctor and listening to your gut.

Good luck and please know you are not alone in your worries!

 

[Forevryoung]

I am an adult with tactile sensory issues (I'll eat it even if I can't touch it... thats what forks are for ) so I cant help you with the food part of it but I can tell you that I just keep going despite my sensory issues. I avoid things that are going to cause me anxiety as best I can and deal with stuff as it comes up. I haven't always been this way and it's taken me a long time to handle things "maturely" of course but if it IS purely a sensory thing, it will be ok.

Everyone's reaction is different but if you need anything, feel free to ask and Good Luck

 

[JoBird]

Thank you, each of you, for your words of encouragement. I am almost at the end of my rope with her not finding anything to eat, me always trying to fix things for her, and her not eating. It gets very frustating, as you all know. The hardest thing is not understanding what she is actually going through.
She doesn't show any other developmental delays that I can tell...she runs, skips, hops, jumps, knows letters, numbers...is in preschool and is doing good. I asked the teacher if there was anything that stood out to her and she said no.
She is a cautious child and is wary of everything, also very shy around strangers.
I will get the books you suggested, HOOKEDUP, and I really appreciate any more fedback any of you can give. Thanks and have a great day!

 

[hookedup]

I sent you a PM. Start with the "Out of Sync Child" I can't say enough about this book.

 

[Figment1964]

Start with the "Out of Sync Child" I can't say enough about this book.

I agree 100%!!! I have a ds, 12.5, with multiple issues and among them is Sensory Integration Dysfunction. The Out of Sync Child was so incredibly eye opening and helpful for us when our son was first diagnosed. I recommended it to our school counselor just this week for her own son having sensory issues.

Hang in there!

 

[Mish]

My DS who is now almost 8 had the same problem I knew from when he was 8 months old that there was a problem when I would give him things to eat and he would gag and throw it up. I kept tilling his pediatrician and she said to force him. He ate stage 1 & 2 baby food until he was 2. He couldnt eat anything. After much pressure from me she finally said to wait till he was 15 months to call early intervention. I said no way and call myself at a year and started to ball rolling. He had a hyper active gag reflex and need a oral motor skill specialist to help him. He still only likes to eat soft things. He does now eat hamburgers and chicken nugets but still sometimes chokes. He tends to overfill his mouth with food which our OT says is part of his sensory issues. I would definatelly have her evalulted. They did a barium swallow test on my son. It was amazing he drank and ate the pureed food and as soon as they did the test with piece of food you saw it being pushed back up as soon as it hit the back of his throat.

 

[JoBird]

Hi everyone that responded! I have been on an emotional roller coaster today, and I am afraid it's only the beginning.
I went to Barnes and Noble to get the book you all suggested, The Out of Sync Child, and they were out. I will try to order it on-line or go to another bookstore this weekend.. However, I was able to get some info out of a couple of books there and I just stood in the store with tears streaming down my face. It seems that she does indeed have a sensory issue, namely auditory, oral and olfactory defensive. I came home and called three different OT's. Her Ped. wasn't in so I'm waiting to hear from him tomorrow. The OT nurse is trying to schedule DD for an evaluation as soon as possible. Now my question is this..how can they help a child that is so very "head strong"?
I say that she is headstrong because I don't know what else to call it?!? I know now that it is something other than that, but honestly, I am just skeptical...
Thanks for all the kind words so far. I am going to need guidance from others who have been through this before, and will hopefully be able to return the favor one day. Thanks again... I'll post again when I hear something...

 

[BlondeAlligator]

JoBird,

I know what you are going through. I found out 4 months ago that my DD is Autistic. I knew something was wrong with her...she just wasn't developing normally. Since her evaluation she has started going to a special ed. early childhood school 5x a week, and has speech therapy 1x a week. She is even riding the bus to school! She is making great strides! I, too, wondered how anyone would get through to my VERY stubborn little girl, but the people who work with these very special kids are professionals & sooo good at what they do. Find the best team you can, put your trust in them, and love & support your child like there's no tomorrow. You'll be amazed at what will happen! I am learning not to underestimate my DD because she is constantly surprising me with how much she can & will do.

Check your school district, as well. I live in Illinois & we have excellent early childhood programs that can help kids with all kinds of issues, sensory included. Best of all, her schooling is at no cost to us (her speech therapy is private, though. We got it to give her more one-on-one time than the school can give her). I know not all states have these types of programs, though, but it's worth a call.

 

[JoBird]

JoBird,

I know what you are going through. I found out 4 months ago that my DD is Autistic. I knew something was wrong with her...she just wasn't developing normally. Since her evaluation she has started going to a special ed. early childhood school 5x a week, and has speech therapy 1x a week. She is even riding the bus to school! She is making great strides! I, too, wondered how anyone would get through to my VERY stubborn little girl, but the people who work with these very special kids are professionals & sooo good at what they do. Find the best team you can, put your trust in them, and love & support your child like there's no tomorrow. You'll be amazed at what will happen! I am learning not to underestimate my DD because she is constantly surprising me with how much she can & will do.

Check your school district, as well. I live in Illinois & we have excellent early childhood programs that can help kids with all kinds of issues, sensory included. Best of all, her schooling is at no cost to us (her speech therapy is private, though. We got it to give her more one-on-one time than the school can give her). I know not all states have these types of programs, though, but it's worth a call.

Thanks, Blondealligator, for your support. I am amazed at your strength. How old is your DD? Thanks for the idea of calling the school system. I have older children that are in school, so maybe I will call the counselor tomorrow. to you and your precious daughter.

 

[hookedup]

First of all I want to say that you deserve a big hug!
Remember your daughter is the same child you love dearly and have loved since she was born.
I get most of my books from Amazon or Barnes and Noble or Borders. I got my copy of the Out of Sync Child at B&N (but I know they have it at Amazon) the Out of Sync Child Has Fun is also excellent with a lot of great ideas.

Once you get an official diagnosis you can get your local school invovled - I don't know where you live but my local school has a wonderful preschool program for kids with special needs and I wish I had known about it for my ds years ago! You should contact your district and ask them if you have to have a referral from your pediatrician or if they can do the assesments for you.

But most of all please remember that you are starting early and can do A LOT to help your daughter. It will amaze you - and I mean amaze you - what things will make a huge difference in her behavior and help her adjust to her sensory dysfunction.

First get yourself educated on what sensory dysfunction is and then you can understand her needs better. I have only been dealing with this for 8 months and in that short time we have made some huge strides.

There are also some support groups you can join such as: http://www.spdnetwork.org/parentconnection/index.html

and a wonderful educational group: http://www.sensoryresources.com

Big hugs to you!

 

[eeyore45]

I want to come in and offer and support.

I think all of us have experienced that moment of "shock" when we get the diagnosis, or read and the realization is there, our child is "different" - the shock wears off, and you will get your mommy superhuman suit on, and you do everything you can for your child!

The post you made that gave me the biggest goosebumps was, you dont force your dd to eat, or dont force negative food issues - that is so very hard to do, there are so many well meaning people in our lives that try to tell us it is the 'mom's' fault if a child is a "picky" eater!!

I still have the image of when my mom pulled my hair till I screamed and shoved food down my throat and screamed "dont you dare throw up" (I dont know how old I was, maybe a 3rd grader?) and yes, after she excused me fom the table, I went to the bathoom and threw up and cried... I vowed at that time NEVER to make food an issue with my kids...

and you didnt!!



You are a great mom!!

 

[SueM in MN]

Once you get an official diagnosis you can get your local school invovled - I don't know where you live but my local school has a wonderful preschool program for kids with special needs and I wish I had known about it for my ds years ago! You should contact your district and ask them if you have to have a referral from your pediatrician or if they can do the assesments for you.

All states have programs for children with special needs.
Once they have turned 3, it is thru the school system (that is by Federal Law). For children under 3, it may be thru a different program (but, still required by Federal Law - in some areas, it's part of Head Start).
Depending on where you live, some schools have birth to 3 programs that cover children until they are 3 years old (so, you would contact the school for any child).
Referalls don't have to be made by doctors; you can call and refer your own child (and there is no charge for evaluation or service). You don't need a diagnosis to get an evaulation/assessment - that is part of what the school districts are required to do (in states where I have worked in Public Health, it was called "Childfind").
For actually getting Early Childhood services (like being in special preschool classes in the schools), you don't necessarily have to have a diagnosis, but do need to meet certain criteria (which is usually being behind of the age level in certain skill areas by a specified amount).

Since your child is over 3, you would fall under that program - if your school district has a website, look for Early Childhood or contact the distrcit and say you have a child that you want eveluated for that program (for people with younger children, contact your local Public Health Department - they are usually an intake point for referrals to the program).

This website has a lot of information that should be helpful:
www.pacer.org
The PACER Center is based in Minnesota, but is a national resource. Early Childhood programs are very old; Wisconsin and Minnesota were some of the pioneers in these types of programs (they actually started in Wisconsin in the early 1970s), but programs are available all over.

And, finally, I was a school nurse and a Public Health Nurse (in a past lifetime - ha ha). Anyway, a lot of kids who are in the Early Childhood programs do so well that by the time they reach 1 or 2nd grade, they don't require any more assistance. Somme kids will continue to have challenges, but the early help you get now will pay off later.

First of all I want to say that you deserve a big hug!
Remember your daughter is the same child you love dearly and have loved since she was born.

That's a very good thing to remember. One of the things I was thankful for was that my child who is disabled was not "identified" at birth. I got a chance to know my child as a child, not a child with disabilities.

 

[JoBird]

eeyore45 and hookedup,
Thank you so much...I am really struggling at this point, and tearful at every second. I didn't sleep well last night, but I am okay! I know this is going to be a struggle, but once I know exactly what I'm dealing with, I'll feel tons better.
I have a question... can a child with sensory defensiveness problems ever "outgrow" them with help, or is this something that no matter how much help they are given, they will struggle with it the rest of their lives?
((hugs)) to all of you. You are fast becoming dear to my heart. Thank you.
_____________________
Jodi

 

[belle&beast]

I am a speech pathologist and I work through our school system in the preschool. I have also worked with early intervention, so I have dealt a lot with feeding and oral sensory issues. Please call your public school system ASAP to request an evaluation. We are evaluating kids now until the last days of school, but then we don't start again until August. I'm not sure how your system works, but that is how it is here.

I saw you asked about outgrowing the sensory issues and it has been my experience that with intervention, kids are able to overcome and manage their issues very well. The more I learn about sensory integration, I realize that I was a child and now am an adult with sensory issues of my own. I hate gritty things even to touch- I have learned to tolerate the sand because I love the beach. I do not eat anything slimy or mushy and some of the therapeutic interventions in our classrooms really gross me out! I was a kid that threw up anything I didn't like. Luckily my parents were patient, and I was not punished, I think my mom knew it was not voluntary. So without any intervention- I am 32, so sensory issues were not really understood- I am doing fine aside from those few things. I now have 2 children with slight sensory issues, not oral, but other things irritate them.

I saw that you are looking for The Out Of Sync Child and I think that is a wonderful resource for any parent, because we will all have something to deal with at one time or another. I can tell you are concerned and will do all that you possibly can to help her. If you want to pm me with specific questions, I will do my best to help.

 

[KristineDaphne]

I know that it is overwhelming, but it does get better. My older daughter (now 7) ate bread, peanut butter (no jelly), pizza and fish only for years. It is very frustrating. She was also hyper sensitive to loud noise, bright lights, and easily overwhelmed, on the other hand, when things were "right" she was the most pleasant child in the world. My younger, has more severe sensory issues (she is a sensory seeker with limited awareness of pain) - it does get better with age and maturity. We have an OT for our younger and she is making great strides. I found the most important thing for my older was not to force anything and not to take it personally. They do survive - and if she wants to eat just 6 foods, then 6 foods it is. Once you understand the issues, it is less frustrating and easier to deal with. My 7 year old has outgrown some (not all) of her food issues, and we work around the others. It does get better.
Best of luck -

 

[BlondeAlligator]

Thanks, Blondealligator, for your support. I am amazed at your strength. How old is your DD? Thanks for the idea of calling the school system. I have older children that are in school, so maybe I will call the counselor tomorrow. to you and your precious daughter.

My DD is 3; she'll be 4 this July. Her class is a Pre-K special ed. class (Early Childhood) made up of other kids her age that have the same IEP goals. We did not need a diagnosis from her Dr. before we had her evaluated. The kids all work on speech, OT, social & sensory issues in a very fun classroom setting. They even get to participate in Field Days this month! Good idea to call the counselor at your school...he/she should be able to point you in the right direction. Whatever team you put together, rememeber that you are not only an important part of that team, but you should be the team leader! You know your child better than anyone, and your input is very important.

Feel free to PM me if you want to for advice or just someone to listen. I sometimes feel alone in this journey, but I have found a lot of support here on the DIS. I'd love to pay it forward...

My thoughts are with you,

Allison