Eating

For the past few weeks we've noticed that Jayden has been eating more. Usually he is a VERY picky eater. Just last month his diet consisted of only hot dog weiners and fries. If I placed anything else in front of him he had a HUGE fit. This had been going on for over a year and Drs kept saying it was a phase and to keep offering him new items on his plate and eventually he will eat it. Well it was far too stressful for him and far too wasteful for me, so I served him what I knew he wanted. I had a feeling that he would let us know when he's ready to try new things. Ironically, he's decided to try new things once his prevacid dosage was increased and his new GI diagnosed him with celiac and we knew then that we had to keep ALL traces of gluten out of his tummy. Maybe now his stomach is finally getting the chance to heal after 2 yrs of pain. Recently he's started showing interest in what we were eating on our plate. It's like he was starting from the beginning, you know when your infant starts to show interest in the food on your plate and you know they are ready for solids. My poor baby was afraid of food for so long and finally he was ready to give it a try. He would examine our plate and then say "Open" and hold his mouth open like a baby bird. I would offer him a bite and either he would eat it and ask for more, or he'd put it in his mouth, examine it with his tongue and then spit it out. But we still celebrated for him for at least allowing it in his mouth, which is a huge step for Jayden. 5 weeks ago when we got the diagnosis, I started to pay more attention to the meals I cook at home and the foods I buy to keep in the house, just in case he decided to start eating what we eat. Going on a gluten free diet is really not as hard as people think. Of course you will greatly miss regular bread and baked foods using regular flour b/c let's face it, gluten free flour just does not compare! A gluten free diet also eliminates fried foods (unless you use a GF alternative) and any and everything containing wheat. However, meats are okay as long as they aren't injected with broth. Rice, potatoes, beans, fresh veggies and fruit can also be eaten. So when you think about it, there are several option available on the GF diet, as long as they are prepared safely. But it's hard to go on the diet if you are a picky eater like Jayden is. But I continued to read labels and use GF ingredients when I cook just in case. Well I have big news...Jayden has been eating the same things we eat for dinner for almost 2 weeks now!! Of course there are nights when he would rather not eat, but I can sit a plate in front of him and he will not scream! Praise God. He is making some positive strides. On the 4th we had a family BBQ and usually I worry about him going to cookouts b/c usually there is nothing he can (or will) eat. So I packed him some GF snacks and GF beans. I didn't have to open his beans though b/c Jayden ate 3 hot dogs (they were GF, expensive but taste great!), a piece of chicken, and some of my rib. I was so proud of him! Also, after his appt on MOnday, we went out to eat at Outback with my parents. If you have anyone in your family with Celiac Disease, Outback has an AWESOME gluten free menu. We ordered Jayden the grilled chicken on the barbie with sweet potatoe fries and he ate it all!

I am so thankful for this. Now that he is eating better, it will make it so much easier to prepare meals for him and hopefully by the time he has to start preschool in January, they will be offering a gluten free option so that he won't feel set apart from his classmates.

PDD-NOS

So as you all may know, Jayden's social evaluation took place on yesterday morning. He actually had two appts scheduled, the first was for genetic testing. That appt was RIDICULOUS! When the Dr walked in, Jayden was already in a really foul mood. He jumped on my lap and started screaming when the Dr tried talking to me, so I had to yell over Jayden's screaming. Then when I asked him to be quiet for me he had one of his fits. He was squirming on my lap and just very irritable. Then he started throwing toys around the room. The Dr then starts asking developmental questions. He knew that we were referred to him b/c the Developmental pediatrician suspected autism. So he asks, "How is his eye contact." I tell him, "Usually it's okay, but he won't make eye contact much in social situations." He looks Jayden in the eyes and then says "He's looking at me. His eye contact is just fine." Then he asks, "Does he have any repetitive behaviors like rocking or spinning." I had a hard time not walking out of the room at this point b/c right when he asked this question, Jayden was hanging off of my lap with his head and arms hanging towards the floor, rocking up and down and whining. I just looked at the Dr like he was crazy. WTH?!?! So then he says, "I really don't believe that he has autism. His behaviors seem typical of a 2 yr old boy." He seriously said this within the first 10 minutes of the appt. He had never met Jayden before. He went on about how boys are slower to develop than girls in all areas of development. I was very quiet for most of this ridiculous appt b/c I was afraid of what would come out of my mouth. So my husband did most of the talking. He told the Dr about how Jayden screams and does not do well in a room with children his age or younger. The Dr said "Well at his age, he shouldn't be expected to play with other kids. A this age they parallel play." I had to pipe in. I said "We are aware of that, but in Jayden's case, it is DANGEROUS to bring him in a room with smaller kids b/c he literally attacks them." So then he asks if we have considered childcare. At that point, I checked out of the appt b/c his goal was to make us feel like we were just being paranoid, over bearing parents. That point was proven when he asked us if we had friends with small kids. When we said yes he told us "Ask them if they think that the way Jayden acts is out of the ordinary." OMG. He went on to read articles from the internet about Jayden's celiac disease diagnosis, to recommend sedatives when we take him in public, and to recommend that we work on our patience. WOW. He decided that genetic testing was not necessary b/c Jayden appears fine. So that appt was worthless.

So we had an hour to kill before the social eval so we went to grab some lunch and came back to check in for his evaluation. He had a huge tantrum in the waiting room which included him getting angry and throwing his snack bar on the floor so I had to throw the snack bar away b/c I won't let him eat off of a hospital floor. Well the fit was huge. He calmed down and a few minutes later we were called back to our room. We waited for about 10 minutes and the Dr came in with an assistant and didn't waste any time. She immediately instructed Jayden to sit down and at first he ignored her but as soon as she opened her cart full of tricks, he sat down like a big boy. The evaluation was full of surprises, both good and bad. First she pulled out a shapes puzzle with squares and circles. Jayden put the puzzle together in less than a minute. He knew exactly where each piece went immediately. We were so impressed. Next she pulled out a page with a picture of different color crayons, then she handed him some colored shapes and told him to match the colors. I can't remember, but I do believe she showed him one example of how to do it. Then he matched each color with no problem, but struggled a bit with green and actually said "Oh no" when he realized that he was stuck. He finally got it though, and with no tantrum involved. Next she switched to ducks of different sizes and colors. She tried to get him in groups of colors, then groups of sizes. He only wanted to line them up, and at one point he put them all in "time out" facing a book! LOL! The dr was switching the activities so quickly and I was pleasantly surprised that he transitioned so well. But the Dr said that it may have had to do with how quickly she made the changes and that he immediately had something new and interesting in front of him before he could get upset. So things starts to get difficult for him soon. She showed him a page with a main picture, like a tricycle, and then three other pictures below it and asked him to find the other tricycle. He just ignored her. She tried three other times but he just ignored her. She called his name several times and he never replied. The same thing happened when she showed him a picture book and asked him to show her where the dog was. He ignored her. She even paused to look at his chart to be sure she was pronouncing his name correctly b/c he was not responding. But then when she showed him the same book and she pointed to the dog and said "Jayden what is this?" He immediately said "dog". And she continued pointing to the pictures and he would immediately identify them. So we realized yesterday that he does not point which is not good :( We didn't know that he didn't point. We never noticed. So that first part was to test his cognitive development and he did have some obvious delays there. Next we moved to a bigger room filled with toys, and this part would test his social play skills. He was so happy in there with all of the toys and it was so funny to see him switch from one toy to the next within just a few minutes. The Dr said it was good that he wasn't obsessed with any particular toy but that he could benefit from playing with one toy at a time for a bit longer than he does. Next came the moment that the Dr said really mattered, social play. She pulled out toys that required him to play with others. First she used a bubble blower. He was interested in the bubble blower, but he wanted to do them himself. When he saw that she would be the one blowing them and that we all were excited to see the bubbles, he immediately lost interest. He also refused to make eye contact with her. Next she did this thing with a balloon where she would blow air in a balloon and make him say "1,2,3, GO!" and let it go. He loved it, but she said that he still wouldn't make eye contact with her when waiting for the ballon to go. Instead he stared at the balloon instead of looking at her for her facial expression to prepare to release the balloon. Also, when he gave her the ballon back and waited for more he wouldn't look at her. WOW. So what about the perfect eye contact that the first Dr told us he had just this morning? I felt bad b/c I knew that the first Dr gave my husband false hope. I already knew that his eye contact was bad in public, but mainly when he is having a fit. I didn't realize that he refused to make eye contact while interacting with people. Next she tried to get him to feed a baby doll and a teddy bear. He refused to look at the doll or the bear. Then they gave the doll a birthday party complete with birthday cake. He put cake on the doll's plate but wouldn't help her to eat it. Finally the Dr came and sat with us while Jayden continued to play with the toys. As she explained to us her findings, Jayden pulled out the toys that he would have had to play with along with the Dr. His eye contact returned. He even grabbed the balloon and brought it to the Dr and looked her right in the eye and said "more". She told us that it seems like he is extremely nervous when he isn't in control and that may explain his lack of eye contact. It has so much to do with his social anxiety. So he scored very low in language and communication. The lowest score possible. He also scored low in cognitive development and social skills. The Dr was hesistant to score the evaluation mainly b/c she could see that most of Jayden's issues arise in social situations (with the exception of his speech delay), but that the scoresheet does not allow for "extra credit" points. From what she witnessed during the evaluation, the social score would place him on the autism spectrum, but then what she saw after the evaluation, would not. So she said what I had been thinking all along "Jayden is a very complexed case!" She expressed, that we will never know how much of this was caused by the untreated celiac disease but she believes that if we can help him with his extreme social anxiety, he will get better with the social aspect of things. So in her professional opinion, he does not appear to be on the autism spectrum, yet he does display some of the classic autism symptoms. So she diagnosed him with PDD-NOS, Pervasive Developmental Disorder. Again, she stressed that he needs to be in therapy b/c he can beat this. She suggests speech therapy, occupational therapy, behavioral therapy, ABA therapy, and a child psychologist to help with the social anxiety. All of which I will be fighting for. The government is cutting back on so much lately b/c of the recession. Early Intervention told me that they would be picking Jayden back up this month but that he will probably only be seen 2 times a month. That's not fair. It's just not enough for him. We need to help get him prepared for preschool b/c once he turns three the school system has to take over his therapy. How will he handle preschool if he has not had help with his social anxiety? Those that are making these decisions to cut back on the services that special needs children need to have a better life, obviously have not had their lives touched by a child with special needs. It's senseless. On a positive note though, b/c we finally have a diagnosis, we can finally get the ball rolling on his disability insurance which should help cover the cost of some of the therapy services that he needs.

Last night my cousin told me that Jayden is so lucky to have us as his parents. I know she means well, but I disagree. I think that WE are the lucky ones. Jayden has taught us to fight, to have patience, and to have faith no matter how rough life gets. At only 2.5 yrs old, he has taught us some very valuable life lessons am I will be forever grateful.

10 on Tuesday

1. I am sick and tired of the scheduling dept with the real estate agency we have our home listed through. The schedulings are all screwed up and the realtors cancel without notice. So that means that we drive around aimlessly for no apparent reason. Not to mention how stressed I get trying to clean a house with a 2 yr old who tears it up in seconds.
2. Because of number 1, we are looking for a new real estate agency. It's nothing against our realtor b/c she's wonderful, but the issues we are having with showings is insane.
3. Jayden has been putting two words together very nicely lately. He says "Hi Mommy (Daddy, Nana, Paw Paw)", "Come in", "Where Mommy?", "Let's go." and he surprises us everyday with new things.
4. Today the fed ex man delivered a package and rang the doorbell to let me know it was there and he left. Jayden ran to the door and said "COME IN!!" and then opened the door.
5. Thank God for our alarm b/c otherwise I wouldn't have known that he could open the door. We must now use the top lock at all times.
6. Only 4 more weeks until Disney World!!
7. Jayden's social evaluation is scheduled for Monday. Please pray that all goes well and he gets the help that he needs.
8. Early Intervention is supposed to continue his therapy this week. We shall see about that but I'm not holding my breath.
9. My aunt is going to bake a mock gluten free birthday cake for Jayden this weekend. Angel foods cake with an almond glaze. Our hope is that the cake is good enough that we can serve it to everyone at the party and not make him have to be singled out with a different cake.
10. It is HOT!!!

Angry...

There were several things that happened today that made me angry:(1) The fact that my dogs' vet of 4 yrs (FOUR YEARS!!!) cares more about making a daily deposit than seeing and treating my dogs infected neck. We found a new vet today. (2) The fact that I am STILL fighting with the crappy state of MS to get Jayden back in Early Intervention. A complaint was filed today with the Dept of Health b/c EI is not returning calls. (3) The fact that we were given an hour notice for a realtor to show our house this evening at 4:15 and I ran around like a chicken with it's head cut off to mop the floor and make sure everything was PERFECT for a showing, then grabbed my napping child from his bed and my 2 dogs (1 with a cone head for now!) and my loud mouth bird and drove them around in 100 DEGREE weather for an hour, only to call the agency at 5:30 and find out that the showing was cancelled. (4) It was 100 degrees today.

But there was one thing that stood out today. I was surprised that it made me so angry. We got his blood test results back today from the celiac panel. Positive. I know, DUH, right?? Well yeah, in a way. One thing I have to admit is that I do know that children with PDD often have GI issues and have an intolerance to wheat. So the fact that his pictures from the scope showed damage left me wondering if it was truly CD, or just the "gut" issue common in ASD. Either way, it would be a lifelong dietary change for Jayden, but subconciously, I guess I didn't completely accept the diagnosis last week. Well the blood test confirmed it today. And he was born with celiac disease. That's what makes me angry!! He's had GI issues since birth and I've been bringing him to see the GI dr since he was 5 months old. The GI docs at UMC made me feel like I was just a paranoid, first time mom. "Oh, he's just a happy spitter." "All babies go through this, he will outgrow it." "It's probably HIS normal to only have a BM 1-2 times a week." "He doesn't look like he's in pain." And once the rude Dr told Jayden "Okay buddy, I have to go tend to the TRULY sick kids!" So b/c he didn't believe that my baby was truly sick enough, he ignored what I was saying and did not do even the basic tests to rule out my suspicions. So I followed his WRONG advice for 2 yrs, further tearing up my baby's stomach. When Jayden stopped eating... "Oh all toddlers go through the picky eating stage." But I stressed that it was more than picky eating. Again, pushed aside as a paranoid, first time mom. There was a period of time where Jayden wouldn't eat anything other than bread. It was like he craved bread ALL.THE.TIME. Yeah, that screamed celiac.

"Studies have found that opiates found in gluten and casein are released when they are improperly digested. When the GI tract is not in good condition, such as from celiac disease, these opiates get released into the bloodstream. The opiates not only impair brain function but also cause craving for foods containing gluten and casein, which increase the problem."~taken from www.celiaccentral.org

Even to this day, he does not want GF bread, but he will literally climb the table and go into rage to get to regular bread. Even after the ridiculous Drs did the scope, they still couldn't tell that my child had celiac disease!! Even after I told them I suspected it several times!! I JUST DON'T GET IT! Sometimes Drs have to put the book aside and listen to the parents. Parents are with their children 24/7. Drs only see these kids a few times a month (or year) and only a few minutes at a time. It only makes sense that the parents are your best source for information, SO LISTEN TO THEM! I am so angry that I want to write a letter to the so called Drs at UMC who denied my baby the testing and procedures needed to properly diagnose him sooner. I want them to know that by ignoring my concerns they left my child undiagnosed for over 2 yrs and it is b/c of them that he has been suffering for so long. That we have been suffering for so long. It makes my blood boil. But what hurts the most is that there is research that proves that children with untreated celiac disease usually end up with a diagnosis of autism. Wow. Now I won't know if that is the case, unless Jayden's genetic testing for autism come back positive. Then I know that he was possibly born with autism. But for now I'm just so angry. I cannot wait to get out of this AWFUL state. And since the real estate agency we are currently listed through is making that hard, then we will be looking for a new agency this week as well!! UGH. I just keep reminding myself that God chose me to handle this situation for a reason, and I'm going to get through this. I know I will.

Learning colors using ABA therapy

The goal here was to have him to sit and follow directions and receive positive reinforcement in the form of his favorite snack. My job is to help direct him (pointing to what I want from him when he's frustrated) and to ignore wrong answers and negative behaviors. This video shows the second attempt. The first attempt was disastrous for the both of us but towards the end we both got better so I wanted to get him on tape. Notice how he actually could identify some colors towards the end. I promise you he could not do this before the session!! He's so smart!

Celiac Disease

My poor, poor boy just seems like he cannot catch a break!! Honestly though, I've been suspecting this since late last year. I even started him on the Gluten Free diet myself in January, only I was never as strict as I could have been with it. I mentioned Celiac Disease to his GI dr at UMC, whom I would like to call Dr. WhoCaresWhatYouThink (Dr.Wcwyt), she told me that she doubts if it's Celiac b/c it doesn't present itself with chronic constipation, only with diarrhea. Mind you, Jayden had so many other symptoms including irritability, stomach pains, foul smelling stools, and gas. I even mentioned to her that he had been on a gluten free diet for about 2 weeks prior to the appt and that I noticed a significant change in the frequency and the smell of his BMs. She still didn't think that we were dealing with Celiac, but wanted to do a GI scope to rule out a stomach infection. So he had the scope done in February. She immediately told us about the stomach ulcers and said that she would call us with the results to the biopsy to see if he has an infection. She never called. I had to call the nurse 2 weeks later and she put me on hold and said, "The biopsy came back fine and he just has duodenitis (inflammation of the small intestine), so just continue with the prevacid 15 mg and follow up in 6 weeks." That was the point where I decided we needed a new GI and a 2nd opinion b/c I need to know WHY my 2 yr old has ulcers and inflammation in his small intestine.

So now we are seeing Dr. Awesome over at Baptist GI Associates. After the appt in April, she wanted us to follow up with her once she was able to retrieve the records from Dr.Wcwyt and see if she can get enough info from the pictures and the notes from the procedure in Feb, hoping that he will not have to have another one done. Well we went in this morning and first she asked me about the stool softner. For Jayden 1 capful (the normal dosage) is WAY too much. It causes him to have diarrhea all day and all over. A half of the capful was not much better, explosive. So really all I could give him is like 1/4 of a capful and that loosened his bowel movements but he still only goes maybe 3 times a week. So she said that is telling her that he is not just constipated alone b/c if that was the case then the 1 capful would be what he needs. So his constipation is a symptom of an underlying condition and it won't be fixed without first fixing the underlying condition. Then she said "So the Drs at UMC told you that the only reason why they thought he doesn't have celiac is b/c of the constipation?" I told her yes, and she said "Oh he has celiac disease." She reviewed the pictures and the notes from the EGD and she said it would be senseless for her to put him under to do another EGD herself b/c everything that she looks for when trying to confirm a celiac diagnosis was right there in the pictures and the notes. She said that his small intestine was very inflamed and his villi are damaged. She said instead of them looking like straight fingers, they are shrinking and looking like little balls. She also told me other significant findings from the pictures and the notes and just cannot understand why there wasn't a concern by the other Drs at UMC. She ordered the celiac bloodwork for Jayden today but she said she won't be surprised if it comes back negative. It's usually not accurate in children his age, but it may show some antibodies due to the fact that he's been eating regular bread all this week and that seems to upset his stomach more than any other non GF food. However, she said that the EGD is basically the picture of a celiac GI system and he needs to be on a 100% completely gluten free diet starting today (He had his bloodwork done this morning).

100%. Wow. That's going to be hard. Have yall seen how cute my little boy is?? He has the most beautiful eyes and those long eyelashes!! And he knows how to use them to get what he wants...



Man, I feel sorry for MYSELF!!!

Perspective

Lately we've realized that certain things that are usually simple in the lives of parents with toddlers, aren't as simple in ours. Yet we fall into routine and rool with the punches. Take breakfast for instance...He can't just wake up and say I'm hungry let's eat. No, because he has to take his prevacid on an empty stomach and cannot eat or drink anything for 20 minutes. Since breakfast is the ONLY time he asks to eat it was rough at first trying to distract him, but now our routine is a knock on his bedroom door (he is always camped out right by the door with his pillow and blanket!), and he says "Ah-men!" which I assume means come in but my husband thinks it means open! lol. I open it, he grabs Wayne, and as he walks out of his room I stick the prevacid in his mouth. He sucks on it like a big boy and then we sit on the couch for 20 minutes. He doesn't even ask immediately to eat anymore b/c he knows the routine. Now breakfast starts and it doesn't get any easier. First off, he can't just have milk in a regular sippy. Instead he has to have rice milk. The rice milk has to be served slightly warm and in a soft spouted sippy (sensory stuff). Then I have to add infant rice cereal to it for added calories since he still isn't eating(still can't believe that Drs kept telling me this was a phase...). Then for breakfast he will eat some dry cereal, b/c he can't tolerate cereal and milk together, not unless you want it to come right back up! Breakfast is done, time for lunch. Lunch is always either a turkey dog or sweet potatoe fries. Nothing special there. But his juice, we can't just pour his some juice and say "here ya go". We have to measure his juice to be 8 oz and add stool softner to it. The stool softner is tasteless, but if it isn't mixed in well Jayden won't drink it so we have to mix it until it completely dissolves. So it takes us 5 minutes to make him juice, something that usually only takes a good 15 seconds! I won't even get into how we have to accomodate his food allergies on vacation!!