Slacking with food trials

Sam's last scope in March was clear which means he had no eosinophils in his esophagus from the last bunch of foods we had trialed;  turkey, rice flour and rice chips and strawberries.  Met with his GI doc, allergist and Nutritionist on 3/28.  Was probably the shortest appt. and we all agreed to trial corn, beans, 1 more fruit and beef next.

Well it's the beginning of May and we haven't done much. He ate some beans with white rice one night but then vomited, maybe texture of the rice?    Then he vomited 4 times during 1 week and we weren't sure what was going on.   Maybe seaonsal allergies or a virus?  It's always a guessing game.  I want to make some corn bread, muffins and pancakes over this next week unless we try hamburger with him.  Will see. The last few days he's been very hungry and wanting more formula.  He's had 4-8 ozs. more a day and has wanted more food too.  Maybe a growth spurt or he needs more food.  I know I shouldn't worry but I do worry a little bit when he drinks more formula consistently.  I'd rather him eat more food and a variety so I really need to work on that.

School-   Sam started full day preschool on March 30th.  He loves "stool" as he says!   He's also just started saying "more" besides just signing it.  It's so cute the way he says it!   I have to keep reminding him though every time he signs it to say "more".   He's learned so much from school already. He comes home and takes off his jacket and wants to hang it up like they do at school.  He sits down and tries to take his shoes off and will put them back on but on the wrong feet.  He is using a fork now most of the time.  I was working on that with him but he just started doing it at home this week.  Every day when we get home from school I go over the paper that is sent home with him to see what he did at school.  Obviously he can't tell me what he did so I love that they have this detailed sheet where they circle things or write in what they do.   I ask him questions about his day and he will either shake his head and smiles yes or say "noooo" even though I know he did that certain thing.   I think he's being silly sometimes with all the "no's" but other times I'm not so sure.   Anyways he goes to school M-F from 9-2 and gets all of his therapy services during those times.  I'm thinking he may need additional speech and ABA therapy outside of school.  We will be meeting with the ABA therapist again on 5/19 to go over how he is doing in school and what else he needs at home or in the community.   We've had some tough days this past week.  He's been communicating more with words and showing us what he wants but at the same time his "episodes" as I call them have gotten worse again with getting very upset and for a good 45 mins.  Again these aren't your regular 3 year old tantrums.  Don't even feel like getting into them right now but it's not fun.   I'm tired and warn out every night and that's still with him going to school for the 5 hours a day.   One day we'll get a nice vacation or a day off but for now I'm happy to still be home and here for him when he needs me!

We've been putting a lot of work into his EOS fundraiser on 5/19. It should be a great turnout and I can't wait!!

Thanks for reading and trying to keep up!

6th scope

Have ALOT to update but for now...Sam had his 6th scope on Monday, 3/7 at MGH Boston.   I have to say I was very impressed how Sam did before the scope.  I actually went in with Steve this time to the procedure room and helped with putting him to sleep.   It was tough but Steve said MUCH better than last time!   We laid him back first to put the mask on which he ended up pulling off at one point (strong bugger)!   Finally we all got quiet and I sang twinkle twinkle as he went out.   He slept for a WHILE afterwards and woke up looking around followed by getting very upset.  The nurse said this is actually very common with most kids until they are older and there's not much else we can do about it.  He almost pulled the IV out and we finally just strapped him into the stroller and booked it out of there!   Once we got the car moving he calmed down.  He vomited a few times after drinking his formula and juice but was fine afterwards and napped 2 hours.

LOVE LOVE LOVE his GI doc and love that he does the scope every single time!   We told him how he's hardly been eating so we shall see what the biopsies say.  Probably won't know til Friday the results.   I have a feeling they will be clear and this is just a phase he's going through with food.  We shall see!

Thanks for listening and for your continued support!

Will update another time about changes coming up with Sam turning 3 on March 29th!    He will be starting FULL day preschool through our town with services for speech, occupational therapy and ABA (applied behavioral analysis)!  yikes!!  He's not a baby anymore but will always be my baby!!  xo

Wow it's almost 4 months since I've updated!  Mama has been busy! 

EOS and food- Sam's scope in August came back clear for any eosinophils!  We got the go ahead to restart new foods again. He ate cucumber for a few days and it clearly gave him too much acid.  He woke up a few nights vomiting and we stopped that.  Bummer since he really loved them!!!  Started apples again and he's been doing well with those.  He's also now eating freeze dried strawberries, red grapes, cantaloupe, and cape cod potato chips along with banana and carrots which he was already eating.  He still only eats 2 x a day and small amounts.  We tried sweet potato fries with him a few days and he loved them but then he got a cold.  Need to try those again along with regular potatoes for fries, mashed or roasted.  Going to try turkey with him for this thanksgiving. He did love that so I'm hoping he still will and he doesn't have any reations!   Working on cutting back his formula- he's still on EO28 splash and usually drinks 28-32 ozs. a day.  We've had problems getting the splash approved again through insurance due to Sam's biopsies being clear, him gaining weight steadily (60th% now) and he's over 2.5 years old.  Harvard Pilgrim denied it several times.  We are now with Blue Cross Blue Shield of MA and I'm waiting on the approval from them.  Thankfully we had some great friends, the GI doc and Nutricia themselves help us with formula and we've gotten a good supply at no cost.  Each case cost $115 with no insurance and that's only 27 individual boxes which would last just over 6 days!  Craziness!  I need to check in with BCBS to see what the hold up is!!!

We finally got MassHealth Commonhealth supplemental insurance approved for Sam!  That is a huge relief!!  I originally applied for him back in April and kept getting denial letters.  Finally got a contact (from another EOS mom) and got some much needed help with the disability portion of MH.  We even got them to backdate the start of coverage day to April when it was finally approved in October!  Waiting on some reimbursements now for co-pays we've made to docs and the pharmacy!  Finally something good for us and we are very thankful!

ABA update- We changed ABA providers in September and are very happy with the 2 therapists.  He receives 10 hours a week from them.  They are a bit different than the last provider in that they don't do as much table work.  They are able to run trials with whatever he is doing and even if we go out into the community to get him used to going to different playspaces.  Next on my list is to visit a restaurant with him and the therapist. 

Daycare- He has been going to daycare 3 mornings a week since September and does well for the most part. He's come a long way from when he first started.  He tolerates the other kids being around him, sits for circle time, plays appropriately and even initiates some peer interaction. With the help of the ABA therapists we had the Providers start using PECS with Sam while he's there.  He really thrives on a routine and knowing what's going to happen next.  I think that's helped him and them out tremendously with less tantrums or frustrations.  Some mornings I have to literally "drag" him out of the house to go but then I come back to pick him up and he doesn't want to leave.  My goal for January is to try and get him to nap there but we shall see.

Speech- every day he has been saying new words, even little ones like "eye" and "toe" yesterday!!   He has been repeating words upon request a lot recently or at least attempts to.   His speech is still very delayed though and he hardly ever puts 2 words together besides "all done" or "go outside" for instance which he usually doesn't say either.  He had a re-eval done by early intevention at 30 mths and he tested at 16-18 mths.  It is hard at times hearing how behind he is to his peers and that we can't have even a small conversation with him.  But we are confident that he will catch up with the continued services he gets at home and hopefully at the integrated preschool he will start at his 3rd birthday on 3/29/11.   The 1st steps have begun for his evaluation which should take place between January and February.

Sam does continue to be a very bright, energetic and affectionate boy!!!   He is the biggest mush ever and loves hugs and kisses!   He loves being tickled, hiding under the blankets on the couch and playing with us, dancing, using his imagination to play with his stuffed animals (pretends his diapering them or cleaning them up), going shopping with his cart, bag and keys, loves coloring and playdough, puzzles, cars and trains and of course let's not forget he still LOVES watching Mickey Mouse Clubhouse and now Timmy Time!!!   All he ever says is "Ickey or T" for Timmy!  

As Thanksgiving approaches we are very thankful to have such a special child in our lives who makes us see what the important things are and makes us better people every day!  Love him more than anything!!!    

I can't believe tomorrow, 8/5 marks one year ago that Sam went under for his 1st Endoscopy which gave him the dx of EE!

On 8/16 he will have a baseline scope and biopsies to make sure all is clear before starting new trials. 1 year later and he still can only eat 3-4 foods. We still have such a LONG road ahead of us!   We haven't trialed any foods since March when we took a break to clear him up and switched both GI and Allergy docs.   Not sure what foods we are going to try first but I do know we are going to do it very slowly this time, no rushing and making sure he's done having reactions before starting another trial.   We have learned so much these past few months.

I would like to try cucumber and rice pasta with him again since he loved those so much.  We stopped them because he was still getting sick OFTEN but was scoping clean.  It could have been the reflux pain that was still making him sick.  That is well under control now with him on Nexium 2x a day, and zyrtec.   I think he only had 6-8 "painful episodes" in July compared to 12 the previous months.

ABA update- Sam continues to do very well with his ABA therapist.  It's been almost 4 mths now.  He masters each new "trial" she gives him either that day or within a few days.  We were going to add on 2 sessions in the afternoon but I think it would be too much for him and don't think he needs additional "table work".  I do think he needs a weekly Occupational therapy session and will talk with our coordinator from EI next week (she's on vaca now).   He still gets upset when going to places that he does not know and is only happy when he's in a swing.  I think weekly OT sessions will help this and give us further tools to use with him at home every day.  I have been giving him a quick sensory input before leaving the house for daycare now.  

Daycare- It's been 1 mth and Sam is doing MUCH better at daycare.  He went from having awful dropoffs with crying and vomiting 3 x to this week NO crying when I dopped him off and him getting excited upon arrival to the providers house.  He has gotten upset when his ABA therapist leaves at the end of her session but settles down after 15-20 mins.  I'm so proud of him and hope he continues to thrive and become more comfortable with being there.

Speech- he continues to say the same few words consistently- all done, no, dada, outside, T for tv, Ickey for Mickey, car, key, door.   He signs "more" and "want".  He calls me "Sacey" but is starting to say Mamamama so hopefully that will change soon.  Speech sessions have taken off slowly between sick cancellations we had and doc appts.  This week he has speech 2x and the same next week.  Hoping that will help him take off with what is on the tip of his tongue!!

I think that's it for now.  Thank you for keeping up with us.  This last year has been ROUGH, getting better but still challenging every day.  Having an EE and PDD child is a tough combo!   I'm so glad to have some great supportive Moms out there who know exactly what we are going through!  Love ya all!  

Long week of going into Boston this M, W and Th. for allergy skin patch test.  Monday he got 24 skin patch put on his back.  These are little tiny flat disc with food in them to test for a delayed allergic reaction.  They are taped onto the back and are taken off 48 hours later.  Today we met with Sam's Allergy doc who looked at his back again.   The skin patch results show "slight" reactions to chicken, oat and peanut! Those will be the last on the list of foods to trial when we start new foods again!  The chicken makes ALOT of sense as everytime we gave him chicken with rice pasta he would get sick and we kept thinking it was the rice pasta!

Will be setting up a date for a baseline scope in about 6 weeks- mid August.  If the scope and biopsies are clean we will began to introduce new foods again.  Will meet with docs and nutritionist to discuss after the scope.

I found a GREAT home daycare center for Sam where he will be starting 2 mornings a week soon with the plan of increasing to 2 full days.  One of my friend's daughters goes to the center as well so that may be helpful to Sam.  We have been doing weekly visits 2x to get him used to going there and hope to leave him for an hour in the next week to see how he does before leaving him for a morning!

Sam has been doing EXCELLENT with his ABA therapy sessions.  He's able to sit at the table and "work" for most of the session with short breaks in between and I'm able to stay in the other room or even upstairs to get some other things done.  yay!  His vocabulary is blossoming with the consistency of car, keys, outside (mostly), all done, oh no, uh oh, dada, kiki for mickey and probably a few others I'm forgetting. He says these words in the right context and associates objects correctly.  Ex:  while visiting the new daycare center- after playing there for a while he says "all done", walks over to the gate and says "car"!  yay!  I knew my child was smart!  lol!!  We are very proud of his hard work these last few mths and are excited to see him continue to grow and learn more!!! 

Thank you for checking in!

Had follow up visit at MGH today.

Plan: 1) continue on Nexium and watch for more improvement over next few weeks, 2) start zyrtec 5mg. a day (crush pill into powder and mix into drink), 3) scheduling patch test for food and environmental allergies (he had one 1 year ago for food only), 4) scope in August. If scope is clear and vomiting stops will start reintroducing foods again by Sept.  Again I have to say I'm very pleased with making the switch from Children's to MGH!!! We talked with other parents there today doing the same thing! These doctors really listen to what we say and do not want to rush anything! The GI doctor put his hands on Sam's face before leaving and said "love you"!   oh and Nutritioniist wants us to stop smarties and dum-dums. She's worried about his teeth from the acid, vomiting and sugar and hardly lets us brush his teeth! I've been worrying about this too and am going to make an appt. with a dentist soon who see special needs kids. We're also making an appt. with the Child Psycologist to talk without Sam and then with him there at a 2nd appt.  Feeling a bit better tonight about everything!

• Wednesday, June 9, 2010 1:17 PM, EDT

  This morning Sam had a follow-up appt. with the Neurologist who gave him the PDD dx.  After an initial upset about getting weighed and puking on mommy he did very well and was interacting with the doc!  Doc said he is making good progress, has great eye contact and in a few years may not be considered "on the spectrum" if he continues to get better with social interaction and various situations, etc.  I told him everything he's been doing in the last few weeks alone; imagination play with cars and trains, shopping with his food cart and bag, playing with his friends and our next door neighbors.  Obviously there are days that are still very difficult but he's definitely taking big steps ahead!!  Oh weight estimation after subtracting his weight from mine (I had to hold him to get him weighed) and minus his clothes plus sneakers (yeah real accurate weight) is around 28 lbs. which is about a 2 lb. gain in the last 3 mths.  Very good despite all the vomiting but he has been drinking 32-36 ozs. of EO28 splash a day and a few times has had 40 ozs.
  
  He has a follow-up appt. at MGH's Food Allergy clinic on Monday to see the GI, Allergist and Nutritionist again.  He's still been vomiting a few times a week.  I figured it out yesterday from the food log journal I update and he vomited 13 times in March, 12 in April, 8 in May and 4 in June already.  So we'll see what the good docs have to say.  I think he needs a 2nd medication or maybe increase the Nexium.  
  
  After his appt. this morning we stopped at a playground where he went on the swing 3 x, a jumpy car and was climbing on one of the play structures and going up and down the slide.  yay!
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• Sunday, May 30, 2010 7:06 PM, EDT

  Sam had his upper GI barium swallow done on Friday at MGH's Pediatric Radiology.  It was the WORST procedure by far to watch him go through and we are glad that is done with!!   Love our new GI doc! I can't say how happy we are that we changed docs a few mths ago! Paged the GI doc later on Friday to talk about the barium results.  He called back that night! He said refluxing was seen on the xrays due to the EE. We have an appt. in 2 weeks with him and the Allergist and are going to talk about adding a 2nd PPI (Proton Pump Inhibitor) since he is still vomiting and in pain several times a week.
  
  He is currently drinking about 40 ozs. of EO28 splash.  Stopped eating banana and will eat cucumber every few days.  But he vomited shortly after eating that the last few times.  Right now we're happy with him drinking more formula and getting sick less.
  
  Went to a cousins birthday party today and Sam had a very difficult time with all the people and the noise in the house.  I don't blame him at all but it feels like sometimes we can't even take him to gatherings between worrying about him getting his hands on food and him getting overwhelemed and upset.  It's much easier to stay home and not get everyone worked up.  I did enjoy talking to 2 of my cousins.  Learned that another cousins son is autistic.  Some of the things she was telling me about this 6 year old do remind me of Sam at times.   My other cousins son is allergic to dairy, shellfish and nuts.   He is 3 mths older than Sam and really wanted to play with Sam.  I felt bad for the boy that Sam wasn't interacting with him but hopefully that will change one day.
  
  I've been trying to remember to work with Sam on sensory input at home by doing squishes, bouncing on the ball, airplane rides, jumping and swinging.  I notice how much calmer he is when he gets this kind of input a few times every day.   I'm going to talk to our ABA therapist about what else we can do to make things easier on Sam when going to public venues, parties, outings, etc.  I really don't want to be stuck inside the whole summer and hope we can get a chance to do a few fun things as a family. 
  
  We have weekly speech therapy sessions starting on June 16th through Early Intervention.  I'm sure that will help him out tremendously.  His consistent words to date are still; dada, ok, all done and sometimes outside.  that's it.  He says a few other things here and there but not often.   I'm also waiting on getting a 4th day of ABA therapy started, hopefully in a few weeks.
  
  Thanks for checking in and thinking of Sam and us!  
  xo
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• Thursday, May 20, 2010 12:20 AM, EDT

  FINALLY...Sam is starting to express to us visually when he is in pain!!! After vomiting this morning he was holding his belly, whining and crouching down. His therapist was here and is helping TREMONDOUSLY to get him to be more expressive! I asked if he wanted medicine and he pointed to the kitchen where his meds an...d droppers are kept! OMG- I almost cried! Gave him mylanta for break-thru reflux symptoms!

• Friday, May 14, 2010 10:11 PM, EDT

  Sam happily drank both cups of formula again today with the Nexium powder mixture in them.  I just hope it works and he gets enough of the med since he left a tiny amount in the cup both times.  I tried giving it to him with a dropper tonight but he wouldn't take it and I didn't have the strength to fight with him on it which would probably have turned into a battle ending in tears and vomit!   I'll settle with him getting MOST of his med and work on getting him to take all of it over time.
  
  I'm very touched by several people who attempted to Eat Like Sam for a day today!!!   I attempted this myself and even though I witness first hand every day what he eats or doesn't eat it was a huge struggle for me to not be able to grab whatever I wanted to out of the fridge, add milk to my coffee or eat any of my bad foods that I tend to stop for these days!  In a way it reminded me of trying to follow Weight Watchers in that I'm always thinking of food so it was a struggle for me in that sense too!  I broke down at 5 p.m. and ran to MaryLou's to get a "real" coffee!!  Sam chomped away on his lolipop as I sucked that thing down!!!   Please keep in mind that he drinks at least 32 ozs. (30c an oz=960 calories) of special Neocate splash formula a day and is not starving or craving foods like you may have experienced today.
  
  Sam's friends at playgroup this morning ate bananas and dum-dums just like him! I LOVE them! His buddy Nicholas had 3 bananas (1 before we got there) and Franco had THREE pops! lol!!
  
  Again I thank you and do not forget the little things that people do to show their love and support for us!
  
  xo
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• Thursday, May 13, 2010 9:02 PM, EDT

  It's been a few weeks since I've written..pretty much a lot of the same thing during that time.  Only been eating banana and some cucumber and some days no food and just formula with vomiting a lot and not taking a medication! 
  
  But yesterday and today he seems to be feeling better, VERY happy, no pain or vomiting!  Maybe his esophagus has cleared up from all the foods that weren't agreeing with him and his ear infection/cold is gone.  Still questioning seasonal allergies.  He seems ok this past week with that.
  
  Got his GI doc to prescribe Nexium powder packets.  It's 10 mg. 2 x a day and you mix it with 1 tbsp of water then add it into some juice or formula.  I put it in his last cup of formula tonight and he didn't seem to notice but he also didn't finish the full 8 ozs. so I'm not sure.  Will try it in juice tomorrow or less formula with it.
  
  He has been eating a whole banana plus cukes the last few days.  yay!
  
  Have an upper GI barium swallow scheduled for 5/28.
  
  Tomorrow is Eat Like Us for a day challenge to kick off the EOS Awareness week!  I would like to thank everyone who is willing to try this for Sam.  We appreciate all of your thoughts, concerns and prayers!! 
  
  Sam has been doing good with ABA therapy.  It's a slow work in progress but we had a big breakthrough yesterday and hope to continue moving right along.  He's been saying more some words; go, outside, door, key, juice, kitty and maybe a few others!  yay Sam!
  
  Much love from us!
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• Friday, April 23, 2010 10:30 PM, EDT

  Why do I even bother offering him food when he seems content drinking Neocate splash? 
  Our Nutritionist said to offer him some of the foods that he has been turning down at least every other day. I get so tired and discouraged of trying though when most of the time he starts gagging and pushes his chair away from the table. :-( Today he ate a bunch of apple slices but started gagging and vomited ALOT!   I feel like not asking or offering him anything and seeing if he starts looking or pointing out to food.  What to do?  What to do? 

• Thursday, April 22, 2010 10:27 PM, EDT

  Busy week!  Sick visit to the pedi on Monday.  He has an ear infection and was put on antibiotic.  Doing MUCH better today!!!  He had fun at a playdate yesterday with some friends I worked with at BCBSMA.  Was upset at first but then had a great time!  Had to take him to a doctor appt. for me and he did awesome there!!!
  
  Started ABA services last Tuesday.  That's been a huge adjustment and we are taking it slow.  Working on building a trusting relationship with Sam and the Therapist before she really puts him to work!  :-)  3 days a week so far.  He did great today, only cried a few mins.  He also has said a few words this week; key, juice, door and "tato" for Mr. potatoe, his BFF that he holds onto.  The therapist was using Mr. Potatoe as his reward toy today!
  
  4th day in a row that he would not take the Omeprazole in the applesauce. I thought it was because of him being sick but I think he's caught onto what is in it and starts spitting it out when I try to shove it in his mouth!  Need to call GI doc to see what else we can try.
  
  He vomited M-W but he was very upset each time.  No vomiting today, yay!!!
  
  I'm enjoyijng some quality alone time with my favorite little boy while Steve has gone back to work this week.  The week has flown by!!!
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• Monday, April 12, 2010 11:44 PM, EDT

  Appt. today at MGH Food Allergy Clinic.  Sam started crying AS SOON as we walked into the office!  Got him out of the stroller and he puked twice on the floor!  Got put in a room and he was still very upset in there and vomited 2 more times!  Allergist came in who we met before and LOVE!  He's awesome!  He suggested one of us take Sam for a walk and the other stay in to talk.  So I had Steve take him since I'm more thorough on everything!  :-)   I met with the Allergist, GI and Nutritionist without them.  Went over EVERYTHING!!!   I think their eyes could have popped out if they didn't restrain themselves when I talked about how fast we did all the food trials!   The Allergist said any food that they have problems with can stay in their body from 4-6 weeks!  This explains everything now!  We never waited that long before trying something new.  Our stupid doc never mentioned that once!   The Allergist today was also surprised when we trialed wheat recently since that is one of the major trigger foods.   My eyes are now open to our view on our old doc and I can't believe she never suggested any further GI testing for motility of the digestive system with all his gagging, choking and vomiting. It's as if she was just about trying foods and scoping every 6-8 weeks.  And since Sam's 3 biopsies have been clear she would basically say ok let's move onto more food and not figure out why he's still having all these symptoms.  It HAS to be the reflux and couldn't be anything else, could it? yes I'm being wise here!   So the docs suggested doing an Upper GI barium and Food Challenge with tracers to test for motility in his digestive system.  there could be reasons why he's not swallowing and digesting food correctly and it comes back up so often.
  
  For the next 3 weeks we are not to give him any new foods.  He may still have traces of other foods in his system that are making him sick.  We will keep him on banana, applesauce and offer him cuke and cantaloupe if he'll eat it.  If the vomiting stops then we can restart either chicken or turkey since he did well with those and the Nutritionist was impressed how much he loved them.  If he continues to vomit we will increase the Omeprazole (prilosec) to 20 mg. 2x a day.   They also said that once we can hopefully get him to stop vomitting he should be able to eat all of the foods that we have restarted since the last 3 biopsies were clear.  I'm not so certain on this yet.  Will have to see.  We have a follow-up appt. in 2 mths with the 3 of them again. 
  
  Also liked the GI doctor a lot!  He gave us his pager # and said to always contact him with any questions, concerns or to go over test results.  I reallye liked the Nutritionist too and think we'll work with her a lot once he can eat more food.  She gave me more of an insight to when he was an infant and toddler and having pain, started vomiting a lot at age 1.  She said there was probably milk in all his cookies plus we gave him yo baby yogurt and cheese sticks early on, not knowing of course.  uggh!   Learning so much now!! 
  
  Glad today is done with!  Was a very long and exhausting morning!
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• Wednesday, April 7, 2010 12:37 PM, EDT

  Well our baby is now 2!!  Wow- where did the time go?!!!  
  
  We survived his small family birthday party!  Made him rice cupcakes with chocolate frosting. Used kosher for passover chocolate chips to melt for the frosting.  He had some Sat. and Sun. and got very sick Sunday night!    Cleared up in a few days.  Then on Friday 4/2 he got a few bites out of a cupcake at playgroup.  He's so quick and I wasn't going to fish it out of his mouth!!!  Saturday we had friends over and he got a lick of frosting.  Sunday he got 1 piece of chocolate!  GRRRH!!  Sunday night he woke up in pain and vomited ALOT!!   He did great yesterday!  And then today he vomited while eating his banana!  Not sure what's going on!  He hasn't been eating much at all!  Mostly just banana and applesauce.  Not good!  He's gagging at the site of food or he will grab something and just play with it.  I'm thinking that he has seasonal allergies and it could be causing his EE to flare up!
  
  On Monday, 4/12 we have an intitial consult at MGH's Food Allergy clinic.  Look forward to that!
  
  On 4/27 we have an appt. with Childrens EGID program.  That will be with our current GI doc who we are not crazy about.  We are ready to leave Childrens for MGH but will see how these appts. turn out.
  
  Today he had a 6 month re-eval from Early Intervention.  He did great on things he couldn't do last time. Obviously speech and expressive language not so great!   There were 3 people here at the same time including his Educator Christie.  He did very well with all of them and didn't cry at all!  He sat on my lap, threw some things or pushed them away but also completed a lot of tasks that they showed him to do.  Very proud of him!  So in less than 6 mths he's done very well with just an Educator!  Those weekly sessions didn't start until December so it's actually only just over 3 mths!!!
  On 4/14 he starts ABA therapy.  That will be 3 mornings a week for 2.5 hrs. each time.  Early Intervention thinks he'll do very well with this frequency and will be blossoming in no time!  They suggest that we try their Language Group with the ABA Provider being there as well and start starting this summer.
  
  One of the ladies explained to me why he doesn't keep still and is always on the move.  She said he he gets overstimulated and excited.  He doesn't know what to do and how to take it all in and focus on one thing for long. I think the ABA therapy will help with this!
  
  pheww- think that's it for now! 

  
  

  
  

  • Thursday, March 25, 2010 12:33 PM, EDT

    Sam woke up at 10:45 last night crying and screaming!  He vomited ALOT on his carpet and also in the bathroom.  Took a while to calm him down.  His scream was so ear piercing and scary!  I couldn't soothe him and he wouldn't take the mylanta or juice that I offered him.  Felt so helpless just sitting there waiting for him to calm down.  Getting him cleaned up and dressed again was a huge struggle.  My poor baby!!!  Finally got him back to bed after an hour or so. 
    
    He's been fine today for the most part.  Had a 2nd EI session today as she will be away next week.  He did VERY well!  He sat on the Educator's lap and said "hug"!  I couldn't believe I actually heard it!!  He also said "all da" for all done, "no" and "hat" for Mr. Potatoe heads hat and was putting it on his head. YAY!!!!  Now if we can keep him talking into his next visit which is in over a week!
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  • Wednesday, March 24, 2010 9:24 PM, EDT

    Sam did VERY well with the new Educator starting last week!  By the end of the session he was hugging her and playing peak-a-boo!  The OT had a visit later that same day and he did GREAT with her too!  We were very happy!  
    
    He was doing well with alot of things until the last few days!
    
    Having doubts that turkey is a safe food for him afterall! He's been eating it off and on since Thanksgiving. But we never trialed it "alone". We always tried a new food either a week before or after.  Yesterday and today we give him turkey. And today he's very "off" and VERY difficult! He vomited alot tonight after his bath for which he screamed through. He was drooling again and holding onto objects! He went to bed holding onto a tube of toddler toothpaste and a chewy toy!!! :-( Again I believe the EE brings out these behaviors in him!
    
    Today we had ABA services come to tell us about their services and see what Sam needs help with.  That was a good 2+ hours.  The lady isn't sure yet when they will have slots open for Sam.  I may have to call another company as well to see what their availability is.  Really want to get this started within the next few weeks!
    
    Saturday is his family birthday party and to be honest I'm not looking forward to it.  I'm just not in the mood to play Hostess but I'm hoping to put on a smile for his sake and pray that everything goes well including with him feeling good! 
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  • Tuesday, March 9, 2010 10:23 PM, EST

    Sam's mood and behavior has still been "off" today.  I'm thinking it's the rice culprit that is doing it!  I just want my happy boy back and none of this VERY difficult "don't change my diaper, get me dressed or even try to put my socks and shoes on" whining, throwing himself down on the floor and crying temper tantrum toddler monster!  ha!  It's so hard to tell if this behavior is typical "terrible 2s" or if he's not feeling well from the EE and really does not want to be bothered.  We are definitely seeing a pattern though so if we get our silly Sam back in the next few days we'll know that it's from the rice!
    
    Tonight I was talking to my mom on the phone and he kept saying "I di....I di....I di....I di....I di....I di.....I di....I di....I di.."!  over and over again!  It was so fricken cute and I know his Nana loved hearing him try to talk and say "I did it"!!!   He was happy and having fun!
    
    Had EI session today and a visit from the Intake lady/Psychologist.  He was upset at first as he had just got up from his nap, had lunch and washed his hands at the sink in the bathroom but wanted to keep playing in there.   Perfect timing for them to show up and he was not happy!!!   Took him a bit to calm down and finally had a good session with his Educator.  We are working on getting his ABA services setup along with additional OT and ST (speech).  Hoping to start this new therapy for him by April!!   His current Educator will be ending her services with him next week and going on maternity leave.  I'm bummed with that and wonder if Sam will be looking for her when the new girl starts.  

  • Monday, March 8, 2010 8:13 PM, EST

    Made Sam banana rice bread and banana rice muffins over the weekend and he wouldn't try either.  Was hoping to trial rice flour with him but that's a no go.  He did eat plain rice crackers 2 days in a row and is clearly having negative reactions from that.  Went to check on him sleeping last night and he had vomited sometime in his sleep.  Big mess all over the bedding and his favorite puppy blankies.  Today his mood was "off" and he had loose and stinky stools. So 'we're officially done with rice!
    
    Going to take a break the rest of the week to let him clear up and also give us a break.  All these back to back trials are really getting to us!  Not sure what we're doing next.
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  • Friday, March 5, 2010 12:11 PM, EST

    GI appt today went well despite him being upset at times which is expected.   She is pleased with how he is doing and his weight has gone up to the 25% and height is 30%.   We will be pushing back his next scope due to the failed wheat trial.  We will trial rice flour next.   I have some recipes that I want to start making and am going to do a banana bread with rice flour and applesauce.  Also picked up some kosher for passover marshmellows, chocolate chips and cotton candy from the Jewish Butcherie on the way home!   Will be trying those with him too!
    At the end of the visit we mentioned Sam's Neuro appt. from yesterday.  She was taken back a bit and seemed concerned.   We told her we wanted him to be seen for his language delay and sensory processing issues.   We told her the diagnosis that the Neuro doc gave him.   She was VERY adament to say that we should NOT be giving him that label!   It is ok to use it to get the additional therapy services but for us to not think that he is on the autism spectrum AT ALL!  She is convinced that the sensory issues are in fact contributed from his EE.   She said for all the time that he's been in pain, gagging and feeling like he's being choked that he is going to have problems processing various sensories.   Felt relieved to hear this!
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  • Thursday, March 4, 2010 1:09 PM, EST

    We had a Neurology appt. this morning for Sam to discuss his speech delay and possibly sensory processing disorder.
    The doc gave Sam a diagnosis of Pervasive Developmental Disorder (PDD-NOS).   Doc said it's mild and even hard to say that at age 2 he does have that since he's only able to see a certain amount of Sam's behavior at the appt.  (this diagnosis does fall under the Autism spectrum but he is not autistic).  I think his real diagnosis should be Sensory Processing Disorder but we wouldn't get any additional services with that and right now he only has an Educator from Early Intervention which we haven't seen much of a difference in him yet from that.   Doc also said he definitely has a developmental language delay. He suggests having weekly speech therapy, Applied Behavioral Analysis services http://www.brighttots.com/aba_therapy.html  and possibly OT.  At the appt. Sam was crying a lot but did settle down to point to his nose, ear and belly.  He also looked at the picture cards, pointed to the cat and "meowed"  lol!  I forgot to ask him if he should still have the Educator from EI as well.  I'm going to give EI Intake Coord a call shortly.
    
    We also made an appt. for ENT/Audiology to check his hearing.  He did suggest that!  It's on 3/31 but I think Sam has his 2 year appt. that day too, need to double check.  Lastly he said we could do some bloodwork to check on his genetics, etc.  He gave us an order sheet and we can have that done during his next scope while he's under anesthesia!  ha!
    He also got weighed and measured at first which he screamed bloody murder at!  Not sure if the results are accurate but he measured 33.5 inches and about 25.12 lbs.   So that's up 1 inch and 1.2 lbs. in 2.5 mths- pretty good!!
    
    I think we covered everything we could.  phewww!  So glad that's finally done!   Now if I can keep on top of all these weekly services plus his GI appts!  oy!  Glad I can be this kid's personal secretary!  :-)
    
    

    • Saturday, February 27, 2010 8:52 PM, EST

      Restarted wheat yesterday for the 2nd time. Took almsot 1 week off in between. He had 4 GREAT days of no vomiting, eating ALOT of safe foods, WONDERFUL mood, etc! He had 1 serving of wheat crackers yest and today. By this p.m. he was on the floor in screaming pain, gagging, coughing, vomiting and inconsolable! His behavior was awful thru the day too!  We have a GI appt. on Fri. and will discuss then.
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    • Sunday, February 21, 2010 9:19 PM, EST

      Like they say "all good things must come to an end"!   Sam woke up from his nap today with vomit all over him and his bedding!   Have no idea when that happened as we didn't hear any coughing or gagging!   I had company over but put the monitor on and kept listening for him at the end of his nap as it was going onto 3 hours.  I'm so pissed at myself cuz we gave him rice pasta last night!   Too much adding things in while trialing wheat!  He hadn't had rice pasta in over a month and we stopped it before as he was vomiting every time he had it.  But that scope came back clear so I thought we'd give it a try again.  uggh!  NO more rice products while trialing other major triggers!   Now we need to wait a few more days until trying wheat again!   I hate this!!!   I'm so inpatient and just want to know already what the heck he's allergic to!   And I feel bad feeding him the same things EVERY SINGLE DAY!!!  bananas, applesauce, cucumbers, maybe apples or cantaloupe...all depends on his mood but that's it for the most part!  So I don't want to hear about non-EE kids that eat the same thing every day too..at least they can eat WHATEVER they want!  Obviously I'm a bit frustrated tonight! 
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    • Friday, February 19, 2010 8:06 PM, EST

      another good day!   No vomiting YET and he was very hungry today!!  He ate a whole banana between breakfast and lunch.  Finished off the rest of the turkey, 1 container of applesauce (between lunch and dinner), some cucumber and cantaloupe!!   That is ALOT for him!!   Obviously he's feeling better but we still don't know if it was from the wheat, reflux or a cold.   We'll restart wheat again either Sunday or Mon.
      
      Went to Stardust gym this morning and that didn't go well.  He was happy and smiling for 10 mins and then complete meltdown.  Finally took him out of the gym room and he just had a ball running around their front room, looking around and touching everything!   Really need to find an indoor playspace to take him to where he can enjoy himself and learn the consistency of going every week. 
      
      

      • Thursday, February 18, 2010 10:58 PM, EST

        A great day- no vomiting, coughing or wheat!  We figured we'd take a few days off from wheat since he has been vomiting and has had a few loose and stinky stools!!   We also started him back on Prilosec today.  We are using the gneric brand capsules to open them up and mix the beads into his applesauce.  He took it with no hesitation, didn't even know it was in there!  yay!  He was in a much better mood today!  I think we'll stay off the wheat for the weekend and try it again on Monday after the prilosec may have kicked in a little.
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      • Wednesday, February 17, 2010 9:32 PM, EST

        We went to the EE Support Group mtg. this past Saturday.  It was so refreshing again to talk with these other parents whose child/ren have the same chronic illness. As we get further into this process of food re-introductions it is becoming more difficult to understand why Sam is vomiting when his biopsy comes back normal.  Is it his reflux?  Did we feed him too much?  Is it because he has a cold and cough?  So many questions and we can't always figures it out.
        
        His next Endoscopy will be on March 17th.  We just started a wheat trial on Friday 2/12 so that scope and biopsy will test for the wheat allergen.   So far we've only given him cheerios and some crackers.  Need to add more wheat foods to see how he will react.
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      • Friday, February 12, 2010 10:33 PM, EST

        Went to playgroup this morning.  After a few initial whines and hesitation Sam did great and had fun!  phewww!  I actually came home with a sigh of relief instead of feeling emotionally drained!   I swear I can never tell how each adventure out of the house is going to be with him.  I guess it depends on how he is feeling and if anything or anyone triggers his sensories or if his EE or reflux is bothering him. Who knows!
        
        This morning we started wheat foods with him.   Only gave him a few cheerios and a few cinammon graham sticks.   He was fine until after naptime.  He was drinking his formula and all of a sudden gagged and puked ALOT in the living room.   We cleaned that up, Steve used the steam cleaner, gave him applesauce shortly after that and Sam vomited again within a few mins.  Poor Steve dragged the steam cleaner out again!  Thank god for that thing!  Otherwise our living room carpet would be a big MESS and SMELL like PUKE!!!  We didn't give him much else to eat after that.  He was not in any pain before or after so we were scratching our heads on that.  Could the wheat have given him a reaction already?  Don't know but I wrote everything down, that's for sure!  
        
        He just woke up at about 10:00p, was crying and gagging but that was it.   Please let him sleep through the rest of the night!
        
        Tomorrow we are going to the EE support group mtg. at Children's hospital.
        
        going to check on him now as I just heard a whine.  Hope he is ok.  He was sitting up and crying again but then laid back down.  uggh!   Not sure what is going on but don't like it!!