Day 2: No Gluten

We’re on day 2 of no gluten, on top of nearly a month of no casein. So far, so good!
I’m thinking that we will be meeting that GFCF goal much sooner than anticipated.

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Early Intervention Evaluation Day!

Today was Oliver’s evaluation at the early intervention center. Today’s appointment determined whether or not he qualified for services at their centers. In order to qualify, he had to present at least a 25% developmental delay in either or all of the following categories: cognitive (problem solving, play, and thinking skills), communication (using gestures, sounds, and words; understanding what others are saying), social/emotional (getting along with others and sharing feelings), physical (using hands and eyes together to do things; rolling, sitting, crawling, walking, running, and jumping), and self-help/adaptive (calming, feeding, sleeping, and dressing). When we were called back to the evaluation room, we were greeted by four lovely ladies who were very warm, inviting, playful, while still professional. We had a speech language pathologist, two special educators, and an occupational therapist. Watching them do their jobs so tactfully and mindfully was refreshing; their passion for their careers was emanating off of them. The interesting (and somewhat annoying) thing about today’s evaluation was that Oliver was more compliant, calm, and social than ever before. He didn’t walk on his toes or spin and didn’t flap his hands except for once. He stacked blocks for the first time and played with toys appropriately for the first time. He was blowing my mind and I was worried that he wasn’t going to qualify for the services that he needs. After over an hour of play-based evaluating, the four women stepped out of the room for 30 minutes to discuss his needs. When they came back to us, the reported that they, too, share my concern for ASD (autism spectrum disorder) and that they highly suggest that he gets a diagnostic evaluation soon. They did a pre-screening autism checklist and they said that 23 out of 25 of the early signs they look for apply to him. They said that, even though he was abnormally high functioning today, there were still a lot of concerns that they picked up on (lack of eye contact, not responding to his name, and having trouble sharing, relating, and listening). Overall, they decided that he qualifies for services and we have our IFSP (individual family service plan) meeting next week where we will discuss service options and set goals towards his progress. I’m very happy to have found such an incredible early intervention center and that my son is going to get the extra help that he needs.

P.s. as soon as we got home, the tantrums, hand flapping, toe walking, and spinning in circles returned (of course– little stinker!).

The Diagnostic Evaluation is Scheduled!

I have Oliver’s diagnostic evaluation for ASD (recommended by his pediatrician and his early intervention center) scheduled for:
August 27th, September 3rd, September 10th, and September 17th. The first appointment will be a discussion of concerns, the second and third appointments will be evaluations, and the final appointment will be a discussion of any diagnosis that presents itself and next steps. Each appointment will be about two hours long and conducted by a neurologist. I’ll write more after each appointment. Stay tuned for more!

Taking Oliver Off of Dairy and Gluten

Oliver hasn’t had any dairy products since June 24th (almost a full month).
I switched him to soy milk products (milk, cheese, yogurt, butter, etc.), but he had abnormally smelly diarrhea, a facial rash, and increased hand flapping, toe walking, and spinning in circles. He got a full body rash after three weeks on soy and then got extremely angry for no apparent reason. He proceeded by hitting our dog, hitting/slapping/head butting me, and then pushing over my table. I spoke with his pediatrician and she thinks that he might be allergic to soy, in addition to dairy and everything else he has had reactions to. After switching Oliver from soy products to almond milk products, he has transformed. His hand flapping, toe walking, and spinning in circles has decreased drastically. He has added 3+ new words to his vocabulary and has started, both dancing AND clapping again (both of which were part of a major regression he experienced). The diarrhea has stopped and he is back to his normal constipated self (*sad face*). I’m now slowly cutting out gluten products by replacing the gluten he consumes (bread, crackers, cereal, etc.) with gluten free alternatives, one at a time. Our goal is to be fully GFCF (gluten free, casein free) by the end of September. I hope that we can meet this goal much sooner, but I’m keeping it realistic.

3 Weeks Later

Because of Oliver’s eczema and behaviors, his pediatrician recommended that we cut out all dairy. We spent 20 days on soy milk products and the eczema didn’t fully dissipate and his behavior actually worsened. His hand flapping went from happening only 3 times before in his life, to 50+ times a day. He went from over a year of constipation to experiencing very loose bowel movements (sometimes diarrhea) 4-6 times a day. After checking in with Oliver’s pediatrician, she recommended switching to almond milk and saving up some money for an allergy test.

So Oliver has now, to date, had allergic reactions to:
Dairy products
Soy products
Hemp milk
Goat milk
Egg
Edamame beans
Chlorine

Our next steps include: switching from soy milk products to almond milk products and saving up for a comprehensive allergy test that will rule out all of his allergies.

Our Journey to Scheduling an Evaluation

After Oliver’s 18 month well-child exam, his pediatrician said that he needed an evaluation at an early intervention center to start getting therapies as soon as possible. She felt that he might have Autism Spectrum Disorder, might have Sensory Processing Disorder, and will definitely need speech therapy for his gagging.

Over the following week, I called 6 centers and asked if they take our insurance. After learning that all 6 take my insurance, I decided on one center and called to make an appointment. When I told them where we live, we were told that we’re not in their “service area” and, therefore, don’t qualify for services. Heartbroken, I called the next center on my list. And the next center. And the next center. And the next center. I was turned down by all of the centers that I had found between my home and Seattle (about a 75 mile radius) and didn’t know what to do next.

I proceeded by calling 34 other centers all over the state. After having been turned down by 40 Early intervention centers, I started coming to terms with the fact that my baby boy wouldn’t be able to get the help that he needs because we live in a rural area. Shortly thereafter, I received a phone call from the program director of all of the Early Intervention centers for my county. One of the centers had given her my information and, after lots of work, was able to get one of the centers (my original #1 pick, coincidentally) to amend their policies and accept my son. We have his evaluation for services scheduled for July 21st (a week from tomorrow) and I can’t wait to have my son start on his road to healing. The program director said that, because Oliver has so many symptoms that coincide with those of an autism diagnosis, that he should get in for a diagnostic evaluation at University of Washington’s Autism center as soon as possible.

Our next steps include: Evaluation for services and scheduling of the diagnostic evaluation.

My notes for Oliver’s 18 month well-child exam

18 month Check-up
________________________________________________________________________

Sleep:
Bed sharing with mom: 10:30 p.m.-9:30 a.m.
Nap: 1:00p.m.-3:00 or 4:00 p.m., but has had a few 4-5 hour naps while cutting these most recent teeth.

The night of June 20th, Oliver got out of bed dozens of times, screamed and cried, flailed his body around, and banged his head on the wall purposely over and over again and when I put him in his crib he purposely banged his head repeatedly on his crib.

Has been waking up from naps and repetitively/purposely banging his head on his crib to let me know he’s awake.

Diet:
Organic Whole Milk with Omega 3

Coconut water diluted with water

Nordic Natural’s Baby’s DHA 4 mL daily

Thorne Vitamin D 500 IU daily

Whole wheat round crackers

Pears

Peaches

Raspberries

Blueberries
Strawberries

Watermelon

Organic Mac and Cheese

Peanut butter and jelly on wheat

Granola

Yogurt

Pickles

Tried a couple bites of bacon

Organic O’s cereal

Wheat Toast

Peter Rabbit Veggie/Fruit/Grain Puree Pouches

Spinach/fruit smoothie

Diluted vegetable juice (kale, celery, cucumber, apple, lemon, ginger )

Hard time eating vegetables- need suggestions; he will eat them occasionally but he usually ignores them or refuses to eat.

Tried meat loaf and sandwich meat; spit it out, uninterested.

Gags and sometimes throws up if he eats a piece of food bigger than thumb nail. This has been happening for a year now and hasn’t gotten any better. My friend’s 9 month old can take big bites off of a sandwich and doesn’t throw up or gag. He, also, sometimes puts his fingers down his throat and then throws up.

Drinks way too much milk- probably 20-30 oz during the day and will stay up all night screaming if I don’t give him a sippy cup of milk. He usually goes through 16 oz at night. It’s hard to stop giving him milk, when he wants it, because he throws such fits for it and it’s difficult to deny him milk when we both need sleep at night.

When drinking plain water (most of the time), he spits it out onto the floor, his shirt, and his hands to play with. Although, if an ounce or two of peach/mango coconut water is added, he will drink it without playing.

Possible Allergies?:
Diaper rash with goat milk.
Diaper rash with hemp milk.
Red, splotchy chin after eating egg.
Full body rash after swimming in chlorine two days in a row.

Social/Behavioral:

Has been described as “serious” by countless friends.

A lot of the time, has to have two things in his hands (bottles, rocks, toys, etc.).

He used to dance a lot when music was on, but now he just runs in circles.

Walks around on his tippy toes a LOT.

Severely angry outbursts if I need to carry him instead of letting him walk or if he doesn’t get what he wants. Not sure if it’s normal for him to get this upset about such small things at this age, but he does not cope well with any sort of change. Screams and cries until he can’t breathe.

Cries and flails around if I try to hold his hand or even touch him a lot of the time, aside from occasionally being interested in laying with me, but that’s only when he’s really tired.

Hates being held 99% of the time, unless he’s really scared or if he hurt himself.

Kicks off blankets or toys that I set on/near him.

Cries when I put our comforter on him at night and is usually only comforted by softer blankets like a plush fleece blanket we have. Sometimes our not so soft comforter seems to hurt him. The comforter is made of cotton and polyester, while our plush blanket is made of anti-pill polyester.

Not engaging with other babies/kids when at playdates or birthday parties. We aren’t around other babies/kids a lot, but we are semi-frequently, and he has been completely uninterested, except for three weeks ago he smiled at a 10 month old and played peekaboo. That felt like progress, but it still worries me.

On June 22nd we went to a playground and a little girl (probably 3 years old) asked if she could be Oliver’s friend and he ran away. When she tried to hold his hand, he pushed her away and ran away. She tried to play with him for about 10 minutes, but she gave up after realizing how uninterested he was.

On June 25th we spent over 4 hours with a one year old and a 10 month old and he failed to notice that they existed the entire time. He spent his time chasing around the family’s chickens, rabbits, and dog.

He has said mama, nana, paco (our pet dog’s name), dog, again, bye bye, choo choo, and that (I don’t think he’s saying ‘that’ with the meaning it holds), but usually only uses one or two of these words for a few days, then starts saying one of the other words he knows and kind of abandons the other words while learning and practicing the new ones. He has had several times where he has gone a few days without saying any understandable words and then he will reintroduce a word or two. He hasn’t said bye bye in over a month and has only waved bye bye once in over a month, when he used to say bye bye and wave everytime someone left our house. He has signed milk, all done, and bird in the past, but has only signed birds and all done recently and hasn’t used ‘all done’ when he’s finished, but now for when he wants more.

He’s been very vocal (babbling) the last few days. He’s mostly saying nonsense words, but he has added in the word “some” for when he wants food.
Either cries or is indifferent when people greet him (except occasionally he will be happy when seeing someone he doesn’t know), unless they are adults he has been around them many times for extended periods of time.

Only likes one movie at a time. Has little interest in any other movie but the one he’s interested in at the time (has lasted several months on one, then switched to a different one). I’ve heard that this is normal from one person, and then heard that it is abnormal from another, so I thought I would add it in.

Trying to limit screen time to 30 minutes a day or so, but sometimes when his tantrums are really bad and nothing soothes him, playing his favorite movie stops it. I haven’t known what else to do, because food, drink, changing, playing, reading, etc. don’t help in those situations.

Sometimes rocks from side to side if I have the TV on.

We sometimes show Oliver the videos we take of him on our phones. Lately, he completely loses his temperament when we won’t replay the videos over and over (even if we’ve already replayed it for 10 minutes). He will cry uncontrollably for a long time and is completely inconsolable.

Cannot yet color with crayons. Still just wants to put them in his mouth.

Whenever we’re outside he runs towards the street and doesn’t listen “come back”, “stop”, “no”, or “this way”. He refuses to hold my hand, as well. It’s obviously a game to him to run away, but I don’t know how to change that mind frame.

He does an excited hand flapping motion sometimes. This doesn’t happen too often, but someone said that it might not be normal, so I thought it was worth mentioning.

He’s really afraid of our vacuum cleaner when it’s on and when we go through the drive through car wash. I think it’s probably the loudness that scares him.

Loves playing with water fountains or splashing his hands in baby pools.

Still gets super angry about having hands/face wiped after eating, having sunscreen applied, and changing his clothes/diaper.

Still doesn’t understand how to be gentle with our small dog; he is very aggressive with him. He pushes him off the couch, pulls his hair, and slaps him.

He gets very frustrated/angry with objects he plays with and squeezes them, puckers lips, and kind of shakes and whines. I’m not sure why he has to get so upset with his toys.

Doesn’t repeat any new words after I say them. I’ve only been able to get him to repeat “mama”, “nana”, and “paco”, but he usually ignores my encouraging that. Has trouble echo-ing words back to me. Not sure if he understands.

Is not yet pointing for things with purpose, and have only gotten him to understand two commands so far: “go get your milk” and “get another book”.

He puts shoes on his hands and likes to have them on a majority of the time at home. He gets upset if I try to take them off when I need his hands to be free (eating, drinking, changing clothes, etc.).

He’s been a little behind (in comparison to other babies we know that are his age and younger- babies several months younger than him are usually ahead of him) on milestones. He didn’t roll over until 6 months, didn’t crawl until 10 months, and didn’t walk until 15 months.

Ever since he learned to crawl, he has put all of his toys under furniture and has been very adamant about organizing them.
Spaces out occasionally.

Has been crossing/uncrossing his pointer finger and middle fingers a lot lately.

Eczema on arms, legs, belly, and cheeks. Seems to be getting worse. I’ve been using a coconut oil, tea tree, lavender mixture on his eczema spots daily.

Brush teeth at least once daily; have yet to go to the dentist, because I’m worried that he won’t be able to handle sitting still or letting anyone in his mouth. It is a major struggle just to let me brush his teeth.

We can’t take him shopping, to restaurants, or to events unless he’s tired enough to be in the baby carrier on my back, but that is rare. Usually have to go places together and take turns going in places, while the other goes into stores.