Update and reading books with mommy

Megan napped again today and woke up a little unhappy but not as bad as yesterday.  I was able to get a little bit of good eye contact/alignment this evening but only for short periods of time every once in a while.  But this is better than yesterday so that is a good sign.

One of the things I have been working on with Megan for about a week is not using my hands to read books.  She can turn the pages, or I can turn the pages, but I am no longer allowing her to force my hands to do whatever she wants with books.  We read so many books together that she was starting to hurt my fingers so I figured it was time to break this habit.  To my surprise she has done amazingly well with this from the very first time I told her to stop.  She didn't get upset or anything she just let go of my hands.  She still tries to grab them and will sometimes catch herself and stop and other times has to be reminded but again she is taking it well and not throwing fits about it.

Megan went down well again tonight.  She fussed for less than 30 seconds and then was over it.

After discussing it with Will we have decided we are going to give Megan her enzyme tonight and Friday night and then stop and start collecting samples on Monday.  Hopefully we can get them done by Tuesday so we can get her started on the enzyme again quickly.

NOTES: 1 Intolerance Complex at dinner, DD at 1:30, woke up from nap a little unhappy, went down for bed really well

I know that Megan was still asleep at 11:40ish because I hadn't gone to sleep yet.  At 3am Will woke up and noticed that the monitor volume had been shut off and he turned it back on.  Megan was asleep at that time too.  So we know she slept until at least 12a and from 3a- when she woke up.  Not sure at what point she made a noise and Will turned off the volume or how long it lasted.  She woke up around 8:15 very happy.

We had our appointment this morning to discuss Megan's treatment plan.  We will be doing urine, stool and blood tests by Monday.  We have to stop her current enzyme for 2 days (usually 10 but she hasn't taken that much) before we can do the tests so have to get them done by Monday so she isn't off of it for too long.

After the testing we will be adding back the enzyme and then increasing the dosage until she is taking it with all three meals.  We will also be adding a probiotic, vitamin and fish oil.

The doctor said she got chills and teared up when I told her about Megan's eyes yesterday and this morning.  She said it means two things to her: first that Megan really needed some help and second that we are going to see good results with her and quickly.

I really hate that we have to stop the enzyme because it is helping her so much and it feels mean; but the test results won't show a true picture with them in her system.

Shaking hands, hiding and the rest of the day

I taught Megan and Sam how to shake hands and I taught them that you say "hi, how are you?" when you do it.  So if you stick your hand out and ask Megan to shake it she will.  Or you can stick your hand out and say "hi how are ya?" and she will shake it.

For the past couple of weeks Megan has been playing hide and seek with me in her room.  After I get her up from nap she will go into her closet and step behind the wall and then peek out at me.  It is super cute.

Megan got about an hour nap today and woke up unhappy.  It took her a few minutes to get over it.  I am not sure what is causing her to wake up from nap early.  By 4p the amazing eye contact had dissipated.  She would still look at me if I asked her to but the constant looking was less frequent and once again she started tooting right at 5p.  She only ate about half of her dinner, but she did have a big snack.

She went down really well - she was half crying and only for a few minutes here and there.

NOTES: dirty diaper at bedtime, way better bedtime routine, started tooting again at 5p, eye contact dissipated by 4p

A little bit better night and Whoa the eye alignment and contact

Megan woke up twice last night.  The first time for 20 minutes and the second time 3 hours later for 1.5 hours.  She then slept in until 9:30.  She woke up a few times between 6:30 & 9:30 and went right back to sleep each time.

This morning after breakfast I noticed that Megan was looking at me a lot.  I mean looking me in the eyes for 30+ seconds at a time constantly.  I took out my phone and she let me take a picture of her without freaking out.  She hasn't liked pictures for months so if I take one she is generally yanking on her ears or completely turned away in them.

She was fighting me with her glasses so I let her take them off for a few minutes to see what would happen and I got more than I bargained for.  Her eyes were aligned and she continued making eye contact.  Her eyes are never aligned when she isn't wearing her glasses, especially with the stronger prescription.  The moment her glasses are off her right eye turns in.  So, eyes were aligned, her eye wasn't shaking and she maintained eye contact.  I decided to grab the camera and see what would happen.  Not only did she let me take photos, she kept asking for more each time I tried to put the camera down.  I have close to 150 photos of her and with the exception of the ones where she is looking at Sam or something she is making perfect eye contact in every one and her eyes are aligned in every one.  AMAZING.

FG said that benzoates could cause the eye issues she was having so we have pretty much eliminated them (can't totally because of how sensitive she is to her other options) but we didn't see any difference.  She has had 2 doses of the enzymes to help her process them and her eyes look wonderful.

She went down for nap and pulled on her ears a few times before I got out the door so I put her arm bands on her and then she started screaming but stopped before I got to the bottom of the stairs - so less than a minute.

I think I might hug the doctor at her appointment tomorrow.

Much better night, some changes already and general update

Megan still woke up last night and there was a 3 hour window when she was awake off/on and unhappy for part of it but that is WAY better than the previous night.  She finally had the diaper we have been waiting for this morning.  And my little miss who we also call "toodles" because she toots all the time didn't have any toots until almost dinner time; about 24 hours from the time she had her first supplement.

I mixed the contents of the capsule in a little bit of PB tonight and it went great.  I think Megan's biggest issue last night is she was given a spoonful of food with a giant glob of powder on top of it.  I wouldn't want that either.

Yesterday Sam, Megan and I played in my bed after nap.  At one point Megan picked her legs up off the bed, lifted her hiney off the bed and then slammed her legs back down.  Sam was impressed to say the least and immediately copied her.  Megan smiled at him and then did it again and Sam copied her again.  It was on....she kept doing it and Sam kept copying her and she loved it.  Then she changed it up and started kicking her legs and Sam then copied that.  For the next 20 minutes or so Megan kept switching back and forth and Sam kept copying her.  It was fun to watch and it was a big deal developmentally for Megan.  One of the "issues" we have with Megan is that she doesn't want to mimic sounds.  We work with her by copying when she does stuff and she loves it but this was the first time she did it with a kid, and not an adult; which is supposed to be a big deal cognitively. Plus she kept doing it for as long as Sam was copying her.

Megan is doing well during the day, playing well on her own and even leaving her glasses on most of the time.  She is interacting well with Sam and is being more verbal.  When I put her down for nap today she screamed "NAH" over and over at me; which is how she says no.  She was telling me she didn't want to go down for nap.

NOTES: Day 2: gave 1 capsule Intolerance Complex with dinner; no toots today until around 5:15 and stopped after dinner. Awake 12-12:15; awake screaming but not flipping from 1-2; using baby doll to get back to sleep off/on 2-3.  Bedtime even better tonight - screaming but stopped after 9 minutes.

Dr Brooks initial visit

Last week I spent 20 minutes on the phone with Dr. Brooks discussing Megan and what I was hoping could be done for her.  This morning Will, Megan and I drove to Dallas for Megan's initial visit.

I spent the past 3-4 days preparing for the visit.  I edited Megan's overview document that I created for the sleep specialist last year. I included the information regarding what has been going on the past 3 weeks and updated what now know about her extreme salicylate sensitivity (had just gotten started on FG diet when I created the document).

I also created a document listing all of Megan's behaviors, medical stuff, our goals and questions.  The doctor used my document and walked through asking me about each medical concern, etc.  It was a very good interview - Will and I both felt like she was listening, paying attention and wanting to figure things out.

the last portion of the 1 hour session was spent with her conducting a very brief exam of Megan (heart, temperature, ears, abdomen and one of our concerns regarding a couple of bumps and a rash).

Our number one concern for Megan is her gut issues.  She asked me why we thought Megan had gut issues and I explained that she had always had digestive issues and discussed when things went off the rails regarding the sleeping issues.  During that discussion I gave a brief overview of the sleep disorder progression, including the fact that Megan pulled all of her hair out.  After I finished the overview she said "do you understand that the list of behaviors you are concerned about are all related to pain.  They are a response to being in pain".  We did know that, or pretty much knew that, especially about some of them.  Adults with Megan's sensitivity say that salicylates cause migraines and fibromyalgia symptoms.

What she said next hurts.  It it difficult to say it out loud or even to type.  Not that we didn't know this part, but she said that getting to the extent of pulling your hair out is bad, very, very bad.  It is not within the normal range of pain to get to that point.  And then she said she had only ever treated one other kid who had been in enough pain to pull their hair out.  Really, really hard to hear.

She sent us home with some samples of a digestive enzyme for us to start tonight.  We are starting with one capsule for Megan with her biggest meal of the day.  They told us to pour the contents of the capsule onto Megan's first bite of food for the meal, or put it in some juice.  I tried putting it in some water (Megan doesn't drink anything but water) but I couldn't get it to dissolve.  I then poured one onto her spoonful of oatmeal and it was so much that we had to knock some off.  They warned me not to try to stir it into food because it will immediately start breaking down the food but we didn't have a choice.  Megan did NOT like the power in her oatmeal so we had some issues getting her to take it and by the time Will went back to the oatmeal there was some serious liquid in it.  That stuff works fast. He fed her the liquid so we were able to get as much into her as possible.  We will have to figure out a better way to get this stuff into her.

Bedtime went much better tonight.  She was still crying but there wasn't extreme screaming forever.  Is it possible that what we were able to give her tonight is already making a difference????

The doctor wants to start Megan on a very high potency fish oil.  We used to give her one but had to stop because of the flavoring when we started FG.  The only issue is that the oil is lemon flavored.  Technically lemon is okay on stage 1 of FG but we know Megan can't always handle stage 1 items.  We will be getting a sample of the oil at our next visit on Thursday.  We will see how it goes, but hoping she doesn't have issues with it.

We will be getting Megan's treatment plan on Thursday.  It will include everything that the doctor thinks we should do for Megan now and down the road.  Will and I will discuss her recommendations and then choose what we will be starting with for Megan.  At that point appropriate tests will be ordered.  She had us go ahead and order a DNA test for Megan because it is something she wants done regardless and we order the kit, get the saliva sample and send it back in, so I took care of getting it ordered this afternoon.


NOTES: 1 capsule of Intolerance Complex with dinner; bedtime better, less screaming.

Not a good night

Megan had a good day yesterday despite not sleeping at nap time.  Unfortunately she didn't have a good night -she woke up at 11 and didn't fall back to sleep until 5.  She was awake for 6 hours!

She had her first appointment with the new doctor this morning and it went well.  I need to start documenting her new treatments and results so we can see what does what.  She will be starting a digestive enzyme tonight to help with her salicylate issues and we are hoping it helps her clear out whatever is going on right now.

As I was typing this she started crying which means she woke up from less than an hour nap.  She take 2-3 hour naps normally and seriously needed that and then some today.  So sad for her that she didn't get anywhere near enough sleep.

Much better night

Really limiting her salicylate intake really helped her last night.  She woke up for 30 minutes and then a little bit later for 1.5 hours; but that is so much better than the 4 hours from the previous night.  In addition she is having a great day.  She is so happy and back to herself.  

I am not sure why I never went his far previously when she was having a sals issue.  We are doing it again today - only no to negligible items and she got a detox bath after lunch.  She still isn't happy being put in bed but she is sleeping better.  

Salicylate Sensitivity Stinks!

Megan was awake for 4 hours last night, flipping out off/on throughout that time.  Thankfully she slept in a little bit this morning so she ended up sleeping for 4.5 hours, awake for 4 hours, sleeping for 4 hours.  As we typically due when Megan starts having sleeping issues Will and I individually and together dissect everything she has been exposed to, everything she has eaten, etc etc.  Despite freaking out at bedtime she had still be sleeping for at least 10 hours straight until 3 nights ago when she woke up for a little bit and then the next night was for a longer time and then last night even longer and finally DING DING DING.  This is exactly what happens with a salicylate build up for her.  

So on top of the molars, the acetaminophen issue and possibly an aggressive NAET treatment this week we have given her too much salicylates.  That one is all on me.  Peanut butter is a moderate food and so we were only giving her a small amount, barely enough to coat a piece of bread, for her lunch each day.  Most everything else we give her is low to negligible so we weren't having any issues and I got cocky or forgetful or who knows but one day I gave her PB toast for breakfast and man did she love it.  So she started getting it once or twice a week for the past 3 weeks and because she was enjoying it so much the amount of PB I put on the toast was more than her sandwich and at the same time I started increasing that amount too.  I was just feeling good that we had things under control with her food - we had a good rotation and were even able to give her some treats once in a while without issue.  Back to the PB - one night when she was really struggling with her teeth she didn't want to eat so we made her some toast which still didn't work so we put PB on it and she gobbled it up and asked for more.  And so on....

So we maxed her out and she went full tilt.  Today she is only getting foods that are negligible and she had a detox bath before nap and will get another one tonight.  We are going to do our best to help her clear them out as fast as we can.  And I am putting the charts back on the counter to keep an eye on the levels we are giving her.  

Yikes!, glimpses and new doctor

With the exception of bedtime we are coming out of it but man the past few days have been atrocious.  All of the behaviors that disappeared when we changed Megan's diet and she started sleeping were back.  All of them.  She started screaming when we put her to bed.  At first it was just for 10-15 seconds and then it was 1-2 minutes and now it is 20-30 minutes.  She is screaming and throwing herself around and has earned her way back into the arm bands for the past 2 days.  She has a couple of almost bald areas now from just the past 1.5-2 weeks.  

In the beginning it was just the screaming at bed time and then on Monday she had a little bit of a rough day and started having issues in the car again and by Tuesday afternoon - whoa baby.  She was aggressive, defiant, pinching, biting, poking, pushing, going from happy to tears and pulling her hair out in a split second multiple times a day, banging her head, crying, not okay being left alone or even with me just in the room she had to be touching me.  We kept thinking her teeth were hurting her so bad that she was just losing it because she would flinch if I tried to check her gums.  

On Wednesday afternoon I had a phone call with her new doctor (more on that in a minute) and she said something that made me start thinking about things differently.  We weren't even discussing Megan's current situation it was just a random comment on something.  I knew that the medicine we had been giving her wasn't working.  When we originally realized she was waking up at night because she was in pain we gave her the meds we had on hand which was a dye free Advil, it was still flavored but we figured she needed something.  She got that medicine for 4 nights before I realized that it contains benzoates.  Megan had started being aggressive about that time and that is what benzoates do to her so I went in search of an alternative.  The only pain medicine I could find that was dye free, artificial flavor free and benzoate free was acetaminophen.  

We haven't given her any acetaminophen in years because of the potential issues it can cause in people with brain injuries.  I called her pediatrician and she said the amount and frequency wouldn't cause an issue and Megan needed something so we gave it to her.  It was only once a day, at night, except for when she started really struggling in the morning I gave it to her then and not at night that day.  Her pediatrician had warned me that it wasn't the greatest at helping with teeth pain and when Megan was still obviously having issues and then started flipping out on Wednesday morning I gave her a dose of the Advil and then......nothing changed.  It finally occurred to me that, though she was probably still having teething pain issues, the behaviors we were now neck deep in had to be related to exposure to something.  At first I thought it was a new food item but it seemed like an excessive response and FINALLY after the doctor made her comment I thought...hmmm the acetaminophen.  Sheesh.  

The initial aggression and screaming was likely caused by the benzoates.  The lovely behaviors that showed up a few days later had to be the new meds.  It fit the timeline.  Wow.  So we stopped giving her meds. She hasn't had anything since 9:30 yesterday morning and she hasn't had acetaminophen since Tuesday morning around 11 and she is coming out of it - except for the flipping out in bed.  

What has been truly amazing about the past few days of madness is that even with all of that going on in her little body there were still glimpses of not only her sweet self but also crazy good progress.  She was happily selecting the correct animal when requested (horse, cow, pig, sheep), she was happily identifying body parts (eyes, ears, nose, mouth, chin, cheeks, forehead, head, hair, knee, etc) . She had been temporarily "grounded" from the blocks for repeatedly throwing them and when she went to get one I told her (from pretty far away) to stop that she wasn't allowed right now and she did.  She sat there, 2 feet from them and didn't touch them.  Megan doesn't like to "perform" and she doesn't typically obey when there are blocks involved yet she did both.  She also turned around and looked for something when I told her it was behind her.  She has never done that before, so she learned what it meant.  She will now also look at where my finger is pointing when I am trying to show her where something is.  Again, not something she has done before.  There are a few other things as well so she is continuing to progress despite the war raging in her due to the med mishap.  

We are always searching for ways to help Megan.  We both feel that her salicylate issues are caused by a gut problem, maybe leaky gut.  She has had digestive issues since birth, she was a preemie, there were toxins involved when she was gestating...her gut needs to be healed.  Following the Feingold diet has showed us what to avoid feeding her so that she doesn't react, but we have been walking blind with regard to what is right to give her and what we should avoid (unless we see a reaction).  We have been trying to find a good functional medicine practitioner and ended up finding so much more.  The lady that we will be meeting with on Monday (so excited we were able to get an appointment so soon) is a nutritionist, chiropractor, DAN!, craniosacral therapist and biofeedback.  She will be developing a treatment plan for Megan that consists of lots of testing to see where Megan's system is lacking things, etc and then telling us what supplements, treatments, etc are needed in order to help her.  We will no longer be guessing we will have data to know what she needs and what we have to avoid.   Not everyone responds to the treatment this way but a good portion of children find their voice after successfully cleanses toxins, replacing nutrients, etc.  We are hoping that this will be a huge step for Megan in her recovery from her birth.   

Sleep, molars and laundry help

We figured out what was causing Megan's recent sleep issues, she is cutting her 5-year molars.  Based on the timing of the rest of her teeth we didn't expect these to start making an entrance until she was at least 6, but here they are coming in before she turns 5.  Maybe it is the diet change and now her body is struggling less with processing things, who knows.  All of the signs were there, we just didn't put it together: her teething induced reflux started up again, excessive drooling returned, biting her fingers/hands so much that she was leaving bruises, messing with her ears, waking up crying.  Once we started giving her something for the pain she went back to sleeping through the night.  She has been up for the past 2 nights due to something we fed her on Sunday, so we are waiting for it to be out of her system.  Ugh!

Megan was in the laundry room with me last week and she helped me get the clothes out of the dryer and then she took the clothes out of the washer (we have a front loading washer) and put them into the dryer by herself.  It was so adorable watching her grab something, take a couple of side steps and then put it into the dryer.  Every few items she wanted to start taking stuff out of the dryer and putting it back into the washer.  She is at the perfect height for this task and man did she enjoy it.

Eat Make More

Megan hasn't been talking via her "talker" for the past couple of weeks, more just exploring it and occasionally saying "more". I opened up all of the words and she has been touching different ones and checking out what they say.  This is way less than she was using it and I just keep modeling and keeping on. The past three days she has said something that I thought was a fluke, except she keeps saying it.

Every single time she is hungry....."Eat Make More". I thought maybe because I say I have to "make" dinner, etc; but then I realized the picture for make is a cupcake. I think she is asking for cupcakes.

Fun day for mommy - great progress for Megan

As always it is amazing what some sleep will do for Megan.  She has slept for the past 2 nights and took naps two days in a row too.  This morning she was feeling so happy and definitely well rested.  We were sitting on the couch reading books with Megan's talker beside me.  She would reach for it and grunt, etc asking for it and I would get it for her.

I decided to work with her on a sign for her talker so she could ask for it without grunting and also when it wasn't in the same room; so the next time she asked for it I said "Megan, here is how you ask for your talker" and I showed her the sign with my hands and then helped her do it with her hands, then I gave her the talker.  The next time she started requesting it I said "how do you ask for your talker?" and then 3-5 seconds later she did the sign.  I praised her and confirmed that she said talker and gave it to her.  This scenario happen again, she grunted, I prompted, she did the sign; and then the next time she requested it I was just silent and ignored her.  She kept pointing and grunting for 20-30 seconds and then she stopped, worked to get her hand into the right position (just her pointer finger out) and touched her other palm.  She did the sign without me prompting on just the 3rd time she wanted it since I showed it to her; and then she BEAMED when I said "you want your talker".  She was so proud of herself and I was so very proud of her.

What was great was she did the same thing one more time, where she grunted first, I ignored and then she did the sign and THEN she started just doing the sign.  She would do the sign, I would acknowledge it and she would smile.  Most of the time she didn't even want her talker, she would just push it away but she was so very happy that she could ask for it and I understood her.  She did this for the rest of the day - just doing the sign and asking for her talker.

After nap, though she didn't sleep today, we played with her tea set for the first time. Meaning we played with it correctly.  I showed Megan how to pour the "tea" from the pot into the cups, and then stir and drink.  She was pouring into my cup, her cup and sometimes Sam's cup.  She would stir her cup and drink from it.  She was doing great.  I had so much fun, it was really difficult not to tear up because it was such a big step for her to just sit there and play with me without throwing, putting the toys into her mouth and to be pretending so well.

Catching up....

Megan has been having sleeping issues again for the past few weeks.  It all started when we went to a family party and the house we walked into was so saturated with fragrance (candles burning, air freshener, perfume) that Megan started having a reaction with 1-2 minutes of entering the house.  We got her outside in less than 5 minutes but the "damage" had been done and she had the worst night she has had since starting the new diet.

It took her 4 days to get past the exposure issue and then two days later she was walked through a store's perfume section and she didn't sleep that night.  Since then she has slept off/on for the next week and then has been up every night for the past 7 nights in a row.  She has been handling the sleep deprivation pretty well until this morning.  She was back to her old behavior: nothing making her happy, throwing everything she could get her hands on, non-stop, biting her brother if he got anywhere near her, just miserable.  Thankfully she was able to nap today and she was much better this afternoon.

Because of the sleep issues she hasn't been that interested in her talker and I haven't pressed the issue until this week.  I decided to close down the options on the screen and simplify working with it again to get her using it again.  We worked with it for just one afternoon and she was back on track.  She is back to talking more now too.  In fact she is saying "mine" or rather "MINE" quite regularly now.  It started three days ago when she and Sam were playing at the water table.  They have several scoops and cups to play with and her favorites are the measuring cups.  There are plenty for both of the kids - in fact there are 2 of each cup but she still doesn't want Sam to play with them so when she sees he has one she wants it.  He is generally compliant because there are 8 of them so he just grabs another one and lets her have the one that she wants.  Well for some reason, maybe because he was tired of giving up the one he had, she asked (yelled/grunted/reached out to grab it) for the cup he was holding and he wouldn't let go of it and she then said, very plainly and LOUDLY "MINE!".  He dropped it.  I happened to be recording them at that moment so I caught it.  She has continued to say it since that time and most of the time it has been related to wanting the measuring cups.

Yesterday we got a new pool for the summer.  Previously we have had little ones and this year I decided to get one that is big enough for everyone to get in together, but shallow enough for Megan to be able to sit down.  She loves being in it so much.  She will stand up and play and play and play - dumping water on her head, throwing water at people, splashing and telling Sam "mine" when he tries to take one of the measuring cups we put in the pool.

She loves all of our new outdoor toys as much as Sam.  She loves playing in the house and climbing the slide and of course the jeep.  She loves to just sit in it and play the music.  We got her a transition swing - one that you sit in and that still buckles but that can change to be used without a buckle when she is ready.  It is nice to be able to get her in it without scratching her legs like the current one can do.

She was doing well with her ABA therapy - she had 3 "get to know you" sessions and was supposed to start the real work 2 weeks ago but her therapist came down with the flu.  She really likes Michelle and responds well to her so I am looking forward to seeing how things go when we can get started.

Megan and Sam are playing together so well lately (except for this morning).  They are not just playing beside each other, but with each other.  They are playing chase, pushing each other on toys, making each other laugh and playing with toys together.

We are seeing that she is comprehending and able to communicate new things lately.  She was hurt the other day and I asked her to show me where it hurt and she picked up her foot and gave it to me.  I didn't see anything but Sam said "sissy dropped the block on her toes mommy".  She has done this before, showed me what hurt, but I wasn't sure it was correct, clearly it was.  I have gone into her room during nap to change her and asked her if she was dirty and gotten a "yay" or "nah" and each time she gave the correct response.  She is doing really well with following directions too.