Melatonin is awesome!

Melatonin is awesome!  We've heard from many other parents about this natural method of effectively putting your child to a peaceful nightly rest with out needing some nasty drug with major side effects in order for him to get a good nights rest.  We chose to pick up one that is all natural, containing no animal products, and completely vegetable based and not artificially [which is the worst kind to use!] created.

I consulted other parents, doctors, nurses, and more to hear other feedback on this method of getting Colin to a peaceful nights rest during this gluten intolerance time in order for proper testing.  With everything going on and such little quality support we have, it was time to try an alternative holistic proven method.  Wow, does it work!  I was skeptical at first.  I gave him it broken up into a reeses peanut butter cup at 6pm letting him know they're chocolate chips and that they're part of the reeses when he asked. After all he has an OCD phobia about sleep and even small honesty would set him off to absolutely despise this supplement.  It wasn't any further than 7:59 with him all dressed up after shoving his mouth full of food all evening [he becomes this way when he's on gluten diet as his stomach hurts, constant runs, cramping tummy all the time thinking he's hungry, his stomach becomes huge out of bloating from gluten problems, etc].  He crawled into 'the thinking chair' and immediately not even a minute later was snoring hard solid logs!  2 nights in a role and not even a minute later than that exact 60 minutes, I'm no longer a skeptic!  It's like clockwork for him.

Here is an image of him passed out cold after his first dose of melatonin:

Halloween as a family

 Images from Boo bash near where we live which is an awesome community event we attend every year.

Colin as Mario from Super Mario bros. while Braeten is wearing the traditional chicken costume that I made for each of the boys to wear at the same age.  4 times this costume has been worn now for each of my boys!

Conner was 'black' from Pokeon

Logan a cowboy for boo bash but wolverine for Halloween night.

 Proud mama dressed up as zombie Katy Perry with the most adorable chicken ever, Braeten!

 Proof that Colin has 'day blindness' where he can't see or his field of vision is extremely narrow to the point of being completely blind during bright sunlight.  Hence, why his eyes are wide open and won't flinch while you swipe your hands in front of his eyes.  Achromatopsia is a genetic condition which commonly comes from incest.  Which is why the geneticist as well as his Pediatric optomotrist believes the Reichert 'royalty' might be involved in this rare genetic mutation.  As royalty in the Reichert side heavily encouraged incest amount 'royal' family.  There is also color blindness on a 2nd cousins side of the Reicherts with additionally having hearing problems which might potentially explain Sticklers..possibly.  This could come from more than 1 side of family as told from geneticist. 

 Colin loves his Thomas candy bucket all dressed up at Mario.  He has started to make less eye contact now, smaller word answers, and severe regression within speech.  However, he has potty training but they've told us to watch that over the next 1-3 years to see if there might be any regression that would let us know if CDD is going on. 

One of Colins many obsessions.  At Fred Meyers he has to hug each pole before we enter the store or exit the store.  At times he's okay at least touching it.  However, he will know if we missed one or skipped one in which a meltdown occurs due to his OCD like behavior.  These meltdowns you can't just 'snap' an autistic child out of.  No real redirecting either.  You must feed the OCD behaviors to what it wants in order to be satisfied as it's calming to him.  Just like his spinning and hand flapping he does all the time is a form of stemming.

Gluten intolerance with Autism is exhasting!

Today is really an attempt to rest, recover, and recoup lack of sleep that didn't happen last night as Colin was screaming, fussing, constantly inconsolable like he was around 2-3 years of age.  He'd have these massive night terrors but now I'm starting to think there's something more to it.  He flops around from side to side trying to get comfortable but still gets upset, starts screaming, crying, and it's like he's in physical pain but he can't explain it to me.

We've had to put him back onto a gluten based diet to determine if as well as how severe this diet is on his body.  It's honestly night and day as just as we started to see our boy come a little out of his world he's forced even harder back into it, if not further into this realm.  He has started to use 1 word questions, answers, concerns, responses.  Meltdowns are greater from 15-30 minutes to typically off/on within a few minute breaks in between of hour long non stop meltdowns.  Trust me, it's easier to read about it and this isn't being blown out of proportion.  NOTE: If anyone ever wants to say that we're "blowing these medical conditions out of proportions," they have their head far underground in the sand!

What is really hard is to see him using fewer and fewer words.  Yesterday was a peak of frustration for him where I asked him if it was hard to say words he wants to say and he shook his head yes.  He has been using only 1 word for everything right now for which I have to remind him with patience "use your words" where he'll become angry and start pointing at everyone angrily with out the words to say something about it.  This is not how he's been and even many new medical professionals we have over seeing him now don't have this history with him which frustrates me greatly to have them have that first hand recognition of what all he's gone through and dealing with.

I think at this rate it's time to ask the Doctor to speed up this blood work testing and get that done sooner rather than dragging this one.  Otherwise, it's like giving your son crack and expecting him to be a normal functioning child.  It just doesn't work!  It's exhausting between everything else we have to juggle limiting us to not going out or doing much because it's that much harder to juggle.  Forget having 4 kids, we've got that figured out in public.  It's juggling Colin running off playing in puddles or filling holes with dirt 30 yards away from us because he's more into that than walking and staying with us.  Halloween for example, he was no longer interested in Halloween trick or treating once he saw the stream of rain water run off...that was that!  He was done with candy, Halloween, trick or treating, and was all about the rain water run off on the road.

Not much more to say.  I have loads of homework to complete this weekend before another College week.  I don't want to do anything last minute so it's time to start it all now.  Colins super fussy and Mikes out working which means it's up to me to juggle it all at home.  Colin typically doesn't pass out until midnight with these sensory problems and if he even sleeps at night at all--and yes, he's 4 years old.  Thank God I've raised him in an attachment parenting as touch helps Autism and cosleeping still helps him calm down.  He'll even snuggle Braeten or Braeten will try to wake him up to play.  It's super cute, and I'll enjoy it while it lasts as this is never permanent and life passes away too quickly!

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On a side note, I've edited my blog in the past to attempt to please some people who are never satisfied and always complaining about anything I do.  I WILL NOT be editing this blog.  What says, goes.  It won't be edited as nothing I do makes them happy and really I'm in this to look out for my family.  Thus, enjoy the blog if you are once again reading this blog.  This is mine, not yours to edit as same goes for my life. 

The next step

The next step in the process for Colin's visits will be Occupational Therapy as well as Physical Therapy.  Occupational Therapy will help his Sensory Processing Disorder, Physical Therapy will help with his muscle tone in order to prevent joint damage even Rheumatoid arthritis as Stickler Syndrome is a degenerative disorder the Physical therapy prevents the hyper mobility of his joints furthering into injuries or more body damages.  Combined together, I hope he'll start to use his fork and spoon again.  He has gotten to the point of completely rejecting them altogether which leads to him needing to be fed assisted otherwise he has a complete meltdown with horrible anxiety as it frustrates him greatly.  It's not just something you can have a child with these problems 'snap out of it and just do it!'

Also, today is his third day back on Gluten foods as he has a blood test in 2 weeks.  During this time his anxiety, as well as hysterical behavior, stomach diarrhea with no regular stools, and lack of 'listening' has severely night/day increased.  I can't even explain how exhausting this behavioral change is!  It makes all of your senses entirely exhausted and completely out of energy not even at certain portions of the day.  When he's been on a strict diet his behavior has improved, communication has opened up, less fits and fussing, more eye contact, more focus in communication, and less sensory problems even meltdowns.  Not to mention less complaints about tummy issues and a whole another list full.

On another note, we're going to also get Logan screened for Autism as well as Sensory Processing Disorder as he has always had these similar complaints the previous pediatrician had turned us down on..like everything else he always turned us down on.  However, we have to still get some major Colin issues out of the way before we can even start to tackle Logan's again.  At least we're in good hands with a great medical 'support' system. 

I have to run to my health & fitness class for this evening.  2 midterm exams yesterday has extremely burned me out mentally and physically.   However, there isn't such thing as rest when it comes to being a parent of 4 kids--1 with special needs in particular!  Everyone have a wonderful evening.

On a side note, is it already Halloween tomorrow?!!! WHOLLY GUINNESS!!!

 

IEP results today

Today was the IEP review with Colin's Psychiatrist.  She is in the process of setting up another full clinic once again to gauge more activities and help for her clients.  We all feel very comfortable with her care and will continue on seeing her in conjunction with the Neuro Psychiatrist that I was able to not only get the insurance to approve with the help of the Psychiatrist but also the one we could get normally doesn't accept our insurance at all but he approved this one due to Colin's rare CDD possibility.  Such a huge relief after fighting the Pediatricians office yet mostly the insurance declining it for the past 2 weeks over as they "didn't see it necessary" for his care.  I've had enough of the Dr's saying no to me, and no will not be part of their vocabulary when it comes to something so important!

Moving on, the diagnosis is pretty much as discussed with her over the phone.  As mentioned she says he is within the Aspergers criteria thus diagnosing him with that.  I can't recall what the name of the 'scales' of 'criteria' from the questionnaire was. However, he did rate 139/150 [75 being the entry for the Aspergers criteria requirement which shows how high on that he lists] for one and 24/30 with 12 being the minimum requirement for diagnosis [?12? I think..].  She believes he might just have mild Aspergers and wants to observe him in a school setting to see how he social response and academically responds to the environment.  If it doesn't, or further regresses that would indeed start to show that he just has the average but very high functioning healthy socialization with his Aspergers or he might have CDD as things could further socially decay.  He has a diagnosis now, however, he is due to have a change in his Diagnosis within time.  As they say, only time will tell.  It's so hard waiting it out and at this time I find myself just enjoying those small things that used to occasionally bother me and even the repetitive discussions he rambles forever about just to carpe diem as who knows what the future might hold.  Enjoy it now, as no one is guaranteed tomorrow or to be guaranteed it to be the same as their yesterday. 

He also has Sensory Processing Disorder which obviously our next step we've been putting off is Occupational therapy and Physical Therapy.  We've completed most major diagnosis so now we're working towards the daily maintenance within our schedule since our schedule is less intense with appointments as it's been.  I would love one week with out 1-2 appointments or the need to speak with a medical professional.  My phone is always off the hook now!  Even while I was in NYC I was reciving inbound phone calls from school about my son Logan sticking his tongue at the bus driver to insurance declined the Neuro Psychiatrist.  My job is never done. 

She further discussed that he is looking to have signs of not only anxiety due to his Aspergers, vision problems, and Sensory Processing Disorder..but also he's showing signs of parent attachment disorder.  The Psychiatrist acknowledged my healthy attachment with Colin [well, cosleeping, long term breastfeeding, and attachment parenting has been a huge involvement with Colin in every aspect since birth, and taking time off from not working has been a blessing towards giving my son this deep base to life. Because of this, he responds to touch well as soothing which is rare to have within Aspergers children or even adults.  Thank God for all that time to 'attach' with my child!  I will have plenty of time to return back to working once this important basis in my kids lives is established. College or now!].  She as briefed on the situation between Mike and his parents and how they're towards me.  She is going to see both Colin and Mike to work upon attachment parenting and reconnecting and hard-wiring those connections of parent to child before further damage or the same path laid before Mike continues on between Mike and the boys. 

Fathers relationships between children is so important.  It's even more important for a father to be a positive mature example to their kids and know the detailed in's and out's of how to approach their kids in many aspects.  What more of a challenge than a special needs child with Aspergers plus all the rest going on with him?  Our family needs any healthy aspects as possible, not destructive or history to repeat itself again. Attachment Parenting Disorder If you think your family might have a problem with this as well, it's important to seek help and have your child be reassured.  The Psychiatrist even informed me that no matter how deep of a bond or attachment I have with my child, it won't make up for the detached other parent half.  Mike is open about this and excited to get started in reconnecting with his son.  He has been slaving away at college to score many 4.0's or make income that his relationships with his kids have slipped.  The more outside lack of support the further his presence with them has decayed.  I'm happy to see this possibility for that to be restored after all we've all been through.  If you think your family has something like this, get it checked out the sooner the better.  Healthy connected attachment parenting is so rewarding and will end with positively confident children not insecure false confident children. 

On other news, I have a 4 chapter midterm test on Monday along with 6 other pages of homework that I'm 4 pages into at this time.  I need to cram more information back into my brain and hope it sticks until I take my test on Monday!  I'm returning back to work on my Business Degree that I took a break off.  The last time I attempted to return to college was the same day I found out that I had placenta previa with Colin.  I was about 13 weeks along in his pregnancy, just laid off of work a few weeks prior to becoming pregnant with him, sitting down to discuss with a college advisor about transfers from previous college I've been attending and the degree of choice to attend classes.  I was receiving unemployment so my attempt was to score the free college tuition while on Unemployment.  That option fell through once I left the advising appointment I had bleeding for the evening and off/on for the next week that placed me on bed rest for about a month.  It was scary, but things turned out safely as my placenta 'migrated' out of the danger zone and bleeding stopping.  It was traumatic enough that I've took that time off from returning back into college. 

Once I had him I knew it wasn't time to return back to work yet as there was something 'special' about his learning abilities as he'd suck information in super quickly.  For example, by the time he was 16 months he'd say large words like umbrella and be able to tell you and point out what is upper case or lower case A-Z letters as well as sounds! Now with college, it's very refreshing to be back to work towards the ultimate life changing..and challenging goal!  This time with no pregnancies, but just kids medical problems to juggle now.  I just hope to find, afford, and juggle colin attending Pre-k now prior to Kindergarten to determine how everything will work out for him in Kindergarten.  

I'm off to study now.  Everyone have a wonderful evening and adventure filled Halloween week!  I know we will here.  We just visited our local pumpkin patch today.     





   

Bloodwork, and more tests!

Colin had an appointment today with his regular Pediatrician to go over what all needs to be outlined regarding his stomach issues he's had since birth.  To sum it down, he has had continual GI issues with diarrhea since birth and never a solid poop unless he's overly constipated due to not drinking enough.  As the Pediatrician had discussed, this is extremely common with kids on the Autism spectrum to have tons of stomach related issues in terms of Diarrhea or having a 'cramping stomach' all the time.

We covered his 60 questionnaire to determine what might be the sources or what tests might need to be further completed.

What was determined is that he needs to be tested for Gluten Intolerance which means he needs to go back onto a gluten filled diet over the next 2 weeks in order to be tested for antibodies that would show up.  He has been off of it within the past 1-2 months so he fears the antibodies wouldn't be as present as they'd like or need them to be.  It's really frustrating to hear but we're having to put him back onto a regular diet in order to get a conclusive test for this.  It does make it a bit easier on cookie for the next 2 weeks but to think of his stomach issues, sensory problems increasing once again, and attitude and crankiness increasing once more is SO frustrating to think about again.  Being on this diet has not only decreased gluten issues but has also his behavior.  A huge results was his first solid normal poops ever.  Normally he always has loose extremely explosive ones which isn't fun during diapering years.  All in all, it's a step in the right direction even though it's a huge leap bag for his autism diet making us 'start the progress all over again' as they say.

Additionally, they'll check for any possible infections, anemia, vitamin imbalance, etc.  After all that if nothing comes up they'd send him out to another specialist which is a Pediatric GI specialist.  They might need to 'look' inside with a colonoscopy [spelling?] only within the worst case situation.    

Thankfully this doctor seeks progress even mentioning he researched some info prior to us coming in related to Autism and stomach related issues.  He wasn't aware of his Psychiatrist diagnosing him as she's been trying to reach him he hasn't connected back with her yet which is frustrating to hear.  I politely asked him to connect up with her to quickly review notes and help offer her info that might help with his diagnosis. 

Next step as most of these diagnosis and major appointments are out of the way is to start scheduling regular basis appointments with an Occupational Therapist, Physical Therapist to manage Sticklers Syndrome and prevent further joint/bone problems by building up muscle strength and tone, and I believe they also have a speech therapist who can help integrate that into the equation.  Monday, I also follow up with the Neuro Psychiatrist to determine when I can get into Providence as the Dr approved him as well as the insurance [phew!!!!] on a rare case due to CDD possibility.  They informed me the way to have the first appointment with them might be clear out in February since this place is in high demand within the Northwest as well as Nation.  We will continue to see the lady who diagnosed him as well as wrote up the IEP for further management of daily behaviors and such.  I highly recommend Elizabeth Fisher at Healthybonds.net as she has been a huge help with all this.

What also will be scheduled is his next ERG which is due next month to happen, and December his next regular check up with Casey Eye to keep observing his vision to prevent any possible tears, holes, detachments, vision decreasing, etc. We have been reassured that the school for the blind is local in Vancouver if anything is to happen.  That is refreshing to hear that really outstanding source of help in that department is that local to us.  This is what makes it hard for me to consider about relocating unless we can find resources like this within that similar area again.

Off to homework land and test studying as well as online test taking for me.  I have midterms next week as well as tons of homework assignments that need to be completed ASAP before they become too last minute which I don't like to do!  I was wishing to visit my parents this weekend and pick up Pumpkins they grew in their garden but homework has hindered that.  Now we can try to visit a patch local to us over the weekend if the time opens up.  I hope everyone has a wonderful weekend!

Insurance approvals?

This past week there has been plenty to juggle.  I returned from a much needed and first major vacation in my life thus far, from visiting NYC for Commicon which was amazing!  I met Sea Astin [spelling? From Goonies, Lord of the Rings, a few others..], 3 rows in the front for Christopher Lloyd Q&A, met and received Carrie Fishers autograph, and tons more.  I was even on the Good Morning America TV show outside one of the mornings where one of the cocky guys from the reality show Jersey shore winked at me..and I don't even watch their show, and ran into as well as visited with 2 good old friends on different occasions.  Some major tourist spots were visited such as Statue of Liberty, Coney island, Madison Square Garden, and so more I don't even remember now.  I went with some old coworkers from Sam Goody days years ago and it was well worth it!  It helped keep costs down as things are obviously super tight for me right now, while still having an amazing time.

I took 2 days off of college to go which makes me really hope that the next 5 weeks left of college I will accomplish with zero illness and zero further tardies. 

On another note, insurance approvals are extremely frustrating.  I won't go into politics of insurance or even what insurance we currently have.  I will say that Autism isn't really accepted in terms of insurance approvals. Hence, we've had to do tons of out of pocket costs for Colins screening.  He has seen 2 different people now with 7 different visits costing us around $800 out of pocket.  Thankfully we don't pay on car loans at this time which helps and some times money falls in place when you least expect it.  But what is extremely frustrating is begging the pediatrician to send over the paperwork and determine how they sent it over on the file to determine if they filed it the right way for approval or not.  This has been going on.  I finally found this lady who has dealed with special needs [autism in particular] for years and now that she finally made a diagnosis Colins pediatrics office calls back with an insurance approval for Autism screening for him!  "great news, he has been approved for screening with the Psychiatrist that the insurance previously declined him for" which turns out, since we had a diagnosis out of pocket then insurance was willing to pay for screening.  Why do I need screening after all that?  We have a new lady who is amazing, and don't want to switch to some cookie cutter method.  Besides, she believes in a holistic approach vs. medicating ever little problem which is huge to me as his parent.

We're also still waiting on the Stickler Syndrome insurance approval that was sent back in March.  They were quick to decline screening his brothers to determine if they have the gene.  Now we also have to wait for genetic testing approval from insurance to determine if he has the gene code for Anklyosing Spondelitis, as well as which Achromatopsia genetic code he has.  The Pediatricians office keeps on fighting me on a Neurologist for screening this CDD further.  I will go to another Dr is we need to but Colin will be seen.  That will tell us now if it's most likely a yes or no on that.  I won't take no for an answer on something as serious as that.  If you found out you might just have potentially 6 more years to enjoy your son ever speaking again and behaving some what independent..wouldn't you want to know ASAP to spend those last few years as much as possible focusing on your child?  I know I do.  Even now.  Even if he just has Aspergers, he could still lose his vision so I want him to 'see' all that he can as much as possible now.  Explore!  Go hither.  His life won't be over after these facts, but I'm all about focusing on what time you have vs. not even trying.

Right now we're waiting on SSI to be approved to help with all these medical needs that aren't being met.  Any money you might donate to us directly on that program [see the top right hand side of this page] will go towards any services needed for Colin.  And there is lots!  We're also working on saving up for a video camera to record him, as well as an electric piano to help his Autistic musician genius that is ready to come out and play!  He sings the most detailed little tunes between playing, eating, playing on the ipad, playing with his brothers, doesn't matter--there's always a song like you'd hear on a TV show.  Either it's super happy, sad, contemplative, or loveable.  He reflects his feelings through his certain tunes.  Even his Psychiatrist he see's now thought that was quite the skill he has and was impressed by how detailed to it he was.

On another note, we are also needing to schedule an ERG for next month.  I hope they have an opening as typically they're 2 months out.  They're observing his low ratio of Cone and Rod cells to determine if it's progressive or not.  Every 3 months they're going to get another rating.  I am hoping that this time we can better approach the IV situation once needed and local anesthesia that he doesn't respond well to due to sensory problems as well as his autistic side.