Mermaids Mom here! With an update!

[mom22kids]

Hello!  I haven't been here in a while and I was only a sporadic poster when I was here but some of you may remember me and my daughter's story.

 

For those of you who missed it here is a quick synopsis:

 

Almost 3 years ago, when she was 10 my dd was no longer able to swallow food.  Prior to that there were issues with anxiety and sensory things but the inability to swallow was what started the nightmare. 

Just a month or so before that she was diagnosed with ADHD. Prior to that she had been a stellar student and the difficulty in class came on gradually - of course we assumed it was becoming evident because the work was getting harder.

The journey to find someone to help her swallowing issues wasn't easy and as you can imagine most medical professionals believed it was an eating disorder and/or anxiety/psychological. Thankfully we found a STELLAR Occupational Therapist who immediately knew what was wrong with my daughter! As a result we soon received the diagnosis of Sensory Processing Disorder.  There was no question she had sensory issues. From a very young age we noticed that she hated socks and loud noises etc. Worth noting here that at 3 years old she also had her first bout of constipation. They thought it was appendicitis and no matter what we did we could NEVER get that constipation to sort itself out. It has been a chronic issue.

So...she did LOTS of therapy to learn how to swallow again followed by 2 years of food therapy where she learned to like food again.  During that time she really started to decline neurologically.  We did a Psych Ed assessment and it revealed a very low processing speed and math LD along with a host of other deficits.   We also noticed some abnormalities in her movements and coordination and we uncovered how disorganized her brain was in terms of gross motor movement. At that point she was also diagnosed with Dyspraxia. 

At this point we just keep layering on the diagnoses BUT none of them ever ticked all the boxes. Sure every time they said a new thing I would be like "OH!!! that makes total sense! that explains xyz!" But like I said - never did any of these fully explain what we were seeing.

School became increasingly more difficult. She was having issues with memory and focus.   She was also having issues with depth perception and her eyes distorted the image.  We took her for testing and of course she was diagnosed with Visual Processing Disorder.  Again...AH! finally that explains things we were seeing!  Soon after we noticed that her hearing was NOT what it should be.  We took her for testing and sure enough she was diagnosed with Central Auditory Processing Disorder.   She scored only 40% comprehension in one ear and 65% in the other and was fitted for assisted listening devices. Again one more piece to the puzzle - and yet I was now starting to realize that she didn't have ALL these things wrong with her!! No way! They were the symptoms of something bigger. So I began to research and understand SPD ad Autism. Lo and behold when I really began to understand it properly it made sense that all of her sensory systems were struggling.

I became somewhat content that we had peeled back the onion as far as it could go and that anything that was still "unresolved" by the diagnosis of SPD was just unexplained as of yet.

Then she was struck by Vertigo and she started having mobility issues and numbness in her extremities. By now we were seeing a Neurologist - in a quick period of time her condition deteriorated to the point that was avoiding using stairs and swimming. Anything that involved her legs. All her friends were out walking to the store for snacks and she was on the couch. She was chronically fatigued and SPD didn't explain why. Or why it was getting worse. SPD is comorbid with many issues. We began to suspect a  type of CP, MS and a host of other scary illnesses. The brain fog and confusion that she drifted in and out of made her unteachable. She had days with great clarity and then days that she was unable to answer 5-6 word questions. "Do you want chicken or pizza for dinner?" had to be broken down and explained further.

The Neurologist diagnosed her as Gifted twice exceptional and said that from a Neurological perspective that there was NOTHING wrong with her.  He said that what she is reporting as her symptoms are neurologically impossible. Nor do they correlate with any degenerative diseases. That what she was experiencing was the result of being gifted AND having one or more brain based disorders (she was now officially diagnosed with MANY) and on a whim he ordered blood work to check for B12 levels and Iron.  And they came back as deficient. We immediately began B12 injections and Iron supplements and noticed a slight improvement.

So in total she was diagnosed with (in order):  Chronic constipation, anxiety, insomnia, ADHD, Dysphagia (swallowing) SPD, OCD tendencies, Dyspraxia, Visual Processing Disorder, Auditory Processing Disorder, Gifted2e, Vertigo, Low B12 and low Iron. 

At one point there were no more tests we could run, no stones left unturned.  I had dedicated 2.5 years to bringing my daughter back to the girl she used to be and I was faced with the reality that I now had to stop trying and start to create a new normal.  Her education was modified.  She qualified for disability and was legally given the classification of disabled.  We had put her through so much and had no answers.

She started grade 7 in a new school and it was such a success initially. The B12 and Iron were helping with her energy and she was making so many new friends. It felt like - this will be OK. We can make this work.

Four months later I no longer accepted it.  Just like before the fatigue crept up slowly and insidiously. If she went to a sleepover on a Sat night she was bedridden for 3 full days as a result. She was so confused at the new school that she needed to be assisted to get to classes as she couldn't remember where any thing was. She would have to have a sticky on her desk that said MONDAY. But it didn't even help. She asked all day long "Wait what day is it?" but it was evident she didn't understand the answer.

The strangest thing was in other ways she was improving. The therapy was actually helping! She was learning to tolerate socks and was eating so many new foods. But there was so many ways that she was getting worse that it was confusing. I remember saying to the therapist "In some ways she is getting WORSE since we started therapy" She would say "No she is just more comfortable telling you about it now" or "You are just more tuned into her now". And it made sense-ish??

I remember sitting in an IEP meeting where they discussed the "new plan" to modify her entire education so that she could "keep up". They were going to dummy down everything. I was so grateful and so angry all at the same time. She was tested as reading at a University level and was so bright but it was so unreliable and lately she was confused about basic daily living. I knew that something was slowly stealing my daughter and that I had to stop it. I also knew there was no one that was going to help me so I decided to have one more kick at the can and try the ONE thing that I had wanted to try for years but was unable to because of her eating issues.  I decided to put her 100% Gluten Free. 

Thanks to years of therapy she was now willing and able to tolerate and try a variety of textures and tastes and smells and she was motivated to try anything.  No sooner did I start researching Gluten Free when I stumbled across the top 10 symptoms of Celiac and read about my daughter. 

At only ONE month in the difference was astounding!  Her brain fog had almost entirely lifted and she no longer had difficulty with auditory input.  At 6 weeks she stopped wearing her listening devices and is no longer bothered by most sensory input. Initially... she just had no more stomach aches. Then, the brain fog just went away. She has snappy comebacks and is asking intelligent thought provoking questions. Not "what day is it?"  After only 6 weeks she is a completely different person. It is like someone reached inside her and turned a switch back on.

We believe she has Gluten Ataxia. It is a type of Celiac that not only has intestinal damage but damage to the Cerebellum. Going GF will actually allow her body to heal itself and she will hopefully return 100% to "normal". Apparently whatever is present at the 2 year mark of healing is not going to resolve. So we know we have a LONG road ahead of us.

All this to say - I was SKEPTICAL that Gluten could be this powerful and damaging. My daughters case is unique... but not. I have learned so much about how destructive Gluten is for some people and in many cases the symptoms are things like: depression, low self esteem, rage, irritability, lack of control mentally and physically on and on. Digestive issues are NOT always a problem.

I am now convinced that anyone who struggles with anything - dandruff to schizophrenia should consider going GF on a trial. I seriously doubted that this was the answer but I was so wrong.

Sorry this got long and thanks for reading if you made it this far!!

[Monica_in_Switzerland]

This is a heartbreaking story, but thank God she is on the road to recovery!

 

My son had non-celiac gluten intolerance diagnosed at age 4 (high blood antibodies, but no intestinal damage).  He had much more typical symptoms- tummy aches and constipation.  

 

While I don't think gluten-free is a panacea for everything, I also think elimination diets, in the grand scheme of things, are such an EASY (comparatively speaking), reversible thing to try when doctors run out of ideas (or, ideally, well before then!).  Going paleo, which eliminates most of the big offenders, is simple, and either it will help or it won't, no harm done.  

[Guest]

It's devastating seeing our kids struggle and feeling powerless to do anything about it! Good to hear your daughter is doing so much better and that you were able to find a solution that helped.

[PeterPan]

I'm glad you finally got an explanation!! I had been thinking about you and wondering how you were doing. :)

[mom22kids]

This is a heartbreaking story, but thank God she is on the road to recovery!

 

My son had non-celiac gluten intolerance diagnosed at age 4 (high blood antibodies, but no intestinal damage).  He had much more typical symptoms- tummy aches and constipation.  

 

While I don't think gluten-free is a panacea for everything, I also think elimination diets, in the grand scheme of things, are such an EASY (comparatively speaking), reversible thing to try when doctors run out of ideas (or, ideally, well before then!).  Going paleo, which eliminates most of the big offenders, is simple, and either it will help or it won't, no harm done.  

I suspect if we had been smart enough to investigate her tummy aches and constipation at that age we could have potentially prevented this entire nightmare!  So glad you caught it early!!

Edited April 14, 2017 by mermaid'smom

[mom22kids]

It's devastating seeing our kids struggle and feeling powerless to do anything about it! Good to hear your daughter is doing so much better and that you were able to find a solution that helped.

Thanks!!  How are you!?  Hope all is well on your end as well!

[mom22kids]

I'm glad you finally got an explanation!! I had been thinking about you and wondering how you were doing. :)

Yes it has been a God send to watch her recover so quickly!  In such a short period of time she is easily over 50% returned to "normal" in many areas and further along in others. The worst offenders are the symptoms that have had the greatest improvements so we are thrilled!  Thanks for thinking about me!

[Guest]

Doing well, thank you!

Hope you are doing well too :)

Edited August 14, 2017 by Guest

[mom22kids]

Doing well, thank you :) We have evals coming up. On the wait list for now but it appears that my 8 yr old's disability was approved. Waiting to find out more on that. It was from you I first found out about it :)

 

We have been gluten and dairy free for 5 yrs. I wouldn't go back on gluten if they paid me! We didn't see anything drastic like in your case but we have seen many benefits in many ways.

 

Hope you are doing well too :)

Awesome!  Happy to hear that you got approved!  It isn't much but it helps!!

[OneStepAtATime]

I do remember and have wondered what happened.  What a long, hard, slow, frustrating/frightening/depressing, slog through the world of "What is happening to my child?"!  I am so sorry you and your child had to go through that and so happy to hear that dramatic improvements have begun to occur.  Wow.

 

 What is sooooo frustrating is that the medical profession is so compartmentalized and they don't work as a team.  It is hard to see the big picture for focusing on the little (and big) trees.  And most doctors do not work together to look at not just certain specific individual tress but the rest of the trees as well and to try to see the forest.

[Heathermomster]

Sounds great!  Happy to hear that the issues are starting to resolve.

[kbutton]

What fantastic news! And yes, I remember you had a lot of stuff going on!

[Lecka]

This is great news! I am so happy for your family :)

[mom22kids]

I do remember and have wondered what happened.  What a long, hard, slow, frustrating/frightening/depressing, slog through the world of "What is happening to my child?"!  I am so sorry you and your child had to go through that and so happy to hear that dramatic improvements have begun to occur.  Wow.

 

 What is sooooo frustrating is that the medical profession is so compartmentalized and they don't work as a team.  It is hard to see the big picture for focusing on the little (and big) trees.  And most doctors do not work together to look at not just certain specific individual tress but the rest of the trees as well and to try to see the forest.

Yes that is the most frustrating part!  I could go around and around with all the "should have, could haves" but I would make myself insane.  But it is REALLY sad and depressing that NO ONE every suggested celiac?!?!

 

Thankfully she is young enough that we may be able to resolve most of the issues.  So that is the focus.

[mom22kids]

Thanks everyone!!

 

[Laurie]

 

   

All this to say - I was SKEPTICAL that Gluten could be this powerful and damaging. My daughters case is unique... but not. I have learned so much about how destructive Gluten is for some people and in many cases the symptoms are things like: depression, low self esteem, rage, irritability, lack of control mentally and physically on and on. Digestive issues are NOT always a problem.

 

I am now convinced that anyone who struggles with anything - dandruff to schizophrenia should consider going GF on a trial. I seriously doubted that this was the answer but I was so wrong.

 

 

 

I agree with you!    

 

Have you read Dr. David Perlmutter MD's book Grain Brain?   He's a board-certified neurologist and he would agree with you as well.   

 

Best wishes to you and your daughter!  

[mom22kids]

I agree with you!    

 

Have you read Dr. David Perlmutter MD's book Grain Brain?   He's a board-certified neurologist and he would agree with you as well.   

 

Best wishes to you and your daughter!  

No but will absolutely look it up!  We are so new to this that I have been spending all my time learning what to feed her, new ways to eat old faves etc.  I am really interested in the how's and why's!  Thanks!

[Guest]

nm

Edited August 14, 2017 by Guest

[Guest]

nm

Edited August 14, 2017 by Guest

[mom22kids]

You could start by deciding on an all purpose flour blend that works for your daughter. I started by buying gluten free books and trying out the blends they had before coming up with my own.

 

My main flour is sorghum. Then I blend in garfava, some whole rice, and some white. I also use other flours like oat flour, but if she has celiac you want to be sure she is OK with oats. Trial and error, that's how you figure things out taste wise ;)

 

Check your library for books. There are many different flours that are much more nutritious and healthy than white rice. I also bake my own bread (in a bread machine for the most part). I use a basic recipe from the Bob's Red Mill website and change the flours. The starches are basically 3 (potato, tapioca, and corn) but there are specific quantities to make it work, which is why I didn't try to come up with my own. I don't like wasting ingredients, so I use other people's blends as my starting point and only change the flours.

 

Check out Vitacost if local prices for gluten free flours are too high. They ship to me with a fixed shipping cost regardless of weight, so I place large orders and stock up. I compare prices to local prices and Amazon before I do. Our grocery bill nearly doubled when the boys and I went gluten free and we started eating healthier. I even buy large size bags of organic herbs and spices to save some money.

Thanks!  I am usually one who makes most foods from scratch (and I have bought some flour blends) but I am oddly "scared" to do any baking yet! LOL!  I'm not sure why but I have found a few yummy cookie and cake mixes that I keep using.  I think I was afraid I was so ignorant about GF baking that I would ruin everything.  More importantly I wanted her to think GF was Yummy and wasn't sure MY baking would be!  Now a few weeks in I am ready to start experimenting with some recipes.

 

And yes about the cost!!  MAN!  I did learn that in Canada you can write off the cost of the difference of the gluten free foods under medical costs.  But you need a Dr's note stating you cannot consume Gluten. 

 

Thanks for the info!!

[Guest]

nm 

 

Edited August 14, 2017 by Guest