Thursday, March 27, 2014

Feingold Diet

Back in November Emery had a very severe reaction to our real Christmas tree. We determined it was a sensitivity to salicylates. Based on a recommendation from Emery's therapist, we decided to start her on the Feingold Diet. This diet basically eliminates all foods and products with natural salicylates as well as all food and products with preservatives and artificial colors, flavors and scents.

After completely eliminating these items for 6 weeks, you can add the natural salicylate items back one at a time to determine whether or not you have a sensitivity to that particular item. The idea is to pinpoint which items you are sensitive to and then avoid those items in the future.

Salicylate sensitivity can result in any or all of host of symptoms. The symptoms are broken down into 3 categories: Behavioral, Developmental and Physical. There are many symptoms under each category. A person can have any number of symptoms in any or all categories. The sensitivity can be hereditary. Emery exhibits many symptoms. Blake exhibits some symptoms. We decided to try the diet out for both of them.

It took a couple weeks to get prepared for the diet. Between reviewing and planning what foods they could eat and buying personal products that they could use, it was extremely time consuming. It did get easier once I became more familiar with everything. So our big Feingold start day was January 22nd. We planned to be very strict with Emery. With Blake, we decided to allow him to have occasional items outside of the diet to accomodate birthday and other special treats at school.

Living with the diet has been fairly easy with Emery. She doesn't see other kids eating different things and we try to be aware of what we eat in front of her at home. With Blake, it has been a bit harder. He complains once in awhile about the diet, but, overall he has been a real trooper. The entire family mainly follows the diet for dinner. For breakfast, lunch and snacks, only the twins follow the diet. Although we are all eating less processed foods because some of the items I am buying for the twins are enjoyed by all of us. I think consuming less chemicals is beneficial to all of us.

What changes have we noticed since beginning the Feingold diet? We haven't seen any sudden major over the top improvements like some of the testimonials I have read about. But, we have definitely noticed some changes. With Blake, we have noticed an improvement in his ability to focus on school work. We are having less difficult homework sessions and more pleasant ones. He appears to be understanding his work better and learning concepts a little quicker and with less frustration. We have also noticed an improvement in his ability to control anger. If he disagrees with us, he is able to just give us a deep sigh and move on. As opposed to arguing and back talking. We have always had a difficult time with Blake being mouthy and argumentive. He would be sent to his room for a 10 minute break quite frequently. Since the diet began, he has only had to go to his room a handful of times. He really seems to be in control of his emotions and is accepting that rules are rules and arguing about them is not acceptable. This improved behavior has been noticed at school as well. We really were not sure we would see any effect with Blake on this diet. I am happy we gave it a try because we definitely have seen some positive changes.

Noting Emery's changes has not been easy due to her dealing with the PANDAS issues throughout January, February, and well into March. Since mid-March when she began getting back to her normal self, I have noted some new changes with her that were not present prior to her illness. One definite change is that she is using "mama" for a purpose. She has always been able to repeat "mama" or say it when I walk into the room. But, now she is saying it when she wants my attention for a reason. This is huge for Emery. She has always communicated her needs by showing us. She is still showing me what she wants, but she is saying "mama" first and then trying to use additional words while showing me.

Another change I have noticed is Emery saying "I love you" back when someone says it to her. She also has been watching short Mickey Mouse shows on the Ipad and giggling while watching them. She really has never been interested in watching tv except to listen to the beginning song. So her ability to sit and focus on something seems to have improved. She is also very interested in doing her own self-care activities. She insists on getting her own toothbrush ready and brushing her own teeth. She literally pushes me away and says "no" if I try to help. She is washing and rinsing her own hair and brushing it as well. Emery has really never had much interest in doing these things on her own, so this is definitely a positive change. She has also completed all of the first part of her apraxia therapy by learning all of the hand signals for her sounds. We are now moving into learning consonant-vowel sounds.

So even though we haven't seen any instant earth moving changes, I am happy with the results of the Feingold diet thus far. I am now in the process of adding back specific items into their diet to pinpoint what items they are sensitive to. This will be a long process. I am starting with things that are inconvenient and/or expensive to purchase and then I will try some things that I know they miss.

Last week I forgot to write my weekly dose of amusement. So here it is this week.

I caught Blake being a little rough with Emery and I asked him what he was doing. He said he was trying to make her play with him. The conversation continued:

Me: "it doesn't look like she wants to play".

Blake: "she lied. she told me she would play with me."

Me: "she lied? what exactly did she say?"

Blake: "she said..... (instant realization that his sister doesn't talk).... uh uh, never mind mom."

Ha ha. Kids are too funny! Have a good week!


Thursday, March 20, 2014

Some Relief

Emery has began to show some improvement. She is up and about, playing and getting into mischief. She is happy and giggly.

Some PANDAS symptoms that seem to have disappeared:

  • Not going to the bathroom on her own.
  • Not wanting to take a shower
  • Refusing to get out of her rocking chair
  • Not feeding herself
  • Not wanting to leave the house
  • Not smiling
  • Head Banging
Some PANDAS symptoms that still remain, but at much less intensity:

  • Hitting herself in the head with her fists
  • Twitching her head to hit her shoulders (tic)
  • Being clingy
  • Pulling out her hair

It is such a relief to see her smiling face again. She is almost back to normal. She did great at school this week. She is doing much better on her at-home therapy. I am praying her remaining symptoms continue to diminish and she does not get another infection. This has been such a major setback for Emery. Things had been going so well for her. Two and a half months of this crazy illness. But, I will say, Emery seems to be picking up right where she left off at the end of December. I have not noticed any permanent regression. Which I consider a definite blessing.

To help with her remaining symptoms, we are putting her on a supplement regimen recommended by her therapist. We will be monitoring her symptoms closely and adjusting as needed. So much of this disease is trial and error. It is frustrating, to say the least. The alternative would be to put her on a long regimen of antibiotics. Unfortunately, this can cause a myriad of other issues. We decided to go the supplement route to avoid some of the less pleasant and serious side effects of long-term antibiotics. If the supplements do not work, we will have to revisit other alternatives.

For now, I am grateful to have some relief for Emery. I am also grateful to have my little girl (mostly) back. I am even thankful to be using her "no no" chair again! Although this might be short lived! Ha Ha.


Thursday, March 13, 2014

Where is Emery?

That is what I keep asking myself. Where oh where is my good natured, happy, silly little girl? I am seeing teeny tiny improvements here and there. But, she still is not herself. She seems content and happy sometimes at home. But sometimes, she just seems sad. At times she is even playing and having fun. But, the minute she has to do anything routine oriented, she starts hitting herself. We had a meeting with her therapist this morning and an appointment scheduled with a neurologist on April 3rd. I am so praying someone can eventually determine whatever it is that is causing her issues. Right now it just seems to be a process of elimination. It has now been over 2.5 months. I am frustrated, exhausted and most of all, sad. Her therapist is leaning toward a diagnosis of PANDAS or at least some type of autoimmune disorder. To test this theory, we are starting her on a regimen of supplements to see if we see any improvement. If we see improvement, there is most likely an autoimmune disorder. If no improvement, we are back to the drawing board. Hoping we find our little girl soon. I sure do miss her.

Now, for my weekly dose of amusement. This didn't happen this week, but every time I think about it, it still makes me laugh. A couple weeks ago, we were just taking our seats at Ashley's middle school musical, when Blake leans over and says to a classmate, "Hey Carly, my mom is a little crazy". I said, "Gee Blake, you know that is supposed to be a secret". Ha Ha. Does my son know me or what?

Have a good week everyone. Any prayers for Emery are appreciated.

Thursday, March 6, 2014


A reader commented on my last update on Emery. She asked if I had ever heard of PANDAS. The answer is yes. Both Emery's pediatrician and therapist recently talked to us about this condition. I had previously stumbled on to some information about it as well. Based on my research, it would appear likely that Emery may have PANDAS. We will be monitoring her closely for any more signs.

The National Institute of Mental Health (NIMH) describes PANDAS as follows:

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette Syndrome, and in whom symptoms worsen following strep infections such as "Strep throat" and Scarlet Fever.

The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep throat infection.

There is no test for this condition. It is diagnosed based on observation of symptoms. The NIMH describes an episode as follows:

Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity. Tics or OCD which are almost always present at a relatively consistent level do not represent an episodic course. Many kids with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep throat infection the tics or OCD return just as suddenly and dramatically as they did previously.

I am praying she continues to improve and her symptoms do not persist for months. This all began aound the end of December, so we are at the beginning of our third month. She did have one normal week in between the ear fluid issue and the strep throat. She is acting fairly normal at home as long as you do not make her do anything in the realm of a routine. I am slowly adjusting her back into her routine despite her obvious opposition to it. She is one stubborn little girl. Her therapist believes she has gone so long with not having to do what is expected of her, that she just wants it to stay that way. We think it is a combination of not quite feeling right yet and wanting to continue to get her own way. So she is ever so slowly starting to come around. She actually appears to be herself while at home doing what she wants to do. Try to make her to do something associated with a normal routine and she reverts to hitting herself, but not very hard. She will hold off doing what she is asked to do for a long time. The key is to hold out longer than her. Like I said, she is quite stubborn, so a lot of patience is required! This has been a long 2 months. We will get there. In Emery's time, but with some pushing along the way.

So, just to remain positive and maintain a sense of humor, I am going try to remember at least one event during my week that made me laugh.

My weekly dose of amusement: Receiving unsolicited parenting advice from a non-parent. Always good for a few laughs!



Saturday, March 1, 2014

Another Setback

Well, we had our normal Emery back for only one week. I noticed a week ago Monday, that she was rocking in her chair more and shortly thereafter, began hitting herself again. By Wednesday, it was bad. She was sobbing and had bruised temples. Took her in to her pediatrician thinking the fluid in her ears was back or she had an infection.

Ears were clear. No fever. No signs of any illness. I felt we were back to square one. What was wrong with our girl? By the weekend she was completely distraught. Sobbing, constant hitting if her hands were not restrained, not eating, not peeing and not pooping.

By Sunday morning she had not pooped in two days and not peed in over 24 hours. Called her doctors after hours line. They told us to take her to emergency. We had her at DeVos Children's Hospital emergency by 8:30 am. The next four hours were rough for Emery. She sobbed for the entire time with the exception of about 15 minutes when we were able to calm her by letting her bounce on the bed. She had two rectal temperature checks, had to be catheterized to obtain a urine sample, had two have 2 X-rays taken and a throat swab. Yes, a very hard morning.

The results were no urinary tract or bladder infection, clear belly and chest X-rays, and a positive strep throat test. So we finally had our answer. A strep infection. She must have developed a sore throat beginning the previous Monday and it was not noticed at her doctor visit on Wednesday. It is very hard to see into Emery's throat because she does a very quick "ahh" and that is it. It must have at some point turned into strep.

So she had a one-time double antibiotic shot at DeVos and we went home. On Monday, she was slightly improved. Smiling a little in her chair and even a rare giggle. She was still becoming extremely distraught when I had to get her out of her chair to go potty, get cleaned up, or brush her teeth. Extreme sobbing and numerous attempts to hit herself or slam her head into any nearby object. I have become extremely proficient at holding both her hands, protecting her head and doing everything else with only one hand. Yes, I have even conquered showering her with one free hand.

By Wednesday she was eating normal and acting very happy in her chair. She would even occasionally get out of her chair on her own to grab a toy or check out what I was making for dinner. But she still would go into sobbing and hitting fits, if she was made to get out of her chair.

She hadn't shown much more improvement by Thursday so I called her pediatrician. They wanted to see her. So I took her in. Throat was clear, no more infection. Ears were clear. Everything looked good. They said she still could be having leftover symptoms from the strep such as a belly ache, head ache or joint pain. So this could be why she is still having her hitting episodes.

It is now Saturday. She is up and about a lot more. She still will not feed herself. The sobbing when she is made to get out of her chair has slowly turned to a fretting, slight moaning noise. So I think we are heading in the right direction.

The one thing I learned during this past two months is that there is definitely something medical going on with Emery if she starts having hitting episodes or refuses to get out of her chair. Praying for a healthy and happy March!

Happy Baba Marta Everyone!