New Here -- and working in the dark

[Arrowhead]

Hello--

 

I'm new here-- and beside myself with worry.

 

Our teenage son is undiagnosed because he refuses to be seen by anyone other than his pediatrician. He has just turned 17 and for about 10 months has been displaying some dramatic behaviors that are very similar to those described in "Saving Sammy." My husband and I have been trying to work with our son's school counselors and teachers, but because he can cover up his symptoms at school, they think that nothing is wrong with him save, perhaps, for a case of ADHD, which they think accounts for the sudden, complete decline in his school work. He is bright and sociable. However, we have to beg him to wash himself at the sink and brush his teeth. (He has not taken a shower for over four months.) At home he steps over imaginary walls, twirls, walks backwards, and has great difficulty crossing lines or thresholds. Getting out of bed and dressed is a struggle every morning. Going to bed is the same. On some days he eats and drinks nearly nothing because he cannot make up his mind what to eat. He has difficulty initiating work on his homework assignments, so does almost none of it. He's failing at school. Some days he is incredibly defiant at home but never at school.

 

As a child he was occasionally anxious but never displayed anything remotely resembling what is going on now! We are frantic with worry, and everything is complicated by our son's refusal to seek treatment. We did bring up the possibility of strep infection being a possible cause when his symptoms first showed up in January of 2013 (our son had just had the flu), but our son's doctor said our son had no sign of infection and no tests were done.

 

Sorry-- I've gone on too long. Would love to hear any thoughts you all might have . . .

[mama2alex]

Hi,

 

Welcome to the forum. I'm so sorry your family is going through this.

 

So you have two people/groups you need to educate. It's not ideal to have to educate your pediatrician, but if you can't get your son to go anywhere else, you need to try. There are some good articles you can print out to show your doctor. You can also give him/her the book Saving Sammy and ask them to read it. You can take video of your son and show the doctor what's going on.

 

If you can possibly get him to a specialist - either a PANDAS doc or LLMD (Lyme-literate MD) - at some point, that would be ideal. I'm sure if you post the question, others who've dealt with this specific problem can throw out good suggestions for getting him there.

 

The video might also be helpful for the school personnel to see, if you feel comfortable with that. They would then understand that what they see at school isn't the whole picture. There are also articles you can print out that are more appropriate for the school to educate them about PANDAS. Some families opt to not really talk about PANDAS, the medical condition, and just talk to the school about the symptoms (OCD, ADHD, learning difficulties, etc) that require support from the school.

 

One good resource to start with is www.ocfoundation.org/PANDAS.

 

Start a new thread asking for articles to show both your pediatrician and your school, and someone will post good links.

[JoyBop]

Great advice mama2alex! I second all of it, and also my sympathy as I know how painful and scary this is for the whole family.

 

My suggestion is to pay for a phone consult with Dr. T. It is a great solution since he won't go anywhere or talk to anyone anyway. I can hardly get my 8 year old out of the house, I can't imagine trying to persuade an adult sized teenager. There are several docs that's are worth their weight in gold who will work with you from afar. I think that is your best option if your ped is not on board. I believe h1n1 can lead to PANDAS, it was mentioned at the conference.

 

Do take videos of your child as well. My son can also hide many symptoms out of the home but once he lets his guard down is a disaster. He appears to be extremely adhd and sightky anxious in school but they don't see what we see at home. I have shown videos to doctors and therapists so that they understand that my sweet adorable and charming child has a very different side that is ripping our lives apart. It has served us well.

 

A phone consult with a good and compassionate pandas dr should be able to get you the blood tests needed to make some decisions and get a picture of what is going on. If appropriate if could also get you the antibiotics and other treatments your child may need.

[JoyBop]

Sorry.....duplicate post !

Edited December 3, 2013 by joybop

[3bmom]

Posted Today, 09:17 AM

I am so sorry for what you are going thru. We all know what it is like to have your child's brain kidnapped. Would your son read "Saving Sammy", watch the episode of "Mystery Diagnose", or clips of Beth's interviews? She has a new book out which is a guide for parents that may help you.

 

Unfortunately your pediatrician doesn't have a grasp on our kids. A lot of them are asymptomatic due to the dysfunction of the immune system. I would find a Dr. who is well educated in this area.

 

Our son too spun out of control with his last flare and wouldn't go to a Dr. etc. We used a teenage transport service to get him to the hospital safely only to have them put him on a psych ward where nothing was done and he was released to us with parenting lessons. Needless to say he wasn't a happy camper.

 

Our Dr. immediately put him on a diet that eliminated Dairy, Wheat and ALL Grains since corn is genetically modified and our immune system doesn't recognize it along with soy unless organic. Again it is genetically modified, GMO. Dairy has been shown to cross the brain barrier. If you google it you can read scientific studies from major universities. Any little bit will help with inflammation. It takes over a week for allergens to clear the body.

 

It took 5 of us to get the blood work but I think him seeing in black and white that he had 3 infections along with life threatening allergies (no symptoms), opened a crack in the door for him to realized he wasn't crazy just very sick. Antivirals and antibiotics gave him back to us.

 

Hang in there. You are not alone. Hugs! 3bmom

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[Arrowhead]

Sorry-- another post. (I'm new to posting on forums, so am rather hamhanded here at first.) Joybop, is the Dr. T you mention Dr. Tanya Murphy?

[airial95]

Dr. Murphy is in Florida. Dr. T is Dr. Trifiletti in New Jersey.

[Arrowhead]

Update: Good news! After an hour-long phone consultation yesterday between my husband and my DS17's pediatrician, we've discovered that he (the pediatrician) is very much on board with pursuing PANDAS/PANS. He is willing to conduct blood tests, pursue various therapies, etc. So the next steps are to get our DS into the doctor's office and then to get him to agree to the necessary tests. The dear pediatrician (can I say DP?) is happy if we bring our DS in under any pretext. However, we think that our DS is so protective of his OCD compulsive behaviors that he is afraid to stop them. Also, it is possible that he is afraid that he is crazy and therefore reluctant to pursue therapy of any kind. So it is our hope that if he sees that the cause could be PANDAS/PANS, which is biological, he might relax a bit about treatment. So we feel that we need to proceed with caution, and the DP agrees, saying that if we sense any resistance, back off and try another time-- we don't want to close down our son's willingness to talk about this.

 

I want to find the right articles and/or books to leave around the house for our son to find. Yes, Saving Sammy could work well. Good suggestion. The pediatrician was suggesting an article from Time magazine that he thought might have just the right tone (informative but not causing alarm). He is going to try and find it, but I am eager to locate it as soon as I can. Do any of you know the title and date of publication for this article? Our DS pretty well shuts down when we try to broach the topic of any of the difficulties he is experiencing, so we are hoping to find literature that does not push him any further into his cone of silence on this topic.

 

And yes, I've ordered Beth's book and am eagerly looking forward to its arrival. Thanks for your helpful suggestions, everyone! I ride a rollercoaster of optimism and dejection. Today, after hearing my husband report on his phone conversation with the pediatrician, I'm feeling upbeat.

[T_Anna]

Good luck. It's hard with older kids, but hang in there.

 

T.Anna

[airial95]

If you reach out to Beth via her facebook page - she may even be able to connect Sammy with your son via social media. Maybe hearing from an older kid who has been through it might help?