Working in the Dark

[Arrowhead]

Hello,

 

I'm new and was recommended to this forum by a sympathetic neighbor.

 

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 . . .

[Chemar]

Hi and welcome

 

Our website has been down for an upgrade so I am not sure how many members have seen your post here.

 

May I suggest that you also post on our PANDAS/PANS forum http://latitudes.org/forums/index.php?showforum=17

 

imho the behaviors you are describing are not what I would attribute to just an ADHD dx

[searching_for_help]

Your son certainly does seem to be reacting very much like Sammy did. For these symptoms to come on after an illness really sounds like PANDAS/PANS. (These kids react to more than just strep.)

 

You are in the right place. The parents on here have been more helpful than anything else I've come across. I'm sure more will chime in to encourage and guide you. The hardest part of this all is finding a doc willing to help. It's taken us YEARS - but we finally found a nurse practitioner at least willing to run some tests. Dr. K in Chicago got the ball rolling with abx (which quickly took away our dd's extreme depression), but the IVIG did not help her. He didn't test for much else, but did treat her for mycoP for a short time. She still has extreme anxiety, OCD/intrusive thoughts, and eating disorder and exercise compulsion. We are awaiting results from a neurotransmitter test, Lyme test, some kind of viral test, and I also requested a NutrEval test to see if she is deficient in certain vitamins, nutrients, etc. After years of this nightmare, we just need to know what's going on. It's been so hard finding a doc willing to look into this. It's so very frustrating when all they want to do is give them psych meds, which don't treat the root cause.

 

Hugs to you all - there is hope. I hope you live close enough to some of the good PANDAS docs or an LLMD who can help you and save you years of searching! If I had to do it all over again, I would just make the appt. and hop on a plane...

[3bmom]

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

[Arrowhead]

Thanks for your support! Our next approach will be to try to get blood tests done. We're hopeful that our son will see that he is sick, not crazy, as you were able to demonstrate to your son.

[3bmom]

Beth was on the Doctors TV show with Sammy. I think they showed footage of Sammy's behaviors. Sammy made comments too. Your son being older might be able to take this in.

 

Our son hadn't taken a shower either and his hair was matted like a homeless man and he went from an A student to D's and F's. Just going off Dairy allowed him to start taking showers again. 6 weeks on antibiotics and antivirals his grades came up except Math, wish I understood that. He then cut his hair short and emerged a new boy!

 

Hang in there! Keep me posted.