New with questions

[momma2sethandjiji]

Hi,

 

My name is Michelle, and I am mom to a 7 year old little boy who has a history since January of this year of having issues after sicknesses. Sorry this will be long, but I am wanting any and all advice. In December of last year, my little boy was diagnosed with walking pneumonia. He did fine with the actual pneumonia and was cleared on repeat chest x-ray one month after diagnosis. However, following the illness, he seemed to start deteriorating health wise. He was pale in color, dark under the eyes and lethargic acting off and on. I also noticed him "blinking" his eyes alot--almost a grimace. I carried him to his pediatrician, as my intuition told me he had something "autoimmune" going on related to the sickness. I had never heard of this disorder or any other in specific, but just felt his body was attacking itself for lack of better words. I told her my worries and even told her his teacher had emailed concerned with his "lethargic" behavior and color. Our regular pedi ran a CBC. WBC was low and eosinophils high. She chalked it off as iron deficiency and told me to give him a vitamin at night. I already do that and told her that, and she told me to give him a half more. I left feeling bullied, as he eats well. Of course, I left and googled high eosinophils which have nothing to do with nutrition. The very next morning, he woke up crying with pain in his legs. It was so extensive his daddy had to pack him up the stairs. Of course, (to vent) I was furious knowing lack of iron was not causing this. We gave him Ibuprofen and warm compresses--knowing if we carried him in-we would get the "growing pain" diagnosis in our small town. The pain got better and he was able to walk within a few hours. The pain did persist through the next few weeks but never to the point of debilitating again. In the mean time, another employee of the school confronted me about his color. Obviously, already worried and getting another validation I was not a crazy mom, I carried him to another pedi. She ran a CBC again, and all was well at this point. During the spring, he was diagnosed with Scarlett fever. He did fine with meds and got over it fine. In May, he was diagnosed with strep. Again, did fine with no problems. However, during this entire time frame, I have never felt his color or darkness under his eyes have gotten back to normal for any substantial period. He had no more illness until three weeks ago. At that time, he got a sickness where he ran fever for 10 full days. It was diagnosed as bronchitis. He went through two different antibiotics before getting any relief. No cultures, x-rays or swabs of any sort were done. However, I insisted they run blood work. CBC and iron was ran, and the only thing that came out was that his actual IRON was low this time. Again, he takes a vitamin and a half and eats decent in my opinion. Following this illness, two weeks ago, just sudden, I notice him starting to hoard things like straw papers, tags off of clothing, wrappers, etc. I noticed him even getting in the trash and taking out disgusting food wrappers and such. I wrote it off as him adding it to his "play store supply". While on vacation last week, however, it became apparent there was more to this. He was picking things up out of parking lots, including ketchup wrappers, cigarette butts, etc. We scolded him at first UNTIL one night we are getting ready for bed and some dirty q-tips and other things from random places fall out of his underwear where he was hiding them. He was embarrassed and you could tell he couldn't understand why he had done it. During this same time frame of this starting up, he has started having headaches off and on as well as whispering in a repeat voice alot of the statements he makes. For instance, he will say "mom, look at that tree" and then in a whisper say it again and possibly another time in a whisper. I have noticed the "flinching" of his eyes again as well. The hoarding, to date, has backed off, BUT we are back in school and not much opportunity. Now, for my questions. 1. Will it be possible to diagnose this with his symptoms being so inconsistent? The most consistent thing we have to go on is the repetition whispering 2. What are different ways of diagnosing? 3. Do you think the headaches and previous leg aches are related? 4. When I talk to a doctor, should I go in detail all the way back to the first round of blood work discrepancies, eye flinching and leg pain? 5. Do you think the low iron is related? 6. I am in Western Ky, closer to Louisville, Nashville and Memphis. Any doctor suggestions, or should I just contact Dr. Kovacevic who is not that far in reality. Also, since feeling bullied after my regular pedi dismissing my concerns earlier this year, I have flip flopped around and still not found any one I am comfortable with going to regularly which makes me so insecure as I have went to her with both children for seven years. Having had an autoimmune illness myself that kept being diagnosed as postpartum depression, I KNOW first hand that I am going to be bullied alot more and my concerns dismissed with her especially and most others I have seen around here, so I am all about just going to the best first. BUT, will I need to have someone around here for testing or how does that work? Asking because I need to figure out my options of whom I think will listen which will probably end up being an ARNP because I seem to have more luck with them. Thanks so much...Again, any info is appreciated. This has all happened so suddenly and thinking back, I feel like a puzzle is coming together after finding this disorder.

[EmilyK]

Yes, go back to the first piece you described when you present it to a doctor. Put it on a timeline even. My DS gets the headaches and leg aches. When I hear hoarding I think OCD symptoms. When I hear eye flinching I think tic. I don't know about the iron, but have they looked at strep titers or mycoplasma? Sorry he's having such a hard time. It's no fun to bounce around doctors with little result. Time to hit the specialists!

[Guest Motherbear]

We got our PANDAS diagnosis through a psychologist who specializes in anxiety and OCD. She was the first person who ever asked us how many times my son had strep, and if I thought it was chronic. For years, I complained to my gp "Why does he get strep so often?" They would run a blood test checking his immune system. The test always came back "normal". It wasn't until my son's anxiety (after untreated strep) got so bad that we needed an evaluation for OCD, that we got help. Our psychologist pointed us to a pediatrician who believes that PANDAS is a real disorder. And here we are. I would suggest getting an evaluation for anxiety and OCD, sometimes what you don't think are "tics" (repeatedly saying I'm sorry) really ARE tics. Hope that helps.

[jojos_mom]

Definitely get a PANS specialist involved, especially if he is not too far from you. Many local doctors still don't have enough information and some of the information is very new, including the criteria in diagnosing PANS, which was recently updated in March 2012 to now include Mycoplasma among other triggers, not just strep.

That being said, last year, my DS9 had Mycoplasma and, soon after, started having very similar symptoms of hoarding, repeating, dark circles under the eyes and lethargy. Mycoplasma, at the time, was not yet on the trigger list, so when I suggested to our pediatrician that it may be PANDAS because of the sudden OCD symptoms, he ruled it out after the strep culture/bloodwork was negative. How unfortunate! It took over a year to get the correct diagnosis and treatment and with an out-of-state doctor no less! One thing I did make sure of was to provide our pediatrician with a copy of the latest NIMH findings to avoid this from happening again.

[1tiredmama]

Welcome to the forum! I agree with the others on every issue. My symptom list for my son goes back 15 years! Not one doctor has ever had a problem with that; in fact, they usually appreciate the thorough, organized list. Also, my two PANDAS kids have both had joint and muscle pain, on and off. And, at the age of 4, ds was treated for a year by a peds neuro for migraines.

 

You are most definitely on the right track! Forge ahead!

[jimTheBassPlayer]

Low iron can be an indciation of Candida ... which is understandable given the antibiotics your son has been on ... were any probiotics in the picture ? (although that would not always be sufficient, as abx will fight against any non-yeast probx )

 

Certainly see a Pandas specialist, and have Candida on your radar, as that can certainly be part of the issue.

 

-Jim