Still Confused

[amrussell]

I'm almost at the end of my rope and I'm thinking about accepting a TS, ADHD, and OCD diagnosis. But, something inside won't let me give up. Call it mommy's intuition or a gut feeling, but something here seems off. It's not that I am hopeful my ds7 has PANDAS, but I want to rule it out before I even begin to think about medication for my boy. But lately I'm feeling like if he indeed has PANDAS or PITAND wouldn't it be easier than this to get a diagnosis?

 

Here is why I'm struggling, my ds7 was developed severe allergies at 3 months old. His pedi refused to test him saying that babies don't have allergies. I had him tested anyway, allergies to milk, soy, egg whites, wheat, and dog dander. He was already on soy formula, could be why he had eczema from head to toe, even on his little eyes. I KNEW something was very wrong. He had severe GERD, had to sleep in a swing, and was put on reglan and zantac. He was put on zyrtec for allergies as well. He battled chronic asthma, sinus infections, molluscum, impetigo, herpes, strep throats, fungal infections that caused him to loose his hair, croup, bronchitis, ear infections, and had ear tubes put in and adenoids removed. I remember at 4 years old, he had 12 ear infections in 3 months, which led to his ear tubes and adenoid surgery.

 

As ds turned 6, his allergies calmed down quite a bit and we were able to take him off of his medication. He also showed no more signs of asthma, or bronchitis. He stopped getting sick. Now at 7 years, he woke up one day in May and had tics. First the blinking, then head jerking, now it's all vocal (sniffing and clearing his throat). His allergies are coming back with a vengence, eczema on his little eyes again. He also has a herpes outbreak that is struggling to clear even with alcyclovir. And his stomach issues are back as well, his belly is hard and destended. He's very gassy and spends hours going to the bathroom. Persistant diarrea and accidents as well. And all of the sudden he thinks he's fat and needs to loose weight. He's always been scared of the dark, but now he has bedtime rituals that take hours of preparation, always asking at least 50 times a night, "Are you going to check on me". He's scared his toys will come to life and kill us, or that I'll turn into a zombie. He is terrified to be alone in any room. He screams out when he can't find me, and follows me all over the house. He doesn't want to play outside because he says he loves me too much and will miss me. And his temper is pretty much off the charts when he gets frustrated for very small issues. He's obsessed with time and dates. His grades are stellar, he's even in the gifted program, but his handwriting is terrible, and he erases so much his paper is always black with smudges. He started having bathroom accidents, and has trouble sleeping. His behavior is off and on, I feel like I'm always walking on eggshells.

 

I was able to get his pedi to run his strep titers and cbc which she said both came back normal. Although, she wouldn't order allergy testing, and she doesn't think an ENT visit would be helpful (I would if it's a sinus issue). She also wouldn't run a Lyme test even though we lived in Virginia and had a dog in the house who came home with ticks, frequently. She said maybe I should just accept TS and move on, that his self esteem is suffering and I should consider medication. My question is, if it's not a strep related illness, could it be PITAND? And if his CBC is normal, does that mean that he DOESN'T have PANDAS or PITAND? She says his immune system is fine. I'm confused. Can anyone help clarify this for me? If this is an autoimmune disorder shouldn't CBC show something? I think I need some sleep, sorry to ramble.

[Priscilla]

Well you definitely have physical issues that are more likely causing the psychiatric issues than not. You don't have to have elevated strep titers for a PANDAS diagnosis, and PITAND could be a likely culprit (and I don't think the CBC will tell you much about that) For my dd, I believe strep started it, but now I think it is PITAND. Seems a case of H1N1 Dec 09 brought on this most severe exacerbation. But in retrospect, we have been fighting this for many years (probably since 1st strep infection. Have you done any other labs? (camKinase, Lyme, myco??) Seems your little one has been susceptible to almost every illness in his few years, has he been tested for immune deficiency? Cam Kinase may be a good place to start, or get them all drawn at the same time. Is your doctor listening to you? Maybe you need to look into a phone consult with one of the Doctors that are treating PANDAS. I hope you can get some answers soon

[Priscilla]

You may also consider having him tested for Celiac disease if not already done

[mama2alex]

Please don't let that doctor talk you into accepting a TS, ADHD, OCD diagnosis without adequate testing! I would recommend finding a Lyme-literate doctor who can look into a number of possible underlying infections which may be triggering your son's issues. Sounds like you already know herpes is a problem, but they will do compprehensive virus testing, look at molds, allergies, vitamin/mineral deficiencies, strep, leaky gut, mycoplasma, Lyme, Babesia, Bartonella, Erlichia, etc. A CBC doesn't rule out anything. They can look at the whole picture and then put him on the right medicines to help get him physically and mentally healthy.

 

And with all his health issues, you should definitely have him tested for immune deficiencies.

 

Just from what you posted, it sounds like YOU are on the right track and your pediatrician is on the WRONG track. "Just accept it" isn't acceptable in my book.

 

You can contact ILADS for Lyme-literate doctors in your area or post on the PANDAS and Lyme forums here to get recommendations from forum members.

[thereishope]

May I ask why you are considering accepting the other diagnosises? I have to ask this, so don't be mad, but is part of it that you are so physically and emotionally tired that your mind tells you that at least you'll have an answer? If so, that's normal. The thing is you have to really push past that and keep searching for the answer. If your Mommy gut is telling you the search is still on, follow it. Your son sounds like he was too ridden with health issues early on to have a dr just add on those extra issues. Now, I'm going to pin point those allergies. Are you able to get those under control in the past? If so, how? Really try to get them under control (without allergy shots right now). Each child reacts different to different allergy meds. It is important to remmeber that allergies can be a strong trigger for these kids. I;m not saying that is the only issue, but it is one that needs to be addressed.

 

Also, Herpes, even cold sores, can trigger a PITAND reaction.

Edited October 1, 2010 by Vickie

[kimballot]

Your son sounds so much like my son 6 years ago. At that time I accepted that my son did not have PANDAS. He did not have strep throat, and the doctor told me his blood work was fine. I moved on. I tried other techniques to battle the OCD and ADHD symptoms; I ignored the tics and sent lots and lots of emails to school to try to keep him on track. But last year it all blew up after H1N1 and there was no denying he was very sick. The pediatrician ran all the tests that the PANDAS doc asked for and the pediatrician told me his blood tests were fine. I got copies of the tests anyways and sent them off to various doctors. The results were not fine. He had an old mycoplasma infeciton, a current strep infection, and he was deficient in 10 out of 14 titers for S. Pneumoniae, which usually causes sinus infections. A PANDAS doc figured out that the problem was a sinus issue. He also had elevated C3D levels and a PANDAS doc figured out that that was causing the joint pain he had been complaining about for so long.

 

We cleared the sinus issue and got him on the right antibiotics. We are working with a PANDAS doc and my son is generally healthy. We are able to treat the allergies and sinus symptoms as they come up and they usually are just a couple of days of sluggishness.

 

My advice to you is to try to find a way to get to a PANDAS doc. There are 4 or 5 who are frequently mentioned on the forum. They are in different locations (mainly East coast and midwest, though), and they have different approaches. Read about them and find one the one that best meets your needs.

 

Get your son's medical records and make a chart of all his illnesses. If you have any records of behavior or handwriting samples, try to match those with the illnessess and antibiotic usage. Once I did that in an excel spreadsheet it became undeniable that my son had behavior problems whenever he was off antibiotics and the behaviors subsided with antibiotics.

 

Finally - consider doing the Cunningham tests before you get PANDAS treatment underway for your son. The test is costly ($400), and it is most valid when the child is in an exacerbation. However, it can help to answer the question "is this PANDAS or TS" , as the cam Kinase scores from blood serum from kids with PANDAS is significantly different from kids with TS or OCD or ADHD without PANDAS.... and you can see where your son's blood falls in that graph.

 

It may turn out, after you've consulted with PANDAS docs, that your son does not have PANDAS, and then you can move forward investigating every avenue of TS or OCD with confidence in the diagnosis.

 

I wish you the best of luck - please keep us posted!

Edited October 2, 2010 by kimballot