Are there other diseases, syndromes or medical conditions that mimic P

[BeeRae22]

I am the same posted for Daughter with Emergent Condition.... My daughter, who just turned 8 in November, is now only eating bread and choc ice cream. She has had out of character episodes, including a complete meltdown and tantrum because I got a new haircut, complete tantrum and meltdown over not having her warm up jacket at dance class, and a horrific, sudden rage episode. She suddenly dislikes school and has at times refused to get ready to go, when she used to love school. She has expressed having sensory issues about the cafeteria at school, and about certain clothing, and described one of the paras at her school as a "scary witch"-- again, completely out of character. She has always picked at small scabs on herself, but it's gotten much worse and now she rubs and picks at her fingers all day until they're raw. She also picks at her lips all the time..... This has all happened within the past 3 months.

 

Well, now she has a cold which includes a cough. She complains that her head and back hurt. She is now starting to even refuse the bread because her throat hurts. I haven't been able to get her to drink any protein drinks to date, but I did convince her to drink a little last night and this morning, in lieu of the bread....

 

We just heard back from her Ped, telling us that all of the bloodwork came back normal, with the exception of her having high cholesterol. I have requested a copy of the results and will be picking them up in the morning.

 

If the strep is negative, and the lyme is negative-- what else could this be???? Anyone know??? Are there other psychiatric or neurological disorders that could cause this? I feel like I'm losing my mind! :/ Is it possible that this is all just anxiety from her moving to the intermediate school from the elementary school? (same school system, same classmates, etc.) Can anxiety suddenly become such a big issue that an 8 year old can become completely terrified to eat anything????

 

The only life raft I have right now is that we have a (first) appointment with Dr. M tomorrow. I will have her bloodwork results in hand. I am praying that he can help. It doesn't seem like anyone else can at this point. Any positive words of encouragement appreciated..... in regards to Dr. M would be even better.

[BeeRae22]

Also, my SIL, who works at CT Children's Medical Center satellite office, has spoken to a neurologist who is interested in my daughter's situation and is willing to see her. The ped is willing to write a referral.... wondering if I should take her, or not? Why, or why not? I've not heard of good experiences with neurologists on this site. Feedback appreciated.

[nicklemama]

My son never tested positive for anything for two years....no strep,mycoplasma pneumonia, HHV6 or other herpes viruses, CMV, EPV, Lyme. He was still considered PANS. When we finally found a local doctor willing to look more in depth again( we were originally Dr T's patient and then two Ivigs with Dr K) she found he was positive for ehrlichia and anaplasma. Treatment for those has put him in a really good place. Keep looking.

[PowPow]

Did they check autoimmune markers?

Sed rate

Thyroid

ana

dsDna

My daughter has anti-phospholipid (cardiolipin) antibodies. Autoimmune Encephalitis can certainly "look" like PANDAS.

[mama2alex]

What Lyme test did he run? I'm guessing from the way you described his attitudes toward Lyme that he did NOT run one of the more sensitive, accurate tests. Did he happen to check for Lyme coinfections - Babesia, Bartonella, Erlichia and Anaplasma? These are carried by ticks too, and need to be treated differently than Lyme itself. Some other things to check are mycoplasma, Epstein Barr Virus, HHV6, CMV and mold. You really need the right kind of doctor to run all these tests and interpret them - PANDAS/PANS specialist, Lyme doc (LLMD) or integrative medicine doc. What type of doctor is Dr. M?

 

Also wanted to mention that when my ds (then almost 9) developed PANS, he had episodes when he thought his dad was an "imposter." There were a couple of times I think he had this experience with me too (he would say "your not my mom, get away from me!"). I learned years later this is called Capgras Syndrome when I read Suzanna Cahalan's book "Brain on Fire." Look up Capgras Syndrome and see if you think this is what's happening with him (as opposed to, he just doesn't like the Para, so he calls her a "witch"). If so, it's something you should mention to doctors.

 

You are not anywhere near running out of options. Keep on it and you'll find the answers.

 

If you want to read, here are some good books to start with:

Saving Sammy: Curing the Boy Who Caught OCD by Beth Maloney (about PANDAS)

Cure Unknown by Pamela Weintraub (about Lyme)

Brain on Fire by Susannah Cahalan (about anti-NMDA receptor autoimmune encephalitis)

Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease by Dr. Richard Horowitz (good discussion of diagnosis and treatment of Lyme and other chronic illnesses)

[LNN]

You know from my PM that I love Dr M and hold him in high regard. I'm so glad you were able to get in to soon!

 

(Mama2Alex - Dr M is an LLMD and has many PANS kids - studied under Dr J, had his own lyme treated by Horowitz - helped my kids enormously when other Pandas docs had hit dead ends and said lyme wasn't an issue when in fact it was a huge issue for us). He is also on a Pandas advisory board with dr B, Dr O and Leckman, with Swedo calling in for monthly meetings being sponsored by the state health dept. Dr M is about as good as they come.

 

My personal experiences with CCMC have not been great. They roll their eyes at "moms who google too much" and are very conservative in their willingness to treat anything other than their unique domains/specialties. If you go in asking about Pandas and lyme, they will cut you off. Early on, our (former) pedi sent us to a neurologist (now retired) who patronized me and instead wanted to put my DS (who had just turned 6 at the time) on respiradol or haldol and refused to consider Pandas at all. You can go if it makes you or your SIL feel like you've been open minded and considered all angles, but I'd be shocked if you were happy with the outcome. At least wait until tomorrow's appointment and see how you feel then.

 

Please let me know how the appt goes!

 

Oh - and Yes, there are more than just strep and lyme that can trigger neuropsych symptoms - bartonella, babesia, ehrlichiosis, toxoplasmosis, several viruses and numerous nutritional deficiencies/methylation issues. But Dr M is well-versed in the full range of possibilities and isn't married to any single answer or protocol. He approaches each patient as a clean slate and follows the body's clues, not some preset notions.

Edited January 13, 2014 by llm

[Hopeny]

Is this dr M in CT? If yes he's an amazing doctor and you are in good hands. My daughter had similar symptoms such as skin picking, school issues and strange fears. Skin picking is a compulsion, some people clean , some pick their skin. She told me she was afraid her clothing would hurt her and that the world was a dangerous place so she could not leave my side. I put up a post some time ago with more information on the western blot, which is commonly mis read and misunderstood. I will try to find it and post the link. As others have said the Lyme co infections need to also be properly evaluated. A pediatrician typically wd not be well equipped to help. They are good for the. 95% of kids with typical boo boos. I have found it's best to use specialists generally. Ps it took me a year to get an appt with Dr M and I consider it worth the wait (we had other llmd at the time)

Edited January 13, 2014 by hopeny

[qannie47]

I think that all psyche issues come from something/a physiological cause. I think Pandas has finally caused the medical community to ask just that question. I think that you are on the right track, asking all the right questions.

[LNN]

Is this dr M in CT? If yes he's an amazing doctor and you are in good hands. My daughter had similar symptoms such as skin picking, school issues and strange fears. Skin picking is a compulsion, some people clean , some pick their skin. She told me she was afraid her clothing would hurt her and that the world was a dangerous place so she could not leave my side. I put up a post some time ago with more information on the western blot, which is commonly mis read and misunderstood. I will try to find it and post the link. As others have said the Lyme co infections need to also be properly evaluated. A pediatrician typically wd not be well equipped to help. They are good for the. 95% of kids with typical boo boos. I have found it's best to use specialists generally

 

Hope - when you find your old post, consider pinning it under "Helpful Discussions for Lyme" at the top of the forum for future reference. There are also other articles on the WB pinned there.