Am I imagining things?

[Annieo]

Hi! I'm new here. My six-year-old daughter has been exhibiting symptoms that have me concerned. Here is her recent medical history:

 

Diagnosed with strep throat 12/14/15. Treated with amoxicillin.

Diagnosed with pneumonia 2/2/16. Treated with amoxicillin.

Diagnosed with an ear infection 2/24/16. Treated with amoxicillin/clavulanate.

 

On 3/4/16 things went crazy when she had severe urinary symptoms and wouldn't leave the toilet. Finally got her to go to urgent care assuming she had a bladder infection. Negative for UTI. She's been in a pull-up or wearing a pad in her underwear ever since for fear of leaking urine even though she never has.

 

When UTI symptoms didn't resolve, we went back to the ped 3/7/16. Tested positive for group B peri-anal strep 3/8/16. Treated with amoxicillin.

 

Since 3/4 she's had severe anxiety about leaving the house. Missed a fun weekend at a hotel with family that she had been looking forward to. Opted out of a birthday party she had been looking forward to. Refused to go to ballet, which she loves. Refused to go to school for a week, as in, I would have had to take her in her pajamas kicking and screaming. Finally talked her into going, but she only agreed to go if I stayed in the building. She lasted half a day.

 

Back at ped 3/14/06 when she refused to go to school again. Because of hives on her face, doctor switched her from amoxicillin to azithromycin. Doctor said urinary symptoms are not physiological. Gave me information about anxiety in children.

 

She went to school Tuesday through Friday this week, but it's been a struggle. She feels pressure in her throat whenever she eats (reflux?), so she has to take Tums to school with her. On Friday (yesterday) she had a 20 minute meltdown because her socks were bugging her. (And then after school while wearing the same socks she said, "Can I keep these socks forever? They make me feel like I can do anything!") She's been extremely emotional, screaming and stomping off to her bedroom. Also, for the last couple of months she's been afraid to fall asleep by herself, something she never had trouble with before.

 

This anxious, clingy, emotional child is not my child. I don't think her symptoms are severe, but if there's anything I can do to help her, I need to do it.

 

As a little background to our family, my daughter is the youngest of six children. She has a brother who's dealt with some pretty serious medical issues. I'm not a parent who overreacts. I've dealt with enough serious medical stuff that I know not to panic until it's time to panic. Also, my oldest son took his life 17 months ago. Someone suggested my daughter's anxiety is a delayed response to his death. I disagree. She's been plugging along just fine until now. We talk about him. She knows how he died. It's not a topic we avoid. And her anxiety came on very suddenly.

Anyway, sorry for the novel. Am I imagining things or does this sound like we're dealing with PANDAS type symptoms?

 

 

[LNN]

First, I'm sorry to hear about your son's struggles and the pain you must still be carrying. Kuddos to you for being so able to talk about it and work toward moving forward. It sounds like you're creating a healthy environment for your daughter.

 

You say you're not one to panic until it's time to panic. Yes, it sounds like it's time to panic (well, not panic, but to listen to your gut). This absolutely sounds like Pandas/Pans. And your pedi is wrong - the urinary issues are indeed physiological and not psychiatric. While I can't give you any published studies, the urinary issues are a hallmark symptom that was common in Swedo's first 50 cases (published in the 90s). One Pandas neurologist suspects that one of the nerves that regulates bladder contractions becomes inflamed and causes frequent contractions. It is not "in your head".

 

It sounds like there's an infection that isn't being eradicated. You can try to work with your existing medical team, but most of us old timers have found this to be an wasteful approach, both financially and in terms of time wasted. Your best bet is to see a Pans specialist. There's a list of helpful doctors pinned at the top of the helpful threads at the top of the main Pandas forum page and you can get a good list here http://pandasnetwork.org/researchandresources/find-help/usproviders/

 

In addition to Pandas, due to your family's history, I'd encourage you to learn about methylation. Methylation is the chemical process that, among other things, helps the body create neurotransmitters. If you have certain mutations on certain genes, this chemical process can become impaired. If you know you have certain mutations, and you have psychiatric symptoms that can come along with these mutations, you can use diet and supplements to help the body work around these mutations. So if you have a mutation that causes you to stay high in adrenaline longer than most people, you can take extra vitamin B3, which helps the body break down adrenaline. If you have a certain mutation on one of the genes that helps create serotonin, you can supplement with specific forms of vitamin B9 and B12 and help the body's efforts to make serotonin a little more efficient. This has helped my daughter immensely - both infection and methylation defects create bi-polar mood swings and depression in her. Treating both Pans and methylation has improved her outlook beyond words.

 

Listen to your gut and pursue Pandas treatments for your daughter. The faster you get this under control, the easier the journey can be.

[ejh]

I am sorry about how hard things have been for your family. I just want to say I completely agree with llm. This absolutely sounds like PANDAS/PANS. I also agree that the best thing is to work with someone with experience in treating PANDAS/PANS, and the sooner you do, the sooner you will have treatment.

[dcmom]

annieo- I am so sorry you and your family have suffered so much. Your daughter's symptoms sound exactly like my daughters first onset of pandas. My best advice to you would be to find a practitioner that treats PANDAS, hopefully recommended by someone on this board, or pandas network.org. In our experience, they are the only ones who can effectively treat this disorder. Don't waste time, as many have waiting lists. In the meantime, try to keep things as calm as possible. See if your doctor will keep your daughter on antibiotics until you can see pandas doc, and consider treating your daughter with 5-7 days of round the clock (as if she had a fever) advil.

[Albymom]

You've received excellent advice from everyone on this thread.

 

I want to emphasize a point that has already been made; these behavioral symptoms deserve to be treated as seriously as more traditional "bio-tyipcal" symptoms. They are the neurological equivalent of having a high fever, or a migraine or a broken bone, or even coughing up blood. Something has crossed the blood-brain barrier in your daughter's system, and her system is misguidedly attacking her brain. If that sounds dramatic, it's because it's really that serious.

 

Because of how we've been conditioned to think about "medical symptoms", it was initially hard for me to truly grasp that our daughter's behaviors were 100% out of her control, and furthermore that her behaviors were actually expressions of alternate systemic responses to inflammatory agents. For example, the fact that she hasn't had a fever in over four years is actually a serious symptom. It's neither a "fun fact", nor an indicator of a strong immune system.

 

Early, aggressive intervention can stop the auto-inflammatory process before it becomes a continuously reinforcing cycle. The longer this pattern is reinforced, the harder (and more expensive) it is to get the inflammation under control. Combatting the inflammation is necessary in order to retrain the immune system.

 

Discerning the initial cause may never happen. I spent months exhausting Google and wracking my brain in search of "the cause". I've come to accept that in our case, while we have evidence of brain inflammation, despite the 75+ blood tests results, our daughter's initial (and continued?) 'cause' remains yet undiscovered. We now focus on what we DO know, and what we CAN do, which is to combat the inflammation and retrain the immune system.

 

Having lived with PANS for (only?) 13 months, my main regret is that I didn't initially adopt and convey the same sense of urgent and criticality that any parent might have if their child had suffered a stroke, or a crazy-high fever, or if their child had a more "classic" presentation of Rheumatic or Scarlet Fever. We've been conditioned by our current medical and social construct to treat behavioral symptoms differently from "purely biological" symptoms presentations. We label and treat "mental health" as an entity somehow separate from "health". Although the brain is an organ just like your kidneys, lungs, and the liver, for some reason our culture separates neurological issues into two parts: biological issues and the rest -- "mental health". It was months before I truly grasped how serious this disease can become if flares are not treated immediately and with as much medical firepower as you are comfortable employing. PANS inflammation left to smolder and re-trigger can quickly become your worst nightmare.

 

I hope you are able to quickly and easily identify an active infection or other clear cause, and that the right antibiotics will eradicate your challenge altogether. I don't know of any statistics citing how many children fully recover at each of the various PANS treatment stages, but the sooner you get comfortable ringing alarm bells and pushing hard for serious treatment quickly, the shorter your trip down the rabbit hole to PANS Land will be.

 

I'm sorry you're here, but you're not alone. Best of luck to you and your family.

Edited March 22, 2016 by Albymom

[Annieo]

My brain has been going a million miles an hour since I first posted. Thank you for your replies. If I were a younger person I swear I would go back to school and become a neurologist. I've thought this often since my son died, and feel it even more so now.

 

I'm only one person with some hunches and no medical degree to give me credibility, but I offer you this: 2 1/2 years ago I started following a paleo diet. I read and studied everything I could at a blog called Mark's Daily Apple. His whole push is to reduce inflammation in the body by what we eat, the emphasis being that inflammation leads to arterial damage, which leads to the body trying to repair itself by sending cholesterol to repair the damage, which leads to clogged arteries. Reduce inflammation, reduce heart disease. When I changed the way I ate I didn't realize which aches and pains had disappeared. Since my son died I haven't been eating as carefully and discovered that if I eat chips two days in a row I get sinus headaches. I've tested it enough to know there's a direct correlation. The funny part is that I used to get sinus headaches ALL the time and didn't even realize they had stopped. Sinus headaches = inflammation. Yesterday I read an article about the nasal passage possibly being the strep A pathway into the brain. (http://newsroom.cumc.columbia.edu/blog/2015/12/15/strepabrain/) My daughter slept sitting up for the whole month of February because of sinus pain. So, does strep A cause inflammation in the nasal passageway (causing sinus pain), or does general inflammation in the body (caused by food? or something else) cause inflammation in the nasal passageway thereby aiding the strep A in its path to the brain???

 

I've been in contact with one of the scientists who co-led the study I linked to above. Hopefully he can send me in the right direction to get help for my daughter (who actually seems FINE today).

[sf_mom]

There are also other infections that reside in the nasal passage chronically and wear down the immune system. You can do a nasal swab to determine possible source. MARONS (Staph), Staph, Mold, Yeast, Strep, etc. Molds and yeasts are not detectable via nasal swabs. Parasites are also known to get into nasal passage and then into brain. Our LLMD (Lyme Literate MD) would argue many of the above can get into the brain via nasal passage.

 

Your inflammation, headaches, aches and pains combined with your DD symptoms make me wonder if there has been mold exposes in the environment at school or home?

 

Also do you live in a Lyme endemic area? Have either of you been bite by a tick?

[bws1565]

Albymom,

 

My dd16 hasn't gotten a fever ever since I remember too. In addition she had a borderline low white count. I was told this is a sign of a STRONG IMMUNE SYSTEM! until we hit upon Lyme. Of course this is a classic sign, meaning that the body has given up fighting and all viruses and bacteria just sit there.(and cause trouble).