Getting desperate! Rages still really bad.

[SearchingMom]

Hello,

 

Some good folks have already given me good advice re: the Cunningham test, but I want to pose the question to the whole forum. For two weeks we've been using 5-HTP, magnesium/calcium, amino acid combo, probiotics, B-vitamins, enzymes, but for the last several days, ds11 has a good day (no rages) then has a REALLY bad day of rages all day and it's getting harder to handle. I'm sure you folks must know what I'm talking about! I don't know if this is normal or not with 5-HTP treatment. Are we overloading his body with too much? I cry all the time, I'm constantly on edge, I hardly eat and lost 15-20 lbs since May. I can manage the cost for the Cunningham test, but I’m overwhelmed with so many possible directions (Lyme, serotonin deficiency, phenol overload from dyes/additives, gluten intolerance, etc.). I don't want to spend valuable time going down the PANDAS road if it makes more sense to follow another.

 

So can you tell me: Does this sound like your kids who have been diagnosed with PANDAS? I'm asking because ds11's symptoms may not be a match. Please forgive the long post.

 

Some history: ds11 had only organic food from the womb until age 5 when started restaurant food. Always rosy cheeks, bright eyes, happy disposition, strong social skills. Started reading age 3, showed great sense of humor. Diet of all fruits and veggies, soy, lean meats, whole grains, fish, dairy (plenty of gluten, I realize now). No signs of food allergies/intolerances, psychotic episodes, irrational thinking, or rage until age 9. DS11 has had all immunizations until now.

 

June 1999 - Kept at hospital after 36-hour labor and emergency C-section due to suspected sepsis. APGAR 9. I insisted on breastfeeding next day or would leave AMA. DS11 given gentomycin and other abx for 10 days.

 

A few URIs as an infant/toddler, but not more than 2-3 per year. Given abx maybe once or twice. Pediatrician recommended not giving fever reducers when ds11 was toddler unless fever surpassed 102F.

 

Summer 2004 - First exposed to ticks at parents country property. Has had at least a dozen embedded ticks over the last 6 years.

 

Fall 2004 – Diagnosed with asthma age 5 after almost developing pneumonia. Took abx. Started albuterol via nebulizer twice daily. Ended this treatment at age 8 when ds11 said it wasn't helping. No recurrence.

 

Fall 2006 – Very bad sore throat. Strep not diagnosed with rapid culture test. Doctor would not do the three-day culture. No abx prescribed.

 

October 2008 – Appendix removed due to emergency. Given anesthesia and strong antibiotics.

 

May 2009 – Phobias began with fear of statue in our garden being alive and cursing things. We had to watch statue before he would bathe. One-hour showers began because he had to make sure shower items weren’t getting cursed. He apologized to the plunger because it got cursed. Frequent headaches, so took ibuprofen (dyes!) or Tylenol (more bad stuff!) Often woke during the night and couldn’t get back to sleep. When we walked our dogs, he complained his legs hurt and he had to stop. Most days he could not eat breakfast for 2-3 hours. DS11 was very irritable – I thought onset of puberty. (Still doesn't eat sometimes for hours.)

 

Summer 2009 – Continued irrationality. He was “switching dimensions,” often didn’t recall details or conversations or events, experienced genuine distress when I didn’t know what he was talking about. Next day he was normal. He was still reachable, but episodes of irrationality were wearing us down. When I asked about physical symptoms, he always felt so much better when I was trying to figure out a physical cause (like I finally believed him something was wrong!). He stopped wanting to spend time with his favorite pets and started resisting chores because of aches and pains. No rages at this point.

 

Fall 2009 – He had weird rashes that lasted a few days (gluten?). Occasional headaches. Meltdowns began over small things, but certainly nothing to raise any red flags. Still reasoning well enough. Complained of being hot when it was cold and vice versa. We all got an outbreak of scabies lasting 3 months. Treated successfully with neem oil and tea tree oil. Allergic to permethrin.

 

January 2010 – DS11 thought he had a brain tumor. Only symptom was headaches, I thought doctors would not diagnose with just one symptom. Ibuprofen/Tylenol were helping (Ha!), headaches not happening as often. He had occasional nasal/allergy congestion, so I thought it was that. Then began his “Everyone is dumping crap on me” phase. ANYTHING we said he completely misinterpreted and took personally. We were “ruining his relationships” with pets, his gameboy, TV, anything, and he couldn’t enjoy anything anymore because we were “poopy.” Sometimes he might listen and realize we weren’t poopy, but he listened less and less. Started checking behaviors like making sure locks were locked by pulling 50 times.

 

April 2010 – Phobias still happening. He slept longer in the morning, not wanting to do school (I home school him). I started a new routine to get his sleep back on track which went well at first, but he started to have frequent meltdowns related to unresolved fears that he would never discuss. He could only panic or rage and start hitting us. He is a gifted student and suddenly stopped wanting to do handwriting (he had been doing really well!) and he could no longer understand math concepts (multiplication/division) that he had previously learned. Sometimes he couldn’t even add or subtract. He would ask for the answer and say I was being mean for making him think of the answer. Sometimes he was very lucid and showed amazing critical thinking, but the random “you’re being poopy” thing got worse.

 

May 2010 – New symptoms he reported when we could talk to him: lying still in bed sometimes the room would spin, tinnitus (ringing in the ears), highly sensitive to sounds and smells, when held during a rage he screamed we were killing him when we weren't holding him hard at all. He seemed okay part of the time, and a monster the next. Definitely Dr. Jekyll and Mr. Hyde. We started B-vitamins at this time which seemed to help for a while.

 

June 2010 - Went to PCP because I learned about PANDAS (Sammy) on Discovery Health. Referred to neurologist for appointment on Sept. 3rd. I took him to the country for about 10 days (my parents have a cabin), and he seemed to be doing really well. No gameboy or TV, same organic foods, but he had a 6-hour rage after taking Benadryl chewables (dyes) and low-dose chewable aspirin (dyes) after getting a wasp sting. He switched to aspirin as the ibuprofen/Tylenol was no longer working. I NEVER made the dyes connection. Also had another tick bite which formed itchy red bump that lasted about one month.

 

August 2010 - We visited psychologists due to worse rages. Got NO help. One suggested we take ds11 to ER for more rapid PANDAS assessment where they convinced me to put him in inpatient psychiatric facility. I took him out AMA 2 hours later. All this while CPS was breathing down our throats because one therapist reported ds11's attacks. I started no contact with ds11 because he constantly attacked me physically and verbally and I couldn't think anymore to figure out the problem. (But he still maintains the no contact started because I was hurting him.) No one will work with ds11 if he isn't "calm." Tried grapefruit seed extract but it seemed to exacerbate.

 

September 2010 - The neurologist said not PANDAS. He let us run ASO and DNASEb, but titers were extremely low. I found Dr. Infante in San Antonio whom we saw on Sept. 16th. He also said not PANDAS, but maybe he is too new to help if ds11 does have PANDAS. Started food diary to track food issues.

 

DNASE-B Antibody result is <60 (Flag reference ranges: Preschool <=60 Titer; School <=170 titer; Adult <=85 titer)

 

ASO result is 6 (Flag reference range: <150)

 

Sed Rate by Modified Westergren result is 4 (Flag reference range: < or = 15)

 

C-Reactive Protein is <0.10 (Flag reference range: <0.80)

 

October 2010 - Went to naturopath who was ultimately no help. He prescribed the same stuff I'm already using, but his supplements were impossible to hide in food/drink. DS11 has no knowledge of treatments other than chewable enzymes, probiotics, and B-vitamins. He also suggested inositol for calming - only 750mg per day made rages MUCH worse. Stopped that last week. Just ended eating restaurant food. Trying to do gluten free diet.

 

The only physical tics ds11 has shown are chewing/twisting hair when it was longer (now short), and pulling out his eyebrow hairs, but never to the point that hair appears missing.

 

I'm sure I've missed or forgotten something, but I'm tired and hope this outline is enough for now. I'll be glad to answer questions if any come up.

 

Thank you all for anything you can help with! At this point, I don't know where else to turn. I keep praying.

 

Angela (SearchingMom)

Edited November 3, 2010 by SearchingMom

[T_Mom]

Hi Searching Mom-- I am sorry you are dealing with this--

I know for us the "flowchart" that Buster has put together has been close to our experience. Have you seen it? Look at the top of the Pandas forum under helpful threads.

 

For us this was a "clinical" diagnosis...meaning, we tried antibiotics and OCD/ticcing was definitely affected. Steroids as well work in a similar fashion for us-- I would look at the flowchart and see where you are on it, that would be my best suggestion for a mom asking the type of questions you have right now-- I hope you are able to find real relief for your dear child.

[peglem]

It sounds to me like there is some underlying infection that is not being eradicated. I don't think the cunningham test can tell you what that infection might be. Lyme kids seen to be testing w/ high CamKII levels as well. It would be interesting to see the antineuronal antibody results- that might at least indicate if it is autoimmune or not.

 

In your shoes, I think I'd do the testing for lyme and co-infections, simply because I think lyme treatment would clear up any other infections that could be present...

 

My child has been getting PANDAS treatment for about 10 months now. She's shown improvement, but the one treatment that seems to really turn things around is not routinely used for PANDAS. So her response to that treatment indicates that we are probably dealing with some kind of intracellular microbe as well.

[SearchingMom]

Thanks, T.Mom and Peglem. I just checked the flow chart and also the list of PANDAS symptoms posted by Buster. Not sure how I missed them before, but I do see a correlation of ds11's symptoms and Buster's list. I knew that Lyme and co-infections could be playing a part, so since I couldn't get a doctor to prescribe abx, this is why I tried the grapefruit seed extract because it is a natural broad-spectrum antibiotic. It seemed to exacerbate and I couldn't tell if he was herxing or not. I'm hoping to get some more input from forum folks, but I will re-examine the Lyme route. It's just that TX is not Lyme-friendly, and I had hoped it might be something we could treat with the diet and supplements.

 

Just wondering if your PANDAS kids have obvious reactions to dyes? Have you found diet or ingested substances to play any part at all with causing or worsening rages? We found a very clear connection with dyes and aspirin - and restaurant food.

 

Also, the reason I went with the 5-HTP was that ds11 would always be just about to fall asleep and he would be awake for hours arguing and raging with dilated pupils. When I investigated symptoms of serotonin deficiency, he had them all. And I didn't want to do SSRIs. Hope we didn't mess that one up, but the naturopath said I was right on with the supplements we've been using. There has been noticeable improvement, but I also keep wondering if there is something else lurking infection-wise. I'm thinking of halting all the stuff ds11 is taking except for probiotics, magnesium, and B-vitamins. He's resisting the enzymes after 3 weeks, so maybe his body needs a break from them. And his appetite has been decreasing the last few days (not eating lowers serotonin). So I'm wondering if his body is trying to regulate (lower) the serotonin on its own and needs a break from that.

 

I really appreciate the empathy and advice. Sometimes I feel so alone and I just want this to be over. And sometimes I lose my way when despair and desperation take over.

 

Angela (SearchingMom)

Edited November 4, 2010 by SearchingMom

[butterflymom]

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Edited October 5, 2015 by tampicc

[peglem]

My daughter does not have reactions to dyes or foodstuff, but benedril causes raging. I think that's because its anticholinergic, so it ramps up the fight or flight.

[pathfinder]

SearchingMom

Did you look into buster's new flow chart?

I think he added Mycoplasma P as necessary (recommended?) blood test along with strep and I think that is something you might want to look into.

Mycoplasmas P caused very bad headaches for my son and ibuprofen did not help him. (nothing did) I see a lot of my son's younger version in your son and I could tell you that I feel your pain as if it were my own. I will pray for your family and your son's recovery.

pathfinder

[AmySLP]

I would see a Lyme specialist first, knowing that your son has had a lot of tic bites in the past and even more recently. Ruling out this and other co-infections seems like the first step. He has more of a significant history of this than URI, strep-so I'd think you'd start here.

[EAMom]

Hi Angela,

 

With your son's tick history, I would definitely check for Lyme (and co-infections) first (before Cunningham test). Maybe someone with more expertise in Lyme will comment on what tests to run with what company.

 

It is possible your son has Lyme AND PANDAS, but either one will cause an elevated CaM kinase ll (Cunningham test).

 

One important reason to rule out Lyme first is that one treatment for PANDAS can be steroids, and you don't want to use those if your son does have Lyme.

 

BTW #1: There are dye free versions of Advil (Ibuprofen) available. That is something to try since many PANDAS kids do have temporary symptom relief/improvement with this NSAID.

 

BTW #2: I wouldn't worry at all about the low strep titers...in no way does that rule out PANDAS. Lots of PANDAS kids have low titers, even those with positive throat cultures. My dd has always had low titers, even when her PANDAS (at age 7.5 years) was severe enough to require hospitalization (OCD, acute food refusal, anorexia). Both her and her 5 year old sister also turned out to have positive throat cultures at the time (no sore throat symptoms).

 

Also, definitely, test all family members (siblings? parents?) for strep (even if no sore throat symptoms.) Start with a rapid, and do a 72 hour culture if that is neg. A PANDAS child will react if someone in the household has strep.

 

Did you already say where you live? Maybe someone can recommend a doc? (I'm also curious/nosy from a Lyme perspective.)

 

HUGS!! Please continue to keep us posted.

 

eamom

[EmersonAilidh]

Fatigue is more indicative of Lyme than P.A.N.D.A.S., or so methinks. The line is so blurred one can't really say one way or the other, but I hear of more P.A.N.D.A.S. kids dealing with insomnia than fatigue. Where abouts do you live? I think things like dye/gluten intolerances & serotonin deficiencies could definitely play a part in your son's symptoms, but I'd look more into the big ones like P.A.N.D.A.S., Lyme (especially with the ticks & if symptoms lean towards physical rather than solely psychiatric) & co/secondary infections of Lyme. The Cunningham test is definitely a good idea! I'm asking for it for Christmas.

 

Also, my GI symptoms started right after an appendectomy & my "symptom explosion" came about three or four years after. I've always wondered if surgeries/anesthetics could be a factor! I'm sorry if you've already mentioned this cos I'm in a bit of a rush to start on homework so I can't read your whole post (but I promise I will later!) but what kind of diet is he on now?

 

I think that's the lowest ASO I've ever seen! Sounds like a negative thing, but I don't believe ASO/AntiDnase-B titers to be diagnostic for P.A.N.D.A.S. If the strep~symptom connection occurred a long time ago, sometimes our poor brains just get confused & start acting like we have strep anyway. "Chronic P.A.N.D.A.S.". It's argued upon & certainly not proven, but more than plausible. Also, even if it's not strep it could be PITAND, which is effectively P.A.N.D.A.S., only with another offending infection. I don't know much about it but I'm sure others on here could fill you in better than me. :/

 

You say you say Dr. Infante in San Antonio, have you seen Dr. Rao? She's a P.A.N.D.A.S. savvy immunologist in Plano. I live in DFW myself. I haven't seen her (out of network for my insurance) but I've heard great things about her from Moms who've been denied by other doctors. Not sure if she deals with Lyme though. That's a tough one in Texas. :/

[thereishope]

I don't have much more to add than what the others said except to make a comment about the rages. The fact that you went a day without any to a day with horrible ones can be expected even with PANDAS. When you live with a child that has rages, you tend to walk on egg shells not knowing what will set them off. Honestly, it could be one day all was well and the next, something just sent him over the edge.

 

As for food dyes, I have read about kids having behaviors greatly affected by food dyes, red, blue , and yellow. Not all kids were PANDAS, but kids can have more than one issue or sensitivity.

 

You may have said this, but did you have allergy tests run on your son? I think food dye sensitivies can be run too. Kids' PANDAS and PITAND symptoms can ramp up when allergies are activated. I can see that being the same if a child is allergic or highly sensitive to dyes. There are kids on here that also have a sensitivity to salicylate foods.

Edited November 4, 2010 by Vickie

[SearchingMom]

THANK YOU EVERYONE! I've been feeling so alone with this, and your reaching out about this has really helped me. Sorry I didn't get back sooner. I've been crying almost every minute the last few days, and I'm trying to get a little more centered so I can keep up this journey. I posted on the Lyme forum to find a good LLMD, and I've got several great leads. Just gotta figure out the money and timing and what tests to do.

 

Today was supposed to be a bad rage day for ds11, but it hasn't been so far. (I don't think I clearly explained in my original post that ds11's rages used to be random, but for the last 6 days we have been able to predict when the rages will happen. Very strange.) I lowered his dose of 5-HTP back to what I originally started with, so perhaps this is making a difference. He's also off the enzymes (refuses to take them after 3 weeks) and the only other stuff he's on is probiotics, plus lower doses of magnesium and TruCalm combo. I think I might have overloaded him, but we'll see if the rages worsen at these lower dosages. He's also not had any additives, aspirin, or dyes for 2 weeks, so hopefully those are leaving his system. Our number one priority is not giving him any more - even if he rages about not getting something he wants that has bad stuff in it.

 

I wish this was easier, but I know it would be much harder without the help of all you folks.

 

Angela (SearchingMom)

[T_Mom]

You have gotten some great suggestions here I think--

 

I will mention that in our case, it was not until we saw a decrease in symptoms when our d was on a month of full strength antibiotics (with only omegas, vit C, vit D, and probiotics--as supplements) that we then began to really know it was "Pandas"...If you see a decrease in symptoms with abx and/or steroids (time and again) then it would fit the description. In our experience, this is a clinical diagnosis, with the Cunningham research to add to the "picture."

 

Re: lyme issues--of course abx are the first rung of the ladder for treatment--In our second d's case we felt comfortable starting the abx for the sudden-onset OCD issues, and initially it helped.

[Stephanie2]

Searching mom, I didn't read your whole post but read until I knew you were dealing with some kind of microbe, probably strep. You ask about gluten sensitivity, phenol intolerance, etc. and which of these things to go after. My boys deal with all of these issues. But pandas has been by far the most debilitating and I would definitley say deserves the most attention to bring life back to a normal pattern. Then you can go after the "small potatoes". Just my opinion...

 

By the way, with all the abx, he may have some serious gut dysbiosis contributing to the problem...

 

Oh, and wow you should really check out lyme with all those ticks.

Edited November 7, 2010 by Stephanie2

[Joan Pandas Mom]

Angela, I am so sorry you and your family are going through this. It gets really difficult. Have your son been tested for Lyme and related tick diseases through Igenex? Has he had an MRI?