julie_2girls
-
Posts
29 -
Joined
-
Last visited
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by julie_2girls
-
-
OMG this is my girl. Making an appt on Monday to get her checked. i wish I knew about this sooner. Our poor kids just think it is normal for words to jump on page or blur. I know understand why she hates reading, tries to pick books with larger font, smaller chapters and fewer pages….lots of headaches and homework takes hours and hours now (common core not helping). I am actually excited to know there may be more then lyme disease/pans and something we can do about it. I have a name of a developmental optometrist i just happened to have saved not knowing i would ever need it:)))0
-
I like SFMom recommendation of trying to see DR Horowitz...if we lived on that side of the country we would have gone that route...he talks about multi-systemic infectious disease syndrome - which many of our kids have: infections, autoimmune, mitochondria issues, neurological, endocrine, etc...he is comprehensive in his approach. Never been to him but he is one of the best!
-
Thank you so much for the response. yes we have a long journey... our llmd said 2 yrs. so i guess my ocd is coming out since we re only one week into first abx, lol. I believe the rages are what make it so hard right now.
I appreciate your guidance. It is hard because so many people tell ivig success stories and you wonder what will it do for our child. what I do know is I trust our llmd. He sees both pans and lyme all the time.
I cannot imagine my daughter's eye back to normal, it has been so long. thank you for telling me that part. we are doing a lot to heal her gut and work on detox. she is very ill and it has gone on so long undiagnosed.
Okay slow and steady...i know that but need reminders when I start to freak out:(
-
wow this was helpful! my 17 yr just started abx for lyme (she also has babesia, bart, ehrlichia, mycoplasma, viruses, mold toxicity). we will be adding in malarone for babesia and then another abx. We may go to bicillin injections very soon too since she is tolerating the omnicef (well except for the herxing but that is telling us something is happening, right). she also needs to use alinia to get gut parasite and then antiviral. so i have 7 prescriptions at home we will be adding systematically. only one week into the first abx and the herxing is crazy with increase in rage. why does it have to be that symptom! yesterday i was seriously afraid for my safety. i was by myself. luckily today is much more mellow. i guess if i know they will eventually stop and maybe for a whole day we can do this...it is frightening but i guess necessary. ugh! thinking ivig needs to be in the plan soon too. we have mostly been working on gut health, detox, methylation the last few months. now we are into the killing bugs part (finally got to see llmd). hold on tight!!! it is so helpful to hear others that have been thru this already:)
-
Daughter has not been on abx until one week ago. She is newly treated by llmd and was found to have lyme, babesia and erhlichia all on labcorp. she has bartonella rash, elevated titers for ebv, hhv-6, has MARCoNS, gut parasite and PANS.
I am not sure how much is Bart, herxing and/or autoimmune encephalitis. Question is should we try IVIG right off the bat OR do we need to get some infections down?
Daughter has been sick,homebound for over 2yrs diagnosed with POTS, MCAD. she is going to be 17. pretty sure our llmd plans on using IVIG all along I just wonder timing? did some of you wait and wish you hadn't, etc???
fighting with insurance company already they are not paying for phone consults. our dr is in northern calif. travel is almost impossible right now...
thanks.
ps biggest symptoms are rage, ocd, pretty much all the neurpsych stuff. daughter has huge pupils!!!
-
wow it is crazy how much we all have to deal with. Having more then one child sick too...I don't know how you do it.
I live in az so dont think of mold. If there is something it will be a leak somewhere. i hope no remediation is needed. we will see.
we see pans/pandas neurologist and then psych nurse end of this month. i want to wait to add abx - the last few times we have tried she got so sick...i think if we can build her up she will be better ready if we need to use them...seems shots or iv would be less harsh on the gut...
thank you.
-
Thank your help! It is very helpful to know others have dealt with all of these problems together. So far we are addressing my daughter's gut health - detox mold and get immune system moving again. We then plan on working on methylation. she has 13 snp's. Lots of issues with that. After we get methylation working better then we will see what is leftover. thinking LDN may be a good choice, since daughter has hashimotos and psoriasis. plus the PANS.
Mold inspector comes Monday. So we will see. I am a bit nervous but we need to know.
I may have more questions as we proceed.
thanks:))
-
Okay I am thinking all 3 going on here. Her immune system is not fighting. CD57 was 36 - low. I am still waiting on interpretation of her lyme test. It looks like chronic lyme to me. We know she has mold and she has all the neuropsych sx's of PANS. UGH!
working on gut first- detoxing the mold, then onto methylation.. she has 13 snp's.
anyone on a similar journey. abx make her very sick. we are waiting to start until gut better and try to wake up the immune system.
looking for input, support, thanks:)
-
Using supplements: like lipase, phosphotidylchloline and butyrate, probiotics, etc...
So sorry. How are you detoxing for the mold?
-
yes POTS, MCAD, now mold and lyme...it seems her systems are not working....we are starting detox for mold first. she also has methylation issues...13 snp's...OH and probably Pandas/Pans. she gets very sick with ABX.
quote name='philamom' timestamp='1352934822' post='149784']
I would say yes
Is your daughter still dealing with POTS like symptoms?
-
Test results just in:
Just picked up copy of Igenex. IgM negative but IgG western blot positive with 5 bands, 30 +, 39 +, 41+++, 58+, 66+, 31 was IND.
Does this mean lyme? she has the symptoms unfortunately...
J
-
My daughter's naturopath is willing to run lab tests and prescribe meds. I think we will need some advice from an expert due to my daughter's complexity, dysautonomia, psoriasis, hashimotos, mvp, food/inhalant allergies. Do any of these docs do phone consults with patient and then recommend tests and treatment to local dr? We are traveling already from AZ to VA to see autonomic specialist this Feb 6th. I am trying to avoid another travel due to expense and the sig challenge to travel with daughter (15 y/o).
any advice is appreciated. I did get an email response from dr K that it is likely my daughter has PANDAS based on her hx. I just want to pick the dr that would encompass all her autoimmune issues and understand dysautonomia. There are not too many experts that treat dysautonomia and none on the west coast. The famous expert is a one year wait: dr grubb in Ohio.
big thanks!
-
It is a lab test that measures cytokines, neurotransmitters, hormones to assist in determining what is happening. I do not understand it all. Your prescribing dr can discuss the finding with the doctor who interprets the results. That dr came back in Dec 2010 and said strep is suspicious in my daughter. She had all kinds of inflammatory markers that i can't begin to explain like IL-1B, IL-12, etc...all foreign to me. The point is we have been trying to do detective work for some time. I think appropriate to treat and see how she responds. we will most likely need to consult an expert with PANDAS. I am trying to learn what i can to share with our very open and willing to help naturopath.
My daughter most likely has MTHFR issues too. I have compound heterozygous for both MTHFR. She takes metagenics folate, b12 injections, and reduced form of b6.
-
My daughter was diagnosed with dysautonomia last Sept. She has been showing symptoms of PANDAS but I have not been given a diagnosis. I wrote dr. K and he said based on the history it is very likely. Probably will end up doing a phone consult. I am spending time/money traveling to Virginia to see dysautnomia specialist - we return in February. Most of my energy has been on learning about dysautonomia - she fits this dx perfectly. All testing tilt, valsalva and breath test confirm dysautonomia. MRI and EEG normal.
well my daughter's ocd behaviors have been on the rise. She is 15. She has intrusive thoughts, separation anxiety, mild age regression at times, anxiety, fears and mild tics (just a coulpe like hair twirling/pulling and lip biting), anger with outbursts. All these symptoms come and go. Much worse at night.
The biggest most consistent symptom is largely dilated pupils and it is always when she feels bad. this symptom is also part of dysautonomia. She also has significant brain fog. she is moody for no reason. She is aware that her behaviors are not rationale. it really bothers her. many symptoms fit both PANDAS and dysautonomia.
My daughter went from being in 5 honor classes last August to now homebound keeping up with just 1-2 classes. She has poor tolerance to being upright due to the drop in blood pressure.
She has psoriasis, hashimotos, probable mast cell activation disorder, sig allergies with IgE over 2000, mitral valve prolapse and hx of strep infection in May 2010. Anxiety increased after that time.
Okay to my question. Our naturopath believes my daughter's problems stem from strep. She has had some neuroscience testing which pointed to strep too. her titers were normal the two times we checked last time last Sept 2011. Her streptozyme was just barely elevated - not sure what that means.
So i have been reading and decided to try azithromycin and steroids to see effect.her naturopath is not an expert but knows enough to try treatment. she also knows my daughter well and her sensitivities. My dgtr does not tolerate penicillin, my husband is allergic.
So we started azithromycin last Wed 250 mg 2x day first day and now 1x day planned for 10 days (with assumption we will go longer but just want to see what happens with 10 days). We added in medrol dose pack last Friday with taper due to believing all of this is an inflammatory response esp with her hx and our family hx of autoimmune disease.
Does this sounds appropriate? So far she is having worsening unreal feelings. Not much change yet. today is day 5 of steroid and day 7 of antibiotics. We are trying to hang in there with the side effects.
The is more to her history...biggest part is LDA immunotherapy last August triggered a worsening of all her symptoms which landed her in ER 6 wks later stuck in tachycardia. Dr had added in strep as part of the immunotherapy which probably was a bad idea. I was not knowledgable and was told it would help train her T cells and slow the molecular mimicry issues which was probable cause of psoriasis. The symptoms got so much worse after immunotherapy that it was easy to determine dysautonomia (POTS).
Sorry so long. It is hard to ask questions without giving history.
Also how much advil? I think it may help her she has always felt better taking it.
Thanks
-
Thanks I pm'd and emailed you back:)
-
My daughter was diagnosed with dysautonomia last October. We have our second visit with autonomic specialist next month traveling from AZ to VA. Well it is becoming more apparent that we are also dealing with PANDAS. I am considering a phone consult with Dr. K. I wonder if there is anyone in AZ that treats PANDAS with antibiotics, IVIG?
Considering asking for a steroid burst to see if ocd may be autoimmune (PANDAS). also going back on antibiotics I hope too. We see our dr tomorrow.
Daughter's biggest clue she is feeling horrible is large, large pupils. This is also common in dysautonomia from adrenaline surges. I was surprised to read recently common in PANDAS as well. I guess nervous system affected in both. There is some overlap with anxiety, brain fog, dilated pupils...
Thanks! i am going broke traveling. Now I am thinking she has 2 major issues, not including her already dx'd hashimotos and psoriasis. She is 15 y/o.
-
i wonder about steroids helping her. she does well with ibuprofen. i will ask her dr this week. i hear that once you stop the steroids symptoms come back, is that so? i take hydrocortisone due to adrenal fatigue. she is on florinef due to dysautonomia and probably low aldosterone. so interesting to think about steroids helping...
-
I did a search but did not see this discussed. Anyone try LDN for autoimmune disease. I saw on one site it may be indicated for PANDAS.
my daughter has autoimmune diseases: psoriasis and hashimotos and most likely autoimmune POTS. So thinking it may be worth trying but we cannot afford to make her worse.
thanks,
Julie
-
thanks!
-
the hospital did mri and eeg (all normal) and then sent in cardiologist to evaluate. he gave us the diagnosis. he was not an expert but recognized the symptoms. he started her on florinef and salt tabs. we then realized we needed to see an autonomic specialist. i contacted dyna kids to get guidance. that is a helpful foundation to support families, kids with dysautonomia. feel free to contact them to help get guidance on finding dr etc.
i would not be surprised to find out that in some kids with pandas (triggered by strep) would also have dysautonomia symptoms since i have been told it is triggered by an infection too. i think the addition of growth spurt with hormone changes can combine into a perfect storm and cause dysregulation of the autonomic nervous system.
we were addressing pandas symptoms after the LDA and then once dx of dysautonomia started focusing on that. now that we have started treatment with dysautonomia i realize the ocd issues are still there. i am going to discuss getting back on antibiotics again to see if we can improve symptoms.
we had tilt table test at the pediatric cardiologist that specializes in dysautonomia. we had to travel out of state. he also did valsalva test and breath test. my daughter's bp dropped with all tests.
hope this helps.
-
very interesting Kim. Dr. shrader said psoriasis is often a result of molecular mimicry in response to strep. that is why we did strep has part of the LDA immunotherapy. i was so excited that we were addressing the root cause and would see changes in her, instead we got worse ocd immediately (i guess due to breach in blood brain barrier) and obvious dysautonomia symptoms which sent us to ER. i wonder if they are close to finding a treatment without making things worse. the one thing that helped her psoriasis immediately was Armour thyroid hormone. being gluten free has helped too. my daughter use to have hives bad as a baby and toddler. she does not get them any more. thank you so much for all the research. we got some smart moms on this forum, lol! i do think the support and research we all do help us get some answers. big thanks!
-
very interesting Pmom...
i think measuring neurotransmitters is difficult. we did do a neuroscience test. funny because seratonin was high but interpretation is important. if i remember right her dopamine levels were low. i get confused because i would think having higher seratonin would equal improved well being but that is not the case. this lab test is expensive and completed a year ago so a lot has changed. i know neurologists at mayo measure norepinephrine levels from supine to stand and with overactive sympathetic system, hyperadregenic forms of POTS the levels more then double.
i appreciate the input!
-
Thanks Kim, we are addressing b vitamins no big changes.
my daughter does not have hyper mobility in fact she is the opposite. she does have mvp, psoriasis, hashimotoms and major food/inhalant allergies. IgE over 2000. steptozyme came back just barely over the range. i do not know a lot about the labs. her titers were fine if i am remembering right. we did one month of antibiotics in the fall. she still has ocd issues however we are more concerned about all the POTS symptoms leaving her barely functioning.
i thought there may be other teens going through this. dysautonomia is most likely triggered by an infection i was told. so i would not be surprised if others dealing with pandas have dysautonomia. I know that is such a general term, it can effect /cause issues GI, heart rate, orthostatic hypotonsion, anxiety, dizziness, tremors, brain fog, irritability.
my daughter has a lot of brain fog and anxiety. she cannot be upright without increasing symptoms.
she is on meds now to try and control bp.
thanks
-
I posted this on ocd forum:
Okay since i was last on here asking about LDA immunotherapy and ocd, my dgtr was in the hospital for 4 days. After MRI, EEG, etc she was diagnosed with dysautonomia. I have been wondering since dysautonomia can be triggered by an infection(strep) if others have children with it? she has gotten worse since immunotherapy and now is homebound cannot go to school. We have tried ssri's and have learned she can only take a small dose, cutting the smallest dose in 1/4 or 1/2. I saw an article on this site discussing this exact finding. Wow! any input, insight appreciated. She still has ocd however there are more worrisome symptoms now, like inability to stand for a short time, major fight or flight symptoms.
one last question are dilated pupils part of pandas? she gets this when she is feeling the worse, it is also a symptom of dysautonomia from adrenaline, which I guess Pandas could be a subgroup. Tilt testing found neurally mediated hypotension. I believe she has POTS - tachycardia being the reason for the hospitalization.
thanks,
julie
Very high dopamine d1 what does this mean on cunningham?
in PANS / PANDAS (Lyme included)
Posted
Got results, talk to LLMD on Wed next week. My girl has high numbers and lots of neuropsych symptoms: depersonalization, derealization, environmental agnosia, ocd, intrusive thoughts, etc. AND along with lyme, babesia, erhlichia, anaplasma, bartonella, chlamydia pneumonia, high EBV and HHV-6, compound hetero MTHFR, psoriasis, hashimotos, POTS, MCAS basically MSIDS poster child!!!!
results without the d2 due to mfgr delay:
dopamine D1= 16,000 (range 500-2,000)
Lysoganglioside = 1,280 (range 80-320)
Tubulin = 2,000 (range 250-1,000)
CaM Kinase II = 131 (range 53-130)
She had not had any steroids OR IVIG prior to test. We did do one IVIG right after the panel was drawn- no big changes...
She has been on IV ABX for lyme, antimalarials, lots of support care including methylation. any input on test results?? we are doing Pharmesan Neurotransmitter test and NutrEval.