Trying not to be disheartened..

[Lydiasmum]

So we have just returned from paediatric neurology appointment for my (nearly) 6 year old DD. Despite this appointment being set up by DD's regular paediatrician, I entered the office to find a blank piece of paper and NO history on DD's case. I had to start all over again, going back to her problematic birth. This neurologist told me "he doesn't buy into PANDAS". I took a sheet containing potted history of the 3 episodes we have experienced in the past 18 months which I firmly believe are PANDAS manifestations. He did not read it whilst I was there but asked me lots of questions. To summarise, he believe it is Tourette's and this diagnosis will in fact help to get her resources in school.

 

He based his diagnosis on the fact that DD has never been entirely free of mild movements since 3 years of age. She is good currently (since prophylaxis antibiotic 7 months ago). She is about 90% meaning that on the odd day there may be a small 'mannerism' movement or a click of the tongue. This is the way I always remember her so she is probably close to baseline. She is happy and coping well in school.

 

I came away feeling deflated. I honestly believed that the case history I had documented would make him sit up and see that this course of symptoms just doesn't seem standard Tourette's. With each episode the significant frequent urination precursor before the movement symptoms and psychological symptoms sky-rocketed. The fact that she seems a different child when in an episode. He believes the urination is an OCD/obsession/anxiety sign which is typical of Tourette's. Long story short, he actually observed her for less than 10 minutes of the 45 minutes I was there (and 20 minutes of this I was going back over old ground which should have been already at his fingertips before I arrived).

 

I feel depressed because he also told me Tourette's was life-long and did not have a 'cure', although can be managed through medication should she ever get to crisis point again. I obviously don't want this for my child and had hoped this man with all the letters after his name could reassure me I was on the right track. But it seems only this forum keeps me believing in myself, keeps me listening to my gut feeling.

 

Thanks for reading. I just needed to reach out to all of you who live this first-hand and know how frustrating getting help can be.

[rowingmom]

When you find you are at a dead end with mainstream medicine, continue to search elsewhere. Don't become disheartened by this doctor who doesn't have the open mind required to investigate further; his is not the last word on the subject.

 

For us, Tourette's-like motor/vocal ticcing was caused by toxin overload, specifically caused by bartonella endotoxins and yeast. Addressing MTHFR deletions, detoxing and support of a healthy gut microbiome has been tremendously helpful.

Edited March 27, 2014 by rowingmom

[nicklemama]

It is disheartening but you are not going to change the mind of someone who does not want to change. Look elsewhere for help. I've been through a long list. There are doctors out there who still love to learn and understand they do not know everything. The trick is in finding them.

[cara615]

Its rare that a western educated doctor will look outside his/her box and be willing to take in new information or possibilities. We have seen a neuro who gave is a dx of TS, OCD, ADHD and anxiety. We have seen a psychiatrist who has given us the same dx.

 

Through the research I did on this site and others i realized that there are other avenues to go down. We tried integrative medicine which started us off on the right foot. Then we got our PANDAS dx and have finally landed on an immune specialist that is an expert in treating ASD and PANDAS. i am also exploring Homeopathy, just had a consult today. Homeopathy is energy medicine and I have read many many positive testimonials for children with PANDAS. I am going to give it a shot because the remedies are natural and anything is better than abx at this point.

 

So I would say to discount what your neuro told you. My ds's tics would come and go completely until he had his 1st PANDAS exacerbation. Then his baseline was very low ticcing but he was rarely tic free. i hope to get him back to tic free one day but just because he isn't doesn't mean he has TS.

 

When his brother gets strep ds reacts with a flare. That does not happen with TS, sorry, it just doesn't. When DS was infected with strep himself he had NO symptoms whatsoever except for severe tics and once on abx he got progressively better. That also does not happen with TS.

 

So move on from this doctor who is not going to get you the help you need. Seek out people that believe in this dx and that are willing to gather information, do testing and get to the root of the problem. the idea is to get our kids' immune systems working properly once again!

Edited March 27, 2014 by cara615

[Dedee]

I have been through this crap with these kinds of Physicians for over 12 years. Hold your head up and hold on to your resolve. Your are the Mother and you know your child best. Dust off your pants Sister and move on! You are a good Mother and you will find the right Doctor for your child. You may very well have to travel. My first child manifested 12 years ago and we ended up traveling 12 hours to find a Doctor. It is very validating when you finally find a specialist who understands your child and understands the issue. It's worth the effort. Get an appointment with a PANS specialist. Don't mess around with main stream medicine anymore. Hang in there. You are doing the right thing.

 

Dedee

[rowingmom]

i am also exploring Homeopathy, just had a consult today. Homeopathy is energy medicine and I have read many many positive testimonials for children with PANDAS. I am going to give it a shot because the remedies are natural and anything is better than abx at this point.

 

 

Have you seen Stephanie2's postings on homeopathy? She finished posting when I was just starting.

[cara615]

No I haven't. Are you using homeopathy? How do you feel about it?

[rowingmom]

We are seeing a naturopath who is versed in TCM (Traditional Chinese Medicine) and who is familiar with the use of herbals, although he knows next to nothing about Buhner's Herbs. I have given him the books, and hope he catches up quickly. He does muscle testing for our various supplements, but I can't quite seem to wrap my head around that.

 

Anyway, a couple of months ago DD was hit in the head with a dodge ball at close range. She immediately started showing signs of concussion and the teacher called home to inform me. I figured she would recover quickly, but she didn't, and over the next couple of days complained of pain on the opposite side from the hit, dizziness, headache, a feeling of eye swelling and fatigue.

 

I finally took her to the naturopath who prescribed 7LM Hepar Sulph. This is the first time we have used homeopathic remedies for anything other than detox (and well, ByronWhite which just seems to produce herx reactions but no healing). We used the first pellets that evening and the next morning she actually said "Wow, what was that, my head feels better!"

 

Her symptom profile decreased by about 1/2. We used the remedy for 7 days, and by the end she was pretty much better. Still a little dizziness, but the rest was better. The naturopath said that if his kids had concussion this was what he would give them. It worked for us, but I'm not sure why. Can't explain it, and I have trouble with things I can't explain.

[Hrosenkrantz]

Having been to a doctor once like you described (in our case, a psychiatrist), I found that the non-believers basically ignore all the signs that bolster the autoimmune argument and cling to the signs that point against it. So if you have evidence of your kid improving with antibiotics or steroids, but they are still not back to baseline -- the improvements are ``coincidence and irrelevant'' because the treatment has not cured them.

 

Just like a neurologist told me once she concluded that when she found herself reciting the hypocratic oath to the insurance company, it was time to move on, these kinds of doctors are not worth sapping your much-needed energy. Your goal here is to help your child, not change minds. If this dude isn't helping your child, don't think about him anymore. Sorry you had to waste your time and were disappointed.