2 PANS kids fighting lyme and coinfections, our journey to healing

Medical Practitioners

It’s always a good idea to find a sympathetic general practitioner in my opinion. Because they see many kids, in many situations they can often advise you on what other parents are doing, what they are saying about local therapies and where to find additional resources. Use your doctor!. He can also run blood work to rule out things that might be causing negative or odd behaviors and in general keep your child healthy. We get so bogged down sometimes we forget their annual physical but its an important part of their development. It took a fair amount of time and a couple of practitioners to find a good fit but it was worth the wait. Our current MD is helpful, interested and thinks outside the box. He had some good suggestions of things to look for like thyroid functions, Vitamin D levels etc. Well worth seeking out a doctor who has time to listen to you. Do not stick with a doctor who minimizes and belittles your concerns, there are plenty of good doctors out there who will be an advocate for you. I have yet to find an MD yet who doesn’t accept our insurance!

If your child is showing signs of worsening behavior in the classic spring/fall seasons, or has stomach issues, sinus issues or maybe eczema it might be worth getting a referral to an allergy doctor. They can run both food and environmental allergy tests to see if anything in that regard might be making it hard for your child to function. We have done both the blood and skin testing (apparently food allergies show up better by blood work and environmental allergies are better detected by the skin test, not sure how true that is but that’s what we were advised of.) It took until age 5 for him to tolerate either the blood draw and specifically the skin-scratch test. We had tried when he was about 3 but as soon as they put the allergens on his back he rubbed against the table and removed them, waste of time and energy, but he managed much better the second time we tried.

Our list is very extensive for environmental allergies and he also reacted in the blood tests to apples, wheat, corn, dairy, tomato and peanuts, so it was worth it for us to do the tests. The skin test took about 20 minutes after they used the board, he was a very unhappy camper that day. His back swelled up pretty significantly on a lot of the pricks and the worst part was that he itched. He barely hung on for the reading, but he was a trooper and we got the results read. When I wiped his back he begged me to scratch it for him! The blood test was more involved and he donated about 5 vials of blood all together. Those tests were looking for about 40 or 50 food reactions I think, so only 5 coming back as significant was a good thing. His apple reaction though was the highest possible reaction, which I thought was interesting. I have never met anyone allergic to apples before!

Now we avoid mostly the things on the list, environment is harder of course. I never let him eat apples as his mad spinning, bright red cheeks and fine motor skills are so much better when he avoids it. The wheat and dairy tend to upset his stomach. The corn, tomato and peanut seem to not actually have an effect on him so even though we avoid them mostly I don’t worry too much if he eats those things. We do carry an EPI-pen everywhere we go as well as his ventolin inhaler, just in case, although even when he was stung by wasps he didn’t need either thank goodness.

This was all covered under our health insurance, had we chosen to do allergy shots they would have been covered to a point but I think it was going to be around $25 a shot.  The shots begin with multiples then fairly quickly taper down, after we researched it we decided to try a different route to manage his allergies.

We only recently managed to get a referral to a pediatric neurologist. I don’t know why we have never been told that this would be a good person to consult with? Not sure who should have told us that, but possibly our child’s doctor? Anyway, as good pediatric neurologists are few and far between here we waited 6 months for an appointment to meet with someone about an hour from our house. We are currently waiting on an MRI and genetic testing (yes this part was suggested at first and I am now seeing the benefit of ruling out the genetic possibilities that can also cause similar symptoms). With hindsight the genetic testing would have been done at the start of all this. Oh well, hindsight is just that isn’t it? We have an MRI scheduled for Feb. 21st so I won’t know more until then. Interestingly this neurologist after the initial consultation still feels our son will qualify for a PDD-NOS diagnosis. This has been a recurring theme throughout the last 6 years it seems. This is all covered 100% on our insurance, less the copay for a specialist of course.

It took asking around to get the right doctor as there are a couple around here who have an awful reputation so I am glad I asked around, I posted to the local citysearches to find someone most people felt they could trust.

Again a skill sadly lacking around these parts, we did see one originally and would love to have found someone similar here, but for right now that isn’t an option. Again we are lucky that our GP is such a great doctor otherwise I think I would be spending more time looking and probably more time driving around to find a good developmental pediatrician. It is worth it to note, that our first pediatrician was exceptional, she identified his problems and referred us to the right places, I know there are many pediatricians who will urge parents to hold off and wait and see. Personally I am forever grateful that our pediatrician was proactive. Maybe our son would have matured with no therapy to this point, sure, but what if he had gotten worse, what if his autism behavior had driven him further into his shell? I would be wishing for different right now I am positive. So, without the benefit of hindsight we chose to be proactive as well.  May not be right for everyone, but it’s what felt right to us and still does.

© Loving the Spectrum