Posted 10/7/2016 4:27 AM (GMT 0)
jennydancingfish, btw getting the abx for my stomach for the first time was a royal hassle. I guess its pretty expensive. Insurance doesn't like to pay so it had to go thru an approval process. Being as sick as I was I was like Varuka Salt (I want it and I want it now). But it was approved for 12 months so now if I start having symptoms I can just call the doc.
Huddle, yes its the Dr J you are thinking of although I didn't know he wrote books. His clinic website has lots of info tho. He was originally in NC & was a leader in HIV/AIDS treatment. Eventually, he started seeing Lyme patients and his practice became all Lyme patients since HIV/AIDS was under control. BC/BS didn't like paying for the treatment he was providing and reported him to the medical board. They revoked his license for a year but immediately said we'll stay the suspension if you agree to use only approved treatments. BC/BS then sued him. Took everything. So he moved to DC.
I also believe he is one of the docs in Under Our Skin. If the mods are ok with putting his full name in I can go back and edit the posts.
To members new to the forum, we do not normally post Dr's names or their initials but there are a few who are nationally known and are able to openly practice without getting in trouble.
Both my kids had recurring ear infections followed by recurring strep. My daughter was always in the 25% range. My son was 10# 2oz when he was born. 90% for weight and head circumference, 50% for height but it was down hill from there. He never went up just a steady decline.
My daughter went through puberty and was very well developed (both sides of the family are very large breasted) but her height fell off the chart.
Both kids were underweight but were on ADHD meds (unrelated to the Lyme, my husband has it but it was undiagnosed) which suppresses appetite. The pediatrician prescribed cyproheptadine which is an old allergy med that has the side effect of increasing appetite and that helped some but not enough.
With my daughter, the pediatrician decided to check her thyroid because it wasn't normal to lose height when your body is developing properly otherwise. Also, I had been started on thyroid hormones a year or two before. She had low thyroid and she was put on Synthroid. She recovered her height and eventually climbed up to almost 50%. When she got to college she stopped taking it but doesn't seem to be having any issues right now.
My pediatrician said that she didn't usually have boys with thyroid issues but the ones who she did have all had mothers and sisters with thyroid issues. So she ordered thyroid hormone tests and at the last minute added growth hormone. The growth hormone was abnormal but growth hormone is hard to test for. You do grow while you are sleeping. Your pituitary gland secrets hormone at night.
Even as adults we secret growth hormone but at a lower level. It helps in body repair and is one reason why bad sleep has such an impact.
There is a special test for Growth Hormone deficiency. Has to be done as an inpatient but is done during the day. Takes about 4 hours. They take blood then give you(or your child) a shot of a med that tricks the body into thinking its night time. Side effect is you sleep but they have to take a blood sample every 20 minutes so its not good sleep. They look at how/if the body responds by producing growth hormone (or the proper amount). My son failed the test completely.
Another thing the peds doc did was a bone age test. Its an x-ray of the lower arm. Kids grow at a certain rate and they measure the different bones (like wrist bones, etc). They can age the bones by those bones. My son was way behind and generally 2-3 yrs off. My daughter was off when she first started synthroid but gained each time.
Took my son almost 6 years of GH shots, daily, to get back on the growth chart at a reasonable level. Endocrinologist kept him on it until he wasn't making progress & the bone age had caught up. He has topped out at 5'7" which is reasonable because I'm 5'1" and my husband is 5'8". My daughter topped out at 5'6" with just the Synthroid.
But during the appt the PA (peds) said that recurrent ear infections and strep and failure to thrive are things they look for in pediatric patients that may not have other obvious symptoms. My son as a toddler/elementary schooler has pain (legs especially), canker sores & other symptoms I've had. The leg pain was the kicker for me tho. At around 7 yrs he crawled into our bed one morning and said "my legs hurt more than normal." It broke my heart. "growing pains" aren't normal and while on the growth hormone they were nonexistent.
Now his symptoms are mostly anxiety, rages, inability to sleep, phobias, sensitivity to touch (clothing tags, different cloth textures, food texture, etc), easy frustration and fine motor deficients in his hands (diagnosis motor dysgraphia which makes him unable to write). Probably others but the way a 17 yr old sees things and what he tells his parents leaves lots of room for missing info.
I think that the growth hormone revved his immune system and it allowed some amount of decrease in symptoms.
What is the difference between my kids (I had full blown systems during both pregnancies)? My daughter was on preventative antibiotics for almost 3 years due to the ear infections. With my son, they used tubes instead. I think my daughter escaped it because she was on abx soon enough and long enough to essentially eradicate the bacteria.My concern is when she gets pregnant but we'll have to wait and see.
School is/was tough. So my son is gifted but with PDD/ADHD and fine motor deficits (causing inability to write legibly). We had him in a magnet school that offered electives during elementary school and that helped with the gifted part. His teachers were great for the most part. Some recognized specific things that pertained to the specific difficulties he has without me pointing them out. Them I loved. Some got the sharp end of my tongue. I had already been through everything with my daughter (7 years older also with ADHD) and learned how the system worked. I knew what I could and couldn't ask for.
When he moved to middle school we had issues. The bus ride doubled (to 1 1/2hrs one way) and he ended up with the elementary school bully on the same bus. This caused him to get several suspensions (doesn't matter who started it, they suspended both which my son rightly felt was unfair). He fell behind in some classes (math due to difficulty writing), some teachers were uncooperative with his accommodations. Social Studies teacher balked at allowing him to use an iPad. Math teacher balked when I requested extra time. He had started failing the tests because his writing was slow & illegible. I requested extra time she told me no. The head of his team (LA, Math, SS and Science teachers are a team) said yes and the Special Ed teacher said yes. As a parent, you have as much of a say in the accommodations as any staff member. If you ask and its reasonable/accepted for the child's diagnosis, they have to give it to you. Will they always? No, but you are your childs advocate and having been thru it with another child I knew what was reasonable. His LA teacher was the head of the team and we had a good relationship. She gave him the login to the computer network so he could print his in class assignments & we talked all the time even if only by email. She even purchased her own iPad after seeing how much easier things worked for him and what it would allow her to do.
But by the end of 6th grade we decided that the day was too long with the bus ride. It was also too much on me to have to travel that far when I needed to go there. The bus bully wasn't going away anytime soon. The uncooperative teachers.
We decided to homeschool. How do I do that? with extreme difficulty. But i have a bachelors and a masters. I trained new engineers in my department (when I was working) and wrote/taught several other training courses for more experienced engineers. The math and science are pretty easy for me. The LA and Social studies are harder to teach but I love both & many teachers have their entire curriculum available online (including prerecorded lectures).
I'm also lucky in that he really wants to study music. He is mostly self taught although he is taking drum lessons (yes they're loud). Even with the drums in the 6 months he "messed around" before taking lessons he went beyond their standard class material. The teacher is perfect for him and they work on whatever songs my son wants to learn. He tends to pick really hard things so they spend a lot of time working out the beats & other particulars. They actually just increased to an hour.
He has also taught himself the 3 different types of guitars and is shockingly talented. We're adding keyboards in. I'm also planning on using a couple of online college classes - music theory, song writing, music production - that will flesh this out.
Socialization. So both my son and I are extreme introverts (LOL I know I just wrote like a 3000 word essay but social media is different). We learned a long while ago (through a great psychologist we saw) that for an introvert being social is extremely draining (unless it was something right in our wheelhouse like my training new engineers. I knew the info backwards and forwards.).
So by the time he would get home from school, he'd be exhausted and frustrated making homework difficult. Forget things like Boy
Scouts. When we switched to homeschooling things got way better. Because he wasn't having to spend energy all day on being "social" he wasn't exhausted by the time he got home. Boy Scout attendance got better (until he grew apart from most of the kids as they each had different interests).
Now he is part of the YMCA Leaders Club. You would know he was an introvert because he is comfortable around the kids and counselors (many years of summer camp). He goes out and volunteers even when he doesn't know anyone else who will be there (they have to put in 100 hrs of service each year as well as maintain a specific gpa).
He does other things with kids he knows from LC including stuff at the local high school. Tonight he went to a football game and in two weeks he's going to homecoming (as a guest of a friend). He knows a lot of the kids because many have attended the Y summer camps.
Homeschooling means you get rid of the busy work. It also means if its a bad day or he wants to spend more time on music one day we can do that.
In the end everyone needs to do what is best for their child and family. For us that was flipping things around.
Girlie, yeah it was great. They tell you to plan on 3 hours for the intake. Lot to go over.
I'm 4-4 1/2 hrs from DC. It's a drive but if my husband is home (he travels for work) he drives & if not Amtrak goes directly from my town to DC. Still costly because you need min two nights hotel.
Plus the office visits are pricey. We are very comfortable but it cuts into our savings for retirement. We decided a while ago that it was worth it. I've been so sick for so long and the opportunity to get better is worth the cost. We understood potential costs before making the appointments because someone who my husband worked with had a wife who needed iv abx. He told my husband the cost. We believe they eventually got the insurance to pay but I'm not willing to risk them cutting me off from the Fibromyalgia treatment (really just meds that help the symptoms) because thats what lets me make it through the day.
One of the best things that Dr J did was make my husband understand my pain and where it comes from. He said there are two kinds of pain. The joint/deep muscle pain and the "don't touch me" pain. He explained the "don't touch me" pain comes from the Lyme&Co destroying the nerve fibers sensitizing the CNS to the point that just someone brushing against you is aggainizing. That alone was worth the cost.
So yes I'm lucky that he's that close. I'm also lucky that they have a peds specialist. She'll take care of my son until treatment is complete. He explained everything. For me, I have to have a bunch of tests so they can catch the outliers and determine what needs to be addressed even tho they won't work on everything at once (Thank God, that would kill me). He explained that treatment may cause those outliers to disappear even tho the underlying problem still exists so we capture them now.
I really liked him and thought it was worth the cost. Don't get me wrong, he also said its not a matter of just giving people pills or iv abx. It takes significant commitment on the part of the patient but I knew that going in.
Sorry to get so long and windy, but I'm really happy with where I am right now and want to share. Doesn't mean I won't have setbacks. We all do. But for the first time in decades I feel I'm moving forward instead of backwards.
If you reply and/or ask a question just be aware I haven't been logging on every day. For the last 9 months I have been otherwise occupied but I hope to get back to at least checking my mail everyday even if I don't log in and read everything.
Kim