cobbiemommy

My ds14 had T&A almost a year ago now. He had never had anything but sore throats with no strep but doctor recommends all PANDAS kids to have them removed because they are a major blockage and major holder of all kinds of germs, infections etc. According to the doctor, he is healing extremely well, although we are probably still fighting mold issues in the home and detoxing with him. Removing the tonsils has probably helped in the faster healing. We also found MaRCONS in a deep nasal swab he had done during the T&A. Which was great since we could then treat that for the next 2 months and hopefully got rid of one more thing taxing his system. Dr. waited to see adnoids before taking them out. It took about 2 1/2 weeks for him to come back from the surgery. It was difficult when he had the surgery because he had been having flu symptoms for a year, so the rest was on top of that. He does not like to take naps, so when I brought him home from surgery, left my older son with him for an hour to get his meds, and when I returned he was sitting up asleep on his hand on the window sill. It was pretty funny looking. The fresh air helped his naseau a bit, although he had stomache issues before surgery, so surgery meds just made it worse. Dr. gave us a list of things to get and use right after surgery some of which are the homeopathic little balls you put under tongue (sweet tasting) for every possible side effect of the surgery. PM me if you want the list/instructions. Did not seem to have any "PANDAS-like" flare up or anything like that. Which doctor recommends that all PANDAS kids get them out? If I thought it would help, they would be out in a New York minute. Cobbie

DS, only tested positive on a Streptozyme titer test. He had no antibodies, so no increase on ASO or anti/Dnase B. Prevnar vaccine is not always given in every state. Evidently it is not required in Mo. I would consult an immunologist, before letting anyone immunize your child or give the Prevnar. Who is doing your IVIg?

My son, soon to be 13, would be interested, but I have not let him get a Facebook acct. They are really struggling through all this.

We finally got the call, today. Approved for one year of IVIg every eight weeks. I am just so thrilled for my son and my family. He will be 13 in a few days and we have been dealing with infections and illness since he was very little. Now we just have to hang in there until July when he has his IVIg. Cobbie

I live in NWest Missouri and although there is one doctor I liked, she runs tons of tests and the insurance company will not touch her with a ten foot pole. They also will not pay for anything she orders! We found out the hard way, over $20K later. We traveled to Chicago for Dr. K and then CT for Dr. B. Do not put any faith in Children's Mercy. Sorry! I will PM you who to avoid.

DS, 12, has no antibodies for strep, has been on antibiotics for over 18 months and still gets strep. Dr B wants IVIg every eight weeks for one year. His total IGg is below range, but not below 700. Physically, he is exhausted all the time, stiff in the major joints, has anxiety, rages, etc and has many allergies. We could do a couple of IVIgs if we refinance our house and some cropland, but we could not make it to a year. What is the next step for an appeal? We already have Kevin Flynn of Healthcare Advocates in our corner to help with an appeal. Cobbie

My son rarely swabbed as positive. The strep was hiding out inside the nasal tissues, under the skin. Have you had your children's streptococcal titers checked? This measures their antibodies to a number of varieties of strep. If they don't have many antibodies, antibiotics are not going to do much good. DS, 12, tested positive on Streptozyme screen while taking Clarithromycin, Clindamycin, and Minocycline. Those drugs should have been enough to kill strep in a normal person, but since no antibodies, no defense. Has your child had the Prevnar vaccine? I cannot stress enough to get these things tested ASAP. Cobbie

IGA Sublasses, all are within range, although IGA1 is low normal. Anti-Streptolysin O is negative at 73 (thru Quest). DNA (DS) antibody is a one, which is negative (for Lupus I believe). He is still only responding to one serotype of Strep and that is serotype 3, all others are below .7 except for Serotype 14 which is 1.8. We had these labs done at the request of the insurance company. They hold his IVIg future in their hands. Right now my hands are praying and typing that this will be enough. Anyone know the significance of these???? Cobbie

Dawn, When I called there, they informed me that they did not see pediatric patients. Cobbie

In hindsight, I know there was a problem early on. Son always had sinus issuesm he was seen 12 times in 24 months for sinus or ear infection. Also, he had red cheeks starting at 4 months. By 18 months, he was picking at his fingernails. We have doctors notes and all of these things were listed as concerns by me, but there were no red flags to anyone else. Humpf.... Also, son never napped after he was two. NEVER! Cobbie

I feel for you, your daughter, your son and the whole situation. We are/have been in the same boat. It sucks. People love to gossip and make themselves feel superior by making someone else feel inferior. Your daughter will learn and grow from this experience. It is not what you would have wanted to happen to her, but it is how she responds that defines her! I used to be the most people pleasing apologist for my kids. Not any more! Only those of us who have lived this life get to judge our own little family unit-no one else! Just like I don't know how hard it is to parent a child with diabetes or cancer, they don't know how hard it is to parent a child with PANDAs. Also, you will find a lot of love for people who accept and welcome your child just as they are. They are the true gems in life. Getting off my soap box now. Hope you have a good day. Cobbie

I think it depends on the child. Have you had your child tested for strep antibodies? Do they have any? If there are no antibodies, then IVIg will definitely help. Also, an immune system that is not fighting strep all the time, can turn it's attention to getting rid of anything else in the body that doesn't belong. Also, does your child have IGg deficiencies? If so, then another round of IVIg will help. IVIg is not a magic bullet. It gives your child something they are lacking. When you can figure out what that is, you will know if another round will help or not. Cobbie

Awesome. I am jealous!

I have no idea how they will handle this. I have only worked for this company for three months, but I am very hopeful. I am hoping to get it approved because of lack of strep antibodies and low igg. Also, like most people here, his condition has went autoimmune. Will request that the doctor expedite the request. Cobbie

The waiting starts all over again. Somehow the left hand didn't know what the right hand was doing and the doctor's office filed for IVIg under our old insurance. We have now wasted three weeks. I am so discouraged as I see my son getting more and more fatigued and cranky. How frequently can a steroid burst be done? It has been nine weeks since the first one. Waiting is definitely the hardest part. Cobbie

DS, 12, is greenlighted for IVIg from doc, but we are waiting (in our second week) for insurance approval. As soon as we get that, we are getting our tickets and on our way. Talked to LLMD, and he said that there was no sign of Babesia, but we would keep treating Bartonella based on rash and symptoms. He is taking Biaxin and Minocin for that part and Augmentin for the Strep issues. We are taking a lot of Sacc Boulardii to help prevent diarrhea. Today, he had allergy shots (3) and orthodontia visit. Never should have been done on same day. Son is crying about the braces, sad about all the meds and shots, etc. He is really bummed. I can't say I blame him. Only good thing is his sadness was rational and reasonable, but still heartbreaking. DD, 15, started Biaxin as well for her Bartonella. She was already on Minocin. Now, she is seeing an increase in her energy levels and a decrease in her rash. Hope she is over her symptoms in a short while. I am asking for prayers for insurance approval for DS's IVIg. I know from past experience, he will feel better and have more energy. He is like a different kid after the IVIg. If you are a praying kind of person, please remember him in your prayers. Cobbie

Ibuprofen can be a big help. We use it as necessary. I feel for you so much. DS, 12 is 5'5" and 170 lbs, so I get that whole scared of their strength thing. Hope you get fast track approval. We are waiting for our IVIg approval from the insurance company and just trying to maintain our gains. Hope you have a good day.

Thank you both. Missionmom, what are you doing in your family to help with the immune issues? I am hoping that we do get approved for IVIg. We will talk to Dr. B tomorrow, so wish us luck. Can't wait to get lots of questions answered! Cobbie

My MIL started out very similar to your MIL. She kept telling me that back in the past when they used to go to Aunt Smith's everyone would drink from the same dipper at the well. I said how nice for them, but they also had a younger life expectancy! MIL is not very well educated or well read (not being a snob, but it makes a difference in this case). I keep explaining to her that we all use our own glass, spoon, etc. If we foget which one is ours, we get a new one. That's what dishwashers are for! She is starting to come around after this latest batch of testing, because I told her the reults in the most bare boned way that I could. Also, just explained that we would not be spending this kind of money if there wasn't something wrong. This is the same woman who told me I had son on too many medicines, especially antibiotics. I felt vindicated when I found out that son has no ability to fight off strep, so they really were necessary! Stick to your guns! Cobbie

Has anyone been diagnosed with CVID? (Common Variable Immune Disorder) After comparing DS's labs and chart with definition of CVID, it is almost a perfect fit. This would explain why he did so well with IVIg and so crappy without. We have been trying to kill a sinus infection since October with no success. Even with steroids, Augmentin, Clarithromycin, and Minocycline it has not gone away. For more information, go to the Jeffrey Modell foundation website. Very interesting. One page on a different site said that one in 50,000 develop the disorder. Is it really that low, or are most people just misdiagnosed??

Sign me up for running away! Some days I just want to run and hide, but that is not going to happen. I swear when this is over, and I know it will be, if there is any money left, the Cobbs are taking a vacation! Our whole family has earned it!

Has your child been tested for antibodies to strep? How about any blood work for Lyme and co-infections? Do this now before you do IVIg. I cannot recommend this strongly enough. If you wait and need to do these tests after IVIg, you are likely to get inaccurate results for up to six months because of the antibodies from the IVIg. We also liked (and still do) Dr. K and he prescribed the right treatment, but for the wrong reason. We did not get insurance preapproval and thus paid a lot of money out of pocket. Turns out, our son has no antibodies of his own to strep. Finding these things out now, could pave the way to get IVIg paid for in the future as an immune disorder. Mycoplasma requires more antibiotics than Augmentin, which is standard protocol for Dr. K after IVIg. Minocycline is the med of choice by most physicians for Mycoplasma. Honestly, we had a wonderful four week honeymoon after the first IVIg, but at six weeks we knew already that he would need more medical intervention. May peace be with you and I hope you have a wonderful experience. Cobbie

We had a similar day, today. DS started allergy shots (three), Yesterday. He seemed fine this morning, but pushed a kid before first hour and ended up in ISS. He was upset because another boy laughed at him, when really the boy was trying to be silly. He reacted to the laughing boy by pushing another kid. Thankfully not so hard that the kid was hurt. Can't wait to talk to Dr. B on Monday and review all of the testing and decide where to go from there.. Cobbie

DS, 12, has been on Clarithromycin, Augmentin XR 1000 mg and Minocycline while we wait for his blood work to come back. Time between first appt and follow up is six weeks, but only 30 days of meds prescribed. He took his last Clarithromycin six days ago. He is still tking the Augmentin XR because we had some left over from the doc we were seeing before. The symptom that has been with us all along, the nasal snuffle and blocked nose is still with us. After the steroid wore off, it came right back. From what I can gather from reading some of son's labs, he has absolutely no antibodies to strep. So would that mean that even with antibiotics, he is not mounting the proper response to strep in his nose. Son had a huge meltdown, tonight. Crying, screaming, throwing things, BAD. I gave him advil. He already takes magnesium and zinc. I feel so bad for him. Any advice?

Okay..... We received some more of DS, 12, lab work today in the mail. His streptozyme screen was positive and his streptozyme titer was 100, which is positive by Quest standards. His Igg for Mycoplasma Pneumonia was very high at greater than 5. Immunoglobulin G was below the range. Range is 893-1823. His number was 884. I think this means IVIg is in his future. Here's the part where I need help: %CD3 (mature T cells) 57 (Low) Absolute CD3+ Cells 3630 (High) Absolute CD8+ Cells 2526 (High) %CD 19 (B Cells) 37 (High) Absolute CD19+ Cells 2351 (High) What the heck do these numbers mean. I tried to look it up online, but my brain is too tired to make sense of it at the moment. I am pretty sure these will help support his getting IVIg, but not sure how. I can feel us getting to the end of the road. Slowly. Thanks for any help in advance. Cobbie