mdmom

Just got the EOB from insurance for my DS15's first IVIG. It was administered at home over 2 days with a nurse here for 6 hours each day. Total cost was $8916.00 for 100g total of Gammaked.

750 mg of GABA before bedtime works wonders for me. I also dose B-12 injections 3x/week. I have been in bad places with anxiety when my son was at his worst 6 years ago and I had to take an SSRI for 2 years. Be good to yourself. Get out and do something for yourself everyday - even if it means getting a cup of tea or coffee at the drive-thru and sitting in your car with music or something to read. Hang in there.

The following is a link to a comparison chart of Ig products: http://www.bdipharma.com/Comparison%20Chart%202012/IVIG.pdf Octagam is stabilized with sugar (maltose), so it is harder on the kidneys. It also has a higher concentration of IgA, so if your child has low IgA or worse, makes antibodies to IgA, this is not an ideal product. Octagam is less expensive, which is why some docs switch to it. Others may chime in here on this topic, but I believe Gamunex-C (and Gammaked b/c it is identical) is the choice Ig product for neurological autoimmune disorders. Not sure why this is, but I remember being told this or reading it somewhere. From my research (I've done a lot), it is not wise to switch to a different Ig brand if you have been tolerating the same one for awhile. Donor pools are completely different for each Ig manufacturer, so I suppose this could play a role in the differences between products too.

Dr. T is great. Many on this forum including myself have him as a part of their child's treatment team. However, I stand firm on this: You need to find a doctor, preferably an LLMD, that will look more closely at underlying infections and develop an aggressive, yet methodical approach to treatment. You have been treating since November with a lot of different things; however, dealing with some of the infections your son has takes time and patience. Mycoplasma is particularly hard to treat. Also, have you considered yeast, detox, methylation issues. IVIG could help over time, but underlying infections MUST be dealt with before you will see sustained healing.

Both of my children have central IV lines (one has a PORT and one has a Hickman). Both have been on IV therapy for one year now. Feel free to PM me if you would like more information.

Thank you for posting this news about your son. I've been toying with the idea of asking for an MRI for my son who went undiagnosed and thus untreated for a very long time. What are the implications of a lesion on the basal ganglia?

My DH and myself under the guidance of our LLMD were treated for Lyme, Bartonella and Babesia since June 2011. We chose to treat even though we were not extremely symptomatic based on positive Lyme results (on alternative testing), the fact that our daughter has definitive diagnoses of Bartonella and WA-1 Babesia, and the fact that our son has PANS and Common Variable Immune Deficiency. LLMD said that particularly with Babesia, Lyme docs are finding that no one in the house gets well unless everyone is treated (we even had the pets treated). Babesia treatment was the longest (9 months for DH and me) and we stopped taking antibiotics and antiparasitics 6 weeks ago. We continue to take Valtrex, Diflucan, Nystatin, LDN, probiotics and some supplements for detox. We won't go back to the LLMD for ourselves until April. I have been experiencing subtle symptoms in the last 3 weeks - foot cramps, backaches (more than usual, teeth sensitive to hot and cold, and yesterday a stiff neck (with little range of motion) out of the blue that took me to the chiropractor this morning. My husband told me just the other day that he is getting foot cramps and backaches more often. Do you think we have not cleared one the infections floating around my house? Again, the symptoms are subtle but when we were treating for Babesia, we felt the best we had in years. Too bad you can't stay on Mepron forever. Thoughts?

astridrobi - First of all let me say that you are on the right path just by being a member of this forum. My advice: Read, read, read. I have learned so much from the other members here. When someone shares a therapy or med or doctor that might be useful, I try to gather all the info I can about suggested things from the internet. Some other suggestions: 1)Keep a log of symptoms, interventions, etc. 2)Reassure your daughter that there are other children/teens out there struggling like her - if you think it would help, have her read some of the posts on this forum 3)Ditch your pediatrician. This is not the time to be convincing a doctor just to have a conversation about PANS/PANDAS. You need a doc that is already well-educated and can properly diagnose and treat. Consider building a team of docs like others have suggested. We get mostly what we need from our Lyme doc, who is an integrative doc. 4)Accept the fact that to access good help from a PANDAS/PANS specialist you will have to pay upfront (and hopefully get partially reimbursed from insurance). We have borrowed from our 401K in the past and this year we are taking a medical hardship withdrawal to pay medical bills. Our 15 year old (PANS/Lyme) son has no chance at a future if we don't treat aggressively now. 5) Take a deep breath and know that you are your daughter's best advocate and you will be driving her care as you seek help. My son was diagnosed at age 13, a little later in the game than some children. But after 2+ years of treatment for multiple infections and now monthly IVIG, he is improving slowly. He was a big ball of aggression, anxiety, depression and had a diagnosis of high-functioning autism with no hope for a bright future before we started treatment. Now he smiles more, is more present in our family life his future looks much brighter thanks to the smart doc that we found. Hang in there.

My DS15 has been homebound since April 2011. Our school system provides him with a teacher through what our state calls "Home & Hospital Instruction." Teacher comes to the home 10 hours per week. He misses seeing friends throughout the week, but it has been a good decision to keep him home while he heals from multiple infections and we get his immune system stabilized. Reducing his exposure to new infections has been key for him. Teacher and friends know not to come to our house if they are sick.

It’s been a beautiful, soft, snowy day here in Maine, and my house is resting in the middle of a winter wonderland. But it is with a heavy heart that I tell you Boston Children's Hospital has snatched two more children from their medically attentive and appropriate parents. The hospital had them taken into the state's "emergency" custody because it does not agree with the children's diagnoses made by physicians at Tufts. This time it is Mitochondrial Disease. Both children - one five years old and the other fourteen - were under the care of a team at Tuft's Floating Hospital. The children are not related, but they share the same diagnosis and the same doctors. Both children were having GI issues. Both children went to BCH upon advice of their Tuft's physician who wanted the children seen by a GI doctor there. The children’s GI doctor had left Tufts for BCH with promises of a research team and money. Tuft's new GI team is not arriving until June 1st, and the children needed immediate help. The parents followed the advice of their Tufts physician and brought their children to the BCH emergency room. The GI doctor was not permitted to see either child. The families were told he was being kept at arm's length because others within Children's do not agree with the diagnosis. The five years old's mother was essentially accused of Munchausen's by Proxy. The fourteen year old's family was told it's all psychological, that the girl has anorexia, and that she belongs in the locked psych unit. All of the fourteen year old's medication was stopped. The parents are permitted to visit their child for one hour, once a week, supervised by BCH staff. Guards were called to surround the family and friends and remove them from the hospital. Non-family members witnessed the fourteen year old's abduction...the parents were not even permitted to say goodbye. Meetings were held this past week with U.S. Congressman Stephen Lynch's office regarding the situation at BCH. His office has taken an interest in the fact that a hospital in his district is causing the parents of very sick children, who seek help in good faith, to lose custody of their children. Attached is a list of the towns in Congressman Lynch's district. If you live within one of these towns, will you please contact his office to share your own BCH horror story. The number is 617-428-2000. I know many of you are terrified to speak up because of the threat of BCH/DCF, but unless you begin to speak out publicly this travesty will not stop. When powerful institutions secretly collaborate and then act without public accountability the result is always abuse. Do NOT go to Boston Children's. You have no civil rights once you do. You are not entitled to a second opinion. If you challenge their opinion or seek to take your child to a different hospital, you risk that Children's will have your child taken by DCF. I cannot overemphasize the seriousness of the situation at BCH. No child, ever, should be taken there for ANY reason. If you have managed to escape from BCH with your child, I recommend that you immediately notify the hospital in writing that you withdraw any consents you signed when your child was admitted. This is not legal advice. I am simply telling you what I, as a parent, would do for my own child - knowing what I know now. Generally, those medical consents remain outstanding for at least six months, often longer, and enable BCH to continue to probe all of your child's providers, teachers, and so forth for months. Believe me: they do it long after you've left the hospital. Do you want BCH in your life after you leave? If not, send your letter to Stuart Novick, the hospital's general counsel informing him in writing that any and all consents you signed are hereby immediately revoked and void. Make sure the letter states your child's name and date of birth and that you are the child's parent or legal guardian. Keep a copy. Give one to your child's providers. If BCH then continues to try to get information, it will be a HIPAA violation. For those of you who have already lost custody, I would immediately notify the child's DCF social worker in writing, with a copy to the hospital's general counsel, that your child is not to be a participant in any medical or psychological research. You do have that right even when the state has custody. Write that your notice is being delivered pursuant to 110: CMR Department of Children and Families § 11:23. Make certain you keep a copy. I thank God every day that we never made it to that place when Sammy was desperately ill. I believe in my heart they would have taken him from me. I am asking the thousands of people on this email blast list to please tell everyone you know to stay away from BCH unless they are willing to risk losing their child. We have succeeded in stopping PANDAS parents from going there. We need to cast a wider net. I can only imagine how extensive this problem is because - obviously - not every child's parent who is in this situation manages to reach me.

This is exactly the reason we currently "deworming" our 15 year old son and have dewormed his sister in the past. My DH and myself need to do this soon as well. Our LLMD follows Klinghardt's protocol.

Under the video screen you will see links to Part 2 and Part 3. Tomatoes and potatoes are considered "nightshade" vegetables that apparently can cause symptoms. We don't avoid these, but it was suggested that my daughter and I avoid them because we both have hypothyroidism (a naturopath recommended this). We rely on potatoes for some normalcy in our diet because we eat GF/CF. Here's an explanation on nightshades: http://www.naturalnews.com/027978_nightshade_vegetables.html Not sure about the cherry juice.

The family featured in the video was also in a recently posted article in the NY Times. Leaky gut is nothing new to most of us, but it's sure nice to see it making into mainstream media http://www.doctoroz.com/videos/medical-mystery-solved-pt-1

I've read some recent posts of people calling their insurance companies about IVIG for PANDAS. Please, learn from my mistake: DO NOT CALL YOUR INSURANCE COMPANY AND MENTION PANDAS - IT WILL REMAIN ON FILE THAT YOU CALLED IN It is also worth noting that there is no diagnosis code for PANDAS. Most insurance companies are not covering IVIG for PANDAS. Some doctors are successful at getting coverage for some patients using alternate diagnosis codes(e.g. post-infectious enchephalitis). Others are getting IVIG covered because of a Primary Immune Deficiency diagnosis. Mentioning PANDAS to your carrier is going to raise red flags.

I know our LLMD suspects heavy metals with our son, but she has told me repeatedly that he is too fragile for chelation, as it can be a shock to the system. It's so hard knowing when to address each thing. We just started monthly IVIG and he's responding well - I believe it's because we've worked so diligently at knocking down his infection load. Daughter is a whole other issue, but clearly has more going on than infections. Thanks for giving more ideas to pursue. Sometimes you just hit a plateau and it's good to have a new plan.

SF Mom- Thank you for the advice. I really feel like my children's progress has been slow and I think you are correct in suggesting that I pursue additional things like mold and heavy metals. DS has been on daily IV treatments since Jan 2012 and DD has been doing the same IV treatments since March 2012. It seems like we are going nowhere. We will see the LLMD next week and she may know this, but can you tell me what tests to order to check for heavy metals? Also, when you refer to testing for mold sensitivity and inflammation, are you referring to the tests that Shoemaker outlines on his Surviving Mold website? Thanks again.

I am really stumped by the diagnosis myself, as this is what we have treated with since May 2011: DD 13 and DS15: daily Flucanozole (oral), 4 tabs Nystatin daily; then we switched to IV Fluconazole 3x week and oral on alternating days; for the last 8 months they have been on Voriconazole (VFend) IV and oral on alternating days + Nystatin DH and myself: daily Fluconazole, Nystatin then switched to Nizarol for a short time, then back to Fluconazole with Nystatin. We also used Mycelex lozenges occasionally. So I am left with wondering if we have a mold problem. Yes, it's likely as I mold grows quickly in the toilets between cleanings and I find it in the shower often. But we are financially in a hole after treating for so long that I am unable to pay for remediation and we cannot afford to move.

The IVIG dose that addresses autoimmune issues is very high. Usually the dose is 2g of IG per 1 kg of body weight. The reason for the high dose is that it somehow regulates the immune system by flushing out the bad (or "auto" or "self") antibodies that are attacking the brain - the is the theory, at least. Subcutaneous IG is administered by inserting needles under the skin and the medicine is slowly infused under the skin and eventually absorbed by the body. High doses cannot be administered this way. I am unaware of injectable IG.

Good luck at Rothman. We were there in Dec for 3 weeks. Best thing by far that we've done for our son. Dr. R is the best. He's so good that we have decided not to find a local therapist and instead go back to Dr. R for OCD "tune-ups" when needed. It's worth the travel expense. Keep us posted!

WBC count is just slightly low. Abx can suppress production of WBC. But I am wondering if the LLMD is considering Babesia? Babesia notoriously lowers WBC counts. Two clinical signs of Babesia on bloodwork are low WBC and elevated liver enzymes.

Also posted on PANDAS board... DD13 (non-PANDAS kid) has had a headache for 37 consecutive days. CT scan showed cloudy sphenoid sinus, which is the one located in the center of the head. ENT visit today was enlightening. Instead of assuming the sinusitis is caused by bacteria as most docs do, the doc quickly diagnosed my daughter with a fungal ball (a.k.a. mycetoma) that will have to be removed surgically. Considering all the talk of sinuses lately on this board, I thought this might be of interest to others out there dealing with chronic sinus issues. I'm thinking it is a huge piece of the puzzle, as her recovery from co-infections has been very slow despite aggressive treatment. Doc is also going to culture sinuses for Staph, MRSA, etc.

Will post on Lyme board too... DD13 (non-PANDAS kid) has had a headache for 37 consecutive days. CT scan showed cloudy sphenoid sinus, which is the one located in the center of the head. ENT visit today was enlightening. Instead of assuming the sinusitis is caused by bacteria as most docs do, the doc quickly diagnosed my daughter with a fungal ball (a.k.a. mycetoma) that will have to be removed surgically. Considering all the talk of sinuses lately on this board, I thought this might be of interest to others out there dealing with chronic sinus issues.

I (mom) have Hashimoto's and my son has PANDAS. My friend's son has PANDAS as well and she had Graves disease that was treated during her pregnancy with him. So yes, the maternal autoimmune theory applies to both of these PANDAS cases.

Dr. T told us to stay away from Strep Therm. too. My DS15 is dairy-free, so he would not get this through food anyway. However, it is a strain in his probiotics, VSL#3. He does not seem bothered by it in the probiotics and he is the type of PANS/PANDAS kid that reacts to the littlest things (like being in the presence of someone who is ill even though he does not get the illness himself).

I would recommend talking to your doctor about knocking out the infection(s) before you jump into a costly procedure like plasmapheresis. It's imperative to lighten the load on the immune system if you are going to try to regulate it with something like IVIG. And plasmapheresis may provide temporary relief from symptoms, but it will not address infections permanently.