911RN

My children are reasonably healthy and our pediatric opthamologist dialtes their eyes yearly.

My son had specialized testing done by qualified Speech Pathologist. It is also done by qualified Audiologists. I highly recommend the book I stated as a great reference and guide in this diagnosis. You will "see" your child unfold within the pages of her descriptions if your child has this disorder. Then you will know to persue futher testing. You may have to call out patient therapy centers to see if they have pathologist qualified to do testing and have the equipment. The younger you treat the better to develop neuro pathways. We also used some of the HAT equipment when he was younger but no longer do so.

My son has Central Auditory Processing Disorder (CAPD or just APD) There is a great book called "When the Brain Can't Hear" by Teri James Bellis. Has nothing to do with hearing and everything to do with how brain processes information that is heard. We used a program developed by a LSU PhD audiologist and my son made great strides with his disorder. Causes great comprehension issues. You would need more formal testing to prove this disorder but once it is proven there is treatment available. Biofeedback is also helpful. PM me for more info.

My son had chronic sinus infections until he had allergy shots...after 5 years of shots...he hasn't had one since.

I am a big believer in allergy shots. It was a life changer for my DS17. Must be committed.Cannot do allergy shots half azzed. My son had to take them for nearly 5 years. He tested with moderate to severe reaction to nearly every environmental allergen tests except NO foods. He is good now and seldom has allergy sxs. Seldom sick. If your child still has adenoids- I would suggest that thse be looked at. My son had panoramic xray for teeth and it resulted as a "tumor" in posterior throat. I was freaked out until we went to ENT and was told the tumor was a gigantic pile of adenoidal tissue caused by his allergies!! His adenoids were growing upward towards/into sinus cavity causing blockage. His tonsils were fine- they left those but after getting adenoids out--he was much improved. The ENT had both hands open, held together, when he came out of the OR and said he had just taken out "2 handful piles" of tissue--most he had ever seen in a child. We had no clue until the panaoramic xray despite him being under regular care of peds and allergy specialist at the time.

My answer is more autoimmune in nature. If these kids have autoimmune repsonse that is constantly attacking brain (remember it is the antibodies causing the problem NOT the actual infection in PANDAS/PANS etc) then in the presense of infection/fever then the body is concentrating more on that issue. The immune system is busy working elsewhere rather than attacking itself. In other words, immune system is "distracted" and has something "to do" rather than just being overactive and concentrating on itself with an over abundance of antibodies in the basal ganglia. Right, wrong? I have no idea but that is my 10 cent version.

Can't walk or won't walk due to pain? There is a difference. Treatment of pain would be goal of treatment or stop whatever tx is causing pain. The inability to walk is a neurological emergency in a child that normally can. I.E falling due to weakness, foot drop, neuropathy etc vs. not supporting self and falling due to pain. Former would be emergency latter would be to treat cause/symptoms/condition. Glad he is walking again:)!!!!

My son had bird like tics one summer and it nearly drove me CRAAAZZZY!! It was this constant peeping and hooting like a bird and an owl in a patterned succession. I thought I was living in a bird santuary. He was totally unaware ot it. He was 8 or 9 at the time, I think. He is 14 now. Thankfully, it was not loud but it was constant! I ended up using an Inositol and Choline combo and it stopped within 2 weeks after many weeks of activity. The brand I used was Source Naturals with 400 mg Inositol and 400 mg Choline. I think I gave him 1 in am and 1 in pm. I only kept him on it about a month and then stopped medication when tics went away. I read somewhere that I have never been able to find source again that Inositol should be given with choline for absorption, improved effect so that's why I chose this brand. Choline is one of the good nutrients in eggs. Anyway, Inositol can go up to super high dosages without ill effects so dose could be easily doubled if noting good effects. I would increase over time. I never needed to go that high because bird noise tics went away. Many use Inositol alone for OCD symptoms alone sans SSRI's and there is a lot of solid research on it. I used it for tics which can be related to an OCD mindset. My son is more OCD now but manageable. He is still a bit ticcish but they don't bother him. Not severe.I don't know if this is helpful for Tourette's or not cause my son has never been diagnosed with that. That's the only suggestion I have...more of a natural product supplement than prescription. Low side effect risk. Read up on it and see what you think. If it works---great. If not, have nothing to lose.

Any child that can normally walk that suddenly cannot walk substitutes a neurologial emergency in my book-- lymes or not. I would take him to ER if my child could not walk. I would not wait a week to see a MD??!! He and you both have right to be scared. I would be scared also.

I would go to another lab and not worry about it. If you get same repsonse then I would be concerned.

Momslove, I am in a similar positon...glad you asked the questions. I would like to trial over Christmas break. Our Neuro has suggested Marinol for several years to help with tics. He has said he has seen it be has a life changing drug for some of his patients. I have been reluctant due to side effect of increasing appetitie. My son is husky, poor diet, all carbs, high fat. Not obese but could "get there" easily if anything stimulated his appetite which I am relauctant to do with Marinol. His OCD prevents me from making much headway to introduce a cleaner diet. At 14, it is difficult to force a child to eat what he won't even try or put in his mouth. Or, spits out as soon as he tries with coaxing and encouragement. Just not a battle I am willing to have daily. Like trying to teach a pig to sing. However, I do worry about the long term ramifications of his diet on his health and body. Needless to say, how his diet must contribute to his tics!! He is basically healthy. Seldom sick. Which, suprises me considering his diet. It is absolutley horrible what he eats, in my opinion. And, to make matters worse the rest of the family eats very well and healthy by most anyone's standards. I cook from scratch and he eats a processed, junk existance. Separate, different food from the rest of the family on many occassions. I do provide him with a few different multivitamin supplements as I know his diet is inadequate for correct vitmains, minerals etc. We all know, diet is far superior to get necessary nutrients than a pill but that's the hand I have been dealt. He actually ate everything up until about age 6 then has slowly over years has gotten down in his diet to 10-12 things he eats regularly. Very little of it it is healthy by my standard with no veggies or fruits. I am imterested in the paste I have seen in past CBD posts. I think he would tolerate this better hidden in food. Have read from others it is not as messy as oil and delivery just seems easier. How is this dispensed for dosage?? I have seen posted as the size of rice pellet for administration etc. Which company sells the paste of do all of them? My son is about 165 lbs. As with momslove I am very interested in replies! Thanks, in advance! 911RN

This case sounds very complicated. I would hesitate to offer any opinion, however, I had a co worker that just went through something similar last winter with her husband. He had paralysis after a viral illness. He had Transverse Mylitis. This can happen to adults and children. Causes paralysis, demylination, inflammation of spinal cord and all the things you have been mentioning. Here is link: http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

My son has LKS and this syndrome is only noticeable on an asleep EEG--nocturnal seizures that occur during sleep. If you are fearful re: MRI, at this point, and don't want to put her out then why don't you request a 24 hour asleep and awake EEG first? If nothing shows then you can proceed to MRI. The sedation that they use for these procedures is very safe and very short acting...while, I understand your nervousness at her age...she will likely do very well. The Pedi neuros always want to confirm normal brain pathology via MRI before proceeding to next step but there is certainly nothing invasive about 24 hour EEG. I can't imagine one not agreeing to this prior to the MRI. As an aside, turning blue and pale in the absence of seeing any "real" seizure activity can be a sign of cardiac issues, as well. I would not go down the narrow road of just Neuro for answers. Following true seizures (tonic, clonic--grand mal)...there is a post ictal phase where the sufferer is very tired, fatigued and may be confused. You cannot keep them awke even if you try...they just wnat to sleep. This is not usually the case if source is cardiac. You may want to see Pedi Cardiologist, as well?? Blue spells concern me more for cardiac than neuro in origin.

Azithromycin is usual drug of choice for Atypical pneumonias (Mycoplasma is considered an atypical) or Doxycycline. My son failed on Azithromycin and had to take a Cephalosporin (Omnicef) to get well when he had Mycoplasma in summer of 2013. Took Z pack and remained sick with fever- no better. He is Penicillin allergic.

Nancy, So happy for you and your son. My son (despite his special needs status) is always well liked, praised and appreciated by his teachers. Due to his own social issues- he does not have any peer friend group but does well with adults and teachers whom seem to enjoy his quirky, dry sense of humor and mannerisms. He does not have behavioral issues which tends to be common for many special needs kids. Thus, he is a breath of fresh air for them. Truly special needs for accomofations to best suit his learning needs/style. It is always a thrill when teachers send me emails (unsolicited) about how much they enjoy him and that he puts a smile on their faces daily. Brag away, you and he deserve it!! Has been a long road for you and him! You'll find something else besides PANS to fill your days once he is in college:) Congrats!

If anxiety and OCD are the things keeping him from school...have you tried SSRI's? Yes, all the antibiotics and herbals are great but don't seem to be giving him enough. SSRI's are indicated by most for OCD and anxiety. They are helpful and may help him to be more functional if he truly wants to go to school. Low dose Lamictal has also been helpful for many of the children on this board. Many avoid these medications but many of us have found them to be helpful for our children.

I don't know exactly how it works-- the impulses increase blood flow to the area, healing occurs.Inflammation decreases and the pain goes away. I have had intermittent issues with my neck over the last 6 years. Have had to go to Chiro 3 times in that time period for anywhere from 6-12 treatments depending on the episode. The first time he did not offer cold laser and it took the longest to improve. The next 2 times he used cold laser starting with about the 3rd chiro treatment. I get expotentially better after he starts using the cold laser. I'm convinced he doesn't start it sooner as it would mean less visits...wink, wink. Actually, he is very reputable and trustworthy. I love my Chiro. I'm just not certain why he doesn't use it from the get go. Always seems to wait until the 3rd visit. Not sure how it works...just know that it does!! There is nothing worse than radicular pain from neck that gets into my deltoid all the way to fingers. Feels like someone is driving a hot poker into my deltoid and twisting it. Not much relief from Motrin when this happens and I am not much on pain medications with having to work etc. I'm from the Church of What Works At this point, I dont have to understand it as long as it is not invasive, harmful and it works!

Agree with others re: plantar fascitis and/or heel spurs which are also very painful. Plantar fascitis usually hurts more the first few steps you take after sitting then improves somewhat. Over the counter shoe inserts can work great for this. Heels spurs hurt all the time when walking. An xray should tell you the answer on this.

I have had cold laser done several times by my Chiropractor when I have problems with my neck from Radiculopathy pain from bad discs in my neck. It works great for that...yes, the premise of the effects is that it increases blood flow to an area to create healing. I do not believe it can "kill" bacteria but by increasing blood flow it could create conditions that would allow body to eradiacate or fight bacteria(?). I am a firm believer in cold laser for my neck when I have issues. Decreases raducular pain in a snap. Love it for that.

Fruity or fermented type breath can mean high blood sugar or Diabetes? Just be sue you are not dealing with that.

No, I have had a droopy eye lid my entire life (worse when I am tired). I have never suffered from tics. My mother has the same and she has never had tics. I don't think the two are related.

At the very least, her doctor should have put her on 21 days of Doxy if Lyme suspected. Not 10 days. That is minimal protocol. Was a lyme titer done?

My DS14 has a nail picking tic...he has literally torn off most of his toenails. They are so short and down to the cuticle. BUT, not his fingernails. Those get so long we have to cut them. Doesn't make sense!!?? I have tried NAC on him in the past and if I recall it made him very angry and aggressive. He will go in and out of this compulsive behavior. Like a switch. He will stop and they will all grow out then on a dime he will start again. I wish I knew what his trigger was so I could stop it. Anything else out there work? I'm going to try him on the help oil this summer.

Has she had strep titers that were normal also?

You would have to be more specific on which medication?