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Migraines..Headaches..everyday..what is going on!?!?!?


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:( Hello everyone, Please..I'm hoping someone can shed some light as to why my son is having bad headaches everyday. This has been going on and off since the PANDAS diagnosis but has really been getting worse for the past 3 weeks. I know I mentioned this before but for those that don't know, my son also has autism which is also an autoimmune disorder. Let me start by catching everyone up on what's been going on with my son. I finally went to see a D.A.N doctor and he is very compassionate and also very experienced with PANDAS and autism. He treats both..children with PANDAS and children with autism. He is God sent..an angel.

 

I also want to mention that I got my son's labs from Dr. T...another God sent angel... where it's showing very low IGG subclass 4 (5.7), ASO was high, lyme 39KD (IGG) BAND is reactive, Ebstein-Barr VCA AB IGG is high and Streptozyme titer was high. Clearly he's showing immune deficiencies. For the past 4 weeks his OCD symptoms ( phrases he constantly repeats for a certain amount of times and wants me and only me to say "Okay" to, and if I don't, he will fall apart) has gotten worse and when I say worse I mean he can do this for the whole entire day which causes him severe anxiety and frustration. He has also developed extreme anxiety when he is taken outside (this is also due to his extreme sensory sensitivities), so I have to turn right back home regardless of how far we've driven. I can't go anywhere with him and I can't go anywhere without him due to his severe seperation anxiety. I can't leave his side and if I do he becomes really anxious and comes looking for me. The OCD symptoms are the most debilitating of them all. His vocal and motor tics sometimes creep in but he can go days without them.

 

Getting back to the DAN doctor, my next appt is next week. DAN doctor sent us to get some blood labs done and urine, blood labs were 20 tubes, I almost fainted just watching 20 tubes of blood being drawn from my dear son, but he is a warrior and did well. Presently my son is on abx and I give him Ibuprofen 400mg when I see irritability setting in as I have seen that Ibuprofen calms him and takes the edge off. I also give it to him to prevent the headaches he's been having lately. Now as far as these headaches, they come on all of a sudden. He starts holding his head and says "Oh my aching head" and then goes on to say "Sad...crying". At this point I will give him Ibuprofen and sometimes he's taken the Ibuprofen already but it hasn't kicked in yet. While this is happening the OCD (repetitive phrases that he wants me to say "Okay" to) increase and cause him great distress. At this point...this is what makes me freak out and very nervous the most..he starts punching the top of his head and crying unconsolably, the pain becomes unbearable for him. My heart of course breaks into bloody pieces just seeing him go through this. If I try to stop him from hitting his head, he gets more frustrated and can become aggressive with me, which then he apologizes for afterwards. I do manage to put a cold rag on top of his head and he allows this as I see it brings comfort. I also immediately have to drop lots of pillows on the floor for safety because he falls to the floor and tries to bang his head on the floor. Prior to PANDAS, my son never had bad headaches such as these or hit his head or was aggressive, now this has been going on for the past 3 weeks. I spoke to another mom with a PANDAS autistic child and she said the headaches were a symptom of brain inflammation. I believe this to be true. What can someone tell me about these headaches..Are headaches PANDAS symptoms?...Are there other parents out there that are experiencing this with their child?...Are the headaches a symptom of brain inflammation? and if so does that mean the BBB is open? What are you giving as a medication to relieve these headaches?

 

Dr T and DAN doctor mentioned IVIG for my son, and that is will be considered. I also want to mention that my son suffers from nasal allergies which have gotten worse and every morning he wakes up with a congested nose and sneezing which I know also contributes to the headaches and PANDAS symptoms. He was on flonase for nasal allergies but made things worse and not better. Can strep live in your nasal passages? I've heard this before and I wonder if this is why my son seems to be getting worse at times.

Please..if I can get my questions answered and some advice, my heart appreciates it. You all have helped me help my son tremendously as I try to read as much as I can. I apologize if I don't get to post often..it's been really rough and heartbreaking lately.Sometimes I just drop to my knees and cry..wondering if I can make it through another day. It breaks me up to see my son go through so much and feel there is nothing I can do to bring him comfort. There is not a day that goes by that I don't shed tears for him and all the children battling this crippling disorder. I thank God for you all and may we continue to advocate for our children and do everything we can to help them get better. God bless you all....Thank you

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I want to second the suggestion to call Dr. Bouboulis in Ct. He will get to the bottom of this. It truly sounds like your son needs IVIG and Dr. B is now experienced with giving IVIG to kids with PANDAS. He knows all the safe guards and the nurse that does the proceedure is wonderful.

 

I also want to relay our experience. Dd had allergies that I didn't know about. For her, the only symptoms she had were headaches that she complained about but that were not really excruciating. And in hind site she also had post nasal drip, which gave her stomach aches as well from the phlegm in her stomach. There was inflammation in her sinuses from the allergies that made it a nice place for strep to live in her sinuses. Dr. B thinks its very likely that the strep that caused PANDAS was from her sinuses.

 

He put her on Singulair which has helped with the allergies (no more headaches) and he also had me give her Musinex to help dry up her sinuses and also he had her do a nasal rinse twice per day. It's like a Neti pot but she uses a squirt bottle. They are at the drug store. It has a saline solution in it and it rinses allergens out of the sinus cavity. The sinus rinse and singulair have kept her allergies at bay enough that she did not have an phlegm problems until recently when we started doing the rinse only every other day. (had gone to once per day and that was fine, but not every other day) So, I gave her Musinex and it helped again and her sinuses are clean. Dr. B checked the other day.

 

She has had one ivig with Dr. B which helped her tremendously. I'm beginning to think she's starting to backslide a little and I'm thankful that we have another IVIG lined up in 2.5 weeks. I think she needs it. She has had this disorder for almost 4 years. We've known it was PANDAS since November and she'd done several antibiotics, steroids, and Advil for months before she finally had the first IVIG 5.5 weeks ago.

 

 

Angela

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Have you tried prednesone? I think if it is brain inflamation if might help.Could also be some thing else going on. I don't think headaches is a typical pandas symptom, maybe you should try to get an MRI done to rule out some of the other stuff.

My ds12 has had constant headaches with PANDAS and none of his tests have shown anything other than PANDAS. Another thread recently stated that herxing causes headaches, stomaches, muscle aches, fatigue as well. SF Mom posted this recently:

 

The Herxheimer Reaction is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms.

 

This is a normal — and even healthy — reaction that indicates that parasites, fungus, viruses, bacteria or other pathogens are being effectively killed off. The biggest problem with the Herxheimer reaction is that people stop taking the supplement or medication that is causing the reaction, and thus discontinue the very treatment that is helping to make them better. Although the experience may not make you feel particularly good, the Herxheimer Reaction is actually a sign that healing is taking place.

 

Not sure if this is the cause but it is something to think about anyway.

Edited by JuliaFaith
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My 11 year old dd started when she was 9 with daily chronic migraine headaches. I know this was the start because she had a severe upper respiratory infection (prob strep) then these severe headaches started. She basically had a severe headache for a year and a month when they stopped abruptly and one month after that this bizarre sneeze started that eventually turned into a sneeze tic that did not stop for 13 weeks. She still has severe headaches usually leading up to an exacerbation. Sometimes she just sits and holds her head crying and they go on for days but migraine meds only help temporarily. The headache is almost always in the exact same location in the right temporal lobe. None of the many doctors she has been to can explain or help these headaches--Sorry for that news but I believe the headaches are directly related to PANDAS.

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My 11 year old dd started when she was 9 with daily chronic migraine headaches. I know this was the start because she had a severe upper respiratory infection (prob strep) then these severe headaches started. She basically had a severe headache for a year and a month when they stopped abruptly and one month after that this bizarre sneeze started that eventually turned into a sneeze tic that did not stop for 13 weeks. She still has severe headaches usually leading up to an exacerbation. Sometimes she just sits and holds her head crying and they go on for days but migraine meds only help temporarily. The headache is almost always in the exact same location in the right temporal lobe. None of the many doctors she has been to can explain or help these headaches--Sorry for that news but I believe the headaches are directly related to PANDAS.

 

Really bad headaches are also a sign of Bartonella which can mimic PANDAS symptoms like ocd/tics etc. Testing is not reliable for bartonella so an evaluation by a llmd is a good idea. Bartonella is treated with rifampin.

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My brother had a wheat allergy and he would get migraines after eating wheat. He had asthma and ended up in the hospital a couple of times because of wheat. My father did an eliminated diet and figured it out. They removed wheat from his diet for 10 years and now he has outgrown it. It was hard back then especially at birthday parties.

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I want to echo the ideas to contact Dr. B and also to check more closely into the lyme issue. Dr. B can help you with both, though he is not a lyme specialist.

 

My son has chronic sinusitis and his headaches turned out to be a large infected cyst in his sinuses called a mucocele, which had been growing for a very long time and had damaged his sinus bones by the time we saw Dr. B and he found it.

 

What is neat about Dr. B is that his approach is really to find the source of the problem, and he realizes that the source and the solution is different for each child. My son has problem's that are similar to Momaine's child, but Dr. B has us on very different treatments (we do zyrtec, zithromax, and diflucan - no nasal rinse right now).

 

So.. I would schedule a consult with him if at all possible.

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