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Warrior Mom

Is your son like mine?

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I'm new to this online community. I'm in search of another warrior mom/dad who is trying to recover their child from regressive autism. I need to connect with a community that can offer advice for any of our son's challenges.

 

We lost our son gradually over a year's time. He had convulsions within 10 minutes of his 4 mo. and 12 mo. immunizations. The day after his 6 mo. immunizations he ended up in the hospital with breathing difficulties and ended up there for a week with pnuemonia. He cried hours on end after his 15 mo. shots and that was the final straw. He was lost after those episodes and we continued to lose him after that point. He lost his language, his cuddleness, his smile, and the sparkle in his eye.

 

Our son is on the SCD, low-oxalate diet as of present and has been for the past 6 months. He also takes 1 pill of Tenex in the am and then another one in the pm(this has been a the most help for him and us.). He also gets Zyrtec every night.

 

 

Chief Challenges for our 11yo son:

1) CONSTIPATION...BUT NOT YOUR NORMAL CONSTIPATION! He has soft bms but has trouble releasing them. He can go for a week and get a bloated tummy, cry of the pain, but can't seem to get them out. It's not for lack of trying, we think. He gets a dose of Natural Calm just about every day and he won't go until we have to try to give him a much needed but undesired suppository. He sometimes needs to be in the shower for 30 minutes to help get things going. When he does finally go, it is a L-O-N-G log that will coil in the toilet. I know this has to effect his behaviors!

 

2) Hyperactivity/Short attention span - he cannot sit still and has less than a few seconds of attention. He can't just sit and watch TV, he is constantly in motion, jumping around, etc.

 

3) Deep voice for such a young child

 

4) Urinates on average twice each hour throughout the day!!!

 

5) Slaps his chest (not his tummy) or other hard surfaces with his hands

 

6) Has difficulty falling asleep and can't sleep alone. He needs to touch a part of my body all night long

 

7) He had a long rash of strep infections before we finally convinced our ENT to take out his tonsils/adnoids.

 

8) He has had febrile seizures but hasn't had one in a long time. We tend to treat illness with Motrin prophylactically. He has also had other unexplained seizures...very few...usually when he was in a highly perferred, outdoor activity (pool, beach, etc.), and we couldn't get him to eat/drink very much. These we believe were related to drops in sugar levels and now our son eats small meals throughout the day.

 

Stool labs showed no yeast isolated or dysbiotic flora;

Urine labs showed high (out of range)DHPPA in Malabsorption Markers and Bacterial Dysbiosis Markers; slightly high Arabinose under the Yeast/Fungal Dysbiosis Markers; very high AKG a-Ketoglutaric Acid under Citric Acid Cycle Metabolites

Blood Tests for IGg showed on a scale of 0-3, 0 being OK and 3 being allergic: 1 for green beans, crab, garlic, gluten, brewer's yeast, wheat, soybean, sole, salmon; 2 for mustard and baker's yeast.

 

Other blood work revealed:

glucose slightly high: 110; Neutrophils 66 (high) and Lyphocytes 21 (low)

 

Anyone willing to offer suggestions...PLEASE DO! I want my boy back!

 

Thanks! WARRIOR MOM

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Hi Warrior Mom,

 

My children do not have autism, but all four of them have PANDAS. All four of my children have experienced all of the same symptoms as your son, minus seizures. The difficulty falling alseep and sleeping alone, frequent urination, multiple strep infections, ADHD behaviors,deep voice, and constiption have occured in all of my children. Have you ever posted on the PANDAS forum. There are a few children that have autism and PANDAS.

 

The really bad reactions to the vaccines is also common in children with PANDAS. Has your child ever been on antibiotics for an extended time and you have seen any improvements in his behavior? I am just trying to help and I don't have all the answers, but it sounds extremely supicious to me that there could be some infectious process going on that could be playing anywhere from a small part in his autism to a huge part in it. When was the laasrt time of a known strep infection in him? And the tricky part with knowing when they have strep infections is that so many times the child has strep, but does not have "typical" strep symptoms so they don't get tested.

Colleen

 

Colleen

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Colleen,

I am so grateful to your reply. YES...I strongly believe my son has PANDAS but when tested his strep titers he was OK. I am baffled by this. My son did not present with the typical strep signs and because of his communication issues he wasn't able to tell us what was going on. I know that he had strep for a long time when we finally figured it out. There has been strep at his school and even one of the aides ended up with scarlet fever. When we get the swab test it comes back negative. It is extremely hard to swab my son so I think we even missed it a few times, if that is possible. AND...YES...my son does seem better when he is on the antibiotic but we've just attributed that to him feeling better. So, my question is...Is it possible to have PANDAS with a negative strep test?

I will check out the PANDAS forum.

THANKS!

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Yes. you absolutely can have strep with a negative throat culture, for a variety of reasons. I will list all of the reasons I can think of and if I miss any, someone else will most likely chime in. Never rely on a negative rapid throat culture. Many times the rapid test comes back negative, but the cultures returns positive.

 

1. The person doing the swab does not swab both tonsils. In up to 20% of the time one tonsil will test negative while the other tests positive (studies have shown this). If the nurse/dr only swabs one tonsil, yo can get a false negative. Both tonsils and the sides of the throat should be vigorously swabbed. This can be hard to do in some children.

 

2. The culture is not allowed to grow out for a full 72 hours. Growing it out for only 24-36 or even 48 hours is not long enough.

 

3. When the swab arrrives at the lab they are supposed to pierce the agar with it. If this is not done you could get a false negative. Alllabs should be doing this, but it is something worth verifying.

 

4. Strep is elsewhere in the body. It can be in the nose, sinuses, ears, gut, perianal area, skin. A thoat culture would not detect this. A stool test cn be done to check for strep in the gut. Ct scans or xrays are sometimes done to look for strep in the sinuses.

 

 

There have beeen several times over the past 10 years that y children had strep yet had a negative culture. They had scarltinaform rashes with huge flareups in PANDAS symptoms that resovled with antibiotics. I think the % of people who do not have increased strep titers is 37%, so negative strep titers mean nothing. Only one of my four children have had any elevated strep titers.

 

There is a blood test done by Dr. Madeleine Cunninghaam that may be something you should consider. It tests for special antibodies in the brain that indicates PANDAS.

 

Another thing you may try is to have yopur physician give you a 30 day trial of antibiotics and observe for changes.

 

 

Colleen

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Colleen,

Thanks! I'll check this out!

We are treating my son for yeast right now even though his urine and stool came back negative. He had a rash on his butt that would not respond to anything other than an anti-fungal cream but it just wasn't enough. Amazing that after 6 days the rash is fading. We are just battling the yeast die-off symptoms which are horrible.

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My son is not just like yours however I lost his connection after his vaccines at 18 months prior to that he lost words/babble after the rounds of vaccines. He became diagnosed with SPD and PDD NOS .

I knew that something was wrong on the inside and I looked to a natropath for answers one day after I gave my then nonverbal son a few drops of Grapefruit seed extract on a whim.

He spoke that day at age 2 1/2 and said "I'm stuck".

The natropath did nutritional microscopy and we placed him on a gf/cf diet and I give him daily epsom salt baths. Later visits revealed spirochetes and led me to IGENEX testing for lyme disease and coinfections. We are on a course of treatment with an ILADS trained doctor that has left him more settled and more verbal with fantastic eye contact and on his way to recovery from lyme induced autism.

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Thank you for your reply!

 

My son was tested for Lymes but came back negative.

Do you still give your son Grapefruit seed extract? I'm not familiar with it and want to know more. How do you determine how much to give and how often? What is it main purpose -- or desired outcome? Does it address hyperactivity, attention, impulsivity?

 

My son is on a strict Specific Carbohydrate Diet that is also Low Oxalate. He does have significant YEAST issues even though the lab reports indicated otherwise.

 

It just seems that every path I take leads me to dead end. Since my original post he had to be hospitalized for a complete bowel clean-out which took 72 hours!

 

We are going to seek a second opinion from another autism doctor...this is just wiping out all our funds!

 

I can't imagine having to be my son and deal with all his challenges. I feel so bad for him.

 

Thanks for the reply -- they mean a lot to us parents who want to rescue their children. Networking IS so important.

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My son is like yours AND we just got a diagnosis of PANDAS. Add aggression to the mix of the symptoms you've described ... as well as severe speech apraxia ... and that's my son in a nutshell.

 

Our dear child is on Tenex as well as Risperdal (0.5mg in pm) and Prozac (2ml in am). He has had severe bowel issues since he was 4 weeks old. We found he was allergic (confirmed by allergist) to soy, dairy, yeast, eggs, and corn. Removing those items from his diet helped the constipation somewhat, but only after we added daily probiotics (we use Pro-Bio Gold from Kirkman Labs) to his diet did we see daily BMs. His BMs are occasionally nasty (messy, large), but at least they occur daily.

 

Our son has ABA, which has significantly improved his ability to learn and communicate and function (of course, now the school wants to discontinue paying for it ... the only approach that has ever helped him). My son is 8 yrs old and we were relieved to get the PANDAS diagnosis, but we've only had the dx for a month and I don't think we're addressing it as aggressively as we could be.

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My son has never had a diagnosed case of strep. He probably had strep when he had ear infections. He has never presented w/ a classic case of strep and his strep titers are normal. He has PANDAS. His PANDAS was set off after being given the Flumist in Oct 2009. He had a lot of regressive behaviors. So much so that a neuropsychologist told us he had Aspergers. He no longer has those symptoms after being treated for PANDAS.

 

The rash on his bum sounds like perianal strep.

 

I would recommend you pursue PANDAS and/or lyme.

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