Copy of letter to Dr F

This is just for documenting purposes.

Dearest Dr. F,
Hello, my name is Kellie Haupricht and my son, Nathan, will be 15 on March 16th. (Chiari, Tethered Cord, Pseudotumor Cerebri, suspected EDS, multiple chemical sensitivity)

Nate has been through 90+ Hyperbaric treatments and counting. We’ve witnessed many improvements in Nate since HBOT treatments. The HBOT center documents every patient thoroughly (I also documented changes at home). I don’t know if any one has ever used HBOT with EDS or Chiari. We also use Therapeutic Grade Essential Oils (TGEO) to help with wound healing. He used Lavender TGE oil on Nathan’s incisions that were not healing. He did not have one infection during the many months trying to get them healed. We owe it all to the TGE oils.

Many neurosurgeons believe he needs a debridement of his decompression site every couple of years to keep things flowing properly. We have not done this as of yet. My thoughts are that the HBOT reduces swelling and heals the body with pressurized oxygen. I can’t help but wonder if he is over shunting, thus causing pain issues opposite of too much CSF. Also what if we do get him for a debridement of the surgical site … then get him in HBOT ASAP. This would assist healing his wounds faster to deter rapid progression of scar tissue growth. What are your thoughts on this?

Judy Burkholder at Sara’s Garden www.sarasgarden.org is very interested in doing research. I first met Judy when her daughter-in-law gave birth and sadly passed away. I worked at the hospital in ICU at that time. Judy is a registered nurse. She runs a HBOT (non-profit) center and has plans to expand into more holistic medicine practices at this facility.

I would really enjoy hearing your thoughts on Hyperbarics, EDS, Chiari, and scar tissue formation. I can only imagine what a difference continued HBOT treatments would make on Nathan’s quality of life if he was free of the scar tissue and had proper CSF flow to his brain. He would have the opportunity to thrive with a promising future.

I am just a mother with a MOM degree trying to find relief for my son. Nate’s sister is showing signs of EDS (in my opinion). She has problems with her hips, knees, wrists, elbows, whatever - joint de jour. She suffers from many female issues, monthly producing ovarian cysts that pop and are very painful. I personally had poly cystic ovaries and endometriosis, degenerative disk disease, fibromyalgia and my mother had fibromyalgia and pseudotumor cerebri - I could go on and on with my sisters, etc.

Any guidance and possible assistance would greatly be appreciated! Nate’s short form medical history is attached below my signature.

Respectfully yours,
Kellie Haupricht
419-822-6049


Nate’s Short Form Medical History:
· 01/2007 he was diagnosed with Chiari I and Arachnoid Cysts on the brain stem.
· 06/25/07 Decompressions surgery at Johns Hopkins by Dr. Ben Carson.
· 3 weeks later he developed Meningitis and a triple pseudomenengeocele (sp?).
· Went back to Johns Hopkins. 2nd decompression which took twice as long debreding his surgery site due to “more than normal” scar tissue growth.
· Asked Dr. Carson about the possibility of a connective tissue disorder. He grabbed Nate’s neck skin and pulled it out and said “see he is not a Gumby so he has nothing of the sort.”
· Nate can go back to playing football.
· He did great for about 6 weeks after the 2nd decompression.
· He has a HUGE 2 inch wide keloid where he had his surgery. He started going downhill again.
· Pain rages began.
· Difficulty breathing - So severe, he just wanted to die.
· At times he was out of control. What use to be a “once in a while” thing was now a daily occurrence.
· Sought assistance from Toledo area neurosurgeons.
· Went through several LP’s and weekly lumbar drains to measure his opening and daily pressures. Opening pressure in the 40’s and higher.
· Multiple Chemical Sensitivity had severe multiple reactions to several drugs. Vancomycin, Versead, Diamox, Decadron, Latex and lastly Ambien. When reading the list of rare reactions to these meds, he had them all.
· Other drugs: Normal dosage 100mg – Nate would require 2-3 x that amount for the same relief.
· His personality and behavior problems worsened.
· In constant pain.
· Toledo neurosurgeons diagnosed him with ADHD, Autism, and on and on.
· Pediatrician did not agree with their off-the-wall diagnosis.
· Tried to find another neurosurgeon with no luck.
· By the Grace of God, some friends we were able to get Nate in to see Dr. Bolognese.
· Dr. Bolognese’s diagnosis: Chiari, Tethered Cord, Pseudotumor Cerebri, Suspected EDS, multiple chemical sensitivity.
· March of 2008 we spent the month in NY. Nate had a Tethered Cord surgery.
· He had complications that we thought were going to result in paralysis.
· A week later they found the problem and went back into the Lumbar spine to correct it and also put in a VP shunt, non programmable, medium flow in his right ventricle. Home by the end of March 2008.
· Still having pressure problems (I believe are “global” pressure issues).
· Our pediatrician did not feel comfortable prescribing narcotics for him and at the dosages he needed. Nathan hated taking them. We did work out a pain scale based on what med he took. Eventually ran out of the meds sent home with him from NY.
· Made an appt with a pediatric pain clinic in Michigan - 3 months out.
· Pain rages included falling more than before. Spoke with Charnel Jerome and she thought of trying orthostatic BP’s.
· 5 min orthos within normal range. At 60 second intervals they were off the charts! His heart rate would Jump and his BP was all over the place.
· Received referral to see pediatric Cardiologist. Spending 4 hours at cardiologist office they did EKG and a echo. Met the Doctor and he said syncope spells. I about possible POTS issues. He said that he saw no abnormalities in his EKG’s and Echo’s to point that way. I asked him what his BP was when we came in as I knew they did not take his BP at all! He gave us a Rx and I filed it.
· 07/2008, Nate was still actively bleeding from his abdomen incision, incisions on his head from the shunt, and a spot from a fall in September of 07.
· With a script from Dr. Bolognese, Nate began Hyperbaric Treatments.
· By the 4th day (8 HBOT dives) his incisions were hardened for the first time.
· By the 6th day they were healed (pictures attached).
· By the 2nd week Nathan woke up and said that he did not hurt that morning – First time he had ever done that.
· He completed a total of 40 dives at that time doing 2 per day for 20 days straight.
· Only using the strong liquid Oxydose med maybe once a week. Other than that it was 800mg Motrin or Tylenol.
· After 2 months, pain and pain rages returned.
· He had MRI’s right before he started back on HBOT treatments. MRI showed he was now slightly over draining on his right.
· 2nd set of 40 HBOT treatments.
· He felt very good and the pain level was tolerable - Best part was the pain rages were gone!
· Minimal pain meds once in a while. He does take his normal 800mg in the evenings as he has more pain toward the end of the day.
· NO pain rages since October!
· He is what we call a walking popcorn machine. Joints popping when he walks all the time. When he makes a fist it sounds like every joint in his hand is popping.
· History of several broken bones from strange falls. All fractures were in his growth plates.
· Pain came back. Started him on HBOT last week.
· Told by many neurosurgeons that he needs a debridement of his decompression site every couple of years to keep things flowing properly. We have not done this. My thoughts are that the HBOT reduces swelling and heals the body with pressurized oxygen. I am wondering if he is over shunting thus causing pain issues opposite of too much CSF. Also what if we do get him for a debridement of the surgical site … then get him in HBOT ASAP. This would assist healing his wounds faster to deter rapid progression of scar tissue growth. What are your thoughts on this?
· Spect scan before he started HBOT in July of 07.
· 40 treatments
· Repeated the Spect scan.
· Results showed several of the dead areas are now alive!
decompression site
July 07 site before HBOT
4 days into HBOT
A look inside of the HBOT Chamber

88 and counting

Thats right we just completed his 88th dive. We will only go till Friday this week then take off and see if this keeps him on a level playing field. Yesterday and today he had a great attitude and his invisible sheild has come down more and more. Yesterday he wanted to play tickle and wanted to walk behind me and try to scare me. This is HUGE! In order for him to do these things he has to touch a person and then allow them to touch him. You see if this were a 4 year old then it would be so cute because it is yet another personal area that he would be expanding on by playing boundries sort of a thing. But this child is 15 and has never ever wanted to hug or be hugged. He has never ever wanted to sit on the couch with some one else. He definately would never want to come as close to some one and say BOo behinde their back. These things are little to some but for us they are HUGE! The HBOT is at work yet again.

Now the theory we are thinking about. The last MRI Nate had said that his shunt was slightly overdraining. That means to me that the HBOT is working. But we can not turn his shunt off because it is a nonprogramable one. Do we go in there and have it tied off? If we go that far do we go back into his decompression site and debreed it from adheasions and scar tissue? After such do we throw him right into HBOT and see if that atops the growth of scar tissue? I will let you know more on what we find out about this idea.

On the other hand his BP is not doing so well. His BP the past 2 days has been going up. Tonight in a bit I am going to do some orthos again and see what is going on.

Again I will be back.

#81 and #82 HBOT Done 2/9/09

We did 2 treatments yesterday. The past 2 weeks Nate has been having some increased pain that he needed Vicodin and Flexeril. He does not want to take the big guy liquid med but he said that he was close to needing it. No pain rages ! We did not want to wait till those started up again. His attitude and demeanor is going down as well.

We can't get back in till Friday. We will do 2 dives then and play it by ear for the next week. We want to see how we can do a booster for him.

My thoughts are he needs a good solid week of treatments. With the EDS he has so much scar tissue in the hind brain area. The scar tissue is causing flow issues. His last MRI showed that the VP Shunt is slightly over draining on the right side. But on the other hand he is having "Global" Pressures. So do we go back in the head and clear out the scar tissue, then jump into HBOT ASAP to hopefully heal faster so the scar tissue won't grow? I don't know enough about EDS to know the etiology of growth of scar tissue. So it looks like I am going to have to do some more research on this.

If anyone has any suggestions please let me know. Right at this moment I do not know any one that has used HBOT for treatment of EDS.

I forgot that last night he was dizzy. His pupils were noticeably uneven. This is the first time that I noticed this like that. I know that it is neurological but not sure what that means. I should call his ped to see or just for them to document as well. BP has been ok. Yay for that.

I will post more as we go.

HBOT

A group of volunteer attorneys, led by Richard P. Console Jr. is organizing a class action lawsuit against Medicaid and potentially other health insurance carriers to compel them to pay for HBOT and potentially other treatments for children with Cerebral Palsy, autism, brain injury, CMI, EDS, Lime, and similar diagnoses. Richard got involved with HBOT when he represented the 2 year old daughter of his friend and client, Florence.
Florence’s daughter suffered a brain injury and was denied HBOT treatments despite the fact that the first round of treatments had shown a marked improvement.
There will not be a cost to participating parents who would like to be class members, because it is a pro bono (volunteer) project, In fact, any attorney fees generated will be donated by MUMS and other charitable organizations. Call Richard Console at 800-690-4033 to see if your child qualifies.
Being a class member will not take up your time or effort, because it is a class action.
The primary goal of the class action is to get this therapy paid for, for all class members who want it, and to have reimbursement and recognition of HBOT nationally. I urge you to participate, for your child and all children that could benefit from this treatment. Please call Richard at 800-690-4033 as soon as possible for a free telephone screening to see if you qualify to be a class member. If you are accepted please leave a message with MUMS 877-336-5333, so we can keep track of those involved. Thank you for you help. Julie Gordon

Julie Gordon is the editor and founder of MUMS (National Parent to Parent Network Matcher). She has a disabled daughter. She is nationally recognized throughout the HBO community and participates in many speaking engagements. She is a strong advocate for children.
If your heart is lead to help these children, please call the numbers listed above.

For more info visit www.sarasgarden.org or give me a call.
Thank you
Kellie Haupricht 419-822-6049